The AIDS Drug Assistance Program (ADAP) was started in 1987 to provide lifesaving HIV treatment to low-income, uninsured and underinsured people. ADAPs have been set up in all 50 states and various U.S. territories, and in June 2009, the programs provided medications to 125,479 individuals, according to the National Alliance of State and Territorial AIDS Directors (NASTAD).

As of June 24 of this year, approximately 1,840 people were on ADAP waiting lists.This means that nearly 2,000 people are at risk for not getting linked to the care they need. The number is expected to balloon in the near future, with an estimated 250 to 300 people expected to be added in each of the coming months in Florida alone. And ADAPs in states such as Georgia and South Carolina are facing total collapse.

The last time the country faced a similar crisis was in2004, when approximately 1,600 people were on lists. At the time, President Bush directed federal funds to bolster ADAP. Will President Obama and Congress step in this time around? And exactly how dire is the situation anyway?

To get a handle on this growing crisis, POZ spoke with William Arnold, the CEO of Community Access National Network in Washington, DC, and Carl Schmid, the deputy executive director of The AIDS Institute, also in DC.

Let’s start with the basic definitions about ADAPs and what they do.

William Arnold: There are 54 or 55 ADAPs, and every ADAP is somewhat different. Federal law [allows] states, territories and the District of Columbia to set up ADAP programs in any way they think would work best in their local circumstances, which obviously vary greatly. ADAP will furnish your drugs, buy you extended insurance if you’re eligible for that or wrap around a private policy if it doesn’t cover you enough. Each locality sets up eligibility levels and a formulary—in other words, the drugs the ADAP will furnish, and what you have to do to be eligible.

[Requirements might vary as well] from 500 percent to 125 percent of poverty level. [The federal poverty level is $10,830 a year for a single person.] ADAP is intended by law to be the payer of last resort. You shouldn’t be applying for ADAP if you are eligible for anything else, so you have to go though a screening process, and that also varies.

What does it mean to be on a waiting list?

Arnold: You’ve proved your eligibility and the ADAP doesn’t have money, so you go on a list until somebody dies, moves out of the state or otherwise frees up a slot. That doesn’t mean you can’t help yourself or that your doctor or AIDS service organization can’t help you [while you’re on a wait list].

So when we hear about ADAP waiting lists, it does not always necessarily mean these people aren’t getting their medication?

Arnold: No, it does not necessarily mean that. Because in many localities people will figure out something. Back in 1996 when Mississippi threw 640 people off its ADAP, local churches in Jackson, Mississippi, came up with $250,000 in matter of two weeks and found someone to administer an emergency program. But [imagine] in the meantime, [what it would be like] if you were a patient and you got a letter in the mail saying, “By the way, we can’t get you drugs anymore.” It [would be] traumatic.

Are people dying today while on ADAP waiting lists?

Arnold: People do die on waiting lists. We’ve had one official death in the last month, and three to four deaths [were unofficially reported], but only people on the ground know the actual circumstances. In the last crisis, we lost two people in Kentucky and three in West Virginia that were publicly acknowledged and five in South Carolina who were not officially acknowledged.* Here’s the rub: It means two things.They were on the waiting list, and they died. They might have been on meds and have died. There are a number of people in my circle who have been on waiting lists, and some of them went off drugs for two or three months.

Are ADAP waiting lists a barometer of the state of our national HIV/AIDS epidemic?

Carl Schmid: HIV waiting lists are the tip of the iceberg. ADAP is probably the thing the state will protect the most, so if you’re at a situation where a state cuts [funding for] ADAP, that means it has probably cut prevention funding and other HIV funding before that, which is what happened in California. Other measures include cutting formularies and reducing eligibility.

Arnold: When word hits the street that there’s a waiting list and no money, people stop applying and stop getting tested. And if [ADAP] starts taking drugs off the formulary—like drugs for side effects or coinfections, which might be very important [to enable good adherence to antiretroviral medications for HIV/AIDS]—people are driving their health care providers crazy trying to access the drugs through paperwork-intensive processes, and that’s a huge administrative burden on caregivers or AIDS service organizations or ADAP employees if they do that work. So [when] you add all those things up, [you can see how cutting funding for ADAP can lead to a generalized worsening of the epidemic].

The June NASTAD report described a “perfect storm” for ADAPs. Demand is growing because more people are unemployed and losing health insurance as a result. At the same time, there’s less ADAP money because of the state and federal fiscal crises. According to the report, in 2009, states contributed 14 percent of the total ADAP national budget, which is a 34 percent decrease from the previous year, and the federal government supplied 49 percent of the funds—the first time since 1997 that its earmark was below 50 percent of the ADAP budget. What other variables are in this “perfect storm”?

Schmid: We’ve had a concerted effort in this country to identify people who have HIV through testing programs, and that’s stepped up the number of new diagnoses. The CDC just announced [that new diagnoses] went up 8 percent every year the last couple of years. [That’s a good thing except all these new people have to be linked to care.] Some go to Medicaid, some to private insurance and some go to Ryan White [which includes ADAP]. Also, one reason the programs are growing is that the drugs are working [they are keeping more people alive—which means more people are on drugs than ever before] and once people start medication they have to continue.

In December of 2009, the U.S. Department of Health and Human Services revised the official recommendations for when to start antiretroviral treatment. It now encourages people with CD4 counts between 350and 500 to start treatment. Earlier, the recommendation was 350 or below. Has this resulted in more people being on the wait lists?

Arnold: Anecdotally, yes. But there’s no solid database to quantify it. But if you live in circles with HIV-positive people as I do, you hear of people who maybe a year or two ago would have said, “No, I can wait [to start treatment].” Now their doctor is saying, “Maybe you shouldn’t wait.”

Let’s talk about the federal government’s response. Last time there was an ADAP crisis in 2006, President Bush found emergency funds.This time, there’s been a lot of discussion and steps taken to try to remedy the situation, but so far, no additional funding has been given. A few months ago, about 80 members of the U.S. House of Representatives signed a petition asking Obama for $126 million for ADAPs, but it got no response. Then two GOP senators introduced a bill seeking to take the $126 million from stimulus funds, but no Democrats signed on. Is the lack of additional ADAP funding a result of partisan politics?

Schmid: I don’t think it’s caught up in partisan politics. It’s caught up in lack of attention and priority for the domestic AIDS epidemic. There are so many competing interests for limited amounts of money. But money is being spent, and this hasn’t been prioritized. We do hear there will be an announcement [regarding funds] coming from the administration.

Arnold: The Senate bill is not politicized in the normal Democrat versus Republican sense. It’s wrapped up in, “Should we spend stimulus money versus other money.” A bipartisan letter is being drafted in the Senate just asking the president to find the $126 million however and wherever but quickly. Talk is going on as we speak to drop a companion bill in the House to match the Senate bill. There is huge frustration among the AIDS advocacy community that the administration hasn’t recognized it as being the problem that it is and that it’s the tip of the iceberg of a bigger problem. We spent 25 years building through the Ryan White CARE Act a remarkable system, and we’re about to let it collapse.

Does the current anti-spend atmosphere, fueled by the Tea Party, make it a heavier lift to score more funds in general—and therefore specifically for HIV/AIDS?

Schmid: Somewhat. But [the federal government is] still spending billions of dollars every day on certain things. This shows just how difficult it is to get funding for and to make domestic HIV/AIDS a priority.

Help us understand what is covered by the $126 million price tag that HIV/AIDS advocates say is allegedly required to meet current ADAP needs.

Arnold: All things being equal, $126 million should have allowed all ADAPs to more or less hold their ground—keeping current formularies, etc. [But the demand is bigger than ever and growing.] It’s no secret that in 2000 we had [an estimated] 1.1 million [people living with HIV in the United States]. Everyone agrees that the new infection rate is at least 56,300 a year. Even Dr. Fauci [director of the National Institute of Allergy and Infectious Diseases] has said, “You do the math: We don’t have 1.1 million anymore.”

In June, the Obama administration announced it was giving $30 million to HIV prevention for the current year. Can part of that money go to supplying ADAP meds on the theory that treatment is prevention?

Schmid: We don’t have all the details yet. We hear it’s not part of ADAP money, but we don’t know.

Arnold: In theory, yes, but it’s a different funding stream than ADAP.

Hypothetically, if 2,000 people are on waiting lists and without meds and, as NASTAD says, the average monthly drug costs per person is $1,003, then the immediate need for medication is like $2 million a month, or $24 million for one year. That’s not close to the $126 million figure HIV/AIDS advocates are asking for. What about prioritizing paying for needed meds to solve the immediate crisis and working on the larger problems in the background later, is that feasible?

Arnold: Probably no.The damage that’s been done by the shrinking federal contribution the past few years obviously undermines the pot of money, but the people [on ADAP] have continued to grow. Somehow the money has to catch up with not just the waiting lists but all the things driving the waiting lists. If the feds don’t step in with money, all these states struggling this year? Wait till next year.

Schmid: You say “the immediate crisis.” But we have to get across that it’s more than the waiting lists. It’s the crisis that’s going to be tomorrow: Illinois, Georgia, South Carolina, and whether they’ll institute waiting lists or disenroll people.

How will ADAPs be affected by the proposed “test and treat” concept currently making headlines—the push to test as many people as possible and link them to care, the idea being that people on treatment have lower viral loads and are less likely to spread the virus. Given that we can’t meet the medicinal needs of the pool of people currently on ADAP waiting lists, what will happens when that group expands?

Arnold: It starts to get progressively [worse]. It’s an exponential problem.

Schmid: I heard Grant Colfax [an HIV expert with the San Francisco health department] speak [in June], and San Francisco does have the money to get people into ADAP and Medicaid and private insurance. They feel like they can do it. That’s not reflective of the rest of the country. When health care reform kicks in in 2014, it is more realistic. But we need to prevent people from getting HIV in the first place so they don’t need ADAP. It’s the same situation in Africa: We don’t have the money to treat everyone, and at the same time, there are new infections. [Clearly there’s not enough money to allow us to] treat our way out of the epidemic.

Amidst federal and state cuts, pharmaceutical companies have helped fill in the missing funds for medications. Their rebates accounted for 31 percent of the 2009 national ADAP budget, a huge increase from 7 percent a decade earlier. What are the pros and cons of this close participation? Does it limit consumer choices?

Arnold: No. I’m on the fair pricing coalition, and when we deal with companies, the name of the game is to try to stretch the ADAP dollar further. Rebates and discounts help. But companies are in no position to come up with a missing federal share in a national disease epidemic. As a board member said, It’s a national emergency and a national epidemic, and the biggest lift has to be a national lift.

Schmid: It’s not just rebates, it’s the pricing as well. ADAP gets the best prices in the country.

Although health care reform won’t entirely kick in till2014, some provisions start next year. For example, ADAP costs will count toward a person’s true out-of-pocket expenditures (TrOOP), brand name drugs in the “doughnut hole” will cost half the price, and high-risk insurance pools will be set up. Is it possible the ADAP crisis will lessen once these changes kick in?

Schmid: No. These changes are so small [that they will provide] just a little help, but [they won’t] solve the problem. Federal and state funding are the two big immediate answers. Hopefully, [launching] a national AIDS strategy will help. We have to get HIV/AIDS on America’s mind again.

Arnold: [The problem will] get bigger before it gets smaller. One thing that gets lost is that this creates chaos on the ground. People actually do go off drugs in situations like this. We all know that interrupted HIV treatment is not good [because it can lead to drug resistance and people having fewer treatment options], and there is a lot of that going on, and it’s going to get worse. [Another issue to consider is] health disparities. A huge portion of America’s HIV-affected population is gay, and well over a majority belong to communities of color. Many are poor. That’s a lot of disadvantaged folks who happen to be HIV positive who are going to pay the price of inaction here.

The ADAP Advocacy Association (aaa+) in coordination with the Community Access National Network (CANN) and Housing Works hosts an annual AIDS Drug Assistance Program Summit July 5–7 in Washington DC. For more information, visit adapadvocacyassociation.org.

To read a recap by the HIV Prevention Justice Alliance of the Presidential Advisory Committee on HIV/AIDS conference call on June 29 about AIDS Drug Assistance Programs, click here.

* Correction: The asterisked sentence above has been updated from the original version, which incorrectly stated that five people had died on a wait list in North Carolina instead of South Carolina.