The Future of ADAP

Two Perspectives on the Future Direction of ADAP

Anticipating the future direction of this nearly one-billion dollar program is complicated, partly because what happens to ADAP is dependent on many different factors. For example, ADAP is a part of Title II of the Ryan White CARE Act which is due to be reauthorized in September, 2005. This November's election of the President and Congress is likely to determine the outcome of reauthorization. Additionally, ADAP is defined as the payer of last resort. If other programs, such as Medicaid and Medicare, are successful in providing HIV positive people with treatment, then the need for ADAP services may be reduced.

In order to gain a fuller understanding of these issues, AIDS Action Political Director William McColl conducted separate interviews: one with William E. Arnold, director of the ADAP Working Group, and another with Murray Penner, director of the Care and Treatment Program of the National Alliance of State and Territorial AIDS Directors (NASTAD).

Mr. Arnold is a founding director and chief executive officer of The Title II Community AIDS National Network. He also helped to found the ADAP Working Group, a Washington, D.C.-based coalition of HIV organizations that advocates at the federal level for ADAP resources, for which he now serves as director.

Mr. Penner is the director of the care and treatment program at NASTAD. His primary responsibilities include oversight of the care and treatment program at NASTAD, including a cooperative agreement with HRSA for training and technical assistance, activities related to reauthorization of the Ryan White CARE Act, as well as NASTAD's National ADAP Monitoring and Technical Assistance program.

What follows are some of the questions that Mr. McColl asked during his conversations with Mr. Arnold and Mr. Penner, along with their answers.

What is the current status of ADAP and the states and territories?

Bill Arnold: Right now about half of the programs are in danger of running out of cash before the end of the ADAP fiscal year which runs from April 1 to March 31. There are 11 states with waiting lists. This has been an ongoing problem for three years to a greater or lesser extent. Every year there are an estimated 40,000 new infections, and fortunately people are not dying at the rates in the beginning of the epidemic. Every single month, between 400 and 600 people come knocking on ADAP's door, and in the last 2 years, more and more people are turned away. Wait lists, extended applications, diminishing eligibility requirements and cutting the formulary are all cost-cutting measures. They are understandable from a cost cutting point of view. The states are not allowed to spend money that they don't have. However, it is a dismal outlook for low income HIV positive Americans. Unless there are drastic changes in our funding, the current situation is likely to get steadily worse.

What do you see going on in the ADAP system?

Murray Penner: What's going on with the current ADAP system is that we have had little growth in funding, increasing numbers of people living with HIV and people are living longer. In short, we have a growing pool with flat [same level] funding. ADAP is at the point of busting at the seams, if it isn't broken already. Programs are strained to the point of not making it anymore. We have caps that lead to waiting lists, reduced formularies. We are anticipating seeing increased cost sharing, co-payments, and lowered financial eligibility levels. Actually, we're not just talking ADAP. We're seeing it in other parts of the CARE Act as well.

Are there states that are doing well?

Bill Arnold: Some states feel fat, dumb, and happy at the moment; but, when you look closely at their ADAP benefits, they are generally only allowing benefits to go to people who are at or below 125% of the poverty line. Where are the people who earn between 125 and 300% of the poverty line going? Then the formularies are inadequate because they require high co-pays and they cap benefits for each patient. Even good state ADAPs are worried because of the states' fiscal crises. Medicaid budget problems in the states are making things worse. As long as ADAP funds are discretionary, even programs that are good right now are going to have problems (because discretionary programs require Congress to provide them with additional funding each year, at their discretion).

Murray Penner: There are certainly states not experiencing wait list issues. They're not necessarily doing one particular thing right; for that matter, not all of them are even doing one particular thing in common. In general, states that are doing well contribute a good deal of their own funding, have strong public health or indigent care programs beyond HIV or they have strong Medicaid hospital systems that take care of indigent individuals so ADAP doesn't have to pick up all the slack.

Are there any lessons to be learned from these states?

Murray Penner: It's clear that funding is not necessarily the sole area of concern for states that are having issues. However, I'm not sure that you can just look to other states for solutions. It's more complicated than that. Legislators aren't necessarily going to simply be able to restructure their systems that easily.

What about states with the biggest difficulties -- do they have issues in common?

Bill Arnold: These states often have health care delivery systems and/or Medicaid that are difficult to access or they may be under funded. Some of these states are servicing rural areas with family doctors, not HIV specialists. Some of the states have had to limit care in some manner. Even here in the Washington D.C. area the Whitman-Walker Clinic (a large AIDS Service Organization) has waiting lists of three months just to see a doctor in Northern Virginia. Another problem that occurs is with dually and triply diagnosed people (individuals who, along with being HIV positive, have been diagnosed as having a substance-related disorder and/or a mental illness). They have problems beyond HIV such as active substance abuse, mental health, and more. Then the problem isn't just getting to medications, it's what else do we need to get to patients along with medications.

There has been a lot of discussion about waiting lists. Are they really the problem or are they a symptom of a larger issue?

Bill Arnold: The real problem is inadequate resources in the Ryan White CARE Act system and often in Medicaid to deal with the impact of HIV infections at the community level of HIV disease.

What are some possible solutions?

Bill Arnold: The President's $20 million is out there. The House has a $35 million increase on the table. Both of which should begin to address the shortfall of $217 million that we are experiencing. Receiving a large infusion of cash back in March or February would have cut waiting lists substantially and helped make up for the structural deficits that occur from being flat funded for the last three years. If we want to actually keep up one way or another, there needs to be a $100 million increase every year. And when you then take into account state cutbacks in some places, it requires even more.

The Institute of Medicine (IOM) recently came out with a report that supported an entitlement structure for HIV care. Do you agree with that?

Bill Arnold: The ADAP Working group is 100% behind ETHA (Early Treatment for HIV Act) legislation which, if passed, would provide states the option of expanding Medicaid coverage to individuals living with HIV. Medicaid is an entitlement, or mandatory, program). We will probably come out with a principle in support of something like the IOM recommendations. In the medium- to long-term, we're looking at a politically difficult sell given the constrained budgets for discretionary programs. Logically people get it. But that doesn't mean that politically, when policymakers sit down, they want to spend more money on ADAP or the Ryan White CARE Act. If you press them, they don't want to spend it on diabetes either.

Murray Penner: Certainly I think that increasing access to care, regardless of the exact manner as the IOM recommended, is a concept that we all embrace. An entitlement is an answer but it's probably not politically viable. Some of the ideas from the IOM might be developed into an option that could be accomplished through the Ryan White CARE Act. Still, in this environment policymakers are not looking at entitlements. We have a lot of tough funding decisions in order to pay for care and treatment. It may take a long time to work out some of these problems.

There has been some talk of a voucher program. What would that look like?

Murray Penner: I have not really been hearing that much about vouchers. A voucher system would essentially create a system in which HIV positive people have access to a basic amount of funding. The problem is that treating one person with HIV may be completely different from treating someone else with HIV. I'm not sure a voucher system would ensure the standard of care that we are trying to achieve for people.

Some people have discussed concerns about ensuring that primary care receives funding in proportion to medications. Can you discuss that a little further?

Bill Arnold: It's hard to say if this will be an issue for reauthorization. For HIV disease, the regimens are the regimens are the regimens. People on HAART (highly active antiretroviral therapy) average about $1,000 a month. At some point, there will have to be more primary care. Medications will cost what they're going to cost, and doctors are going to cost what they're going to cost, and we should be prepared to advocate for all of it.

We can talk about ADAP politically because Congress has a clear understanding that these medications are needed and what they are for. When a program is on the verge of collapsing there is a reaction: "Oh My God, we can't get them their medications." We have not done a good job of pointing out that, in some jurisdictions, we've got a waiting list to see the doctor to get the prescription to get the medications. We don't hear about the places where people are waiting long periods of time to get in to see the doctor; partly because it's hard to get these data.

What do you think of the President's $20 million (direct buy) plan for ADAP medications? What else needs to be done?

Bill Arnold: The wonderful thing about the plan is that the President spoke openly about the domestic ADAP crisis and issued instructions to find $20 million, which is roughly what it would take to cover the medications of the 1,700 or so people who were on waiting lists at the time. Now how to do it? Basically, it looks like the White House said to the Department of Health and Human Services, "You go find the money (in your budget)." So HHS found it in their budget.

However, distribution of the medications to people living with HIV in the ten eligible states is a logistical difficulty. This of course hasn't happened yet. We're approaching the end of August, and no pill has gone to those people yet. That doesn't mean that the $20 million isn't badly needed and that doesn't mean that the HIV community is ungrateful. We appreciate the President's leadership. The truth is that we need $200 million and $20 million is a 10% part of the solution, and we appreciate it. Thank you Mr. President. Congress, we're still in trouble; just like we told you last year and the year before and the year before that.

What lies ahead for ADAP?

Murray Penner: In the short term, let's say next year, we'll see incredible strains on the program. There does not seem to be legislative movement for a short-term fix. We will see waiting lists. The President's $20 million program is helpful, but it's really just a band aid over the longer-term problem. In the long term, we are trying to move toward greater access to care so that access to medications doesn't depend on where you live. We need to make sure that every program has a core formulary and core services. We may move toward the concepts in the IOM report. Congress doesn't feel good about throwing money into a system in which they can't quite see the results -- results that may impact the Ryan White CARE Act reauthorization.

What haven't we discussed that our readers should know?

Murray Penner: One of the biggest things to watch is what happens with the President's announcement in June of $20 million for the purchase of medications for the 1,700 people who were at that time on ADAP waiting lists in ten states. We are near the end of the fiscal year. Those funds must be spent by September 30th. The federal government really needs to consult with the HIV community and the states about how to spend these funds. If that happens the result may be that we have a clear program about medical needs.

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