In An Era of Rapidly Changing Treatment Standards, Costs and Use of State AIDS Drug Assistance Programs (ADAPS) Continue to Increase

Number of Clients Served Grew by 22% But Some States Still Have Unmet Needs and Restrict Access

Embargoed for release until: 9:30 am, EST, Tuesday, March 9, 1999

WASHINGTON, D.C. - As expensive new drug therapies prove more promising in treating people living with HIV/AIDS, a survey of the nation's AIDS Drug Assistance Programs (ADAPs) found that, even as the number of clients served grew by 22%, some states still have unmet needs and restrict access. The study, the third in a series, was conducted for the Kaiser Family Foundation by the National Alliance of State and Territorial AIDS Directors (NASTAD) and the AIDS Treatment Data Network (ATDN). The survey found that between July 1997 and June 1998, national ADAP program expenditures grew by 37%, an increase driven by per client expenditures and a rise in the number of clients served.

The growth in program expenditures is also, in large part, due to an increase in the cost and use of combination antiretroviral drug therapies, which are now the current standard of care recommended by the Department of Health and Human Services.

"The good news is that the new antiretrovirals extend the life and health of people with HIV. But these drugs are doubly expensive. Not only do they cost more than the previous drugs, treatment guidelines indicate that more people should take them earlier in their illness, " says Tim Westmoreland, Senior Advisor on HIV/AIDS for the Henry J. Kaiser Family Foundation.

Program Expenditures: How is the money being used?

Since the introduction of combination antiretroviral therapy in late 1996, many state ADAPs have been challenged to meet the demands of a rapidly growing client population and increased program expenditures. From July 1997 to June 1998, per client ADAP expenditures increased 12% (from $665 per client/per month to $747 per client/per month) for states reporting client and expenditure data. During the same period, expenditures for antiretroviral drugs grew by 54%, and in June of 1998 represented 88% of overall ADAP expenditures. Notably, national ADAP expenditures for drugs that treat and prevent opportunistic infections and other formulary drugs decreased by 31%, and accounted for a decreasing proportion of overall ADAP expenditures.

In July of 1997, only two ADAPs reported covering all approved antiretroviral drugs. By October of 1998, 46 ADAPs provided coverage for all approved antiretroviral treatments and twenty-two states reported adding antiretroviral drugs to their ADAP formularies since July of 1997. In addition, from July 1997 to June 1998, there was a 28% increase in the number of prescriptions filled by ADAPs. The number of protease inhibitor prescriptions filled by ADAPs rose by 71% among the states reporting data.

Efforts to Stretch Program Resources

With more and more states covering the recommended treatment standard and with client utilization on the rise, state ADAPs are faced with the question of how to stretch their resources. One way states have done this is by taking a more active role in negotiating drug discounts. Most state ADAPs now participate in a federal drug discount program. In addition, several ADAPs recently delayed adding a newly approved antiretroviral drug to their formularies pending the outcome of negotiations with the drug manufacturer over the relatively high cost of the product.

While some states supplement federal Ryan White ADAP monies with state general revenue funds, twelve states do not provide any non-federal financing of their programs and therefore rely solely on federal funding to provide ADAP services. Forty states provided state general revenue support for their ADAPs in FY 1998, for a total of $119.4 million nationally. This represents a 22% increase over FY 1997 state general revenue contributions to ADAPs.

Unmet Needs

Despite these efforts, and an overall 38% increase in the total federal and state ADAP budget, several ADAPs face budget shortages due to increased client use, increase drug costs, inadequate resources, and lack of alternative funding and services:

• Eleven states reported capped program enrollments, i.e., limiting the number of clients that can be served at one time. All eleven maintain active waiting lists for clients to enter the program. The number of individuals on these waiting lists is reported to be at least over 2,500. Five states reported using monthly or yearly per capita expenditure caps.
  
  
• Six states reported capped or restricted access to protease inhibitors or other antiretrovirals and two states continue to not provide any protease inhibitors due to budget constraints.
  
  
• Fourteen states reported that, based on budget projections, they expected to exhaust their current ADAP operating budget prior to the end of Ryan White FY 1998 (March 31, 1999).

"While some ADAPs have stable, adequately funded programs to respond to client demand, there are persistent program restrictions and budget shortages among nearly half the states, which continue to limit drug coverage and program access for low income clients with HIV disease," according to Joseph Kelly, Deputy Director of the National Alliance of State and Territorial AIDS Directors and co-author of the report. The report indicates that several factors may account for these persisting variations among ADAPs including inequalities in ADAP funding across states and the impact of Medicaid coverage within a state on the ADAP.

Who are ADAP Clients?

The majority of clients served by ADAPs are low-income people who are uninsured or underinsured and cannot afford access to drug treatments for HIV/AIDS. Eighty percent of ADAP clients have incomes below 200% of the Federal Poverty Level (FPL). Forty-eight percent have incomes below 100% of the FPL. In ten states, two-thirds or more of the ADAP population earn less than 100% of the FPL. In states with relatively limited Medicaid programs, ADAPs may be shouldering an increased burden of low-income individuals living with HIV/AIDS who do not meet restrictive Medicaid eligibility criteria.

"These statistics show that ADAPs are playing a vitally important role in helping people who are economically disadvantaged and living with HIV to get access to drug therapies that could mean the difference between life and death, " says Marsha Lillie-Blanton, Vice President, the Kaiser Family Foundation.

The AIDS Drug Assistance Program, or ADAP, is a state-administered program that provides access to the drugs used to treat HIV/AIDS and prevent the onset of related opportunistic infections for low-income people living with HIV/AIDS who do not have adequate private or public health insurance. The program forms one link in the continuum of publicly-funded HIV/AIDS care and services that includes the Ryan White CARE Act, Medicaid, Medicare, and local indigent health care programs. The 52 ADAPs -- fifty states plus the District of Columbia and Puerto Rico -- receive federal funds through the Ryan White CARE Act. Some states contribute supplementary funding. In 1998 total federal and state ADAP spending was $40.8 million. States set the income and medical eligibility, determine which drugs will be covered and how they will be purchased and distributed.

The Kaiser Family Foundation, based in Menlo Park, California, is an independent national health care philanthropy that is not associated with Kaiser Permanente or Kaiser Industries.

The National Alliance of State and Territorial AIDS Directors (NASTAD) represents the nation's chief state health agency staff who have programmatic responsibility for administering AIDS health care, prevention, education and supportive service programs funded by state and federal governments. State AIDS Directors in all 50 U.S. states, the District of Columbia, Puerto Rico, the U.S. Virgin Islands, and the U.S. Pacific Islands are represented by NASTAD with an office in Washington, D.C. Programs administered by NASTAD members serve every population affected by and infected with HIV.

The AIDS Treatment Data Network (ATDN) is a national, not-for-profit, community-based organization. Treatment education and counseling services for men, women and children with AIDS and HIV are supported by extensive, comprehensive and up-to-date informational databases about AIDS treatments, research studies, services, and accessing care.

The full report is available online.

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