A Forum on the Implications of Changes in the Health Care Environment for Native American Health Care

Published: Jul 30, 1997

With the assistance of the First Nations Development Institute, the Henry J. Kaiser Family Foundation commissioned several studies of critical issues in Native-American health care. These studies examined the trends shaping the future of Native-American health care; the existing health systems and planning capacity in the Native-American health care system; the changes occurring in the IHS; the role of Medicaid in Native-American health care; the attitudes and preferences of Native American health care consumers; and the factors shaping the decisions being made by tribal leaders. The findings from these studies were presented at a Kaiser Forum on the “Implications of Changes in the Health Care Environment for Native-American Health Care,” in Washington, D.C., November 1996. The studies and a synthesis of the Forum discussion are published in this report.

Center on Budget and Policy Priorities Overview of Medicaid

Published: Jul 30, 1997

“DSH” Provisions…the Balanced Budget Act of 1997, P.L. 105-33

This report was prepared by the Center on Budget and Policy Priorities for the Kaiser Commission on the Future of Mediciad.

  • Report: Overview of Medicaid “DSH” Provisions…the Balanced Budget Act of of 1997, P.L. 105-33

HIV Capitation Risk Adjustment:  Conference Report

Published: Jul 30, 1997

HIV Capitation Risk Adjustment: Conference Report

This report provides an overview of conference proceedings which focused on developing managed care reimbursement strategies that will ensure quality care for people living with HIV and fair compensation for those providing care.

  • Report: HIV Capitation Risk Adjustment: Conference Report
Poll Finding

Kaiser/Harvard Health News Index, August 1997

Published: Jul 30, 1997

The August, 1997 Kaiser Family Foundation/Harvard Health News Index includes questions about major health issues covered in the news, including questions about the Non-profit and For-profit health care. The survey is based on a national random sample of 1,000 American conducted July 1- 31, 1997. The Health News Index is designed to help the news media and people in the health care field gain a better understanding of which health stories in the news Americans are following and what they understand about the health issues covered in the news. Every two months, Kaiser/Harvard issues a new index report.

A Special Series: The Kaiser Family Foundation and ABC/WCVB Local TV News Initiative

Published: Jul 1, 1997

The Kaiser Family Foundation is providing two resources on caring for an elderly relative produced by the American Association of Retired Persons (AARP) free of charge. They are being provided as part of a joint project with WCVB-TV in Boston, which aired a special series on this topic on July 28, 1997. The reports provided are: Nursing Home Life: A Guide for Residents and Families and Staying Home: A Guide to Long-Term Care and Housing.

A Special Series: The Kaiser Family Foundation and ABC/WCVB Local TV News Initiative – Report

Published: Jul 1, 1997

A Special Series

The Kaiser Family Foundation and ABC/WCVB Local TV News Initiative:

Caring For An Elderly Relative

Growing numbers of families today are struggling with the challenges of getting and paying for long-term care for elderly relatives. As the population ages and more women enter the workforce, the problems of caring for elderly relatives will only worsen. There are 1.6 million elderly residents in nursing homes today, but long-term care issues touch millions more families. In fact, more than one in four Medicare beneficiaries has a long-term care need, most of whom are cared for by family members at home. Families are in need of information about what health care services are available and how to pay for and arrange for such care.

As part of a special series to look in-depth at health care issues affecting Americans today, the Kaiser Family Foundation, ABC News and WCVB (Boston) have formed the Local TV News Initiative, a project designed to help the public to better understand the complex health issues facing Americans today. The first in this series focuses on Caring for An Elderly Relative. Two free booklets — “Staying at Home: A Guide to Long-Term Care and Housing” and “Caregiver Support Groups in America” both produced by AARP — are available by calling the Foundation’s publication request line: 1 (800) 656-4533.

Additional resources available on the Web are listed below:

Administration on Aging

    Information about how to contact local and state agencies who can help you obtain services, and a variety of other information of interest to elderly Americans.

Alzheimer’s Association

    Information about caring for people with Alzheimer disease including local and state resources.

American Association of Homes and Services for the Aging

    Information about how to choose a care provider or nursing home, and what you need to know about home and community-based services.

American Association for Retired Persons

    Information about a wide variety of topics of interest to elderly Americans including consumer guides to home health and nursing care services.

Health Care Financing Administration (Medicare and Medicaid)

    Information about the federal Medicare and Medicaid programs in general and specifically relating to the programs role in paying for home care and nursing home care.

National Association for Home Care

    Information about finding, choosing, and paying for home care services.

SPRY: Setting Priorities for Retirement Years Foundation

    Information and web page links to organization with more information about health issues, financial security, and Aging Network News.

Visit WCVB, the ABC affiliate in Boston who produced this specialseries on Caring For An Elderly Relative.

A Comparison of the Medicaid Provisions in the House and Senate Versions of the Balanced Budget Act of 1997 with Current Law – Report

Published: Jul 1, 1997

A Comparison of the Medicaid Provisions in the House and Senate Versions of the Balanced Budget Act of 1997 (H.R. 2015/S. 947) with Current Law

Prepared by Sara Rosenbaum, Julie Darnell, Center for Health Policy Research, The George Washington University Medical Center for the Kaiser Commission on the Future of Medicaid

July 1997

Table Of ContentsIntroduction iii A. Overview 1 B. Eligibility 2 1. General approach to eligibility 2 2. Poverty-level children 2 3. Disabled children 2 4. Continuous coverage of children 3 5. Presumptive eligibility of children 3 6. Legal immigrants 4 7. Undocumented aliens 4 8. Low-income Medicare beneficiaries 5 9. Disabled workers 5 10. Women with diagnosed breast cancer 6 C. Benefits 7 1. General approach to benefits 7 2. Early and Periodic Screening Diagnosis and Treatment (EPSDT) 7 3. Primary care case management services 7 4. Physician assistant services 8 5. Community-based mental health services 8 6. Home and community based care 8 7. Long-term care services 9 D. Premiums And Cost Sharing 10 1. General approach to premiums and cost sharing 10 2. HMO copayments 10 3. Cost sharing for qualified Medicare beneficiaries 10 4. Payment of Medicare premiums for specified low-income Medicare beneficiaries 11 5. Private health insurance premiums 11 E. Provider Reimbursement 12 1. General approach to provider reimbursement 12 2. Hospitals 12 3. Disproportionate share hospitals 13 4. Nursing facilities 14 5. Managed care entities 14 6. Federally qualified health centers and rural health clinics 14 7. Obstetrical and pediatric providers 14 F. Managed Care 15 1. General approach to managed care 15 2. Mandatory enrollment as a condition of coverage 16 3. Enrollment composition of Medicaid-qualified managed care organizations 16 4. Default enrollment 16 5. Guaranteed enrollment 17 6. Disenrollment 17 7. Conditions of participation for managed care entities 18 8. Prior approval of contracts with managed care organizations 19 9. Provider Plan protections 19 10. Payment of DSH hospitals 19 11. Quality assurance 19 12. Enrollment of Native Americans 19 13. Treatment of family planning services 20 H. State Administration Requirements 20 1. Privatization 20 2. Continuation of waivers 20 I. Federal Financial Assistance 21 1. Disproportionate share payments 21 2. Federal Medicaid assistance percentage (FMAP) 21 3. Federal financial assistance for care of aliens 21 Introduction

The following table compares current Medicaid law with the Medicaid provisions contained in the FY 1998 budget reconciliationmeasures (H.R. 2015, S. 947, The Balanced Budget Act of 1997) passed by the House and Senate on June 25, 1997.1 A House/SenateConference Committee has begun work on the key differences between the two measures. Most observers assume that the Conference willmove rapidly and will also entail negotiations with the White House in order to resolve remaining differences prior to the time that the ConferenceAgreement is finally approved by both Houses and sent to the President. When finally enacted into law, the legislation will make significantchanges in numerous federal health and welfare programs, including Medicaid.

While the House and Senate Medicaid provisions are highly similar, they contain certain notable differences that must be resolved. Bothmeasures would retain Medicaid as an individual entitlement with no caps to federal contributions to state Medicaid programs.2 Both bills wouldlimit federal contributions to states’ Disproportionate Share Hospital Payment (DSH) programs, with certain minimum DSH spending requirementsimposed on state agencies in the case of the Senate bill. Both measures would make numerous changes in federal requirements related toeligibility of non-citizens, benefits, the use of mandatory managed care arrangements, provider reimbursement, long-term care benefits, andstate administration. The Senate measure contains more provisions than the House in the area of state administration requirements for managedcare and on conditions of participation for managed care entities. The Senate bill also extends certain payment and participation protections tomanaged care entities that are not contained in the House bill.A. Overview Issue Current Law House (H.R. 2015) Senate (S. 947) 1. Summary Medicaid entitles individuals who meet eligibility conditions to coverage for a range of required and optional acute and long-term care services.

States are entitled to a federal contribution toward the cost of their programs calculated in accordance with a statutory formula.

Additional payments made to states for disproportionate share hospital (DSH) programs.

Certain providers, including hospitals, nursing homes, home health agencies, federally qualified health centers (FQHC), and rural health clinics (RHC) are entitled to reimbursements in accordance with certain rules.

Providers serving Medicare beneficiaries who also have Medicaid are entitled to the Medicare payment rate.

Copayments for Medicaid beneficiaries permitted only under limited circumstances.

States may offer managed care enrollment on a voluntary basis. Mandatory managed care enrollment requires states to obtain a waiver of the freedom of choice provisions (Section 1915(b) or Section 1115).

States may use private contractors to administer Medicaid programs but not to determine eligibility.

Prohibits medical assistance beyond emergency coverage to undocumented aliens. Retains Medicaid as an individual entitlement with a continued state entitlement to federal financing without a cap.

No change to current law.

Reduces federal contributions for state DSH programs.

Repeals Boren Amendment payment requirements for hospitals, nursing facilities and home health agencies.

Revised payment rules for FQHCs and RHCs.

No change to current law.

Expands state options to require cost sharing.

Permits states to mandate managed care enrollment for all Medicaid beneficiaries except special needs children.

Permits states to use private contractors to determine eligibility.

Includes new funding for states with high numbers of undocumented aliens. Retains Medicaid as an individual entitlement with a continued state entitlement to federal financing without a cap.

No change to current law.

Similar provision, but requires targeting of DSH hospitals.

Similar provision.

No change to current law.

Permits states to pay Medicaid rates for Medicare beneficiaries.

Similar provisions.

Permits states to mandate managed care enrollment for all Medicaid beneficiaries except special needs children and Medicare beneficiaries.

No similar provision.

No similar provision. B. Eligibility Issue Current Law House (H.R. 2015) Senate (S. 947) 1. General approach to eligibility Conditions coverage on numerous financial and categorical conditions of eligibility.

Individuals who meet eligibility requirements are entitled to coverage for medical assistance items and services covered under a State’s Medicaid plan when furnished by participating providers. Retains the entitlement to coverage among eligible individuals.

Permits states to condition coverage for all beneficiaries on mandatory enrollment in a managed care entity. Exempts special needs children (those who receive SSI or are institutionalized) from mandatory managed care enrollment. Retains the entitlement to coverage among eligible individuals.

Permits states to condition coverage for all beneficiaries on mandatory enrollment in a managed care entity. Exempts from the mandatory enrollment requirements special needs children and Medicare beneficiaries. 2. Poverty-level children Mandates coverage of all children up to age 19 who meet financial conditions of eligibility and who were born after September 20, 1983, thereby phasing in coverage for children under 19 to the year 2002.

States can expand coverage to children under poverty under 1902(r)(2) or Section 1115 waivers. Clarifies state option to immediately extend coverage to all children under age 19. Similar to House provisions. 3. Disabled children Children who are disabled and receive SSI automatically receive Medicaid in nearly all states. Disability criteria for children restricted under 1996 welfare reform legislation to remove functionally disabled children and to tighten criteria for mental illness-related disability. Approximately 150,000 children are expected to be removed from SSI; CBO estimates that most will requalify for Medicaid as poverty-level children. Authorizes states to provide Medicaid to all children who lose SSI as a result of welfare reform and who do not otherwise qualify for Medicaid. No change to current law. 4. Continuous coverage of children Terminates eligibility for children who no longer meet conditions of eligibility. Permits states to guarantee 12 months of eligibility following a determination of eligibility up to an age specified by the state, but not exceeding 19 years of age. Contains similar provision. 5. Presumptive eligibility for children Provides states with the option to extend a period of presumptive (i.e., temporary) eligibility for prenatal care in the case of pregnant women who have applied for Medicaid and who, based on preliminary information, appear to be eligible for coverage. Adds a presumptive eligibility option for children under age 19 and identifies as potentially qualified to make presumptive eligibility determinations the following: Head start agencies, child care providers and WIC programs. Federal expenditures attributable to services provided during presumptive eligibility period would be deducted from the amounts available to the states under the Child Health Block Grant. No change to current law. 6. Legal Immigrants Authorizes, but does not require states to extend coverage to most qualified aliens (i.e., non-citizens who are legal U.S. residents) who are otherwise eligible for Medicaid and resided in the U.S. prior to August 22, 1996.

Optional Medicaid coverage groups include legally resident SSI recipients who received SSI benefits on August 22, 1996, but will lose assistance as non-citizens. As of Spring 1997, seven states had elected not to extend Medicaid to some or all former SSI recipients who were qualified aliens.

Imposes 5-year time limit on Medicaid coverage for emergency care only for otherwise eligible qualified aliens who enter the U.S. on or after August 22, 1996. Restores SSI and Medicaid benefits to all qualified aliens who received SSI and Medicaid as of August 22, 1996.

Extends from 5 to 7 years the time period for which refugees who are eligible for SSI may receive assistance, thereby increasing the period of mandatory Medicaid coverage for emergency care.

Adds Cuban and Haitian entrants to the group of legal immigrants covered by the exemptions for refugees.

Exempts legal immigrants who are members of an Indian tribe from the restrictions on SSI and Medicaid eligibility. Restores SSI and Medicaid benefits to all qualified aliens who received SSI and Medicaid as of August 22, 1996. Extends coverage to qualified aliens were in the country and who subsequently become disabled and eligible for SSI but were not receiving SSI as of August 22, 1996.

Exempts from the restriction on SSI benefits persons found eligible after July 1996, on the basis of very old applications, as well as SSI recipients who were too disabled to meet the conditions of naturalization by the September 1997, deadline.

Similar to House Provision and eliminates 5 year ban on full Medicaid eligibility in the case of qualified aliens who are children under age 19.

Similar to House Provision and adds Amerasians.

Similar to House Provision. 7. Undocumented aliens Prohibits medical assistance beyond emergency coverage to undocumented aliens. Authorizes a new entitlement-based state grant program of $100 million ($20 million per year) for FY 1998 through FY 2002 for emergency services to each of the 12 States with the highest number of undocumented aliens, with each state’s allotment ratio equal to the same percentage as the number of undocumented aliens in the state bears to the nation, based on estimates prepared by INS. No similar Senate provision. 8. Low-income Medicare beneficiaries Requires states to pay for the premiums, deductibles and coinsurance to Qualified Medicare Beneficiaries (QMBs) with resources at or below twice the SSI resource-eligibility standard and with incomes at or below 100% of the FPL.

Requires states to pay Medicare premiums for Specified Low Income Medicare Beneficiaries (SLMBs) with family incomes at or below 120% of the FPL and resources at or below twice the SSI resource-eligibility standard .

Federal contributions to the QMB and SLMB program are at the state’s federal medical assistance percentage rate (between 50% and 79% of total state outlays). No change to current law.

Raises the SLMB eligibility standard for Part B premium assistance to 135% of the FPL and adds home health care cost-sharing assistance for individuals with family incomes between 135% and 175% of the FPL.

Sets the federal contribution level for new Part B premium payment requirements at 100%. No change to current law.

Establishes a “low-income Medicare Beneficiary Block Grant Program” to states to pay Medicare Part B premiums to Medicare Beneficiaries with family incomes between 120% and 150% of the FPL (level set by states).

No similar Senate provision. 9. Disabled workers Mandates coverage of persons “who previously received SSI if they continue to have a disabling physical or mental impairment, continue to meet all SSI requirements other than income from earnings, do not have enough earned income to disqualify them from special SSI coverage, and would be seriously inhibited from continuing to work in the absence of Medicaid and do not have enough earnings to provide a reasonable equivalent to Medicaid.” No change to current law. Adds sliding scale premium-based Medicaid coverage option for disabled workers with family incomes < 250% of the FPL and who, but for excess earnings, would be considered to be receiving SSI (and therefore eligible for extended Medicaid) as disabled workers. 10. Women with diagnosed breast cancer Women with breast cancer must meet Medicaid income and categorical criteria to become eligible for medical assistance for treatment of diagnosed breastcancer under Medicaid. No change to current law. Adds optional coverage for a limited Medicaid benefit package of breast cancer-related services for women under age 65 who are not otherwise eligible for Medicaid, whose incomes and resources meet standards established by the Director of the CDC breast cancer screening program, and who are diagnosed with breast cancer as a result of participation in the CDC’s breast cancer screening program.

Low income women screened through other programs or non-participating providers would not be covered.

The benefit package includes prescribed drugs, physicians’ services, FQHC and RHC services, laboratory and X-ray services, case management services, and services (other than room and board) to encourage completion of treatment including directly observed therapy.

Inpatient hospital care is excluded. C. Benefits Issue Current Law House (H.R. 2015) Senate (S. 947) 1. General approach to benefits Medicaid beneficiaries are entitled to coverage for a defined set of benefits. States are required to cover certain benefits as a condition of program participation and may elect to provide other benefits. Coverage must be sufficient in amount, duration and scope to reasonably achieve the purpose of the benefit and states are prohibited from arbitrarily discriminating in coverage based on a condition or diagnosis. Retains the existing defined benefit structure while adding new benefit options. Similar to House provision. 2. Early and Periodic Screening Diagnosis and Treatment (EPSDT) Provides for mandatory coverage of EPSDT benefits for eligible children < 21, which consist of periodic and interperiodic health exams, vision, dental and hearing care, and all medically necessary treatment recognized under the Medicaid statute regardless of whether services are covered for adults. Coverage levels exceed usual benefits offered by most commercial insurance plans. Directs the Secretary to contract a study of the actuarial value of the EPSDT benefit, including the medically necessary treatment requirement. Contains similar provision, but requires the Secretary to conduct a study of the whole EPSDT benefit (broader than its actuarial value). 3. Primary care case management services Primary care case management services are not an explicitly recognized Medicaid benefit. States may cover case management services at their option (case management services are required for children if medically necessary). Case management is defined as a service which assists a beneficiary obtain necessary medical, educational, health or social services. Adds a new primary care case management (PCCM) coverage option; PCCM benefits are defined as “case management-related services (including coordinating and monitoring of health services) provided by a primary care case manager under a PCCM managed care contract. Primary care means services customarily provided by primary care practitioners (including medical, health and lab services). Similar to House provision. 4. Physician assistant services Authorizes states to pay for the services of any licensed practitioner furnishing covered services within the scope of his or her practice. Specifically authorizes optional coverage of physician assistant services to the extent that they are lawful under State law. No similar Senate provision. 5. Community-based mental health services Authorizes coverage of a range of ambulatory diagnostic, preventive aand treatment services relate to mental illness and addiction disorders but no single all-inclusive out-patient service benefit for persons with mental illness.

States that elect to cover preventive, diagnostic, rehabilitation and treatment services for persons with mental illness must provide such services to all persons who need them regardless of their condition or diagnosis. No change to current law. Authorizes optional coverage of outpatient and intensive community-based mental health services for Medicaid beneficiaries.

States may elect this option without covering comprehensive outpatient clinical and rehabilitation services for other conditions.

Services include psychiatric rehabilitation, day treatment, intensive in-home services for children, assertive community treatment, therapeutic out-of-home placements (excluding room and board), clinic services, partial hospitalization and targeted case management. 6. Home and community based care Limits coverage of habilitation services under Section 1915(c) home- and community- based demonstrations to individuals who previously were institutionalized. Eliminates prior institutionalization requirement for habilitation services in the case of individuals participating in home- and community-based care demonstration programs. No similar Senate provision. 7. Long-term care services Mandates coverage of nursing facility, home health benefits and hospital services for all beneficiaries (including frail elderly), and gives states the option to cover a broad range of other long-term care benefits.

Authorizes the Secretary to waive otherwise applicable limitations on benefits, statewideness and eligibility in order to permit states to cover home and community based services. Establishes a new “Program of All Inclusive Care For the Elderly (PACE)” authorizing coverage of integrated acute and long-term care services. Optional PACEprogram benefit consists of all items and services covered under Medicare and Medicaid without limitation or condition related to amount, duration and scope (within PACE specified protocal for benefits) and without copayment and coinsurance.

Enrollment would be voluntary.

PACE services furnished through certified PACE program providers who are paid on a prospective, capitated basis, who comply with a PACE protocol, and meet conditions of participation. PACE program-eligible persons are individuals ages

State AIDS Drug Assistance Programs (ADAPs):  A National Status Report on Access – News Release

Published: Jun 30, 1997

Despite Funding Increases In Recent Years, Many States Limiting AIDS Drug Assistance Programs (ADAPs) In Response To Growing Demand And Costs

Drugs Covered, Eligibility, and State Contribution Vary Widely Across State ADAPs

Embargoed for release until: 9:30 am, EST, Thursday, July 10, 1997

Washington, D.C. — As expensive new drug therapies prove more promising in treating peopleliving with HIV/AIDS, a survey of the nation’s 52 state AIDS Drug Assistance Programs, or ADAPs,finds that despite an 85 percent increase in total program spending between 1996 and 1997, morethan half imposed limits to cope with growing demand and costs. Thirty-five ADAPs enacted at leastone “emergency measure” in the last year:

  • Seventeen transferred funds from other AIDS-specific services or other discretionary health department funds;
  • Sixteen instituted waiting lists for access to the program or protease inhibitors;
  • Fifteen capped or restricted access to protease inhibitors;
  • Thirteen capped the number of people served;
  • Eleven reduced the number of drugs covered; and
  • Seven restricted eligibility by lowering the income levels covered.

As of this month, 23 ADAPs continue to have an emergency cost-containment measure in place.

The study, which was conducted for the Kaiser Family Foundation by the National Alliance of Stateand Territorial AIDS Directors and the AIDS Treatment Data Network, also found wide variationacross the nation’s ADAPs in terms of income and medical eligibility criteria, state contribution to theprogram, and drugs covered:

  • Income eligibility ranges from coverage for people with incomes up to 100% of poverty ($7890 or less for one person) in Arkansas and Utah to a high of 400% above the federal poverty level in California, Hawaii, Idaho and Rhode Island.
  • In 1997, 30 ADAPs supplemented federal funding of the program with state money and 22 provided no additional contribution.
  • Most ADAPs cover at least some of the drugs that can be used in the combination drug therapies that are recommended for the treatment of HIV-positive individuals by the federal Public Health Service. Two states — New York and North Carolina –currently cover all available antiretrovirals. Only four ADAPs — Arkansas, Nevada, Oregon, and South Dakota — do not cover any of the approved protease inhibitors.

“At a time when new guidelines are calling for expanded access to AIDS drugs, state and federal policymakers face difficult decisions about how to meet the growing demand on state AIDS Drug AssistancePrograms,” said Sophia Chang, M.D., Director, HIV Programs, Kaiser Family Foundation.

In June of this year, the Public Health Service (PHS), part of the federal Department of Health andHuman Services, released draft guidelines for HIV antiretroviral therapy that recommend patients starton a combination drug treatment earlier in the course of the disease.The report concluded that theguidelines would put further pressure on state programs to finance needed drugs: “Although theimplications of implementing these new guidelines have not been established, they will likely increasepressure on state ADAPs to expand drug coverage and keep pace with expected client growth.””Unfortunately, many state ADAPs are unprepared to offer this standard of care to eligible patients whomay be candidates for triple combination therapy,” the researchers said.

Budget and Demand: What’s Been Happening Recently to ADAP?

Between 1996 and 1997, the overall ADAP budget including both federal and state contributionsincreased 85 percent from $208 million to $385 million. Over the last two years, ADAP budgetsnationally grew three-fold.

National ADAP Funding Source Changes Between 1996 and 1997Funding Source FY 1996(in millions) FY 1997(in millions) Percent Change Federal * $136.1 $ 249.6 + 83% State $ 53.7 $109.0 + 103% Other (includes Drug Rebates, Insurance Recovery) $ 17.7 $ 26.4 + 50% Total $207.5 $385.0 + 85% * Includes both Title I and II funds The report notes that while states may be reluctant to report ADAP budget shortfalls, at least in partbecause some state laws prohibit overspending of federal or state resources, in this survey elevenADAPs did indicate anticipating shortfalls in 1997: Alabama, Arizona, Arkansas, Colorado, Montana,New Mexico, Puerto Rico, Texas, Vermont, Washington State, and West Virginia. In addition, threeothers — Florida, Mississippi, and South Dakota — reported having had to severely limit services alreadythis year in response to increased demand and cost.

“While there has been a significant increase in both federal and state support to ADAP in the last year,states are spending their funds almost as soon as they receive them due to growing client demand andthe costly new standard of treatment. In many states, this translates into restricted access to AIDSdrugs,” said Joseph Kelly, Deputy Director, National Alliance of State and Territorial AIDS Directors.

Forty-two of the 52 ADAPs reported increases in the number of low-income HIV-positive people servedin the last six months of 1996, the most recent period for which information is available. Nationally, thenumber of clients served in December 1996 was 23 percent higher than in the previous July — anaverage increase of approximately 1,000 clients per month. Monthly program spending during the samesix month period increased overall by 37 percent, from $14.9 million to $20.4 million.

During the calendar year 1996, the national estimate of the total number of people served by ADAP was80,000. The report’s authors find that “in spite of very limited data, an estimate of those persons withHIV who would be eligible for the program range between 140,000 and 280,000 nationally,” a range thatwould imply a “two- to four-fold increase in potential ADAP clients.”

AIDS Drug Assistance Program, or ADAP, is a state-administered program that providesaccess to the drugs used to treat HIV and prevent the onset of related opportunistic infections forlow-income people living with HIV/AIDS who do not have adequate private or public healthinsurance. The program forms one link in the continuum of publicly-funded HIV care and servicesthat includes the Ryan White CARE Act, Medicaid, Medicare, and local indigent health careprograms. The 52 ADAPs — fifty states plus the District of Columbia and Puerto Rico — receivefederal funds through the Ryan White CARE Act. In 1997, thirty states contributed supplementaryfunding. In 1997 total federal and state ADAP spending was $385 million. States set the incomeand medical eligibility, determine which drugs will be covered and how they will be purchased anddistributed.

The Kaiser Family Foundation, based in Menlo Park, California, is a non-profit, independent nationalhealth care philanthropy and is not associated with Kaiser Permanente or Kaiser Industries. TheFoundation’s work is focused on four main areas: health policy, reproductive health, and HIV in theUnited States, and health and development in South Africa.

The National Alliance of State and Territorial AIDS Directors (NASTAD) represents the chiefHIV/AIDS program managers in every U.S. state and territorial health department responsible foradministering federally-funded HIV/AIDS prevention surveillance, health care, supportive service andhousing programs, including Title II of the Ryan White CARE Act. Established in 1992, NASTADprovides a forum for technical assistance and dissemination of information about effective HIVprevention and continuum of care programs among state AIDS directors.

The AIDS Treatment Data Network (ATDN) operates the Access Project, a nationwide database ofAIDS Drug Assistance Programs, Medicaid Programs and pharmaceutical industry-sponsored drugaccess programs, as well as provides information about drugs used to treat HIV/AIDS.

Copies of State AIDS Drug Assistance Programs: A National Status Report on Access can beordered by calling the Kaiser Family Foundation’s toll-free publications request line at 1-800/656-4533. (Ask for report #1275).

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State AIDS Drug Assistance Programs: A National Status Report on Access:Press Release Report State Data

State AIDS Drug Assistance Programs (ADAPs):  A National Status Report on Access – Main Page

Published: Jun 30, 1997

State AIDS Drug Assistance Programs (ADAPs): A National Status Report on Access

A survey of AIDS Drug Assistance Programs or ADAPs, which provide drug financing for people living with HIV/AIDS who do not have private or public health insurance, in the fifty states and the District of Columbia and Puerto Rico. The study includes information on ADAP eligibilty requirements, budgets, state contribution to the program, drugs covered and “emergency measures” states have taken to contain costs.

For an updated report, please see National ADAP Monitoring Project: Interim Technical Report, #1379.

State AIDS Drug Assistance Programs (ADAPs): A National Status Report on Access – Report

Published: Jun 30, 1997

State AIDS Drug Assistance Programs: A National Status Report on Access

Acknowledgments

This report would not have been possible without the generous financial support of the Henry J. Kaiser Family Foundation and their continuing commitment to be at the forefront of HIV/AIDS policy issues. The authors would especially like to thank Dr. Mark D. Smith, who assisted with initiating the project and Dr. Sophia Chang and Tina Hoff of the Kaiser Family Foundation for their support, encouragement and expert advice in shaping this report.

We owe a great deal of gratitude to our project advisory committee members who reviewed and provided suggestions for this report and our national ADAP survey. They are: Moises Agosto, National Minority AIDS Council; Dr. Roxanne Cox-Iyamu, Whitman Walker Clinic; Anne Donnelly, Project Inform; Anita Eichler, Division of HIV Services (HRSA); T. Randolph Graydon, Health Care Financing Administration; Tracey Hooker, National Conference of State Legislatures; David Mulligan, Massachusetts Department of Public Health; Tracey Orloff, National Governors’ Association; Valerie Reeder, Heaven in View, Inc.; Gary Rose, formerly of AIDS Action Council and now with IssuesSphere; and Jane Silver, American Foundation for AIDS Research.

We also wish to express our gratitude to the members of the National Alliance of State and Territorial AIDS Directors (NASTAD) and the AIDS drug assistance program (ADAP) coordinators across the country for completing the national ADAP survey that was the basis for this report. We are truly grateful that, in the midst of a time of crisis, and often with minimal or non-existent staff support, these individuals took the time to respond to our survey and numerous follow up telephone calls.

Finally, special thanks to the state AIDS directors, ADAP program managers, state and federal officials and HIV/AIDS policy advocates who devoted additional time to review and provide feedback on the draft of this report. Their contributions, along with those of our project committee, have helped to make this summary report and its companion technical report among the most comprehensive and useful documents on the status of ADAPs ever published.

The principal authors of this report are Arnold Doyle, Richard Jefferys and Joseph Kelly.

The National ADAP Monitoring Project

In an effort to monitor the rapidly changing fiscal and scientific environments in which state AIDS drug assistance programs (ADAPs) are operating, and the impact of these changes on the programs and the individuals that they serve, the National Alliance of State and Territorial AIDS Directors (NASTAD) was commissioned by the Henry J. Kaiser Family Foundation, Menlo Park, CA to conduct a two-year National ADAP Monitoring Project. NASTAD is uniquely qualified to monitor the situation of state ADAPs as it is an association of the individuals who direct AIDS prevention, care and treatment services at the state level. NASTAD’s co-funded partner in the project, the AIDS Treatment Data Network (ATDN), is one of the most highly respected HIV/AIDS treatment information centers in the nation; ATDN maintains an on-line information library of the most recent treatment advances in HIV/AIDS, as well as detailed information on publicly- and privately-funded sources of reimbursement for HIV/AIDS treatments, including ADAPs.

Through the National ADAP Monitoring Project, NASTAD and ATDN will produce summary and comprehensive technical annual reports on the status of state ADAPs, with follow-up reports at six-month intervals, over the next two years. This July 1997 report provides a summary of the major findings of a national ADAP survey completed in March 1997. A longer, more comprehensive technical report based on the national survey is available through NASTAD at (202) 434-8090 or the Kaiser Family Foundation (800) 656-4533. Both the summary report and the technical report are also available for downloading from the Internet at http://www.aidsnyc.org/adap/. This Internet site, developed by ATDN, also contains detailed descriptive information about every state ADAP including program eligibility, application procedures, access and drug coverage. NASTAD and ATDN can also be reached at the following addresses:

    The National Alliance of State and Territorial AIDS Directors444 North Capitol Street, NWSuite 339Washington, DC 20001(202) 434-8090(202) 434-8092 (FAX)

    AIDS Treatment Data Network611 Broadway, Suite 613New York, NY 10012-2809(800) 734-7104(212) 260-8869 FAX

Executive Summary

State AIDS drug assistance programs (ADAPs) provide access for people living with HIV/AIDS to medications that treat HIV disease and prevent the onset of opportunistic infections. State ADAPs serve as a critical lifeline for many low-income individuals living with HIV/AIDS in the United States who do not have public health insurance or adequate private health insurance. These state-administered drug reimbursement programs form one link in the continuum of publicly-funded HIV care and services available to low-income individuals supported by the Ryan White CARE Act, Medicaid, Medicare, and local indigent health care programs. The critical role that ADAPs play in improving access to HIV/AIDS treatments have made these programs the subject of increasing public scrutiny and debate.

ADAPs were developed to serve those who are uninsured and those who are underinsured and lack coverage for medications. Potential clients include those individuals who may not be disabled and therefore cannot qualify for government-sponsored health insurance programs like Medicaid. Within general federal guidelines established through the CARE (Comprehensive AIDS Resources Emergency) Act, states set unique program financial and medical eligibility criteria for their ADAPs, determine the type and number of drugs covered by the program (the ADAP formulary), and establish how covered drugs will be purchased and distributed to clients. This has led to wide variability among ADAPs from state to state vis-a-vis their structures, eligibility criteria, accessibility and the type and scope of prescription drug coverage available to clients.

In March of 1997, the National Alliance of State and Territorial AIDS Directors (NASTAD) in collaboration with the AIDS Treatment Data Network (ATDN) conducted a comprehensive survey for the Kaiser Family Foundation of all 52 AIDS programs in the United States that receive funds through Title II of the Ryan White CARE Act. The following is a summary of the major findings of this national study:

What’s Recently Been Happening With ADAPs?

  • There has been a great leap forward in HIV/AIDS treatment over the past year driven largely by the advent of combination anti-HIV regimens containing protease inhibitors. But these new drug therapies come with a high price tag. Faced with rising expenditures, a burgeoning number of clients, and finite resources, many states were forced to take drastic measures to avoid bankrupting their ADAPs. Thirty-five states reported taking at least one emergency measure in the last year in response to the crisis in ADAP funding and increased demand for combination therapies. Among these measures were:
    • capping program enrollment
    • restricting access to certain formulary medications
    • reducing drug coverage, and
    • delaying or indefinitely suspending coverage of the new drugs.

  • Despite the emergency measures undertaken to prevent funding shortages, eleven states responded that they predict a shortfall in FY 1997: Alabama, Arizona, Arkansas, Colorado, Montana, New Mexico, Puerto Rico, Texas, Vermont, Washington State and West Virginia. Three other states have been forced to severely limit services in 1997 in response to increased demand and costs: Florida, Mississippi and South Dakota.
  • The total national ADAP budget for FY 1997 is $385 million. The majority of funds are from federal sources, including $167 million which are specifically designated for ADAP. That amount increased by 221% over the FY 1996 budget. Other federal Ryan White CARE Act dollars also contribute to the program.
  • Although 30 states have supplemented federal support for ADAPs with state spending, 22 states have not contributed to the program in FY 1997. Almost two-thirds of the total state contributions to ADAP are provided by California, Louisiana, New York, and Illinois.
  • Nationally, from July to December 1996, the number of ADAP clients served increased by 23% — an average increase of approximately 1,000 utilizing clients per month. Forty-two state ADAPs reported increases in the number of clients served during the last six months of 1996. Six of those states reported an increase in utilizing clients of 50% or more: Arkansas, Connecticut, Kentucky, Maryland, Oklahoma and Utah.
  • Monthly program expenditures increased 37%, from $14.9 million in July 1996 to $20.4 million in December 1996. Forty-four of the state ADAPs reported increases in their monthly expenditures during the same time period; fourteen of those states reported expenditure increases of 50% or greater. The average per client expenditure among ADAPs nationally over the last six months of 1996 was approximately $506 per month or $6072 annualized.
  • ADAP budgets grew nationally by 85% from 1996 to 1997, and increased over 314% since 1995. Despite the growth in ADAP budgets, many states have been unable to meet the demand from higher numbers of clients for a greater number of drugs, especially the newer antiretroviral agents.
  • In the month of December 1996, 38,500 clients were served by ADAP programs nationally, according to the most current available data. During calendar year 1996, the national estimate of the cumulative number of clients served by ADAP was 80,000. (Annual estimates are limited due to monthly reporting and variable lengths of client tenure in the program.)

How Accessible and Comprehensive Are ADAP Services?

  • There is wide variation among state ADAPs in their drug coverage. Access to both antiretrovirals and drugs for AIDS-related opportunistic infections (OIs) remains uneven among state ADAPs.
    • All state ADAPs except Louisiana provide coverage for basic antiretroviral treatments. (In Louisiana, a separate state program provides these drugs.)
    • In 1996, thirteen states restricted access to protease inhibitors.
    • In 1997, four state ADAPs do not cover protease inhibitors on their formularies and two state ADAPs cover only one protease inhibitor.
    • Only five state ADAPs cover the thirteen basic drugs recommended by the Infectious Disease Society of America (IDSA) and Public Health Service (PHS) in 1995 for the prevention of opportunistic infections (OIs).
    • Five state ADAPs do not cover any of the strongly recommended prophylactic drugs in the updated 1997 IDSA/PHS opportunistic infection prevention guidelines. Only two state ADAPs have the full complement of fourteen strongly recommended drugs on their current formularies.

  • There is also wide variation among state ADAPs in their eligibility criteria:
    • Financial eligibility cutoffs range from 100% to 400% above the federal poverty level, though the majority of ADAP clients are below 200% of poverty.
    • Most states use HIV infection as the basis for medical eligibility, though twelve states also require CD4 count and/or viral load information.

Future Opportunities and Challenges

  • It is very difficult to estimate the precise number of persons with HIV who may be eligible for state ADAP programs. One estimate would be a range between 140,000 and 280,000 persons with HIV nationally. This range is based on the Centers for Disease Control and Prevention’s estimated number of individuals with HIV disease in the U.S. (650,000 to 900,000 people), and the 1992 Agency for Health Care Policy and Research study estimate of persons in care with symptomatic HIV who are uninsured (21.4%). This estimate represents between a two- to four-fold increase in potential ADAP clients. It should be noted that this estimate does include persons who may not know their HIV status and/or may not be in a system of care.
  • Recently released federal guidelines for HIV antiretroviral therapy recommend that patients start on a combination regimen earlier in the course of HIV disease. Although the implications of implementing these new guidelines have not been established, they will likely increase pressure on state ADAPs to expand drug coverage and keep pace with expected client growth. Unfortunately, many state ADAPs are unprepared to offer this standard of care to eligible patients who may be candidates for triple combination therapy.
  • There is room for improvement for many ADAPs to squeeze additional cost containment out of existing mechanisms like federal drug discount pricing and rebates by improving drug distribution systems. The challenge will be in the effective implementation of initiatives to enhance the purchasing power of ADAPs, including pharmaceutical rebates and a prime vendor system.
  • Enhancing the ADAP interface with state Medicaid programs also presents opportunities and challenges. There will likely be increased pressure to assure that ADAP represents the payer of last resort and that Medicaid programs are not inappropriately limiting prescription drug coverage. Limitations on Medicaid drug coverage applies increased pressure on financially strained ADAPs to pick up the burden of paying for drugs for underinsured Medicaid-eligible populations.
  • Many states are exploring innovative strategies for broadening access to HIV/AIDS therapies such as health insurance continuity programs and purchasing insurance through state risk pools. For states such as Minnesota and Oregon, insurance purchasing and continuity programs represent the bulk of their efforts to provide access to medications for low-income people living with HIV/AIDS. These and other initiatives may narrow the gap that state ADAPs fill to provide uninterrupted medication coverage for eligible individuals with HIV/AIDS.
  • Significant additional federal and state resources will be needed to enable ADAPs to maintain pace with demand to deliver the standard of care for HIV therapy. Diversity of federal, state and other resources is a likely predictor of fiscal stability for ADAPs in the future.

Background

Why Does ADAP Exist?

ADAP exists because there is a gap in access to coverage for medications for low-income people living with HIV/AIDS in the United States. ADAPs are intended to serve those who are uninsured, and those who are underinsured (lacking coverage for medications). These groups include those individuals who may not be disabled and therefore cannot qualify for government-sponsored health insurance programs like Medicaid. Since 1991, the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act has provided federal funding to states, localities, and community health centers to provide services for individuals with HIV/AIDS. Specifically, the funds are targeted to those who lack access to or insurance for primary medical care, medications, early diagnosis and treatment, and supportive services. The CARE Act allocates federal Title II funding directly to states and requires them to use a portion of these funds to provide HIV therapeutics, including prophylaxis and treatment of opportunistic infections, for low-income individuals.

The need for ADAP was first identified in 1987 when Congress provided an emergency appropriation of $30 million to states to establish a reimbursement mechanism for low-income individuals with HIV/AIDS to access AZT (Retrovir) — the first anti-HIV drug approved by the Food and Drug Administration (FDA). The rationale for public funding of AIDS drug assistance for low-income individuals was rather straight-forward. AZT was not cheap and individuals living with HIV/AIDS needed access to therapies to prolong and improve the quality of their lives regardless of their ability to pay. The need continued to be apparent and has more recently been placed into sharp focus with the advent of combination antiretroviral therapies, which include protease inhibitors. But these promising treatments are out of reach for many low-income individuals who lack public or private health insurance. That is precisely the reason why ADAPs exist and why they are currently struggling to keep pace with treatment advances, increased costs and client demand.

What is ADAP?

Currently, ADAPs are authorized under Title II of the Ryan White CARE Act, funded at the federal level by the Health Resources and Services Administration (HRSA) and managed by states. It is important to recognize that ADAPs are one piece of a larger health care puzzle for people living with HIV/AIDS. In fact, many state ADAPs are structured to wrap around public health care programs — Medicaid, Medicare and local indigent care programs — to ensure some continuity of access to outpatient HIV medications. Most state ADAPs are administered by the state public health departments, however, a few programs are administered by the state Medicaid agency, regional CARE-funded consortia, or by a contracted administrative agency.

Within general guidelines established by the federal government through the CARE Act, states set unique program financial and medical eligibility criteria for their ADAPs, determine the type and number of drugs covered by the program (the ADAP formulary), and establish how covered drugs will be purchased and distributed to clients. This has led to wide variability among ADAPs vis-a-vis their structures, eligibility, accessibility and the type and scope of prescription drug coverage available to eligible clients. There are several variables in each state which have led to this reality: 1) the size and demographics of the HIV/AIDS epidemic; 2) the traditional structure of public health and indigent health care systems; 3) the availability of state resources; 4) variations in Medicaid programs — including eligibility criteria, the type and extent of pharmacy benefits, and the existence of a managed care waiver which may limit drug coverage; and 5) state insurance regulations and economies which may affect private health insurance availability.

While there were relatively few treatments available to treat HIV/AIDS until recently, state ADAPs were relatively benign — albeit important — programs within the context of health care for people living with HIV/AIDS. However, in mid-1995, ADAPs began to experience explosive growth in the number of enrolled and utilizing clients, and in monthly expenditures. This growth was due mainly to the development of new treatments, including antiretrovirals and opportunistic infection prophylaxis/treatment.

What’s Recently Been Happening With ADAPs?

The great leap forward in HIV/AIDS treatment over the past year has been driven largely by combination anti-HIV regimens containing protease inhibitors. These therapies are known as antiretrovirals and attack HIV at different points during the virus’ replication process. The first rapid period of growth in ADAPs began with the approval of 3TC (Epivir) — a reverse transcriptase inhibitor, which was marketed shortly before the first protease inhibitor, saquinavir (Invirase), was approved in late 1995. In early 1996, two additional protease inhibitors, ritonavir (Norvir) and indinavir (Crixivan), received FDA approval. The licensure of these new drugs and their reported efficacy in slowing the progression of HIV disease sparked a resurgence of interest in antiretroviral therapy.

Faced with rising expenditures, a burgeoning number of clients, and finite resources, many ADAPs were forced to take measures to avoid bankrupting their programs. Among these measures were: capping program enrollment, restricting access to certain formulary medications, reducing drug coverage, and delaying or indefinitely suspending coverage of the new drugs. Increasingly, ADAPs were only able to fill a smaller portion of the gap between private insurance and Medicaid. Especially vulnerable were lower- and moderate-incidence states (states with relatively few reported AIDS cases) that receive less federal Ryan White CARE funding and often no state support. Other “safety net” programs — including drug manufacturer-sponsored patient assistance programs — were also inadequate to the task of ensuring continuity in prescription drug coverage for lower income individuals living with HIV/AIDS.

The appropriation of $52 million in federal emergency ADAP funding in fiscal year (FY) 1996 provided some relief to the programs. Many programs, however, were forced to continue waiting lists for enrollment, reduce formularies and restrict drug coverage. Throughout 1996, three major factors would continue to influence the ability of ADAPs to provide drugs to intended client populations: the emergence of combination antiretroviral therapy as a standard of care; increasing ADAP utilization; and the financial resources of the programs.

The Emerging Standard of Care

From November 1995 through April 1996 four new antiretroviral agents were approved by the FDA for the treatment of HIV; three of these new drugs belonged to a potent new class of antiretrovirals known as protease inhibitors. In the space of six months, the arsenal of antiretroviral drugs doubled. These new agents were also found to be more effective when used in combination, specifically the simultaneous use of three antiretrovirals.

The promise of these new drugs, however, has come with a steep price. The estimated cost of triple combination therapy, including a protease inhibitor, ranges from $10,000 to $15,000 per year. In June 1997, the U.S. Department of Health and Human Services (DHHS) released draft guidelines for the use of antiretroviral agents in HIV-infected adults and adolescents developed by the Panel on Clinical Practices for Treatment of HIV Infection convened by DHHS and the Henry J. Kaiser Family Foundation. These recommendations represent the current state of knowledge regarding the best strategies for implementing antiretroviral therapy for individuals with HIV/AIDS and may drive increased attention to and demand for HIV/AIDS therapies.

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State AIDS Drug Assistance Programs: A National Status Report on Access:Press Release Report Part One Part Two State Data