PI Perspective #19

September 1996     View PDF

Access in Crisis

The backdrop to the excitement about recent advances is a crisis of access and affordability. Advances in HIV/AIDS treatments have collided with a health care delivery system which is inadequate, inequitable, and expensive. Additionally, the new drugs and their use in combinations have more than tripled the cost of treating HIV.

Most people living with HIV can’t afford the treatments making the headlines, and many are turning to the AIDS Drug Assistance Program (ADAP). ADAP is a federal program administered by states—often using both state and federal funds. It is designed for HIV-positive people with limited income who are under-insured and not eligible for Medicaid. Because it generally does not cover care delivery or diagnostic tests, ADAP is far from a comprehensive solution. Still, it remains an important component in treatment delivery and must be adequately funded and reformed to better serve people living with HIV/AIDS across the U.S.

Who ADAP serves and how well varies widely from state to state. While no ADAP covers the full spectrum of treatments for HIV management, some cover a fairly broad array of treatments for people in a reasonable income category. Other ADAPs cover as few as 4 treatments and only for people with the very lowest incomes, rendering the program virtually useless for many people.

Unfortunately, these inequities have only worsened since the approval of protease and other new antivirals:

• The New York ADAP, which previously supplied the most treatments of any state, was cut two-thirds in early 1996 to remain solvent.
• In response to inadequate funding and rising drug prices, Illinois recently decided to add 3TC (Epivir) and saquinavir (Invirase), but not indinavir (Crixivan) or ritonavir (Norvir), while dropping 82 of the 112 drugs on their list. This decision is illogical as saquinavir is the least effective and most costly protease inhibitor. Clearly, sound medical judgment did not guide the decision.
• Washington state added 3TC and protease inhibitors but was forced to close enrollment after a 75% increase in utilization. Although the program was reopened, it remains unclear how the state will cover the anticipated $5M budget shortfall.
• Washington DC was also forced to close program enrollment although HIV is spreading in DC more rapidly than in most U.S. cities.

While 3TC is covered by most ADAPs, few states can provide protease inhibitors. This trend of limitations is clearly a danger sign.

Building a Strong ADAP
Most ADAP funding issues must be dealt with at the federal and state level. Broad programmatic concerns need to be address in various arenas:

• Does the program provide needed drugs?
• Do eligibility requirements meet community need?
• Is ADAP efficiently managed?

Following are some of the program aspects to be considered to ensure a strong ADAP.

Funding (is there enough money?): ADAP funding is inadequate and many programs can’t supply drugs. In 1995, 33% of all funding for ADAPs came from state sources; 44% came from Federal Ryan White Title II grants; and 23% from Ryan White Title I funds. The federal government will need to provide funding for ADAP while preserving and enhancing Ryan White funding overall.

Federal funding for ADAP is about $145M (million), including the $52M “emergency supplemental funding” added in 1996. This is inadequate to support the program. The ADAP Working Group, a coalition of community and industry representatives, has concluded that $196M more in federal funding will be needed in 1997 to maintain an essential core of HIV/AIDS treatments. Currently, the House has requested only a $30M increase for all Title II programs, including ADAP, although they have agreed to reconsider this figure. President Clinton has requested an additional $65M in funding for ADAP. While this proposal indicates support for the program, it falls far short of the actual need. Individuals will have to communicate with their Representatives, Senators, and the administration about the importance of this program and the need to increase ADAP funding by $196M while maintaining and appropriately increasing overall Ryan White CARE Act, HIV/AIDS research, prevention, and housing money.

Elected officials need to understand the importance of state funding to ADAP. New York advocates ran a successful campaign convincing the state, which had never contributed to ADAP, to add $8M in 1997 from state general funds. Advocates around the country will have to convince their states to follow suit to meet ADAP funding needs.

Drug Pricing and Rebates (does your state program stretch dollars?):
Rebates from pharmaceutical companies allow ADAPs to provide more treatments. There are two ways for programs to achieve better pricing for drugs.

• A mandatory pricing structure provided in the Veteran’s Health Care Act which requires manufacturers to offer some public health institutions (including those ADAPs with a central purchasing system) prices below than wholesale. Only about 7 ADAPs currently participate in this system.
• Voluntary rebates are available from drug companies on a state by state basis, but only 7 or 8 states negotiate rebates on ADAP drugs. Lack of experience and knowledge about the process may keep states from working for better pricing.

Formulary Management (who decides what drugs ADAP covers and how is the decision made):
The example of the Illinois’ decision to remove 82 treatments while adding 2 raises serious questions about who decides which drugs are on ADAP. The decision process should take into account factors including the cost/benefit ratio of treatments on the formulary (list of drugs), and treatments commonly used by the people accessing the program. Decisions regarding formularies should not be made solely by state administrators, nor should they be made in state legislatures. In one survey, 42 states reported they had advisory panels or medical advisory boards to work with administrators on ADAP formularies. Yet, the question remains: who is on these panels and how well have they done their homework? The advisory boards must include HIV clinicians experienced in treating diverse groups, treatment advocates and people living with HIV/AIDS, as well as appropriate officials. Members should have access to cutting edge treatment information from sources other than drug company salespeople and good data on how their program is utilized.

There should be requirements for consistent member participation to ensure a strong working group. A breadth of expertise is important as decisions must often be made in a rapidly changing treatment environment. Therapies should be evaluated with consistent criteria which can be made public or reviewed upon request. Also, because treatment advances can occur swiftly, ADAPs need to create an effective process for quickly adding new treatments upon FDA approval. It is unreasonable to expect people dependent on ADAP to wait months or even years longer than others for improved treatments.

Eligibility criteria (who qualifies for ADAP):
Eligibility criteria for programs varies widely by state. Arkansas requires a maximum annual income (less medical expenses) of about $8,000, while Alaska has no income cap and bases eligibility on “financial need”. Most states use a percentage of the federal poverty level and many use a sliding co-payment system for higher incomes. Cost of living differences between states may cause variation in eligibility criteria, but states must recognize that the annual cost of treatment has risen as high as approximately $12,000 to $15,000 per patient for treating HIV alone (excluding treatment or prophylaxis of opportunistic infections, complementary therapy, or health maintenance strategies). This cost varies little between states and must be recognized when setting eligibility criteria.

Client Information and program access (Do people know about ADAP and can they use it?):
Many people do not know they are eligible, particularly in underserved communities. Community members and advocates must ensure that ADAP information, in the language of the user, is actively distributed to community clinics, hotlines, physician’s offices, care providers and case workers.

Lack of treatment access not only causes suffering and reduced life expectancy, but also adds costs in other parts of the health care system. The task of ensuring that ADAP remains a viable program is not minor, people working together can make a substantial difference. The difference can be seen in the $52M federal funding increase, the California and New York state funding increases, and other state improvements. If you are interested in working on ADAP in your state, your help is needed now. Call Project Inform for information on how to get involved. For more information on what your state ADAP offers and who qualifies, call the Access Project at 1-800-734-7104.

CCR5: Opening the Door on HIV

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