AIDS Action Weekly Update Special Edition

ADAP Today

Current Reality and Needs

The AIDS Drug Assistance Program (ADAP) in its current form can be best described as a patchwork of state-based programs that are predominantly funded by federal dollars. The programs are meant to deliver life-saving medical treatments to uninsured and underinsured people living with HIV in all 50 states and the U.S. territories; however, there is great variation among the programs, and these differences compromise ADAP's ability to accomplish its key mission of providing crucial medications to HIV positive individuals.

This article briefly explores the challenges faced by state ADAPs and outlines the needs that must be addressed in order to achieve a comprehensive and consistent medication delivery system.

Managing Fiscal Challenges

The current discourse about ADAP is framed within a discussion of "waiting lists" and other cost control measures that state governments have implemented in an effort to prevent their ADAPs from closing down altogether. The following statistics, which were presented in the August 2004 ADAP Watch by the National Alliance of State and Territorial AIDS Directors (NASTAD), note the measures states have taken:

• Nine states have instituted waiting lists of individuals wanting to enroll in and benefit from the state ADAP programs, ranging from a high of 891 to a low of eight people, and totaling 1,518 individuals. These states are Alabama (353 people), Alaska (8), Idaho (24), Iowa (31), Kentucky (138), Montana (10), North Carolina (891), South Dakota (28), and West Virginia (35).

• Ten states have implemented other cost-containment strategies, such as capping enrollment, reducing the number of drugs provided, and increasing cost-sharing for clients. These states are: Alabama, Arkansas, Indiana, Minnesota, Missouri, Oklahoma, South Dakota, Texas, Utah, and Washington.

• Six states are anticipating initiating new and/or additional cost-containment measures during the remainder of this fiscal year (FY 2004). These states are: Louisiana, Massachusetts, Nebraska, New Hampshire, New Jersey, and Oregon.

When an ADAP Is Full: Evaluating the Options

Some, though not all, states begin waiting lists when their ADAP programs are filled to capacity (i.e., the programs do not have sufficient funds for additional clients). These waiting lists can help to quantify the existing level of unmet need. Not having a waiting list, however, does not mean that everyone who is eligible for, and in need of, ADAP services has received them, because states are not required to keep track of clients waiting to enroll, and many do not.

On the other hand, being turned away from an ADAP does not necessarily mean that one must go without HIV treatment. Individuals can often get access to medications through patient assistance programs (PAPs) operated by individual drug manufacturers or state pharmacy assistance programs (SPAPs). HIV treatment advocate Lei Chou has said that these programs and others like them help clients a great deal: "Informal surveys of ADAP directors and case managers indicate that this temporary and patchwork approach has ... prevented waitlisted clients from going without treatment."

Though patient assistance programs (PAPs) may offer a chance for patients to access treatment, they do not supply a complete solution to the growing public health problem of providing HIV treatment. They are completely private programs operated at the will of the presiding company; therefore, the program rules cannot be regulated. There are often lengthy waiting periods before people can get into these programs. Further, clients need to apply, under separate application, to all of the companies that produce their medications, sometimes this process means filling out paperwork for each drug that they take. Also, frequent re-enrollment is not an uncommon requirement in these programs. Finally, this process often is only possible with the support of an individual's physician and caseworker. As Chou says, "At a minimum, access to treatment through [patient assistance programs] will take a motivated patient, a dedicated caseworker, a cooperative physician, and a mountain of paperwork." Such complicated and cumbersome processes can place added stress on people and may lead to missed doses of medication(s), which can damage one's health and lead to drug resistances, making new treatments less effective.

State pharmacy assistance programs (SPAPs) are state funded and administered programs that offer increased prescription drug access, either through discounts or subsidies, for senior citizens and people with disabilities who have low incomes. Eligibility criteria vary among the states. According to a report by the National Health Policy Forum, 29 states currently operate pharmacy assistance programs. All 29 of the programs serve low-income individuals aged 65 and over; half serve people with disabilities under the age of 65. The low-income requirement differs throughout the states and is based on a percentage of the federal poverty guidelines established by the U.S. Census Bureau (To access the 2004 poverty guidelines, link to http://aspe.hhs.gov/poverty/04fedreg.htm). Due to these strict guidelines, the help of state pharmacy assistance programs in defraying the costs of prescription drugs is not available to all ADAP beneficiaries.

Treatment Through ADAP: Geography Matters

Let us suppose that someone does get into their state ADAP. The treatment to which they have access within the program will depend largely on which state they live in as the drug formularies vary from state to state. Some states enjoy comprehensive formularies which include all of the HIV antiretroviral medications approved by the Food and Drug Administration, as well as the 14 drugs highly recommended by the Public Health Service/Infectious Disease Society of America (PHS/IDSA) Guidelines for the prevention and treatment of opportunistic infections. Other states however include significantly fewer drugs in their formulary. The authors of the National ADAP Monitoring Project Annual Report (2004) document this contrast as follows: "ADAP formularies ranged from 18 drugs covered in Colorado to 474 in New York. Four jurisdictions reported that they had open formularies, i.e., formularies including all medications related to the care and treatment of HIV/AIDS) (Massachusetts, New Hampshire, New Jersey, and Northern Mariana Islands)." Eligibility criteria for clients also vary greatly. As written in the ADAP Monitoring Report, "Financial eligibility for ADAPs ranged from a low of 125% FPL [federal poverty level] to 500% FPL or more in Delaware, Massachusetts, New Jersey, and New York." In other words, there is no consistency across the states. Drug formularies and access are completely tied to one's geographic location.

Greater Need, Escalating Drug Prices Strain the Program

The aforementioned problems take place within a context of increased utilization and the rising price of pharmaceuticals. Client enrollment in and dependence on ADAP programs has significantly increased since 1996, the year that marked the beginning of highly active antiretroviral therapy (HAART). In June 2003, 85,825 clients were being served by ADAPs, an increase of 10% over June 2002. Enrollment in ADAPs in June 2003 was 128,465 (Not all individuals enrolled in ADAP will use the program to access their medications in a given month, hence the difference between the figures for "clients served" and "clients enrolled.") At the same time, ADAP drug expenditures increased by 9% from June 2002 to June 2003, totaling $77,392,171. These monthly expenditures amount to $928.7 million on an annual basis.

Stemming the ADAP Crisis

Recent efforts to strengthen ADAP have included repeated requests for more federal money. The National Organizations Responding to AIDS (NORA) and the National AIDS Appropriations Group (NAAG) have both requested an increase of $217 million for fiscal year (FY) 2005. This increase, which is considered the highest amount attainable in the current fiscally constrained environment, would bring the total funding to $965.87 million, or roughly $1 billion.

In an ideal scenario, many of the concerns presented here will be addressed during the reauthorization process of the Ryan White CARE Act in 2005. AIDS Action is currently working in coalition with other national organizations to address the ADAP "crisis" through reauthorization proposals, as well as other advocacy strategies. AIDS Action recognizes that proposals for new policies and procedures to address ADAP's structural and funding problems must adequately address the following needs and concerns:

1. Consistency of formularies and eligibility requirements across the states;

2. Formularies based on federal government agency guidelines for the treatment of HIV and accompanying opportunistic infections and co-morbidities;

3. Rising pharmaceutical costs; and

4. Inadequate funding.

Members can look to AIDS Action for future updates on addressing the unmet needs in the AIDS Drug Assistance Program.

Sources

1. Chou, Lei. Waiting For Your Life: A Closer Look at a Growing Public Health Disaster. Journal of Timely and Appropriate Care of People with HIV Disease. Ed. Gordon Nary. (1) 1.

2. Davis, M. Danielle et al. (prepared by). National ADAP Monitoring Project: Annual Report. National Alliance of State and Territorial AIDS Directors, The Henry J. Kaiser Family Foundation, and AIDS Treatment Data Network, May 2004.

Back to the AIDS Action Weekly Update August 27, 2004 contents page.