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.
Impact of Potential Changes to ERISA: Litigation and Appeals Experience of CalPERS, Other Large Public Employers and a Large California Health Plan – Report
The Employee Retirement Income Security Act (ERISA) currently preempts state law related to the wrongful denial or delay of health benefits to the extent that such laws relate to a health benefit plan sponsored by a private employer. This preemption of state law has protected private employers who sponsor health benefit plans from legal actions based on such laws; courts have found that the scope of preemption extends to lawsuits against insurers and HMOs as well. ERISA provides the exclusive avenue for remedies in such cases, which generally are limited to the value of the denied benefit and, in some cases, reasonable attorneys’ fees. ERISA does not allow claims for punitive damages or noneconomic damages.
In addition, ERISA governs the grievance and appeal procedures under private employee health benefit plans. Grievance and appeal processes provide an opportunity for individuals to resolve differences with their health plans before resorting to the court system. The Department of Labor, which administers ERISA, plans to issue regulations to require the grievance and appeal procedures of private sector employee health benefit plans to meet certain standards, including time frames for the resolution of appeals. Current greivance and appeal rules do not distinguish between types of claims for benefits (e.g., emergency vs. non-emergency services) and do not require external appeal procedures.
Legislative Proposals
Legislation before Congress includes proposals to narrow the scope of ERISA preemption, allowing individuals to bring suit under state law principles against employee health benefit plans and other parties involved in the administration of the health plan. Many bills also have been introduced to amend ERISA and mandate the use of specific grievance and appeal processes, such as imposing faster turnaround periods for claims related to emergency services, specifying the manner in which decisions are to be made in an internal grievance and appeal process, and requiring the opportunity for a third-party review of certain appeals.
The implications of requiring the use of specific grievance and appeal processes and of allowing individuals to sue managed care organizations and other parties involved in the administration of a private employee health benefit plan are difficult to quantify. However, the experience of state and local government employers, which are not covered by ERISA, may be illustrative. Because such plans have not been shielded from lawsuits based on state law, their grievance and appeal processes and the incidence of litigation experienced by their health benefit plans may be a source of useful information in estimating the frequency of litigation that might be experienced by employers and health plans in the private sector if the scope of ERISA were narrowed.
Approach
To gather information on the experience of state and local governmental employers, we utilized contacts within the industry and from previous projects to identify individuals responsible for administering the plans’ grievance and appeal processes and who had familiarity with and/or involvement in the litigation experiences of three large government entities that sponsor group health insurance coverage. The entities we identified are the California Public Employees Retirement System (CalPERS), the Los Angeles Unified School District (LAUSD) and the State of Colorado Employee Benefit Plan.
CalPERS provides health care coverage for approximately one million members. LAUSD covers about 70,000 members, and the State of Colorado Employee Benefit Plan covers about 30,000 members. CalPERS covers both active employees and retirees while LAUSD and the State of Colorado Employee Benefit Plan provide health care coverage for active employees only. Enrollment in managed care plans for each of these employers is 80% or higher, with CalPERS and the State of Colorado Employee Benefit Plan having 80% managed care enrollment and the LAUSD having 100% of its enrollees in HMOs or HMO-based Point of Service plans.
In gathering our information, we conducted multiple telephone interviews with individuals with extensive involvement in administrative appeals and litigation experience of health benefit issues for these government-sponsored health benefit programs. We sought information regarding the frequency, nature and costs associated with the appeals and litigation that these organizations have experienced. The individuals interviewed have had direct involvement in appeals and litigation for their organizations over an extended period of time, ranging from seven to fourteen years. In addition, for CalPERS we reviewed Evidence of Coverage booklets, internal procedures, legislation and regulations to obtain a more complete understanding of existing appeal procedures.
Findings
Each program has an internal grievance and appeals system established for individuals who disagree with a claims decision. The program grievance and appeal rules require that each step of the appeals process be exhausted prior to moving on to the next steps to resolve grievances. Under most state laws, including California and Colorado, an individual must exhaust available administrative procedures before bringing suit in state court. Therefore, a plan’s grievance and appeals system provides a forum in which many benefit disputes are resolved, avoiding the need to file suit against a health plan, administrator, or employer.
CalPERS Appeal Procedures
CalPERS has a formal multistage appeal structure. The legal and regulatory foundation of this program is Section 22815 of the California Government Code and Section 555.1 of the California Code of Regulations. CalPERS requires that the appeals procedure be included in the Evidence of Coverage booklets for each of the HMOs and PPOs that contract with CalPERS. In addition CalPERS has developed a General Procedures for Administrative Hearings brochure for its members to understand the appeal process. This brochure is particularly useful for those appeal situations where the member is representing himself or herself.
The multistage appeal process involves an internal appeal procedure of the health plan, administrator, or HMO, and a subsequent appeal to CalPERS. Each successive stage is available only after exhausting the preceding stage of the appeal procedure. Time limits are included for each stage of the process ranging from 30 to 60 days, although time limits are not specified for all of the steps in each stage. For example, an individual must file with the plan his or her initial objection within 30 days of the action that is being appealed.
An appeal to the health plan, administrator, or HMO typically involves two to four steps, depending on the plan through which the individual receives coverage. A four-step internal appeal procedure would include:
initial objection to the action;
request for reconsideration;
request for administrative review; and
final appeal to the health plan’s Consumer Appeals Department.
In 1995 California enacted additional requirements for the HMO appeal processes that established 30-day time limits at each stage of an appeal and an expedited appeal procedure in life threatening situations. These regulations became effective in April 1996 and January 1997 and included reporting requirements, penalties for non compliance and HMO-funded toll free access to the Department of Corporations (the HMO regulator in California). The health plan appeal process resulting from these reforms may take up to 60 days provided all information is correctly provided by the member and the member does not use the expedited appeal procedure. Prior to this legislation the appeal process could take up to 90 days.
Upon exhausting the plan’s internal appeal process, an individual may be able to appeal to CalPERS, which has a three-step appeal procedure:
an informal “consult and confer” process;
a formal hearing process before an Administrative Law Judge; and
a formal decision by the CalPERS Board of Administration.
If an appeal proceeds to litigation, California law protects CalPERS from punitive damage awards. This protection from punitive damages does not extend to the health plan.
The member is responsible for the legal costs of mounting an appeal, excluding any CalPERS staff costs. Although many California HMOs use binding arbitration, HMOs that contract with CalPERS must accept the CalPERS appeal process. Consequently, all CalPERS members have access to an external appeal process. CalPERS’s staff believe that members use CalPERS’s appeal process regardless of any binding arbitration requirements by an HMO that might otherwise apply.
The CalPERS appeal process is available for claims relating to the acts of and failure to act by contracting health plans, administrators and HMOs. For example, the process is available for appeals of decisions relating to improper payment for covered services, denial for coverage of services and eligibility determinations. The appeal process specifically excludes issues of medical malpractice, and CalPERS makes clear in its Evidence of Coverage brochure that appeals to CalPERS cannot be made related to medical malpractice.
CalPERS Appeal and Litigation Experience
For the seven-year period from 1991 through 1997, CalPERS indicated that there were approximately 60 appeals resolved at the administrative hearing stage of the appeal process (stage 2 of 3) as described above, for an annual rate of 0.9 appeals per 100,000 enrollees. The issues raised in these appeals generally involved denials of benefits and reimbursement disputes. The underlying medical conditions were generally not life threatening. The average internal cost to CalPERS for the preparation of a case before the administrative law judge was estimated by staff to be $10,000.
Over the same time period, between fifteen and twenty appeals reached the level of civil litigation, for a rate of 0.3 per 100,000 enrollees (i.e., the member was dissatisfied with the decisions resulting from the appeal process and proceeded to court. These civil litigation suits were brought against the health plans). Approximately twelve cases concerned denial of benefits and benefit exclusions. The medical conditions underlying these appeals were more serious and usually life threatening. The majority of these cases involved autologous bone marrow transplants for the treatment of breast cancer when this procedure was excluded based upon its experimental nature. Two or three cases involved eligibility issues. Two cases concerned coverage for twenty-four hour skilled nursing care, and one case involved coverage of rehabilitation services for an autistic child.
The majority of these cases were settled prior to trial; in many cases the complainant received at least partial payment for the requested services in the settlement. It is important to note that a significant number of the cases involved experimental procedures in a fast developing area of cancer treatment. It is very likely that similar incidents involving a cluster of lawsuits will occur in the future whenever advances in medicine result in experimental procedures that show promise of effectively treating a life-threatening disease.
Experience of Other Large Public Employers
We also interviewed administrators of the Los Angeles Unified School District (LAUSD) and the State of Colorado Employee Benefit Plan, both of which operate under rules that are largely similar to those used by CalPERS. Over the last fourteen years the staff of LAUSD could recall only three appeals that resulted in litigation. One of these cases involved autologous bone marrow transplant for breast cancer. The other two cases involved eligibility issues. Over the last seven years the State of Colorado Employee Benefit Plan had three appeals reach the litigation stage. One of these cases involved autologous bone marrow transplants for breast cancer.
Summary
All three programs reported very low rates of litigation ranging from 0.3 to 1.4 cases per 100,000 enrollees per year. The litigation rate per 100,000 enrollees decreased as the number of persons covered by the program increased. Grievances that reached the CalPERS administrative hearing stage numbered 0.9 per 100,000 enrollees per year. Assuming an average cost per case for litigation of $100,000 and the $10,000 estimate from CalPERS for the cost of an administrative hearing, the direct monthly cost per enrollee related to litigation ranged between $0.03 and $0.13.
The frequency of administrative appeals and litigation reflect the actual experience of CalPERS, LAUSD and the State of Colorado Employee Benefit Plan. This experience is most useful in estimating the administrative appeal and civil litigation exposure for plan sponsors. The specific features of the proposed modifications to ERISA will need to be compared to the CalPERS appeal process to determine any adjustments that may be needed to use these estimates to forecast the impact of the change. Among the factors that could affect the frequency and cost of any appeal process are the internal time limits, the availability of punitive or other damages, and any differences in appeals and litigation between government and non-government plan sponsors.
Impact on Health Insurers and HMOs
Because health insurers and HMOs are more actively involved in the administration of benefit plans and do not enjoy an employee/employer relationship with their members, they may be subject to greater appeal and litigation risks than plan sponsors. Whether health insurers and HMOs are vulnerable to punitive damages awards depends on the relevant state law. These health plans may be subject to federal rules governing appeal procedures, which would likely be enacted if liability reform is enacted.
We have identified two sources of data on the changes in the frequency of litigation for a large health insurer and HMO in California that provide some indication of the costs associated with a modification in the ERISA protection for health insurers and HMOs. These include:
the plan’s litigation experience prior to the 1987 decision in Pilot Life v. Dedeaux, in which the U.S. Supreme Court held that ERISA preempts a lawsuit based on state law against an insurance company for improper claims processing, including the manner in which decisions are made regarding the payment of claims; and
the plan’s litigation experience in the individual health insurance market.
Carrier’s Litigation Experience
It is noteworthy that the California carrier experienced a significant drop in the rate of litigation concerning improper claims processing for benefits and determination of covered benefits under an ERISA-covered plan after the Supreme Court’s 1987 decision in Pilot Life. From 1985 to 1988 this carrier reported an average of 3.2 litigation cases per 100,000 members, which largely reflects claims under group health plans, although this figure also reflects some claims related to individual plans. Our interviewee reported that lawyers for consumers typically attempted to bring a claim as a representative of a group rather than of an individual because there was perceived to be a greater probability of success.
Subsequent to the Supreme Court’s ruling that ERISA preempts cases concerning improper claims processing, litigation cases dropped to 2.4 per 100,000. (This number also includes both group and individual coverage cases.) This change in total litigation experience represents a decrease of 25%, although it is important to note that it is not possible to split the litigation experience between group and individual claims for these two time periods.
Individual Coverage
ERISA does not apply to individual health insurance coverage, and health plans active in the individual health insurance market have been subject to lawsuits under state law. Beginning in 1993 the health plan we examined began to track litigation related to individual insurance policies separately from litigation related to group health plans. The plan experienced 9.3 lawsuits per 100,000 members per year related to individual coverage for the period January 1993 through June 1996, compared to an average of 1.3 per 100,000 for members covered by groupinsurance.
This difference in litigation experience between individual and group coverage may be partially attributable to differences in ability to sue, the extent of internal and external appeal processes, and differences in the health care needs and circumstances of individuals with group versus individual plans. Those individuals who purchase insurance on their own may have greater health care needs, or may have a greater sense of ownership of the insurance benefit compared to those who receive coverage as an employee benefit. Additionally, many individual policies contain specific limitations on benefits (known as “riders”) that may lead to additional litigation if members attempt to obtain coverage for services that have been excluded from their benefit plan. Consequently, an exact extrapolation cannot be made of the difference in experience, although the data can be used to gain an understanding of the order of magnitude of potential changes in litigation rates.
General Cost Impact
An important consideration in evaluating the effect of potential changes in liability on health plan costs is the average cost per claim in either damages or settlement and the number of claimants. A litigation rate of 3.2 per 100,000 plan members with an average cost per claim of $100,000 translates to $0.27 per person per month. This amount represents approximately 0.25% of premium. If this rate were to double, health plan premiums related to litigation would increase to $0.54, or approximately 0.5% of premium. Note that the numbers provided here are for illustrative purposes only; we do not believe it would be valid to extrapolate the experience of one health plan to the entire managed care health insurance market.
The effect of a change in liability may be expected to vary for health plans that are currently active in the individual insurance market compared to those who sell health insurance only to groups. Those plans offering individual insurance may have greater experience with litigation related to medical malpractice and other benefit issues. Health plans that offer only group insurance coverage may see greater changes in their litigation experience and associated costs. Whether a health plan uses binding arbitration to settle cases may also affect its litigation experience; binding arbitration is likely to reduce the number of disagreements regarding health plan coverage that would reach the courts. Finally, the size of the health plan may impact these costs on a per member per month basis with per member per month costs decreasing as the enrollment of the health plan increases.
Conclusions
We interviewed three large public employers that are not protected by ERISA regarding their litigation experience. All three reported very low rates of litigation ranging from 0.3 to 1.4 cases per 100,000 enrollees per year. The litigation rate per 100,000 enrollees decreased as the number of persons covered by the program increased. Grievances that reached the CalPERS administrative hearing stage numbered 0.9 per 100,000 enrollees per year. The groups we interviewed have strong internal appeals procedures. In addition, other characteristics of the grievance process may have limited the number of cases reaching the civil litigation stage. These include:
Limited availability of punitive damages;
The employers in question were all public employers; it may be that public employees have a different propensity to sue than employees of private firms; and
The plan sponsors were specifically not responsible for medical necessity determinations.
We believe the information discussed here provides some guidance regarding potential changes in litigation rates that may result from a change in rules regarding ERISA protections. The net effect of this type of rule change is difficult to project, as behavior patterns may change with a change in law. An assessment of the effects of this legislative change should take into account the type of internal and external appeal processes that may be in place concurrent with the change in health plan liability. Changes in health plan behavior, including loosening or clarifying utilization review criteria may also occur. If health plans respond to a change in liability by loosening utilization review standards so as to avoid exposure to some litigation there may be an increase in health care costs resulting from increased utilization. If health plans respond by clarifying their standards and communicating those standards to providers and health plan members there may be little change in health plan costs, or perhaps decreases in costs, associated with changes in utilization.
The experience of one large health plan in California before and after clarification of the application of ERISA protection to health plans and HMOs also provides information on potential changes in litigation rates. For that health plan, litigation rates dropped by 25% when the ERISA protection was clarified. This rate may be expected to return to its pre-1988 level if liability rules were changed. Litigation costs for this health plan prior to theses changes represented approximately 0.25% of premium.
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.
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.
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 .
Contacts:Tina Hoff/Kaiser Family Foundation (415) 854-9400, orMatt James/Kaiser Family Foundation (415) 854-9400
Washington, DC – As the first television season using the new ratings system draws to a close, half of all parents with children ages 2-17 (54%) say they are using the new ratings to help guide their children’s viewing, and 45% say they have stopped at least one of their children from watching a particular show because of its rating, according to two new surveys of parents and children by the Kaiser Family Foundation. But more than eight out of ten parents who use the ratings say there are improvements that would make the ratings more helpful, and many do not have a good understanding of how the current system works.
The survey also finds that parental concerns about television content are rising. The number of parents of children ages 2-17 who say they are concerned “a great deal” that their children are being exposed to too much sexual content on TV increased from 43% in an October 1996 Kaiser Family Foundation survey to 67% in April, 1998, when this survey was conducted. The number expressing the same concern about violent content increased from 39% to 62% over the same period.
The TV ratings system was designed to help address concerns about television content by giving parents assistance in monitoring what their children watch. Nearly all of the parents who have ever used the ratings say they have found them “useful” (42% “very” and 51% “somewhat”). A smaller percentage of parents who use the system say the ratings have been “successful” in keeping children from being exposed to inappropriate material (13% “very” and 51% “somewhat”).
“Parents say they are more concerned than ever about the impact of TV on their kids,” said Drew Altman, President of the Kaiser Family Foundation. “The good news for the ratings system is that many parents are using the ratings and find them helpful; but they do not always understand the system, and there are changes they’d like to see made.”
One out of five parents say (18%) they have not heard about the ratings system. Twenty-seven percent of parents say they have heard of the ratings system but “never” or “hardly ever” use it. The most common reason given by these parents for not using the ratings is that they would rather decide for themselves what is appropriate or not for their children to watch (31% say this is the leading reason).
Many Children Also Use Ratings.
In a companion survey of children, a third (36%) of 10-17 year olds report that at least once, one of their parents has stopped them from watching a show because of its rating. The survey also revealed that just over a third (36%) of all children say they themselves have decided not to watch a particular show because of the rating it received. But children have mixed reasons for tuning out: forty percent say it is because their parents wouldn’t want them to watch the show, while 26% say it is because they think the show is meant for younger kids.
Parents Say Changes Could Make Ratings More Useful.
Most parents who use the ratings (73%) say they learn a show’s rating from seeing the symbol on-screen at the beginning of the show, but many (67%) say even when they are looking for the rating they miss seeing it. More than eight out of ten parents who use the ratings say they favor having the rating appear on screen more often (84%) or announced out loud at the beginning of the show (82%), but most do not favor having the rating stay on screen throughout the entire show (42% support, 57% oppose).
Many Parents Need More Information About Ratings.
The survey indicated that many parents could use more information about how the ratings system works, including what kinds of shows are rated, who rates programming, and what the different rating symbols mean. Even among those parents who are aware of the ratings system,
Less than half know that children’s shows (49%), talk shows (40%) and soap operas (23%) are rated.
About half (54%) know what at least six of the eleven rating symbols mean, while 46% know five or fewer.
Thirty-one percent know that the television industry rates programs itself, while 32% believe that an independent review board does the rating. Nine percent think the government rates shows, and 27% say they don’t know who does the rating.
Parents Say Ratings Accurately Depict TV Content.
Seventy-one percent of parents who use the ratings say they provide “reasonably accurate” information about TV shows, although half (50%) say they have on occasion disagreed with how a particular show was rated. Only 12% of parents who use the ratings say they know who to complain to in such a situation.
Parents would use a v-chip.
Nearly two-thirds of all parents (65%) say that if they had a v-chip in their home, they would use it to block certain programming. But most parents say they are either “not too likely” (24%) or “not at all likely” (45%) to go out and buy a TV with a v-chip (or a set-top box) in the next year or two.
The new ratings, which combine both age-based ratings and content descriptors, were implemented in October 1997 as the result of an agreement among advocacy groups, policymakers and representatives of the television industry. NBC and BET have declined to use the content descriptors. The ratings are designed to work in conjunction with the v-chip device, which will allow parents to block shows with certain ratings from their homes. The v-chip is expected to be available in some new TV sets and in set-top boxes within a year; all new sets will be required to have a v-chip within a year and a half. Following are the rating categories:
TVY: All children. This program is designed to be appropriate for all children.
TVY7: Directed to older children. This program is designed for children age 7 and above.
TVG: General audience. Most parents would find this program suitable for all ages.
TVPG: Parental Guidance Suggested. This program contains material that parents may find unsuitable for younger children.
TV14: Parents Strongly Cautioned. This program contains some material that many parents would find unsuitable for children under 14 years of age.
TVMA: Mature Audience Only. This program is specifically designed to be viewed by adults and therefore may be unsuitable for children under 17.
V: Violent content.
S: Sexual content.
L: Language.
D: Suggestive dialogue.
FV: Fantasy violence.
Methodology
Parents, Children, and the Television Ratings System reports on the results of two national random sample surveys designed by the Kaiser Family Foundation and Princeton Survey Research Associates (PSRA), and conducted by PSRA by telephone between April 2-26, 1998. 1,358 parents of children ages 2-17 and 446 children ages 10-17 were interviewed. The margin of error for the survey of parents is plus or minus 3%, and for the survey of children is plus or minus 5%.
The Kaiser Family Foundation, based in Menlo Park, California, is an independent national health care philanthropy and not associated with Kaiser Permanente or Kaiser Industries. These surveys were conducted as a part of the Foundation’s Program on the Entertainment Media & Public Health, which was established to examine the impact of entertainment media in society, and to work with the entertainment industry, researchers and policymakers on important public health issues.
Copies of the summary of findings and questionnaires for the surveys reported on in this release are available by calling the Kaiser Family Foundation=s publication request line at 1-800-656-4533 (Ask for #1398).
The Report is available in Adobe Acrobat Format
The Chart Pack is available in Adobe Acrobat Format
