HEALTHWATCH

HIV/AIDS

The ADAP Funding Crisis

Since 1996, the Aids Drug Assistance Program (ADAP) has provided low-income individuals living with HIV/AIDS the prescriptions they need, serving as the final safety net for Americans who have no other means of obtaining these life-saving medications. Unfortunately, after years of funding shortfalls, the program is facing a crisis. An increase of $303 million in federal funding is needed in FY2006 for ADAPs to maintain fiscal solvency and to meet the ever-growing demands of new clients seeking to enroll. Ensuring the continued success of ADAP is crucial: this lack of funding threatens public health by leaving thousands of HIV positive individuals without the drugs they need for survival, and undermines incentives to learn one’s status and thus contain the spread of the disease.

What Are ADAPs?

Part of Title II of the Ryan White Comprehensive AIDS Resource Emergency (CARE) Act, AIDS Drug Assistance Programs (ADAPs) are federally funded state-run programs that provide HIV medication and treatment to low income people. All fifty states, the District of Columbia, and several territories offer ADAPs, and programs vary greatly. Each state determines its own eligibility requirements; some require that individuals have certain CD4 counts (the CD4 count is often used as a measure of the health of a person's immune system), while others determine eligibility based on income.

Without ADAP coverage, many low income individuals simply cannot afford treatment. They cannot rely on Medicaid because current guidelines only allow treatment for those with full-blown AIDS, and treatment costs can run tens of thousands of dollars a year. Without access to ADAP services, vulnerable people with HIV are forced to wait until they are sick and disabled in order to qualify for Medicaid and receive access to the comprehensive HIV/AIDS treatment that could have prevented their progression to clinical AIDS. Such a policy is both inhumane and financially unwise. It is estimated that in FY2006 the annual per-patient costs for adequate HIV disease treatment under ADAP (including combination antiretroviral therapy and treatment for HIV related co-infections, opportunistic infections, etc.) will average less than $12,500. By contrast, Medicaid costs for treating for a person with late-stage AIDS begin at between 3 to 5 times that amount.

ADAPs Need More Funding

Congress needs to fund ADAPs more adequately. Many state ADAP programs face serious shortfalls because of increased demand and budget constraints. In 2004 ADAPs served over 136,000 low income HIV positive individuals each year, and 25,000-45,000 new patients are expected to seek treatment between 2005 and 2007. The increased demand comes from a combination of newly discovered infections, successful treatments extending patients’ lives, and changes in state budgets. States facing budget deficits make cuts to their Medicaid programs, and thus the ADAPs, as safety net programs, pick up individuals that are impacted by Medicaid restrictions, thus putting greater demands on the ADAP programs. Next year, some experts say another $100 million is required to keep ADAP functioning at minimum levels.

It's hard to get consensus on the numbers, but everyone agrees there is a serious problem with shortfalls. Alone, these numbers may mean very little, but the shortfalls are affecting real people in a number of ways.

North Carolina's ADAP is illustrative of the problems that the budget shortfalls are causing. It, along with at least eleven other states, had to cap enrollment and put hundreds of low income HIV positive people on a waiting list for medication and treatment. The Wall Street Journal recently reported on the rollercoaster of emotions that North Carolina's cap has meant for some people. Clarence Coe, a Fayetteville, N.C. construction worker, started on HIV treatment while in prison only to see his treatment come to an abrupt end when he was released. North Carolina's ADAP had just stopped accepting applicants so Coe had to apply to drug company charity programs and wait several months before he received the correct combination of drugs needed to resume treatment. Instead of being able to focus on staying healthy, Coe worried about how he would get the medication to keep him healthy.

Like other states, North Carolina had to cap its ADAP enrollment because under-funding left it unable to provide effective treatment to every deserving applicant. Instead of providing marginally effective treatment to all applicants, North Carolina made the difficult choice of providing excellent treatment to some applicants, while leaving others on a waiting list. This impossible choice has left some patients receiving the latest HIV fighting drugs, including Fuzeon, while others like Coe receive no state help.

In an attempt to remedy the situation, on June 23, 2004, President Bush announced immediate availability of $20 million in one-time funding outside of ADAP, to provide medications to people on ADAP waiting lists in 10 states. Funding for ADAP in FY2005 did not address continuation of this separate program and it is unclear how states will transition clients into their ADAPs when the program expires. If funding is not sufficiently increased to at least cover these new patients, the results could be tragic. As of now, President Bush is recommending an increase of only $10 million for FY2006.

Inadequate ADAP funding has forced people like Clarence Coe to take drugs and abruptly stop them, increasing the likelihood that their HIV will become drug resistant. HIV drug resistance is a menacing problem that requires the continual development of new drugs. Sometimes new drug advances do not keep pace with drug resistant strains of HIV, leaving some cases of HIV untreatable. Better ADAP funding should cut down on this problem.

In some states, ADAP funding shortfalls have forced both enrollment caps and reduced treatment offerings. For example, Colorado's ADAP has, in the past, capped with a waiting list, and those HIV positive individuals lucky enough to be part of the program only have access to a few covered medications. While the Colorado ADAP does cover protease inhibitors (a common HIV treatment regimen), it does not cover Fuzeon (the latest HIV-fighting drug, which can combat even drug resistant strains of HIV). It also does not cover any drugs to combat opportunistic infections (infections common only in individuals with HIV or some other problem in their immune system).

Inadequate ADAP funding and its effects also endanger other important public health objectives. Every year, states and the federal government spend millions of dollars urging people to get tested and find out their HIV status. Public health campaigns assure HIV positive people that medicines exist to help them stay healthy. However, if ADAPs cannot help low income individuals get necessary HIV drugs, they have no incentive to get tested. Some people will not care to find out their HIV status because they cannot do anything about it even if they are positive. Unaware of their HIV status, they are more likely to infect others.

Other ADAP Funding Problems

ADAP faces other funding problems as well. First, the federal government distributes ADAP funds to states based on their estimated number of people living with AIDS. This figure fails to account for how many of those people are actually low income and require ADAP services. Consequently, states with high populations of people living with AIDS, but low poverty levels receive more funds than they need, while states with lower populations of people living with AIDS but high poverty levels receive far too little. Recent studies indicate that HIV/AIDS infection rates are on the rise most in rural and suburban areas, and that the most impacted populations are now ethnic minorities. To account for these demographic changes, ADAP funding should adapt, moving beyond urban population centers to more appropriately disburse funds to where they are most needed. The ADAP funding formula also fails to take into account the number of low income HIV positive individuals who have not yet developed AIDS. This number is significant because a sizeable number of the clients ADAPs serve have not yet developed AIDS. Problems with the ADAP funding formula contribute to the need for caps and cutbacks that some ADAPs implement.

We Must Solve the ADAP Funding Crisis Now

Without question, the shortfall in ADAP funding is having a detrimental effect on a large number of low income HIV positive individuals. While a few are receiving excellent treatment, some are eligible only for outmoded drugs, and others are left to wait on lists to receive any treatment at all. Right now, some HIV positive individuals must start, abruptly stop, and then restart a treatment regimen, increasing the likelihood of drug resistance. The current situation is nerve-wracking for HIV positive individuals, bad for their health, and dangerous to public health.

When Congress reviews the CARE Act later this year, it should seriously consider retooling the act to meet current needs. It should eliminate less vital services to free up funds for drugs and treatment, and look hard at ways to redistribute funding to non-traditional areas.

Ultimately, it is probably preferable that Medicaid handle the treatment needs of low income people with HIV. After all, the CARE Act was never meant to serve as a primary provider of HIV treatment. The Early Treatment for HIV Act (ETHA), currently pending in Congress, would allow Medicaid to assume the role of primary provider.

In the mean time, the $10 million increase in ADAP funding proposed by the Bush Administration for FY 2006 is insufficient. There is some debate about how much money will solve this problem however experts estimate that $303 million for FY 2006 would alleviate the problem. The price tag is small considering the tens of thousands of people who depend on the life-saving benefits provided by ADAPs.

A longer term solution for the ADAP problem needs to be found as the Ryan White Care Act is reauthorized by Congress this year. The problem is that an across the board increase in ADAP funds will provide too much money for some states. However, without enough of an increase, more states will develop waiting lists. During reauthorization, the ADAP program must be reformed in such a way that provides more help for distressed states without providing too much money for those states that already receive sufficient funding for ADAP. Thousands of people depend on this life-saving program. The challenge is to reform it in such a way that allows more balanced funding for individual states based on their unique challenges.

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