KFF designs, conducts and analyzes original public opinion and survey research on Americans’ attitudes, knowledge, and experiences with the health care system to help amplify the public’s voice in major national debates.
Prepared for: The Henry J. Kaiser Family Foundation
The Henry J. Kaiser Family Foundation, based in Menlo Park, California, is an independentnational health philanthropy and is not associated with Kaiser Permanente or Kaiser Industries. Established in 1948 by industrialist Henry J. Kaiser and his wife Bess, the Foundation focusesits work on four main areas: health reform/health policy, reproductive health, HIV, and health anddevelopment in South Africa. The Foundation also maintains a special interest in health care inits home state of California.table of contents
Welfare reform, technically the Personal Responsibility and Work OpportunityReconciliation Act of 1996 (PRA), was signed into law on August 22, 1996. UnderPRA most legal immigrants arriving after August 22, 1996 will no longer be eligible forcash assistance and food stamps and are effectively barred from other services, including Medicaid, forat least a decade.1 Legal immigrants residing in the United States on August 22, 1996 will also losetheir entitlements unless they meet certain exemptions. A critical exemption enables legal immigrantswho have worked for forty quarters (10 years) in Social Security covered employment to retainbenefits. The various provisions concerning legal immigrants are complicated and the ensuing confusionhas already resulted in the denial of assistance to some qualified immigrants.
Relative to the federal budget, the reductions in welfare expenditures are modest. To theindividuals who depend on them they are of enormous importance. Most of the cuts come in the formof reduced benefits and time limits. The cuts for legal immigrants are especially severe: theCongressional Budget Office estimates that over the first six years the Personal Responsibility andWork Opportunity Reconciliation Act of 1996 will reduce federal spending by nearly $54.2 billion fromwhat would have been spent.2 About 44 percent of the total reductions ($23.8 billion) over the first sixyears, will be borne entirely by legal immigrants.
In 1995, there were an estimated 1.1 million legal immigrants age 65 or older. Elderly legalimmigrants are concentrated in a small number of states. In fact, more than one-half of the elderly legalimmigrant population lives in three states and 80 percent live in seven states. This suggests that thebroader economic consequences of these cuts will fall disproportionately on the citizens of communitieswith immigrant populations.
The portrait that emerges from the analysis suggests that the typical elderly legal immigrant didnot come to the United States because of its welfare programs. More than half of elderly legalimmigrants arrived in the United States over twenty years ago, and over three-quarters arrived prior totheir 65th birthday. Some elderly legal immigrants have served in the military, most have worked andpaid taxes, and more than three-quarters paid sufficient FICA taxes to earn Social Security andMedicare benefits. As a result, most elderly legal immigrants will not lose public assistance but the mostvulnerable those without Social Security and Medicare might lose some or all of their publicassistance. They are likely to lose SSI, food stamps, and other means-tested benefits. They could alsolose access to Medicaid, the principal source of nursing home care, depending on legislative andadministrative decisions made by each state.
Elderly legal imigrants are substantially more likely than elderly citizens to rely upon Medicaidbecause of their lower income levels. They are also more likely than elderly citizens to be uninsured. As a group, elderly legal immigrants were nearly twice as likely to live in households with incomesbelow the poverty level, and are more likely to be receiving some form of public assistance than elderlycitizens. The average family income among elderly legal immigrants is about half that of elderly citizens. Even among the working elderly, average monthly earnings for legal immigrants were about 66 percentless than elderly citizens. As a consequence, legal immigrants are nearly twice as likely to be poor aselderly citizens (24% versus 14%).
Elderly legal immigrants were found to be more likely than elderly citizens to have long-termcare needs. An estimated 80,000 to 90,000 nursing home residents in 1995 were elderly legalimmigrants; relying principally upon Medicaid to finance their care. The welfare reform law enacted lastyear permits states to discontinue Medicaid eligibility and coverage for legal immigrants, including thosein nursing homes. Those in nursing homes who lose Medicaid coverage have limited options. It isunlikely that the typical nursing home resident will have the physical and/or cognitive ability to become anaturalized citizen, in order to assure Medicaid coverage.Public assistance is critical for many elderly legal immigrants. Given the concentration of elderlylegal immigrants within families and specific communities, the implications of these changes go beyondthe elderly legal immigrant and their families, but will also affect the citizens in communities in which theylive.
Public assistance is critical for many elderly legal immigrants. Given the concentration of elderly legal immigrants within families and specific communities, the implications of these changes go beyond the elderly legal immigrant and their families, but will also affect the citizens in communities in which they live.
Introduction
Welfare reform, or technically the Personal Responsibility and Work OpportunityReconciliation Act of 1996 (PRA), was signed into law on August 22, 1996. This lawfundamentally changed the nature of federal public assistance by eliminating some federalentitlement programs and delegating to the states authority over who would be eligible to receive publicassistance. In addition, federal money provided to states and to beneficiaries for public assistance wasreduced. The Congressional Budget Office estimates that over the first six years the PersonalResponsibility and Work Opportunity Reconciliation Act of 1996 will reduce federal spending bynearly $54.2 billion.3 About 44 percent of the total reductions ($23.8 billion) over the first six years willbe borne entirely by legal immigrants. Eliminating legal immigrants from benefits reduces the federaldeficit annually by $5.1 billion when fully phased-in in 2002.4
Relative to the federal budget, these expenditure cuts are modest. However, to the individualswho depend on them they are of enormous importance. Elderly immigrants are particularly vulnerable,based on their service and their income needs. Analysis indicates that the majority of elderly legalimmigrants come to the U.S. long before they are elderly or in need of health or long-term care. Eliminating public support for these services especially for people already residing here impactsimmigrants, their extended families, and their communities, for circumstances beyond their control.
Elderly Immigrants and the Personal Responsibility and Work Opportunity Reconciliation Act
The Personal Responsibility and Work Opportunity Reconciliation Act (PRA) of 1996 eliminated theopen-ended federal entitlement program of Aid to Families with Dependent Children (AFDC) andreplaced it with Temporary Assistance to Needy Families (TANF), a block grant with a fixed amountof funding given to states to provide time-limited cash assistance to low-income families. The new lawalso fundamentally alters access to federal assistance for legal immigrants.
The PRA distinguishes between two classes of immigrants unqualified and qualified. Unqualified immigrants are effectively illegal immigrants and qualified are legal immigrants.5 Prior toPRA, illegal immigrants were not eligible for most federal means-tested benefits except for emergencymedical care, federally subsidized housing, and services related to the protection of life and safety. Illegal immigrants could, however, receive some forms of assistance by being categorized as”permanently residing under color of law” (PRUCOL). The new law eliminates this category, makingthem ineligible for benefits.
Under prior law, legal immigrants or those considered qualified in the PRA, could apply forpublic assistance.6 This too was changed under PRA. To understand these changes, one mustdifferentiate between legal immigrants who were receiving public assistance on August 22, 1996 andthose who were not. An overview of the changes in law are provided in Figure 1.
Figure 1Restrictions on Public Assistance to Immigrants Under the Personal Responsibility and Work Opportunity Reconciliation Act of 1996 Benefit Aliens permanently residing under color of law (PRUCOL)1 Legal Immigrants receiving benefits before August 22, 1996 Legal Immigrant that arrived before August 22, 1996, but not receiving benefits Legal immigrant arriving after August 22, 1996 Refugee Supplemental Security Income Immediate cut-off Cut off over the next year, unless in exempt category2 Ineligible until naturalization, unless in exempt category2 Ineligible until naturalization, unless in exempt category2 Eligible for first five years after entry, then denied until naturalization Food Stamps Immediate cut-off Cut off over the next year, unless in exempt category2 Ineligible until naturalization, unless in exempt category2 Ineligible until naturalization, unless in exempt category2 Eligible for first five years after entry, then denied until naturalization Medicaid Immediate cut-off State option to continue, unless in exempt category5 States have the option to bar coverage until naturalization5 Ineligible for first five years5 after entry, then subject to deeming.4 States have the option to bar coverage until naturalization.5 Eligible for first five years after entry, the state option to continue State and Local government assistance Immediate cut-off State option to continue, barring exemptions listed below State option to continue. State may require deeming State option to continue. State may require deeming4 Eligible for first five years after entry, then state option to continue1. Under prior law, certain illegal immigrants could be eligible for specific public benefits if they were considered to be “permanently residing under color of law” (PRUCOL). Under the new law, this category of immigrants has been eliminated, making this group like other illegal immigrants ineligible for benefits.
2. The following categories of immigrants are exempt from restrictions to SSI and Food Stamp programs during their first five years in the country: refugees, people seeking asylum, persons granted “withholding of deportation.” Also exempt are those legal immigrants who are active duty members of the U.S. armed forces or honorably discharged U.S. veterans and their spouses and unmarried dependent children. The law also exempts immigrants who have worked forty quarters (ten years) in the U.S.
3. Aliens exempt from the five-year bar include the same categories that were exempt from restrictions on SSI and Food Stamps. However, there is an additional exempt category of Cuban and Haitian entrants who are paroled into the U.S. for at least one year.
4. The same categories exempt from the five-year bar, except for veterans and their families, are also exempt from sponsor-to-alien deeming. Veterans are the only class of immigrants who are subject to deeming, but not to the five-year bar.
5. States must continue to provide Medicaid to legal immigrants who are veterans or on active military duty, refugees, and persons who have been granted asylum within the last five years, and those who have worked for at least ten years within the United States.
Current Legal Immigrants
The PRA would not change the eligibility for public assistance forlegal immigrants who meet specific exemptions. One of these exemptions is having worked for morethan forty quarters in Social Security covered employment. Since most elderly legal immigrants worked, they are more likely to be exempt. Legal immigrants whowere unable to work long-enough or who did not meet one of the other exemptions could lose benefitsor become ineligible to apply for benefits. If they were receiving benefits on August 22, 1996, benefitswill be terminated subsequent to a case-by-case review now underway to determine whether there isany basis for continued eligibility (for example, legal immigrants who served in the military or who havebeen in Social Security-covered employment for forty quarters).7 If they do not fall into one of thoseexempt categories and are not naturalized by the time their cases are reviewed, they will lose theirbenefits.8 Legal immigrants receiving Medicaid on August 22, 1996 continued to receive benefitsthrough January 1, 1997. After this date the State may decide whether to continue medical assistancethrough Medicaid for this group of immigrants (most states are expected to continue Medicaid for thisgroup). Elderly immigrants who arrived prior to the law s enactment (August 22, 1996), and who atthat time were not receiving assistance, immediately become ineligible for applying for food stamps andSSI, unless they, too meet one of the exemptions.9
Confusion over these provisions, however, has already resulted in nursing homes denyingaccess to legal immigrants with Medicaid coverage even when the state has made it clear that they willcontinue their Medicaid coverage.10 For current beneficiaries whose Medicaid was based on theirreceipt of SSI, however, the state will need to find another eligibility criterion (of which there areseveral) if they are no longer qualified for SSI.11 However, this process too could cause some elderlylegal immigrants to lose their access to Medicaid.
Future Legal Immigrants
Elderly legal immigrants arriving on or after August 22, 1996,are prohibited from receiving SSI or food stamps until they become naturalized citizens or fit one of theexemptions, such as working forty qualifying quarters (which takes a minimum of ten years).12 They arealso restricted from applying for Medicaid, Title XX-funded social services,13 Temporary Assistancefor Needy Families,14 and other federal means-tested benefits15 (other than SSI and food stamps), for aperiod of five years on entry into the U.S. as a legal immigrant (States have the option to extend thisrestriction until naturalization). After the five-year bar expires, legal immigrants must include thefinancial resources of their sponsor in their application for assistance.
This provision is called “deeming.”16 Given the low income and asset limits for means-tested programs such as Medicaid, “deeming,” is likely to keep most very poor legal immigrants from becoming eligible for assistance until they become citizens or fulfill some other criterion like working forty quarters in covered employment.17 Prior to PRA, legal immigrants were not barred from applying for assistance and although their sponsor s income was deemed, it was done for just the first three orfive years (depending on the public assistance sought).
The meaning of the PRA and the procedures needed to implement it are still subject to politicaldebate and judicial interpretation. The President and the Congress are revisiting some provisions inparticular, the elimination of benefits for current legal immigrants and the access to benefits for legalimmigrants here but not receiving benefits on August 22, 1996. The outcome is likely to impact currentelderly legal immigrants, but unlikely to change provisions for future elderly legal immigrants. To betterunderstand the consequences of this legislation, the following describes where and who elderly legalimmigrants are and their need for assistance.
A Profile of Elderly Legal Immigrants
The Size and Distribution of the Population
Nationally there are relatively few elderly legal immigrants. Census data suggest that in 1995 therewere about 1.1 million elderly legal immigrants.18 In 1995, elderly legal immigrants representedabout 3.2 percent of the country’s elderly population. Although elderly legal immigrants live in everystate, some states have a particularly high concentration. More than one-half of elderly legal immigrants(60.4 percent) lived in three states California, Florida, and New York. Adding Texas, New Jersey,Illinois and Massachusetts accounted for nearly 80 percent of elderly legal immigrants (see Table 1).
In most states, the elderly legal immigrant population constitutes less than 1 percent of theelderly population. However, in these seven states (see Table 1) and in nine others, whose numbers ofimmigrants are small, elderly legal immigrants are more than 3 percent of the state s elderlypopulation.19 For example, Hawaii has fewer than 14,000 elderly legal immigrants, but they constituteover 9 percent of the state s elderly population. Since the concentration of elderly legal immigrants isconsistent with that of legal and probably, illegal immigrants of all ages, the impact of the PRA on thecommunity is substantially larger than what just happens with elderly legal immigrants. Communitieswith a large proportion of people who need public assistance are less likely to have public and privateresources to assist those in need.
Table 1Distribution of Elderly Legal Immigrants Ranked by State, 1995. State Elderly Legal Immigrants Proportion of Elderly California 358,720 10.4% Florida 159,007 6.0% New York 157,778 6.5% Texas 74,466 3.9% New Jersey 49,416 4.5% Illinois 46,770 3.2% Massachusetts 34,145 4.0% All other States 237,254 1.2% Total 1,117,556 3.2%Source: National Academy on Aging estimates.
Demographic Characteristics
Table 2 provides a basic overview of the elderly legal immigrant population. Elderly legalimmigrants are primarily white, female, and between the ages of 65 and 74. About 61 percent ofelderly legal immigrants in 1993 were women and 68 percent were white. Compared to elderlycitizens, elderly legal immigrants are substantially more likely to be Asian or a Pacific Islander. Legalimmigrants are less likely to be married and living with their spouse, and are more likely than elderlycitizens to be widowed, divorced, separated, or never married.
Table 2Basic Demographics of Elderly Citizens and Legal Immigrants(Percentage Distribution) Race Legal Immigrants Citizens White 68.0 90.0 Black 2.5 8.5 Asian/Pacific Islander 29.4 1.3 Gender Legal Immigrants Citizens Male 39.0 42.0 Female 61.0 58.0 Age Legal Immigrants Citizens 65-74 60.0* 58.4* 75 and older 40.0* 41.6* Marital Status Legal Immigrants Citizens Married, spouse present 45.0 55.0 Widowed 37.0 33.0 Divorced, separated, or never married 14.8 11.1*The differences in age distributions were not statistically significant.Source: National Academy on Aging tabulations of the 1993 Survey of Income and Program Participation.
Figure 2 provides information on the country of origin of elderly legal immigrants. The largestnumber of elderly legal immigrants originated from Asia or a Pacific Island (29 percent), followed byEurope (19 percent), and then Mexico (18 percent). Another 11 percent were from Cuba, and lessthan 5 percent were from Central or South America.
When Did the Elderly Legal Immigrant Arrive in America?
People have expressed concern that elderly legal immigrants enter the United States after havingretired from the work force of their own country. While this assumption could be true for some, itdoes not hold for the majority of elderly legal immigrants. More than half of elderly legal immigrantsarrived in the United States over twenty years ago, and over three-quarters arrived prior to their 65thbirthday (see Figure 3). About 22 percent did arrive after they were age 65.
The May/June 1998 edition of the Kaiser Family Foundation/Harvard Health News Index includes questions about major health stories covered in the news, including questions about Viagra and Social Security. The survey is based on a national random sample of 1,202 Americans conducted June 12-18, 1998 which measures the public’s knowledge of health stories covered in the news media during the previous month. The Health News Index is designed to help the news media and people in the health field gain a better understanding of which health stories in the news Americans are following and what they understand about those health issues. Every two months, Kaiser/Harvard issues a new index report.
conomic status, especially in old age, is often dependent on a lifetime of choices and opportunities. Retirement income is directly dependent on previous labor force experiences, savings, and thehealth and insurance coverage of family members. Good health and high educational attainment tend toresult in better employment opportunities, a greater likelihood of a pension, and increased prospects forsaving. Poor health, the death of a spouse, lack of education, or poor employment opportunities canmitigate the opportunity for a secure retirement income.
Table 3 provides a profile of the educational attainment of elderly citizens and legal immigrants. Over 30 percent of elderly legal immigrants had not gone past the sixth grade, compared to 7 percentof elderly citizens. Interestingly, more than 8 percent of elderly legal immigrants had earned a law,medical, dental, or doctorate degree. In contrast, less than 2 percent of elderly citizens had earnedprofessional or academic doctorate degrees.
Table 3Educational Attainment of Elderly Citizens and Legal Immigrants(Percentage Distribution) Educational Attainment Legal Immigrants Citizens 6th grade or less 30.6 7.2 Grades 7-11 11.6 29.9 High school graduate 40.8 35.7 Some college through a Masters degree 9.2 25.5 Professional degree (MD, DDS, JD) or Ph.D. level. 8.4 1.8 Source: National Academy on Aging tabulations of the 1993 Survey of Income and Program Participation.
Consistent with educational attainment, elderly legal immigrants were more likely than elderlycitizens to be poor. Figure 4 shows that the average family income among elderly legal immigrants isabout half that of elderly citizens ($16,934/year for legal immigrants and $12,408 for citizens). Evenamong working elderly, average monthly earnings for legal immigrants were about 66 percent less thanelderly citizens (about $950 a month compared to $1,438, in 1993).20 As a consequence, legalimmigrants are nearly twice as likely to be poor as are elderly citizens (24 percent verses 14 percent). This is true even though elderly legal immigrants were more than three times as likely to be living withothers, including an adult child who may be working.21
Missing from this portrait are the employment histories of elderly legal immigrants. About 10percent of elderly legal immigrants in 1993 were working. Three-quarters (76 percent) of the elderlylegal immigrants had worked long enough under Social Security-covered employment to becomeentitled to Social Security benefits.22 This requires paying a minimum amount of FICA taxes in fortydifferent quarters (i.e., working at least for ten years). However, it should be noted that Social Securitybenefits alone do not necessarily provide income that is above the poverty threshold. A lifetime of low-paying jobs will result in Social Security benefits that are below poverty. In 1995, almost two-thirds(63 percent) of all elderly Supplemental Security Income (SSI) beneficiaries were also receiving SocialSecurity benefits.
The PRA did not change legal immigrant’s entitlement to earned benefits such as Social Securityand Medicare. By working enough years, like citizens, legal immigrants can collect SocialSecurity retirement benefits at age 62 and, hence, Medicare benefits at age 65. As already indicated,three-quarters of elderly legal immigrants had worked long enough in covered employment to beentitled to Medicare. Through the exemption, these elderly legal immigrants should be able to retainMedicaid or obtain Medicaid (as well as SSI and other benefits) in the same way as do citizens. However, for the 24 percent of the elderly legal immigrants who have not worked long enough to beentitled to Medicare, they may lose their access to Medicaid, depending on how states decide to treatlegal immigrants under their Medicaid program.
Figure 5 shows the distribution of Medicare and Medicaid coverage among elderly legalimmigrants and citizens. In 1993, virtually all (98 percent) elderly citizens were Medicare beneficiaries;by comparison, 76 percent of elderly legal immigrants were also beneficiaries. It should be noted thatMedicare beneficiaries also have private supplemental health insurance policies (Medigap) whichprimarily covers Medicare copayments and deductibles. About 22 percent of elderly legal immigrantsand 77 percent of elderly citizens had some form of private health insurance.23
Overall, Medicaid covered 64% of all elderly legal immigrants. By comparison, Medicaidcovered 12 percent of all elderly citizens. However, 16 percent of elderly legal immigrants relied onMedicaid alone compared to less than 1 percent of all elderly citizens. Moreover, 8 percent of elderlylegal immigrants and 2 percent of elderly citizens had neither Medicare nor Medicaid. It is these lattertwo groups, the 16 percent of elderly legal immigrants with Medicaid, but no Medicare and the 8percent with neither Medicare nor Medicaid who will no longer be eligible for cash assistance, foodstamps and other means-tested benefits.
Our analysis shows that most elderly legal immigrants did not come to the U.S. to gain accessto Medicaid benefits. As shown previously, more than three-quarters of elderly legal immigrantsarrived in this country before they were elderly. More importantly, legal immigrants who came to theUnited States after the age of 65 were not more likely than those who entered the United Statesbetween the ages of 40 and 64 to be receiving Medicaid benefits when they were elderly. Elderly legalimmigrants arriving between age 41 and 64 were 3.5 times more likely than those arriving before age40 and 2 times more likely than those arriving after age 65 to be Medicaid beneficiaries. Elderly legalimmigrants who arrived here when they were under 40 years old, however, were less likely than thosewho arrived after age 40 to be Medicaid beneficiaries (when elderly).
Preliminary analysis also suggests that, overall, elderly immigrants are more likely than elderlycitizens to need long-term care. Immigrants were twice as likely as citizens to need assistance withpersonal care.24 These findings are consistent with the educational attainment and income distribution ofelderly legal immigrants. Regardless of citizenship, people with less schooling generally have lessincome and poorer health.25 If an elderly legal immigrant with health care needs is not providedbenefits, their access to care will be seriously impeded. Although there are a few safety-net providerswho will provide acute care to the uninsured, without insurance or public coverage it is impossible toobtain a regular source of care. Having a regular source of care is necessary for chronic healthconditions. Without substantial resources or access to Medicaid, it is impossible to obtain long-termcare.
Unlike other types of health care, there is no last resort for long-term care generally and nursinghome care, in particular the nursing home is the last resort. Nursing homes routinely use ability to payto decide who to accept. They also can dismiss people who outlive their resources. Nursing homeresidents include some of the most frail and cognitively impaired people. The typical nursing homeresident is over age 85 and widowed. Nursing home residents are less likely to have any adult children,and if they do, their adult children are also likely to be elderly and have their own medical conditions.
Nursing home costs can easily exceed $3,000 a month, beyond the reach of most very oldpeople, and especially most legal immigrants. An estimated 80,000 to 90,000 nursing home residents in1995 were elderly legal immigrants.26 While this is less than 10 percent of all elderly nursing homeresidents, it does represent nearly $2.5 billion in revenues to nursing homes.
Elderly legal immigrants who have not worked long enough to become entitled to Medicare arelikely to lose cash assistance and food stamps and will be dependent on State action to ensure theiraccess to Medicaid. It is this population that is under discussion in the budget negotiations currentlyunderway in the U.S. Congress. In the non-binding budget agreement between the Congress and thePresident, it was agreed that PRA would be amended to restore SSI and Medicaid to legal immigrantswith disabilities. The agreement covered legal immigrants who were receiving SSI on August 22, 1996and who were legal immigrants on August 22, 1996, but not receiving SSI on that date but whosubsequently become disabled. In the bill that is now moving through Congress, the PRA would beamended to include just the first category-legal immigrants receiving SSI on August 22, 1996. Elderlypeople receiving SSI are also eligible for Medicaid. Even if both provisions under discussion weremade, legal immigrants arriving after August 22, 1996, regardless of their ensuing health care needs,could, depending on the State s actions, be denied access to Medicaid unless they had worked 40quarters or become naturalized prior to needing medical assistance.
This paper provides a portrait of the lives of elderly legal immigrants. Reflecting on their livesoffers a glimpse at the life ahead for younger immigrants arriving today. The findings in thispaper strongly suggest that the elderly legal immigrant did not come to the United Statesbecause of its welfare program. Most of them arrived here more than two decades earlierand before the age of 65. Some elderly legal immigrants served in the military,27 most worked, and, asa consequence, they paid taxes. Most raised children and because so many elderly legal immigrants areliving in households with children, they are probably helping to raise their grandchildren.
Elderly legal immigrants as of the day the PRA was enacted will retain access to publicassistance if they meet specific exemptions; those arriving after August 22, 1996 will face newprovisions that will effectively bar them from assistance for at least a decade if they are able to find andaccumulate forty quarters of Social Security covered employment during that time or until they becomenaturalized. Some immigrants will no longer be considered legal and are in the process of losing theirbenefits. These immigrants are receiving benefits due to special provisions under PRUCOL.
Legal immigrants receiving benefits are now having their cases reviewed and will be deniedcoverage unless they meet specific exemptions.28 One of those exemptions is having paid FICA taxesfor forty quarters. Because of this exemption, more than three-quarters of the elderly legal immigrantsare likely to remain entitled to their benefits. However, because of confusion about the law, some legalimmigrants entitled to benefits may think they are not entitled or may find that they are denied servicefrom providers concerned about being reimbursed.
About a quarter of current elderly beneficiaries, however, did not work long enough and theywill not only lose access to SSI and food stamps but they could, depending on what happens in thestate they live, lose access to Medicaid. Elderly legal immigrants seeking public assistance after August22, 1996 are barred from applying for Medicaid for 5 years, after which they must include theirsponsor’s resources in their application. They will also be ineligible for food stamps and cashassistance until they are naturalized or unless they are able to find Social Security covered employmentfor 40 quarters.
Despite having worked, elderly legal immigrants were more likely than elderly citizens to bepoor. Elderly legal immigrants have lower incomes because they have, on avergae, fewer years ofeducation and language and cultural differences may have hindered employment opportunities. Thissuggests that if legal immigrants found work, it was more likely to be low-paying and without benefits. Limited employment opportunities make it that much more difficult to maintain an adequate level ofretirement income once one has left the labor force.
In the future, the proportion of poor elderly immigrants not eligible for public assistancedepends on how legal immigrants respond to the law and on their ability to find and maintainemployment. Future legal immigrants will be barred from Medicaid for five years and will require theinclusion of their sponsor s resources when they apply thereafter. Deeming of their sponsor sresources is likely to keep many elderly legal immigrants ineligible for assistance. Alternatively they willhave to become a citizen before applying for public assistance. Citizenship requires five years of legalresidency, being able to read and write simple English, and being able to answer basic questions aboutU.S. history and the government.29 Clearly, some of the same factors that hinder employmentopportunities, such as reading and writing English, may be barriers to obtaining citizenship.
Barring access to benefits for the first five years, and then until naturalization or until they haveaccumulated forty quarters of work, leaves substantial periods in which people are vulnerable. Accidents and illness can occur at any time. People at any age can find themselves in need of acute orlong-term care. Without public or private coverage, this care is beyond the financial means of virtuallyeveryone.
The Personal Responsibility and Work Opportunity Reconciliation Act of 1996 fundamentallychanged the nature of public assistance. Although the cuts in federal spending on public assistancewere relatively small, a substantial portion of the cuts fall on legal immigrants and their extended families. As shown in this profile, this public assistance is absolutely critical for many elderly legal immigrants. Given the concentration of elderly legal immigrants within families and specific communities, theimplications of these changes go beyond the elderly legal immigrant and their families, but will also affectthe citizens in communities in which they live.
Footnotes
1. Technically, the bar from Medicaid is five years, but applicants must include the resources of their sponsor after the five-year bar, for as long as they remain legal immigrants, or until they have worked and paid FICA taxes for at least forty quarters, which takes at least ten years. Legal immigrants are barred from Food Stamps and SSI until they become citizens (which takes a minimum of five years) or until they have paid FICA taxes for at least forty quarters.
2.Federal Budgetary Implications of the Personal Responsibility and Work Opportunity Reconciliation Act of 1996, Congressional Budget Office, December 1996. Summary Tables 1 and 2.
3.Federal Budgetary Implications of the Personal Responsibility and Work Opportunity Reconciliation Act of 1996, Congressional Budget Office, December 1996. Summary Tables 1 and 2.
5. The category of “unqualified aliens” includes nonimmigrants, applicants for asylum, registry, cancellation or removal, or adjustment of status, aliens granted deferred action, family unity, temporary protected status or an order supervision, and aliens “permanently residing under the color of law (PRUCOL).” See Charles Wheeler and Josh Bernstein, New Laws Fundamentally Revise Immigrant Access to Government Programs, National Immigration Law Center, November 8, 1996, p. 7.
6. “Qualified aliens” are lawful permanent residents, refugees, persons granted asylum, withholding of deportation, or conditional entrant status; persons paroled into the United States for at least a year, and certain battered spouses and children [PRA Sec. 431(b)].
7. The categories of immigrants who are exempt from this provision during their first five years in the country include refugees, people seeking asylum, and persons granted “withholding of deportation.” Also exempt are those legal immigrants who are active duty members of the U.S. Armed Forces or honorably discharged U.S. veterans and their spouses and unmarried dependent children. The bill also exempts immigrants who have worked forty quarters (ten years) in the United States [PRA Sec. 402(a)(2)]. Also exempt are Cuban and Haitian entrants, as defined in Section 501(e)(2) of the Refugee Education Assistance Act of 1980, who are paroled into the United States for at least one year [PRA Sec. 403(b)(1) and Sec. 403(b)(2)].
8. It should be noted that while refugees and those seeking political asylum are exempt from the bar on benefits for five years, it takes at least seven for them to become naturalized citizens. As of June 10, 1997 the Budget Reconciliation bill now moving through Congress, includes a provision to change the five year exemption for refugees, asylees, and persons granted withholding of deportation, to seven years.
13. “Title XX of the Social Security Act provides block grants to the states that they use for a wide variety of purposes, including child care, in-home care for disabled persons, programs to combat domestic violence, programs for abused and neglected children, [etc.]” (Social Security Act, Title XX, 42 USC Sec. 303, et seq.).
14. Temporary Assistance for Needy Families or TANF replaced AFDC which provided cash assistance to low-income families with children. Most elderly, however, were not eligible for AFDC.
15. “The term ‘federal means-tested benefit’ is not defined in the final version of the legislation. The term was deleted from the bill because of a procedural rule that effectively prevents a budget bill from legislating on programs that do not involve direct spending. The term will likely be interpreted to include Medicaid and TANF services; other means-tested programs, such as food stamps and SSI, are barred to legal immigrants under separate provisions.” (Wheeler and Bernstein, Op. Cite., p. 15.)
16. Programs from which states are not allowed to deem a sponsor s income to the applicant’s income include emergency medical assistance; short-term, non-cash, in-kind emergency disaster relief; immunizations with respect to immunizable diseases and testing and treatment of symptoms of communicable diseases, whether or not such symptoms are caused by communicable disease; certain community-based programs, services, or assistance designated by the attorney general; school lunch and breakfast programs; and child nutrition programs [PRA Sec. 422(b)].
17. The same categories exempt from the five-year bar, except for veterans and their families, are also exempt from sponsor-to-alien deeming. Veterans are the only class of immigrants who are subject to deeming, but not to the five-year bar [PRA Sec. 421(a), Sec. 403(b)].
18. Projections for 1995 are based on data from the 1990 Census of Population and the 1993 Survey of Income and Program Participation (SIPP), and 1995 population estimates from the Current Population Survey.
19. In addition to the 7 states listed in Table 1, the following 9 states have elderly legal immigrants comprising more than 3 percent of their elderly population: Alaska, Arizona, Connecticut, District of Columbia, Hawaii, Maryland, Nevada, Rhode Island, and Washington.
20. In 1993, nearly 12 percent of elderly citizens and slightly less than 10 percent of elderly legal immigrants were in the paid labor force. National Academy on Aging tabulations of SIPP, 1993.
21. About 46 percent of legal immigrants and 14 percent of elderly citizens live in a household of three or more people. Elderly legal immigrants were more than twelve times as likely as elderly citizens to live in a household of five or more people. Over 25 percent of elderly legal immigrants lived in a household with a child, compared to less than 2 percent of elderly citizens. (National Academy on Aging tabulations of SIPP 1993.)
22. National Academy on Aging tabulations of SIPP, 1993.
23. National Academy on Aging tabulations of SIPP, 1993.
24. In 1990, 17 percent of elderly citizens and 36 percent of elderly legal immigrants indicated that they needed assistance with personal care. National Academy on Aging Tabulations of the 1990 Census Public Use Micro Data Sample.
25. See for example, Victor R. Fuchs, How We Live, (Cambridge, MA: Harvard University Press, 1983), or Michael Grossman, The Correlation Between Health and Schooling, in Household Production and Consumption, ed. Nestor E. Terleckyj, (New York: Columbia University Press, 1976), or Linda K. George, Social Factors and Illness, in Handbook of Aging and the Social Sciences, ed. Robert H. Binstock and Linda K. George, (New York: Academic Press, 1996).
26. National nursing home surveys in the past have not asked about the citizenship status of residents and most population-based surveys exclude the nursing home population. The 1990 census does note where people live. People living in a nursing home are designated as living in an institution. Unfortunately, the data does not distinguish a nursing home from any other type of institution (prison, hospital, assisted-living facility, or life care community, for example). Applying the proportion of the elderly legal immigrants living in institutions from the 1990 census data to the elderly nursing home population suggests that as many as 114,000 elderly nursing home residents during 1995 were legal immigrants. Adjusting for the likelihood that not all institutionalized people were only in nursing homes, however, suggests that the number of elderly legal immigrants in nursing homes was probably closer to 80,000.
27. In 1993, about 20,000 elderly legal immigrants were receiving veterans benefits from having served in the Military. (Academy tabulations of SIPP).
29. Throughout this paper the term “legal immigrant” has been used to describe people here in the United States legally, but under different visas. Technically, the holding of some visas do not count toward the five years of residency and hence some people must change their visa status and hold that status for five years. There are exemptions to the five-year residency requirement, however. For example, the time period is three years if married to an American citizen, or none in either the case of having served three years in the U.S. military, or having been discharged honorably after less than three years during specifically defined war actions. There are also some people exempt from the English language test, but not the exam of the basic understanding of U.S. history and government. The English language test is waived for persons over age 50 who have been a legal permanent resident alien for twenty years, or for persons age 55 or older if they have been a legal permanent resident alien for fifteen years, or for persons age 55 or older who cannot understand English because of a disability, such as deafness.
References
American Association for Homes and Services for the Aging. Issue Brief: Welfare Reform Act. 1996.
Committee on Ways and Means, U.S. House of Representatives. 1996 Green Book. Washington, DC: Government Printing Office, 1996.
Congressional Budget Office. Federal Budgetary Implications of the Personal Responsibility and Work Opportunity Reconciliation Act of 1996. Washington, DC: Congressional Budget Office, 1996.
Cox, Carole. Block Grants: Where We’ve Been and Where We’re Going. Washington, D.C.: National Academy on Aging, July 1995.
Fuchs, Victor R. How We Live. Cambridge, MA: Harvard University Press, 1983.
George, Linda K. “Social Factors and Illness,” in Handbook of Aging and the Social Sciences, Robert H. Binstock and Linda K. George, eds. New York: Academic Press, 1996.
Grossman, Michael. “The Correlation Between Health and Schooling,” in Household Production and Consumption, Nestor E. Terleckyj, ed. New York: Columbia University Press, 1976.
Moon, Marilyn, Crystal Kuntz, and Laurie Pounder. Protecting Low-Income Medicare Beneficiaries. The Commonwealth Fund, November 1996.
Social Security Act, Title XX, 42 USC, Sec. 303, et seq.
Swarns, Rachel L. “Confused by Law, Nursing Homes Bar Legal Immigrants.” New York Times. April 20, 1997, A1.
U.S. House of Representatives. Personal Responsibility and Work Opportunity Reconciliation Act of 1996. Washington, DC: Government Printing Office, 1996.
Peterson, George. “A Block Grant Approach to Welfare Reform.” In Welfare Reform: An Analysis of the Issues. The Urban Institute, 1995.
Super, David A., Sharon Parrott, Susan Steinmetz, and Cindy Mann. The New Welfare Law. Center on Budget and Policy Priorities, August 14, 1996.
Wheeler, Charles, and Josh Bernstein. New Laws Fundamentally Revise Immigrant Access to Government Programs. Washington, D.C.: National Immigration Law Center, November 8, 1996.
This report presents the findings of researchers at the National Academy on Aging on welfare reform and elderly legal imigrants. The Personal Responsibility and Work Opportunity Reconciliation Actof 1996 included an array of structural reforms affecting access to cash assistance programs such as AFDC and SSI as well as Medicaid. This study profiles elderly legal immigrants in the United States and explores the implications of welfare reform for this population.
The number of reported AIDS cases in the United States has reached 600,000 including 65,000 new cases reported since July of 1996.1 There are an estimated 650,000 to 900,000 2 individuals living with HIV, including AIDS, in the US. Despite treatment advances, transmission continues at alarming rates, particularly for certain subpopulations. Latinos 3 and other ethnic and racial minorities have been particularly hard hit.
Latinos have been disproportionately impacted by HIV since the beginning of the epidemic. Although Latinos accounted for only 7 percent of the US population, they represented 13 percent of all AIDS cases in 1982. 4 Today, 20 percent of new AIDS cases are among Latinos even though Latinos account for just 11 percent of the total population. 5 Approximately 110,000 to 170,000 Latinos are currently infected with HIV 6 of whom an estimated 45,400 are living with AIDS. 7
THE LATINO POPULATION IN THE UNITED STATESLatinos constitute one of the fastest growing ethnic minorities in the US, with a resident population of nearly 30 million. The Latino population is expected to reach 96 million, 25 percent of the predicted US population, halfway into the next century. 8 The Latino population living in the US is diverse, representing multiple ethnicities and countries of origin. Latinos are primarily from the following countries of origin: Mexico, Puerto Rico, Cuba, and the Dominican Republic. The Latino population is concentrated in the northeastern, western and southwestern regions of the US. These areas also include many of the nation’s AIDS epicenters. Among Latinos, AIDS case rates per 100,000 are highest in the Northeastern states 9 (see special section on the relationship between Regional Location and attitudes toward/ knowledge of HIV/AIDS among Latinos).
Overall, the nation’s Latino population is younger, disproportionately poor, and has lower educational attainment than the US population as a whole. The population includes different waves of immigration and, for many, a language barrier still exists (see special section on the relationship between Language and attitudes about/knowledge of HIV/AIDS among Latinos).
Values and traditions unique to Latino culture play an important role in shaping attitudes and behaviors with respect to sex, sexuality, drug use and HIV/AIDS. These attitudes and behaviors may affect risk for HIV/AIDS as well as diagnosis and treatment. 10
EPIDEMIOLOGY AND TRANSMISSION OF HIV/AIDSIn the United States, Latinos make up 18 percent of the total AIDS cases reported since the start of the epidemic through June of 1997. Latinos represent 17 percent of all cases among men and 20 percent of the total number of cases reported among women. 11For Latino men, the current AIDS case rate (the number of cases relative to population size) is nearly three times that for white non-Hispanic men (94.5 cases per 100,000 compared to 32.5 cases per 100,000). For women, the rate is six times higher (23 cases per 100,000 compared to 3.8 cases per 100,000). 12
In general, sex with men is the most common reported mode of transmission among Latino men (37 percent of new cases, 44 percent of all cases reported) followed by injection drug use (32 percent of new cases, 37 percent of all cases reported). Injection drug use also figures significantly in HIV transmission among Latino women (Latinas), though infection due to injection drug use has declined in recent years. Injection drug use is the primary risk factor for 33 percent of new cases and 43 percent of all cases reported among Latinas. Heterosexual contact is the leading HIV transmission route for Latinas and accounts for 47 percent of new AIDS cases (compared to 40 percent of new cases among all women and 46 percent of all reported cases). 13
THE HEALTH GAP AND ACCESS TO CARERecent treatment advances, particularly the increasing availability of effective drug therapies to prevent AIDS-related opportunistic infections (OIs) and the introduction of new drugs which combat HIV (e.g., protease inhibitors) have positively impacted individuals living with HIV. Treatment advances have led to some optimism about the future of the epidemic. For example, AIDS-related mortality is dropping and many people are living longer with HIV. However, this drop has not been occurring at the same rate for all populations. Whereas the number of AIDS deaths in 1996 declined by 32 percent from the previous year among non-Hispanic whites, the decline was only 20 percent among Latinos. 14
Latinos continue to die from AIDS at a rate two and a half times that of non-Hispanic whites. Today HIV is the fourth leading cause of death for Latinos and the eighth leading cause in the general population. 15
These disparities in health outcomes may reflect differential access to health care services. Lack of insurance limits access to health care for a significant proportion of the Latino population. Approximately one in three Latinos (34 percent) are uninsured, and 30 percent report having no regular source of health care. And families with Latino heads of household are more likely than families headed by white or African American individuals to report barriers to receiving health care, most often citing inability to pay for care as the major obstacle. 16 Such obstacles may stand in the way of HIV prevention education as well as early diagnosis and ongoing treatment of HIV. The impact of HIV/AIDS on Latinos should thus be considered in the context of broader disparities in access to health care services.
LATINOS’ PERCEPTIONS OF THE HIV/AIDS EPIDEMICGiven the disproportionate impact of the HIV/AIDS epidemic on Latinos, it is important to understand the opinions and perceptions of Latinos with respect to HIV/AIDS. How do Latinos view the HIV/AIDS epidemic? What are Latinos’ perceptions of America’s response to the HIV/AIDS crisis? Do Latinos differ in their knowledge and information needs with respect to the disease?
From the outset of the AIDS epidemic, public opinion and knowledge have significantly shaped the US response to the epidemic and have informed national dialogues about prevention, treatment and research. Public attitudes and perceptions have influenced not only local and national responses (including public health measures, federal spending priorities, and community mobilization) but also the experiences of individuals confronting HIV/AIDS in their own lives. And these efforts and experiences, in turn, have shaped what people living in the US think and understand about HIV/AIDS.
Past surveys have aimed to capture general public sentiment about HIV/AIDS, including perceptions of the epidemic; personal worry about becoming infected with HIV; knowledge of transmission, course and treatment of HIV and AIDS; experiences with testing; views of national and local efforts to halt the epidemic; and sources of information about HIV/AIDS. Less understood are public opinion and knowledge among minority groups, whose views are often overshadowed in surveys of the population at large. Racial and ethnic minorities are typically sampled in proportion to their contribution to the total population. While these surveys give an important voice to minority groups, they often lack samples of sufficient size to permit detailed analysis. The importance of doing more to understand the perceptions and knowledge of US Latinos is underscored not only by the impact of HIV/AIDS on the Latino community but also by the diversity of the Latino population. For these reasons, the Kaiser Family Foundation surveyed a large sample of Latino adults to characterize their views, concerns, and knowledge about HIV/AIDS today.
In this report, we first present findings from the overall sample of Latino respondents, and then take a closer look at several Latino subgroups.
The Kaiser Family Foundation Survey of Latinos on HIV/AIDS is intended to inform and stimulate increased dialogue about HIV/AIDS in Latino communities as well as provide a better understanding of Latino perspectives on HIV/AIDS to all those who are working to reduce the social, economic and individual costs of the AIDS epidemic.
METHODOLOGYThe Kaiser Family Foundation National Survey of Latinos on HIV/AIDS was designed by the Kaiser Family Foundation and conducted for the Foundation by Princeton Survey Research Associates. The data were collected from a national sample of Latinos in conjunction with a larger study of the general public knowledge and opinion about HIV/AIDS. The sample included respondents living in the continental US only (Puerto Rico, Alaska, and Hawaii were not included). Participants in the Latino survey were interviewed by telephone in either English or Spanish between September 19 and October 26, 1997. Respondents were selected if they selfidentified as Hispanic or Latino. The responses from a total of 802 interviews of Latino adults, age 18 or older, are reported here. Data were weighted to match US Census Bureau estimates of age, sex, education and regional distribution of Latino adults living in households with telephones in the continental United States. The margin of sampling error for results based on the total sample is plus or minus 4 percentage points although the margin of error is larger for some subgroups.
FINDINGS:AIDS VIEWED WITH URGENCY AND GROWING PERSONAL CONCERNLatinos clearly see the impact of AIDS on the nation and in local communities. Nine in ten Latinos (91 percent) say AIDS is a major threat to public health in this country.
One in two Latinos (50 percent) rate AIDS as the most urgent health problem facing the nation today. Half as many (24 percent) say cancer is the most urgent problem. By comparison, 38 percent of the general public 17 says AIDS is the most urgent health problem today, tying it with cancer (also 38 percent).
Latinos view AIDS not only as a serious problem but also one that is becoming more pressing. Two in three Latinos (67 percent) say AIDS is a more urgent problem for the country today than it was even a few years ago. While many Latinos believe the country is making progress in fighting the AIDS epidemic (44 percent), one in three (32 percent) say the country is losing ground.
In addition to viewing AIDS as an escalating problem for the nation, Latinos view AIDS with increasing concern for local communities. One in two (52 percent) say AIDS is a more urgent problem in their local communities than just a few years ago and one in five (20 percent) say their community is losing ground in the fight against AIDS. By comparison, 25 percent of the general public sees AIDS as a more urgent problem for local communities and 11 percent says their community is losing ground. The public overall is twice as likely as Latinos to say AIDS has never been a problem for their local community (41 percent for the general public compared to 21 percent of Latinos).
PERSONAL EXPERIENCE WITH AND WORRY ABOUT HIV/AIDSFor Latinos, AIDS is not something that only happens to others; for many, AIDS hits close to home. Two thirds (67 percent) of Latinos say AIDS is a very serious problem for people they know compared to 34 percent of the general public. And one in three Latinos (35 percent) say they personally know someone who has HIV or AIDS or who died from AIDS.
Latinos’ sense of urgency about AIDS is reflected in heightened personal worry about becoming infected with HIV. Nearly half (46 percent) of Latinos are very concerned about getting HIV and two in five (41 percent) say their concern about infection has grown in recent years. Latino worry is nearly twice as high as that of the general public (24 percent of the general public is very concerned about becoming infected with HIV).
Personal worry also extends to worry about children. Seven in ten Latino parents (70 percent) are very concerned about their kids getting HIV (compared to 52 percent of all parents). For 58 percent of Latinos, concern about kids is greater today than a few years ago.
Latinos are slightly more likely than the general public to have been tested for HIV (42 percent of Latinos compared to 38 percent of the general public), with most having tested in the past year (23 percent compared to 16 percent of the general public).
LATINOS RATE COMMUNITY GROUPS HIGHER THAN GOVERNMENT IN THE FIGHT AGAINST AIDSMore than half of Latinos (59 percent) say local health care providers care “a lot” about the fight against AIDS and one in two say local churches (50 percent) and public schools (49 percent) care “a lot.” Approximately three in ten Latinos say each level of government (local, state, and federal) cares a lot about the fight against AIDS.
Almost half (45 percent) of Latinos say local health care providers are doing “a lot” to help fight AIDS. About a third say local public schools (33 percent) and local churches (31 percent) are doing “a lot.” And approximately one in four Latinos say government – local (23 percent), state (24 percent), and federal (24 percent) – is doing “a lot” to help fight against AIDS. Latinos are more likely than the general public to say the church cares “a lot” in the fight against AIDS compared to 39 percent of the general public. Thirty-one percent of Latinos also say the church is doing “a lot” to help fight AIDS compared to 18 percent of the general public.
MOST KNOW THE BASICS ABOUT HIV/AIDS, BUT IMPORTANT KNOWLEDGE GAPS EXISTMost Latinos know that AIDS is sexually transmitted (98 percent) and that a woman with HIV can give it to her baby (92 percent). Eighty-two percent, know that there are drugs available which can lengthen the life of a person infected with AIDS. Fewer, 55 percent, know that a pregnant woman with HIV can take steps to reduce the risk of transmitting it to her baby.
While 68 percent of Latinos know that there is no vaccine available to protect a person from getting AIDS, one in five (20 percent) incorrectly believes that a vaccine is available (compared to 5 percent of the general public). And although 77 percent says there is no cure for AIDS, another 20 percent mistakenly believes there is a cure (compared to 11 percent of the general public).
Most Latinos (92 percent) agree with the statement that, “by now, adults in this country should know how to protect themselves from HIV.” Seventy-seven percent says that adults who become infected today should be held more personally responsible than those infected years ago. One in two Latinos (50 percent) says that adults who become infected with HIV today should have to pay more of their medical bills themselves than those who were infected years ago (compared to 42 percent of all the general public).
OPTIMISM ABOUT NEW TREATMENTSLatinos appear slightly more optimistic than the general public about the amount of progress that has been made in treating HIV and AIDS. Nearly one in two Latinos (49 percent) say “a lot” of progress has been made in keeping people who have AIDS alive longer, compared to 44 percent of the general public.
And two in five Latinos (43 percent) say “a lot” of progress has been made in finding a cure for AIDS, compared to 28 percent of the general public.
Latinos are more likely than the general public to believe the new drugs are effective for most people with HIV and widely available to those who want them. More than one in three Latinos (36 percent) say the new combination drugs are effective in helping most or nearly all of those who take them (compared to 25 percent of the general public). And 30 percent say most or nearly all of those who want the new drug treatments actually get them (12 percent of the general public holds this view).
LATINOS SUPPORTIVE OF FEDERAL SPENDING ON AIDSLatinos are very supportive of spending to prevent, treat and research HIV and AIDS. Most Latinos favor spending for research to find more effective AIDS treatments (95 percent) as well as to find an AIDS vaccine (94 percent). And nine in ten favor spending on HIV and AIDS education and other prevention activities as well as spending to make the new combination drug treatments available to more people (both 94 percent). Asked to rank these spending areas in order of priority, vaccine research is ranked first (43 percent) and education/prevention is number two (33 percent).
Forty-four percent of Latinos say the federal government spends too little on AIDS and 31 percent say spending is about right. Seventeen percent say spending on AIDS is too high. And when asked about federal spending on AIDS compared to other health problems, such as heart disease and cancer, about one third of Latinos (35 percent) say spending on AIDS is too low, 17 percent say spending is too high, and 37 percent say it is about right.
INFORMATION NEEDSLatinos cite greater needs for information about HIV/AIDS than the general public.
Seven out of ten (70 percent) want more information about what to discuss with children about HIV and AIDS, which is much higher than the general public (46 percent).
Sixty-three percent say they need information about where to go for help if exposed to HIV (compared to 38 percent of the general public).
More than half of all Latinos (58 percent) want more information about testing for HIV (compared to 32 percent of the general public).
One in two (51 percent) want to know what to discuss with partners about sex (compared to 22 percent of the general public); and
Two in five (41 percent) would like information about the proper way to use condoms (compared to 13 percent of the general public).
When asked which ONE area was most important to get more information in, discussing AIDS with children (40 percent) and getting information about where to go for help if exposed to HIV (17 percent) were ranked highest.
MEDIA AND OTHER INFORMATION SOURCESLatinos see a role for television and other media in the fight against AIDS. Most Latinos (71 percent) say that major television networks should accept advertising from condom manufacturers for broadcast (compared to 62 percent of the general public). A majority of Latinos (59 percent) favor more condom references in movies and shows that deal with sexual relationships (compared to 55 percent of the general public).
Television is the number one source of HIV/AIDS information according to Latinos. Seven in ten (70 percent) say they got information about AIDS in the last month from television news programs (compared to 56 percent of the general public). Two in five (44 percent) say they got information from television entertainment shows (compared to 25 percent of the general public).
Radio is also a significant information source: 42 percent say they got information from radio talk or call in shows in the last month (compared to 26 percent of the general public) and 34 percent say they got information from “other radio programming” (compared to 17 percent of the general public).
More than one in three Latinos (39 percent) say they received information about AIDS from street signs or billboards (compared to 21 percent of the general public), 28 percent from family members, friends or acquaintances (compared to 20 percent of the general public), and 32 percent from their doctor or another health care provider (compared to 18 percent of the general public). One in five Latinos (20 percent) say they received information about HIV/AIDS from their church or a local religious group (compared to 10 percent of the general public).
Ten percent of Latinos said they didn’t get information about HIV/AIDS from any of the sources in the past month (see special section on Language for differences by language of interview). Latinos report higher levels of consumption of news about HIV and AIDS than the general public. One in three Latinos (37 percent) say they saw or heard “a lot” of news about HIV/AIDS on television, radio, in newspapers and other media in the past year and 23 percent say they heard or saw a lot of news about the new combination drug treatments, in particular. By comparison, 21 percent of the general public has seen or heard a lot of news about HIV/AIDS, 11 percent about combination drug treatments, in particular.
One in two Latinos (50 percent) say recent news coverage gives people the impression that AIDS is a more urgent problem today than it was a few years ago (compared to 28 percent of the general public). One in five Latinos (20 percent) say news coverage depicts AIDS as less urgent.
NEEDLE EXCHANGESlightly more than half of Latinos (56 percent) favor “needle exchange programs which offer clean needles to IV drug users in exchange for used ones, to help stop the spread of HIV,” (compared to 58 percent of the general public).
Similar to the general public, when offered an argument voiced by opponents of needle exchange, namely that these programs might give tacit approval of illegal drug use, support drops among Latinos: 41 percent favor, 56 percent oppose.
HIV TESTINGAs noted earlier, two in five Latinos (42 percent) have tested for HIV, 23 percent in the last year. More than half (58 percent) say they discussed the results of their tests with a doctor or other medical professional or counselor (compared to 50 percent of the general public).
Among those who have never tested for HIV, most say it is because they are married or in a monogamous relationship (42 percent), they are not sexually active (19 percent) or there is no need/reason to suspect a problem (9 percent). Fifteen percent say they don’t know why they haven’t tested or decline to give a reason.
More than two-thirds of Latinos (69 percent) have never talked with a health care provider about any aspect of HIV or AIDS. Just three in ten have ever discussed HIV/AIDS with a health care provider (31 percent) – one quarter (24 percent) have talked specifically about the risks of being infected with HIV and one in five (19 percent) have discussed getting tested.
Of the small group who have had conversations occur, the majority say they brought up the topic as opposed to their health care provider raising the issue – 52 percent brought up the risks of HIV infection and 58 percent raised the issue of testing with their provider.
Language and Perceptions of HIV/AIDS
The Kaiser Family Foundation National Survey of Latinos on HIV/AIDS was administered in both English and Spanish. Half the surveys were administered in Spanish, half in English. Our analysis of responses demonstrates that perceptions of and attitudes toward HIV/AIDS among Latinos vary by language of interview. These differences may be attributed to many factors including:
Level of acculturation. Language is one component of acculturation, a measure of the strength of values from country of origin. Acculturation may be associated with disease risk. 18
Access to information and prevention initiatives. Fewer AIDS education and prevention materials are provided in languages other than English and non-English speaking individuals may have more difficulty accessing prevention and care programs.
Socioeconomic factors. Income, education, and religion, for example, may be related to language and these socioeconomic factors may influence attitudes and opinions.
Survey translation. The Spanish language version of the survey may convey different kinds of meanings and messages to survey respondents and/or Spanish speaking Latinos may respond to surveys differently.
The profile of those interviewed in Spanish is as follows:
Latinos interviewed in Spanish are less educated than Latinos interviewed in English. Almost two-thirds (63 percent) have less than a high school education compared to 23 percent of Latinos interviewed in English.
They are older than those interviewed in English. Whereas 40 percent of those interviewed in English were between 18 and 29 years old, 26 percent of those interviewed in Spanish were in this age range.
They are slightly more likely to be of Mexican ancestry (63 percent of those interviewed in Spanish compared to 58 percent of those interviewed in English) and less likely to be of Puerto Rican ancestry (5 percent compared to 15 percent);
Latinos interviewed in Spanish are more likely to be Catholic (84 percent compared to 66 percent of those interviewed in English).
Latinos interviewed in Spanish expressed a greater sense of urgency about AIDS.
Over half (53 percent) rate AIDS as the most urgent health problem in the country today, compared to 46 percent of those interviewed in English.
They are also more likely to say the problem of AIDS is more urgent today than a few years ago (73 percent compared to 61 percent).
Latinos interviewed in Spanish are more likely to say that the country is losing ground in the fight against AIDS (40 percent compared to 25 percent of those interviewed in English).
Finally, Latinos interviewed in Spanish express a greater sense of the impact of AIDS on their local communities. They are almost twice as likely to say the problem of AIDS in their local communities is more urgent today (65 percent compared to 37 percent of Latinos interviewed in English).
In addition, Latinos interviewed in Spanish express greater personal concern about HIV.
Most of those interviewed in Spanish (80 percent) say that AIDS is a very serious problem for those they know, compared to 53 percent of those interviewed in English.
They are also more likely to be very concerned about becoming infected with HIV (51 percent compared to 41 percent) and are more likely to be more concerned today than a few years ago (46 percent compared to 37 percent).
Despite the heightened sense of urgency and personal concern, Latinos interviewed in Spanish are less likely to say they know someone who has AIDS, has died from AIDS or has tested positive for HIV (28 percent compared to 42 percent of those interviewed in English).
Concern about children becoming infected with HIV among Latinos also appears to be related to language.
Those interviewed in Spanish are more likely to be parents (60 percent compared to 48 percent).
They are slightly more likely to be concerned about their kids becoming infected with HIV (73 percent compared to 68 percent of those interviewed in English) but concern is high among all Latinos.
Latinos interviewed in Spanish are also more likely to be more concerned about their kids becoming infected today than they were a few years ago (62 percent compared to 53 percent).
Knowledge about AIDS appears to be related to language of interview in a couple of areas.
Latinos interviewed in Spanish are more than twice as likely to incorrectly state that there is an AIDS vaccine (28 percent compared to 11 percent of those interviewed in English).
They are also less likely to know that there is no cure for AIDS (72 percent of those interviewed in Spanish compared to 82 percent of those interviewed in English).
But Latinos interviewed in Spanish are more likely to know that a pregnant woman with HIV can transmit the virus to her baby (95 percent compared to 89 percent of those interviewed in English) and that a pregnant woman with HIV can take steps to reduce the risk to her baby (62 percent compared to 49 percent). Latinos interviewed in Spanish cite much greater information needs.
Latinos interviewed in Spanish cite greater information needs across the board. For example, Latinos interviewed in Spanish are more than twice as likely (60 percent compared to 24 percent of Latinos interviewed in English) to say they want information about the proper way to use condoms.
They are also much more likely to say they want information about discussing sex with partners (61 percent compared to 41 percent).
Sources of AIDS Information also vary by language of interview.
Latinos interviewed in Spanish are more likely to have received AIDS information from TV news programs, TV entertainment programs, radio, and church.
Latinos interviewed in English are more likely to have received information from newspapers, magazines, and the workplace.
In addition, those interviewed in Spanish are less likely to have talked with a provider about HIV, about HIV/AIDS risks, and about getting tested.
Regional Location and Perceptions of HIV/AIDS among Latinos
The US Latino population is concentrated primarily in the West (43 percent) and the South (33 percent) with 16 percent of Latinos residing in the Northeast and 7 percent in the Midwest. Most of the Latino population (87 percent) resides in 10 states – California, Texas, New York, Florida, Illinois, New Jersey, Arizona, New Mexico, Colorado, and Massachusetts – which include many of the major AIDS epicenters in the US. 19
The distribution of the US Latino population across the country is highly correlated with country of origin. 20 The distribution of country of origin among those surveyed, which approximates the US Latino population overall, is as follows: 60 percent of Mexican ancestry, 10 percent of Puerto Rican ancestry, 7 percent of Cuban ancestry, 5 percent of Dominican ancestry, and 17 percent Latinos of other ancestries (other Central/South American or Spanish).
The AIDS epidemic among Latinos in the US is concentrated in the Northeast, where Puerto Ricans and Dominicans are most likely to live. Latinos living in the West and South, primarily of Mexican and Cuban ancestry, have a lower incidence of HIV. Higher incidence of HIV in the Northeast among Puerto Rican and Dominican Latinos may be related to higher use of injection drugs. Puerto Rican Latinos have the highest prevalence of drug use, in part due to the fact that most (70 percent) living in the US reside in New York City, New Jersey, and Chicago, areas which have greater availability of illegal drugs. 21 AIDS case rates per 100,000 population among Latinos are highest in the Northeastern States, including: New York (142.3), New Jersey (69.0), Pennsylvania (115.4), Rhode Island (58.8), Massachusetts (91.3), and Delaware (87.8). 22
Although the sample size did not allow for an analysis of perceptions of AIDS by ethnicity/country of origin, we were able to analyze perceptions by region. 23 Latinos living in the Northeast and the West are more likely to have been interviewed in Spanish (53 percent and 56 percent respectively). Latinos living in the South are more likely to have been interviewed in English (60 percent).
Latinos living in all regions of the US express urgency about AIDS with some regions expressing greater urgency
.
The sense of urgency about the AIDS epidemic appears to be greatest in the Northeast. Latinos in the Northeast are more likely to say AIDS is the most urgent health problem facing the nation today (59 percent compared to 49 percent of those in the West and 45 percent of those in the South).
Personal experience with AIDS varies somewhat by region and may in part reflect the epidemiology of HIV/AIDS.
In terms of the severity of the problem of AIDS for people they know, there are some regional differences among Latinos. Seventy-one percent of Latinos in the Northeast say AIDS is a very serious problem for those they know compared to 68 percent of those in the West and 62 percent of those in the South.
Latinos in the Northeast are much more likely to know someone who has AIDS, has died from AIDS, or has tested positive for HIV. Fifty-six percent of those in the Northeast know someone compared to 30 percent of those in the West and 32 percent of those in the South.
Personal concern about becoming infected with HIV follows similar regional patterns among Latinos.
Personal concern about becoming infected with HIV is roughly similar across the country although more than half of those in the Northeast (51 percent) say they are very concerned about becoming infected with HIV. Forty-four percent of Latinos in the West and 46 percent of Latinos in the South say they are very concerned about becoming infected with HIV.
Latinos in the Northeast are more likely to have been tested for HIV. Over half of those in the Northeast (51 percent) have ever tested compared to 41 percent of those in the West and 43 percent of those in the South.
AIDS knowledge also varies somewhat by region.
In particular, knowledge that there are drugs available to lengthen the life of those with HIV is highest in the Northeast (88 percent compared to 76 percent of those in the South and 84 percent of those in the West).
Knowledge that a pregnant woman with AIDS can give it to her baby is highest among Latinos in the South (94 percent compared to 87 percent of Latinos in the Northeast and 93 percent of Latinos in the West).
Knowledge that a pregnant woman with HIV can take certain steps to reduce the risks to her baby also varies by regions (74 percent of those in the Northeast compared to 58 percent of those in the West and 45 percent of those in the South).
While stated information needs are similar across regions, there are some differences in AIDS information sources.
For example, Latinos in the South are less likely to have received AIDS information from the radio (32 percent) compared to those in the Northeast (45 percent) and West (41 percent). Latinos in the Northeast are more likely to have received AIDS information from newspapers (53 percent) than those in the West (43 percent).
Latinos in the Northeast are also more likely to have talked with a provider about HIV/AIDS (43 percent compared to 33 percent of those in the South and 27 percent of those in the West).
Support for condom references on TV also varies by region. There is much more support in the Northeast for condom references on television shows (70 percent compared to 56 percent of Latinos in the West and 58 percent of Latinos in the South).
Income, Education and Attitudes Towards/Knowledge of HIV/AIDS Among Latinos
Income and education may play a role in the disproportionate impact of HIV infection on certain populations. In addition, new research indicates that those with less education are significantly less likely to have access to important and cost-effec-tive drugs needed to prevent AIDS-related opportunistic infections, such as Pneumocystis Carinii Pneumonia. 24
Risk may be compounded for Latinos who are disproportionately poor and, on average, have lower educational attainment relative to the US population overall. Approximately 30 percent of all Latinos live in poverty and only 53 percent, compared to 83 percent of the general public, have a high school degree or more. We analyzed perceptions of the AIDS epidemic among Latinos who have less than a high school education (43 percent) and earn less than $20,000 per year (47 percent). There is significant overlap between these subpopulations. Close to two thirds (62 percent) of those with less than a high school education earn less than $20,000 per year and over half (56 percent) of those with less than $20,000 income also have less than a high school education.
Latinos with less than a high school education are much more likely to have been interviewed in Spanish (72 percent) than English (28 percent) as are Latinos who earn less than $20,000 per year (69 percent were interviewed in Spanish and 31 percent were interviewed in English).
Latinos with less education and lower incomes share a sense of urgency about AIDS with Latinos overall.
Over half (52 percent) of Latinos with less than a high school education and 50 percent of Latinos who earn less than $20,000 per year say that AIDS is the most urgent health problem in the country today, as do half of all Latinos. Most (95 percent of Latinos with less education and 93 percent of Latinos with lower incomes) say that AIDS is a major public health threat.
Latinos with less education are more likely to say that the country is losing ground in the fight against AIDS (40 percent compared to 32 percent of all Latinos) and less likely to say the country is making progress (37 percent compared to 44 percent of all).
Thirty-five percent of Latinos with lower incomes say the country is losing ground in the fight against AIDS, while 40 percent say the country is making progress.
Latinos with lower incomes are more likely to say that AIDS is a more urgent problem for their local community (60 percent compared to 52 percent of all Latinos and 55 percent of those with less education).
There is greater personal concern about AIDS among Latinos with less education and lower incomes.
Latinos with less than a high school education and those with lower incomes are more likely to say AIDS is a very serious problem for people they know (78 percent and 73 percent respectively, compared to 67 percent of all Latinos).
Personal concern about becoming infected with HIV is slightly higher among these subpopulations; 53 percent of Latinos with less education are very concerned compared to 46 percent of all Latinos and they are more likely to be more concerned today (49 percent compared to 42 percent of all Latinos). Half (50 percent) of Latinos with lower incomes are very concerned about becoming infected with HIV and 44 percent are more concerned today.
Testing rates are slightly lower among Latinos with less than high school education (36 percent compared to 43 percent of Latinos with lower incomes and 42 percent of all Latinos).
Perceptions of government and community group activity in the fight against AIDS appear to vary by education and income.
Latinos with less education are more likely to say each group is doing a lot in fight against AIDS and more likely to say each group cares a lot than are Latinos overall.
Latinos with lower incomes are more likely to say each group is doing a lot in the fight against AIDS than are Latinos overall. There are somewhat different levels of knowledge among Latinos with less education.
Latinos with less education are more likely to incorrectly state that there is an AIDS vaccine (32 percent compared to 24 percent of those with lower incomes and 20 percent of all Latinos) and are less likely to know there is no cure for AIDS (69 percent compared to 74 percent of those with lower incomes and 77 percent of all).
Latinos with less education and lower incomes cite greater information needs than Latinos overall.
They are more likely to want information about the proper way to use condoms, what to discuss with partners about sex, talking with children about AIDS prevention, testing, and where to go for help if exposed to HIV.
Latinos with less education receive AIDS information from different sources.
For example, Latinos with less education are less likely to receive AIDS information from newspapers (39 percent compared to 46 percent of all Latinos) and magazines (36 percent compared to 48 percent).
In addition, those with less education are slightly less likely to have talked with a provider about AIDS (24 percent compared to 27 percent of those with lower incomes and 31 percent of all Latinos), about risks of HIV (19 percent compared to 22 percent of those with lower incomes and 25 percent of all), and getting tested for HIV (15 percent compared to 17 percent of those with lower incomes and 19 percent of all).
Religion and Perceptions of HIV/AIDS among Latinos
Religion may be related to perceptions of HIV/AIDS and risk behaviors. For example, religion may influence attitudes about gender roles, sex, sexuality, and condom use. Most Latinos identify as Catholic (75 percent), which differs from the US population overall (24 percent identify as Catholic). Eighteen percent of Latinos identify as Protestant compared to almost two-thirds (63 percent) of the US population overall. Catholic Latinos are more likely to have been interviewed in Spanish (55 percent) than English. Protestant Latinos are more likely to have been interviewed in English (72 percent).
Urgency about AIDS varies slightly by religion.
Over half of Catholic Latinos (52 percent) say that AIDS is the most urgent health problem in the country today, compared to 45 percent of Protestant Latinos.
Similarly, the sense of concern for those they know and personal concern about AIDS appear to be related to religion.
Catholic Latinos are more likely to say AIDS is very serious for people they know (69 percent compared to 61 percent of Protestant Latinos).
Almost half of Catholic Latinos (49 percent) are very concerned about becoming infected with HIV, compared to 35 percent of Protestant Latinos.
Catholic Latinos are more concerned about becoming infected today than they were a few years ago (43 percent compared to 33 percent of Protestant Latinos).
Despite the greater expressed concern about AIDS among Catholic Latinos, they are slightly less likely than Protestant Latinos to report knowing someone who has HIV, AIDS, or has died of AIDS (34 percent compared to 41 percent of Protestant Latinos).
Support for government spending is high among Latinos of all religions, with Catholic Latinos being the most supportive.
Almost all Catholic Latinos (96 percent) support spending on AIDS edu cation and prevention activities compared to 87 percent of Protestant Latinos.
Ninetysix percent of Catholic Latinos support spending on AIDS vaccine research compared to 85 percent of Protestant Latinos.
And 87 percent of Catholic Latinos believe that the government should be spending money to help HIV infected people with lower incomes pay for new treatments compared to 64 percent of Protestant Latinos.
Support for condom advertising and references on TV also varies by religion, but is generally high.
Catholic Latinos are much more supportive of condom advertising (74 percent compared to 56 percent of Protestant Latinos) and more references to condoms on TV programs (62 percent compared to 47 percent of Protestant Latinos).
Desire for information among Latinos differs by religion, although there are few differences in information sources.
Catholic Latinos state greater information needs in all areas compared to Protestant Latinos. For example, 46 percent of Catholic Latinos compared to 27 percent of Protestant Latinos want more information about the proper way to use condoms.
Sources of information generally appear to be the same with a couple of exceptions. Catholic Latinos are more likely (48 percent) than Protestant Latinos (37 percent) to say they received AIDS information from newspapers, and more likely to have received AIDS information from radio programming (not talk or callin) than Protestant Latinos (35 percent of Catholic Latinos compared to 27 percent of Protestant Latinos).
Finally, perceptions of news coverage about AIDS vary. Catholic Latinos are more likely to say news coverage gives the impression that AIDS is more urgent today (53 percent compared to 38 percent of Protestant Latinos).
Latinas and HIV/AIDS
Latina women (Latinas) have been disproportionately impacted by HIV/AIDS. Latinas represent 20 percent of all reported AIDS cases and 19 percent of new cases among women 25 but only comprise 10 percent of the female population. 26 The AIDS case rate (standardized to population size) among Latinas is six times that of non-Hispanic white women (23.0 compared to 3.8 per 100,000). 27 Heterosexual transmission of HIV accounts for most cases of AIDS among Latinas (47 percent of new cases) and the proportion of AIDS cases among Latinas today due to heterosexual transmission has been steadily increasing. As such, heterosexual transmission plays a greater role in HIV transmission among Latinas today than among women overall (40 percent), white non-Hispanic women (40 percent), and Black non-Hispanic women (38 percent). HIV infection due to injection drug use is the primary mode of transmission in one third of new AIDS cases (33 percent).
Half of Latina respondents (50 percent) were interviewed in Spanish, as were half of Latino men. Their attitudes about and knowledge of HIV/AIDS are presented below:
A majority of Latinas view AIDS as the most urgent health problem facing the nation today, slightly more than Latino men and more than US women overall.
Fifty-two percent of Latinas, compared to 47 percent of Latino men, rate AIDS as the most urgent health problem facing the nation today. Cancer is rated most urgent by half as many Latinas (26 percent). By comparison, the plurality of women overall rate cancer as their top concern (42 percent), followed by AIDS (38 percent).
Two thirds of Latinas (67 percent) say that AIDS is a more urgent problem today, and 9 in 10 Latinas (91 percent) say AIDS is a major threat to public health today.
Latinas are concerned about AIDS in their local communities.
Half (50 percent) of all Latinas say that the problem of AIDS facing their local community is more urgent today.
Twenty-nine percent of Latinas say their local community is making progress in the fight against AIDS while 21 percent say that their local community is losing ground.
Latinas are less likely than Latino men (17 percent compared to 26 percent) to say that AIDS has never been a problem for the local community.
In addition, AIDS has affected Latinas personally, in terms of concern for people they know and their own concern about becoming infected.
Seven out of ten (70 percent) Latinas say that AIDS is a very serious problem for people they know, which is slightly more than Latino men (64 percent) and much greater than women overall (35 percent).
Slightly more than a third (37 percent) of Latinas say they know someone who has HIV, AIDS, or has died of AIDS.
Forty-five percent of Latinas are very concerned about becoming infected with HIV and many say they are more concerned today than a few years ago (43 percent). By comparison, 28 percent of all women are very concerned about becoming infected with HIV.
Almost all Latinas express concern about their children becoming infected with HIV.
About 7 in 10 mothers (69 percent) are very concerned about their children becoming infected with HIV. Another 16 percent are somewhat concerned.
A majority (56 percent) are more concerned about their children becoming infected today than they were a few years ago.
Despite personal concern about HIV, less than half of Latinas have ever been tested for HIV and most have never talked with a provider about HIV/AIDS.
Forty-three percent of Latinas have been tested for HIV, with 24 percent having tested in the past year.
Two thirds of Latinas (66 percent) have never talked with a provider about HIV/AIDS.
Among those who have tested for HIV, 60 percent report discussing the results with a provider.
Why have more than half (57 percent) of all Latinas not been tested for HIV?
Among those who have not tested, 24 percent say it is because they are not sexually active.
Forty-two percent say it is because they are married or in monogamous relationships.
Latinas cite similar information needs as Latino men.
Overall, Latinas cite similar levels of information needs as Latino men including wanting more information on condom use, talking with partners about sex, and HIV testing.
Latinas are slightly more likely to say they want information about talking with kids about AIDS (73 percent of Latinas compared to 66 percent of Latino men).
Information about talking with kids about AIDS is Latinas’ highest ranked information need (42 percent).
In general, Latinas have received slightly less information about AIDS across most sources compared to Latino men.
For example, forty-one percent of Latinas say they have received AIDS information from TV entertainment programs in the past month compared to 47 percent of Latino men and 38 percent say they have received information from radio shows compared to 45 percent of men.
Indeed, Latinas are, across the board, more likely than Latino men to say they have not received AIDS information from most sources.
Latino Parents and HIV/AIDS
Attitudes of Latino parents toward HIV/AIDS are similar to those of Latinos in general and to parents overall. Over half (54 percent) of Latinos are parents of children 21 and younger.
Seven out of every 10 Latino parents (70 percent) are very concerned about their son or daughter becoming infected with HIV.
Over half (58 percent) of Latino parents are more concerned today than they were a few years ago.
Almost all Latino parents believe that the federal government should spend money on HIV and AIDS education and other prevention efforts (95 percent).
More than three quarters of Latino parents (76 percent) say they need information about discussing AIDS prevention with children. Parents rate this as their most important information need (46 percent).
Most Latino parents think that major television networks should accept advertising from condom manufacturers for broadcast (70 percent) and are very supportive of movies and television shows which deal with sexual relationships having more references to condom use (60 percent).
Younger Latinos and HIV/AIDS
The number of HIV infections continues to rise among young people and young people of color may even be at higher risk for HIV infection. One in every four Americans newly infected with HIV is under the age of 22 28 and almost two thirds (63 percent) of all reported AIDS cases among 20 to 24-year-olds are among people of color. 29 Twenty-one percent of all cases among 20 to 24-year-old males and 21 percent of cases among 20 to 24-year-old females are among Latinos/as. We know that young people engage in sexual and drug using behaviors that put them at risk; for example, 53 percent of high school students report being sexually active. 30
The relative youth of the Latino population may be related to HIV risk among Latinos. The median age of Latinos in the US is 26.5 years compared to 33.9 years for the US population overall. 31 We looked at the perceptions of AIDS among younger Latinos, 18 to 24 years old, who represent approximately 19 percent of the Latino population. Latinos ages 18 to 24 are more likely to have been interviewed in English (71 percent) than in Spanish (29 percent).
The sense of urgency about the AIDS epidemic is heightened among younger Latinos.
More younger Latinos think AIDS is the most urgent health problem today (59 percent compared to 50 percent of Latinos of all ages and 49 percent of all young people)
Most consider AIDS a major threat to the country’s public health (92 percent).
Younger Latinos express concern about AIDS for people they know.
More than half of younger Latinos say that AIDS is a very serious problem for people they know (57 percent). By comparison, 39 percent of all 18 to 24-year-olds say AIDS is a very serious problem for people they know.
One third of younger Latinos (33 percent) know someone who has HIV, AIDS, or has died of AIDS.
And younger Latinos are very concerned about becoming infected with HIV, more so than young adults overall.
Almost half of younger Latinos (49 percent) are very concerned about becoming infected with HIV, compared to less than a third (30 percent) of all 18 to 24-year-olds.
Forty-seven percent of younger Latinos are more concerned about becoming infected today than they were a few years ago.
Have younger Latinos been tested for HIV?
Less than half of younger Latinos have been tested.
Testing rates among younger Latinos are similar to those of Latinos over-all, with 42 percent of younger Latinos (and Latinos overall) ever testing.
Testing rates among younger Latinos are slightly lower than rates among all 18 to 24-year-olds (48 percent).
Overall, AIDS knowledge among younger Latinos is high.
Knowledge levels among younger Latinos appear to be greater in some areas compared to Latinos overall. For example, younger Latinos are slightly more likely to know that there are drugs available to lengthen the life of people with HIV (86 percent compared to 82 percent of all Latinos) and that there is no AIDS vaccine (77 percent compared to 69 percent of all Latinos).
Younger Latinos cite fewer information needs across the board and are more likely to have received AIDS information than Latinos overall.
Younger Latinos cite less need for AIDS information than Latinos of all ages. For example, only 30 percent of younger Latinos cite a need for information about condom use compared to 41 percent of Latinos overall and 51 percent say they want information about HIV testing (compared to 58 percent of all Latinos).
Younger Latinos are more likely to say they have received AIDS information from a variety of sources, including TV news programs, magazines, and family and friends.
In addition, more young Latinos have talked with health care providers about HIV (41 percent compared to 31 percent of all Latinos), about the risks of HIV (34 percent compared to 25 percent) and about getting tested for HIV (26 percent compared to 19 percent).
Finally, younger Latinos are more supportive of condom advertising on TV (78 percent compared to 71 percent) and condom references on TV programs (70 percent compared to 59 percent) than are Latinos overall.
HIV/AIDS and Local Opinion Leaders in the Latino Community
What makes them local opinion leaders?
They are opinion leaders because in the past 12 months, they have participated in at least three of the following activities:
Attended a public meeting on town or school affairs (78 percent);
Helped organize a group or event in support of a cause (73 percent);
Served as an officer of some club or organization (66 percent);
Served on a local committee, such as a school board or community council (50 percent)
Made a public speech (40 percent);
Contacted members of Congress or a US Senator (36 percent);
Were interviewed or quoted by the media about an important issue (34 percent);
Worked on a political campaign (31 percent);
Wrote a letter to a newspaper that was published (21 percent).
Who are local opinion leaders?
Latino opinion leaders represent 11 percent of the Latino sample.
They are more educated than Latinos overall; more than half (59 percent) have some college education or more. Only 28 percent of Latinos overall have some college education or more.
Opinion leaders also earn significantly more than Latinos overall, with 41 percent reporting incomes of $40,000 or more. Only 14 percent of Latinos overall fall into this category.
Most opinion leaders are from the West (41 percent) or the South (37 percent). Seventeen percent are from the Northeast and 5 percent are from the Midwest. This distribution is similar to Latinos overall.
Latino opinion leaders have similar ethnic and religious distributions as Latinos overall.
Finally, Latino opinion leaders are more likely to be Democrats (48 percent compared to 38 percent of Latinos overall) and are as likely to be Republican (15 percent of opinion leaders and Latinos overall).
Given their role in Latino communities, how do their attitudes toward and knowledge of HIV/AIDS com pare to Latinos in general?
Latino opinion leaders rate AIDS as the most urgent health problem facing the nation today.
Forty-four percent of opinion leaders say AIDS is the most urgent health problem.
Eight in ten (82 percent) say AIDS is a major public health threat, although this is slightly less than Latinos overall (91 percent). Personal concern about AIDS is less among Opinion Leaders.
Opinion leaders are less likely to say AIDS is a very serious problem for those they know (55 percent compared to 67 percent of all Latinos).
Opinion leaders express less personal concern about becoming infected with HIV (33 percent are very concerned compared to 46 percent of all Latinos).
They are also less likely to say their concern about becoming infected has grown over the past few years (30 percent compared to 41 percent of all Latinos).
On the other hand, opinion leaders are more personally touched by HIV/AIDS, given that over half (54 percent) say they know someone who has HIV, AIDS, or has died of AIDS compared to 35 percent of Latinos overall.
Opinion leaders are slightly more likely to have been tested for HIV (51 percent compared to 42 percent of all Latinos). Support for spending is high across the board, although opinion leaders are slightly less likely than Latinos overall to support spending in some areas.
Eighty-seven percent of opinion leaders, for example, support spending to make new treatments available, compared to 94 percent of all Latinos. Ninety percent support spending on HIV/AIDS education and prevention programs (compared to 94 percent of all Latinos).
IMPLICATIONS OF SURVEY FINDINGSThe Kaiser Family Foundation Survey of Latinos on HIV/AIDS provides new data on Latinos’ perceptions, knowledge, and information needs regarding HIV/AIDS which may offer direction for continued efforts to address the HIV/AIDS epidemic within the Latino community. In particular, the survey finds Latinos to be very worried about the scope of the epidemic nationally and at the local level. Latinos view HIV/AIDS as a more urgent problem today than just a few years ago. Latinos also experience HIV/AIDS close to home: many report knowing someone with HIV and most express worry for themselves as well as their children and people they know.
Despite heightened worry, Latinos express higher levels of optimism about progress in the epidemic compared to the general public. Many Latinos say there has been a lot of progress in treating and preventing HIV/AIDS and more than half say a lot of progress has been made towards finding a cure. Latinos give higher marks to local community groups than government in terms of how much they care about and actually do in the fight against AIDS. Still, there is room for more action.
Latinos express high expectations for personal responsibility in preventing the transmission of HIV and are eager for more information relating to preventing the spread of AIDS. In fact, Latinos are more likely than the general public to say they want more information across a variety of topics related to HIV/AIDS. In particular, Latinos voice the need for more information about talking to children about HIV/AIDS, as well as discussing sex with partners, where to go for help if exposed to HIV, and HIV testing. And two in five Latinos cite the need for information about the proper use of condoms.
There are important differences in information sources about HIV/AIDS among Latinos compared to the general public. For example, television and radio play a much greater role, as do street signs and billboards. Latinos also get more information about HIV/AIDS from churches and religious organizations.
Additionally, the survey reveals differences in perceptions, knowledge and information sources regarding HIV/AIDS within the Latino population. These differences appear to be related to language of interview, ethnicity/ region, income, education, religion, gender, and age, factors which have been identified by other researchers as playing a potentially important role in HIV risk and related behaviors and attitudes. 32 As such, our survey findings bolster existing recommendations for identifying information needs within subgroups of the Latino population and targeting interventions accordingly.
Endnotes1 Centers for Disease Control and Prevention. (1997). HIV/AIDS Surveillance Report, Midyear Edition, Vol. 9, No. 1.
2 Karon, J.M. et. al. (1996). “Prevalence of HIV Infection in the United States, 1984 to 1992,” Journal of the American Medical Association, Vol. 276, No. 2. For other estimates see P.S. Rosenberg, 1995 and S.D. Holmberg, 1996.
3 The term Latino is used herein to describe US residents of Hispanic origin, regardless of race. These designations are based on selfreport.
4 Centers for Disease Control and Prevention. (1982). Kaposi’s Sarcoma (KS), Pneumocyctis Carinii Pneumonia (PCP), and Other Opportunistic Infections (OI): Cases Reported to CDC as of June 15, 1982. First Report.
5 Centers for Disease Control and Prevention. (1997). HIV/AIDS Surveillance Report, Midyear Edition, Vol. 9, No. 1; U.S. Bureau of the Census. (1997). Statistical Abstract of the United States: 1997 (117th Edition). Washington, DC.
6 Karon, J.M. et. al. (1996). “Prevalence of HIV Infection in the United States, 1984 to 1992,” Journal of the American Medical Association, Vol. 276, No. 2.
7 Centers for Disease Control and Prevention. (1997). HIV/AIDS Surveillance Report, Midyear Edition, Vol. 9, No. 1. Note that HIV/AIDS Surveillance case data are reported for the United States and its territories, including Puerto Rico. Data from our survey include only those living in the continental US.
8 US Bureau of the Census. (1997). Statistical Abstract of the United States: 1997 (117th Edition). Washington, DC.
9 Centers for Disease Control and Prevention, National Center for HIV, STD, & TB Prevention. 1996 data. For example, 142.3 in New York State compared to 22.9 in California.
10 Marin, B. and Gomez, C. (1994). Latinos, HIV Disease, and Culture: Strategies for HIV Prevention. The AIDS Knowledge Base, HIV InSite.
11 Centers for Disease Control and Prevention. (1997). HIV/AIDS Surveillance Report, Midyear Edition, Vol. 9, No. 1.
12 National Center for Health Statistics. (1997). Health, United States, 1996-1997 and Injury Chartbook. Hyattsville, Maryland. Deaths per 100,000 population for the 12 month period ending June 30, 1996.
13 Centers for Disease Control and Prevention. (1997). HIV/AIDS Surveillance Report, Midyear Edition, Vol. 9, No. 1.
14 Centers for Disease Control and Prevention (1997). “Update: Trends in AIDS Incidence – United States, 1996”, Morbidity and Mortality Weekly Report, Volume 46, No. 37.
15 National Center for Health Statistics. (1997). Health, United States, 1996-1997 and Injury Chartbook. Hyattsville, Maryland.
16 Agency for Health Care Policy and Research and National Center for Health Statistics, Medical Expenditure Panel Survey. (May 1997). Health Insurance Status of the U.S. Civilian Noninstitutionalized Population, First half of 1996; Agency for Health Care Policy and Research and National Center for Health Statistics, Medical Expenditure Panel Survey (Oct. 1997). Access to Health Care in America , Estimates for U.S. Civilian Noninstitutionalized Population, First half of
17 Refers to the Kaiser Family Foundation 1997 National Survey of Americans on AIDS/HIV, a nationally representative sample of American adults, including representative proportions of minority respondents.
18 Peragallo, N. (1996). “Latino Women and AIDS Risk”, Public Health Nursing, Vol. 13, No. 3.
19 Marin, B. and Gomez, C. (1994). Latinos, HIV Disease, and Culture: Strategies for HIV Prevention. The AIDS Knowledge Base, HIV InSite.
20 Country of origin may include nationality and/or ethnic identity.
21 Marin, B. and Gomez, C. (1994). Latinos, HIV Disease, and Culture: Strategies for HIV Prevention. The AIDS Knowledge Base, HIV InSite.
22 Centers for Disease Control and Prevention, National Center for HIV, STD, and TB Prevention. 1996 Data.
23 In addition, we were unable to analyze data for the Midwest due to the small number of Latinos sampled who live in the Midwest.
24 Preliminary Data from HIV Cost and Services Utilization Study (HCSUS). Personal communication, Drs. Martin Shapiro and Samuel Bozzette, February 1998.
25 Centers for Disease Control and Prevention. (1997). HIV/AIDS Surveillance Report, Midyear Edition Vol. 9, No.1.
26 U.S. Bureau of the Census. United States Population Estimates, by Age, Sex, Race, and Hispanic Origin, 1990-1996. Release PPL-57.
27 National Center for Health Statistics. (1997). Health, United States, 1996-97 and Injury Chartbook. Hyattsville, Maryland. Cases per 100,000 population for 12 month period ending June 30, 1996. 1996.
28 AIDS Research Institute, The Center for AIDS Prevention Studies, University of California and the Harvard AIDS Institute (1997). Dangerous Inhibitions: How America is Letting AIDS Become an Epidemic of the Young.
29 Centers for Disease Control and Prevention. (1997). HIV/AIDS Surveillance Report, Midyear Edition Vol. 9, No.1.
30 Centers for Disease Control and Prevention, 1995 Youth Risk Behavior Surveillance System.
31 U.S. Bureau of the Census. Selected Social Characteristics of All Persons and Hispanic Persons, by Type of Origin: March 1996. Internet Release date: Frebruary 3, 1998.
32 Marin, B. and Gomez, C. (1994). Latinos, HIV Disease and Culture: Strategies for HIV Prevention. The AIDS Knowledge Base, HIV InSite; Peragallo, N. (1996). “Latino Women and AIDS Risk”, Public Health Nursing, Vol. 13, No. 3; Center for AIDS Prevention, UCSF Fact Sheet: What Are Latinos’ HIV Prevention Needs?;National Council of La Raza (1996). Center for Health Promotion HIV/AIDS Information Guide: HIV/STDs and Hispanic Women.
Survey Of Latinos Finds Widespread Concern About HIV/AIDS; Impact Of Disease Felt “Close To Home”
Report Documents Impact Of AIDS/HIV On Hispanics And Offers Guidance For Community Health Providers
Embargoed For Release Until:9:30 am, ET, Friday, May 1, 1998
For Further Information Contact: Tina Hoff or Matt James/KFF(650) 854-9400
Xiomara Sosa/COSSMHO(202) 797-4335
Washington, DC — Next week Latino leaders will gather at Harvard University for the first ever Latino “Leading for Life/Unidos Para la Vida” conference to discuss how to address the growing problem of HIV/AIDS among Latinos. As Latino leaders mobilize to address the problem of HIV/AIDS, most Latinos living in the U.S. today say they are extremely concerned about the impact of this deadly disease on their communities, families and themselves, according to a new national survey released today by the Kaiser Family Foundation, along with the National Coalition of Hispanic Health and Human Services Organizations (COSSMHO).
Highlights from the Kaiser Family Foundation National Survey of Latinos on HIV/AIDS:
One in two Latinos (50%) rate AIDS as the nation’s most urgent health problem, and nine in ten (91%) say it is a major threat to public health in this country;
Half of all Latinos (52%) say AIDS is a more urgent problem today for their local community than it was a few years ago and one in five (20%) say their community is losing ground on AIDS;
Two thirds of Latinos (67%) say AIDS is a very serious problem for people they know and a third (35%) say they personally know someone who has HIV or AIDS or who died from AIDS;
46% of Latinos say they are very worried about becoming infected with HIV, a level of worry which far exceeds that among a national sample of all Americans (24%), and 41 percent say their personal worry has grown in recent years.
Responding to the concerns and information needs of Hispanics about HIV/AIDS at the community level, COSSMHO also released today HIV/AIDS: The Impact on Hispanics. This report, which contains the most current data on the AIDS epidemic among Hispanics, including national trends as well as variations by region, supports the need to intensify community-based prevention and education efforts. Produced for community-based organizations, health and human services professionals, and others, it offers information for accessing Hispanics’ response to HIV/AIDS and suggestions for a course of action.
“At a time when public perception moves in the direction of viewing HIV/AIDS as a manageable disease, Hispanic communities continue to be devastated by this epidemic,” said Jane L. Delgado, Ph.D., President and Chief Executive Officer of the National Coalition of Hispanic Health and Human Services Organizations (COSSMHO).
COSSMHO recommends that every comprehensive community-based HIV/AIDS program should have the following:
Access to culturally and linguistically appropriate, voluntary and anonymous testing, and appropriate medical care for early diagnosis and treatment of HIV infection;
AIDS education curricula (that include information about HIV/AIDS, skill building on condom use, the interpersonal challenges of negotiating safer sex, and avoiding drug use) to be used in junior- and senior-high school settings, and targeted settings for out-of-school youth;
Outreach, education, and prevention — including the provision of prevention tools such as sterile injection equipment — to persons who are injecting drugs.
THE FACTS from HIV/AIDS: The Impact on Hispanics:
As of June 1997, a total of 109,252 Hispanic AIDS cases had been reported in the U.S. While Hispanics make up 12 percent of the U.S. population (including Puerto Rico), they account for 18 percent of all AIDS cases in this country. This represents a continued upward trend: in 1995, Hispanics accounted for 15 percent of all AIDS cases. While AIDS mortality declined by 32 percent in 1996 for non-Hispanic whites, Hispanics experienced a 20 percent decline and non-Hispanic blacks a 13 percent decline.
There is significant variation in the regional distribution of Hispanic AIDS cases by exposure category. In the Eastern part of the U.S. and Puerto Rico, injection drug use (IDU) constitutes the most significant exposure category for Hispanic AIDS cases (MA, NJ, NY). For the other states studied in this report (AZ, CA, CO, FL, IL, NM, TX), men who have sex with men represent the most significant exposure category.
The Role of Information in Fighting HIV/AIDS
According to the Kaiser Family Foundation survey, almost all Latinos know that HIV is sexually transmitted (98%) and that a pregnant woman with HIV can pass it to her baby (92%). Slightly fewer, though still the majority, know there is no cure for AIDS (77%) and that no vaccine against HIV is available (68%).
“Even those who are most knowledgeable about AIDS say there is more information they want, especially about the most practical aspects of HIV prevention: how to talk with children and partners, and where to go for testing and treatment,” said Sophia Chang, MD, Director of HIV Programs, Kaiser Family Foundation.
While Latinos know the basic facts about HIV/AIDS, most say there are areas they want to know more about, such as how to talk with children (70%) and partners (51%) about this disease and where to go if exposed to HIV for testing (58%) and treatment (63%). Many (41%) also say that to help guard against the spread of HIV they want more information about how to properly use condoms. Importantly, respondents interviewed in Spanish (50% of the sample) cited an even greater desire for information in all areas, highlighting the importance of making education and prevention materials available in both English and Spanish.
The media, especially television and radio, is a leading source of information about HIV/AIDS for Latinos. Seven in ten Latinos (70%) say they heard something about HIV/AIDS in the past month on a television news program, and two in five (44%) got information from an entertainment show on television. Radio talk or call-in shows (42%) and other radio programming (34%) also figure as information sources. Beyond the media, health care providers (32%), family and friends (28%), and the church (20%) are the next most commonly named resources on HIV/AIDS. There is also some variation in information resources used by Latinos depending on the language of their interview: Latinos who were surveyed in Spanish were most likely to have gotten information about HIV/AIDS from broadcast outlets, including television news (73%) and entertainment (49%) programming and radio call-in or talk shows (48%); those who were interviewed in English also most frequently named television news programs (67%), but were more likely to turn to print media such as magazines (56%) and newspapers (50%).
Taking the Lead: Whose Responsibility?
Latinos see a variety of players in the fight against AIDS, giving slightly higher marks to community level efforts than to government. Latinos see community groups, such as local health care providers, churches, and schools, as among the most concerned and most active in reducing the impact of the epidemic. Fewer Latinos say government at any level cares or does as much in the fight against AIDS. Among all groups — community and government — Latinos leave room for more action.
In terms of what is needed to fight against the disease, Latinos strongly support more government efforts. Two in five (44%) say the government spends too little money on HIV/AIDS and the majority supports increased spending across a range of areas including education and other prevention activities (94%), expanding access to new drug therapies (94%), and research to find more effective treatments (95%) as well as a vaccine (94%).
A majority (56%) of Latinos also favor needle exchange – programs that offer clean needles to IV drug users in exchange for used ones. Opinions on this issue, however, appear to be influenced by how it is presented. When given an argument made by opponents of needle exchange – that it gives tacit approval of illegal drug use – support is lower among Latinos: 41% favor, 56% oppose.
Survey Methodology
The Kaiser Family Foundation National Survey of Latinos on HIV/AIDS is a random-sample national survey of 802 Latino adults, 18 years and older. The survey was designed by staff at the Foundation and conducted by telephone in both English and Spanish by Princeton Survey Research Associates (PSRA) between September 19 and October 26, 1997. The margin of sampling error is plus or minus 4 percent. The margin of sampling error may be higher for some of the sub-sets in this analysis.
The Kaiser Family Foundation, based in Menlo Park, California, is an independent national health care philanthropy and is not associated with Kaiser Permanente or Kaiser Industries.
The National Coalition of Hispanic Health and Human Services Organizations (COSSMHO) for 25 years has been connecting communities and creating change to improve the health and well-being of Hispanics in the United States. Headquartered in Washington, DC, COSSMHO is the sole national organization focusing on the health and human services needs of the diverse Hispanic communities. COSSMHO’s membership consists of thousands of front-line health and human services providers and organizations serving Hispanic communities in the United States and Puerto Rico.
A more detailed report on the survey findings, including analysis by age, gender, region of the country, religion, income and education, is available by calling the Kaiser Family Foundation’s publication request line at 1-800-656-4533 (Ask for 1392 in English or 1393 in Spanish).
The television ratings system was designed to help address concerns about television content by giving parents assistance in monitoring what their children watch. This survey asks parents and children about their knowledge, opinions and use of the TV ratings system. 446 children ages 10-17 were also interviewed. The survey was conducted for the Foundation by Princeton Survey Research Associates.
Measuring the Effects of Sexual Content in the Media: A Report to the Kaiser Family Foundation
This report provides a history of the research on sexual content in the media, an overview of the methods available for studying the effects of media, a discussion of some of the difficulties in doing research on this topic, and specific recommendations for future research on the effects on young viewers of sexual content in the media. This Report is available in Adobe Acrobat Format
A random-sample national survey of 802 Latino adults, 18 years and older. The survey, designed by staff at the Foundation and conducted by telephone in both English and Spanish by Princeton Survey Research Associates (PSRA), examines Latino’s knowledge, values and beliefs with respect to HIV and AIDS. The survey data is also broken down into subgroups within the Latino community including women, young adults, parents, opinion leaders, and those with less education and lower incomes. The findings were presented at the first ever Latino “Leading for Life/Unidos Para la Vida” conference to discuss how to address the growing problem of HIV/AIDS among Latinos. This report is also available in Spanish as #1393 .
