The AIDS Drug Assistance Program (ADAP) was started in 1987to 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 inJune 2009, the programs provided medications to 125,479 individuals, accordingto the National Alliance of State and Territorial AIDS Directors (NASTAD).
Asof 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 thecare they need. The number is expected to balloon in the near future, with anestimated 250 to 300 people expected to be added in each of the coming monthsin Florida alone. And ADAPs in states such as Georgia and South Carolina arefacing total collapse.
The last time the country faced a similar crisis was in2004, when approximately 1,600 people were on lists. At the time, PresidentBush directed federal funds to bolster ADAP. Will President Obama and Congressstep in this time around? And exactly how dire is the situation anyway?
To geta handle on this growing crisis, POZ spokewith William Arnold, the CEO of Community Access National Network inWashington, DC, and Carl Schmid, the deputy executive director of The AIDS Institute, also in DC.
Let's start with the basic definitions about ADAPs andwhat 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 ADAPprograms in any way they think would work best in their local circumstances,which obviously vary greatly. ADAP will furnish your drugs, buy you extendedinsurance if you're eligible for that or wrap around a private policy if itdoesn't cover you enough. Each locality sets up eligibility levels and aformulary—in other words, the drugs the ADAP will furnish, and what you have todo to be eligible. [Requirements might vary as well,] from 500 percent to 125percent of poverty level. [The federal poverty level is $10,830 a year for asingle person.] ADAP is intended by law to be the payer of last resort. Youshouldn't be applying for ADAP if you are eligible for anything else, so youhave to go though a screening process, and that also varies.
What does it mean to be on a waiting list?
Arnold: You'veproved your eligibility and the ADAP doesn't have money, so you go on a listuntil somebody dies, moves out of the state or otherwise frees up a slot. Thatdoesn't mean you can't help yourself or that your doctor or AIDS serviceorganization can't help you [while you're on a wait list].
So when we hear about ADAP waiting lists, it does notalways necessarily mean these people aren't getting their medication?
Arnold: No, it doesnot necessarily mean that. Because in many localities people will figure outsomething. Back in 1996 when Mississippi threw 640 people off its ADAP, localchurches in Jackson, Mississippi, came up with $250,000 in matter of two weeksand found someone to administer an emergency program. But [imagine] in themeantime, [what it would be like] if you were a patient and you got a letter inthe 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 dodie on waiting lists. We've had one official death in the last month, and threeto four deaths [were unofficially reported], but only people on the ground knowthe actual circumstances. In the last crisis, we lost two people in Kentuckyand three in West Virginia that were publicly acknowledged and five in SouthCarolina 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 andhave died. There are a number of people in my circle who have been on waitinglists, and some of them went off drugs for two or three months.
Are ADAP waiting lists a barometer of the state of ournational HIV/AIDS epidemic?
Carl Schmid: HIVwaiting lists are the tip of the iceberg. ADAP is probably the thing the statewill protect the most, so if you're at a situation where a state cuts [fundingfor] ADAP, that means it has probably cut prevention funding and other HIVfunding before that, which is what happened in California. Other measuresinclude cutting formularies and reducing eligibility.
Arnold: When wordhits the street that there's a waiting list and no money, people stop applyingand stop getting tested. And if [ADAP] starts taking drugs off theformulary—like drugs for side effects or coinfections, which might be veryimportant [to enable good adherence to antiretroviral medications forHIV/AIDS]—people are driving their health care providers crazy trying to accessthe drugs through paperwork-intensive processes, and that's a hugeadministrative burden on caregivers or AIDS service organizations or ADAPemployees if they do that work. So [when] you add all those things up, [you cansee how cutting funding for ADAP can lead to a generalized worsening of theepidemic].
The June NASTAD report described a “perfect storm” forADAPs. Demand is growing because more people are unemployed and losing healthinsurance as a result. At the same time, there's less ADAP money because of thestate and federal fiscal crises. According to the report, in 2009, statescontributed 14 percent of the total ADAP national budget, which is a 34 percentdecrease from the previous year, and the federal government supplied 49 percentof the funds—the first time since 1997 that its earmark was below 50 percent ofthe ADAP budget. What other variables are in this “perfect storm”?
Schmid: We've had aconcerted effort in this country to identify people who have HIV throughtesting programs, and that's stepped up the number of new diagnoses. The CDCjust announced [that new diagnoses] went up 8 percent every year the lastcouple of years. [That's a good thing except all these new people have to be linkedto care.] Some go to Medicaid, some to private insurance and some go to RyanWhite [which includes ADAP]. Also, one reason the programs are growing is thatthe drugs are working [they are keeping more people alive—which means morepeople are on drugs than ever before] and once people start medication theyhave to continue.
In December of 2009, the U.S. Department of Health andHuman Services revised the official recommendations for when to startantiretroviral treatment. It now encourages people with CD4 counts between 350and 500 to start treatment. Earlier, the recommendation was 350 or below. Hasthis 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 circleswith HIV-positive people as I do, you hear of people who maybe a year or twoago would have said, “No, I can wait [to start treatment].” Now their doctor issaying, “Maybe you shouldn't wait.”
Let's talk about the federal government's response. Lasttime 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 remedythe situation, but so far, no additional funding has been given. A few monthsago, about 80 members of the U.S. House of Representatives signed a petitionasking Obama for $126 million for ADAPs, but it got no response. Then two GOPsenators introduced a bill seeking to take the $126 million from stimulusfunds, but no Democrats signed on. Is the lack of additional ADAP funding aresult of partisan politics?
Schmid: I don'tthink it's caught up in partisan politics. It's caught up in lack of attentionand priority for the domestic AIDS epidemic. There are so many competinginterests for limited amounts of money. But money is being spent, and thishasn't been prioritized. We do hear there will be an announcement [regardingfunds] coming from the administration.
Arnold: The Senatebill is not politicized in the normal Democrat versus Republican sense. It's wrappedup in, “Should we spend stimulus money versus other money.” A bipartisan letteris being drafted in the Senate just asking the president to find the $126million however and wherever but quickly. Talk is going on as we speak to dropa companion bill in the House to match the Senate bill. There is hugefrustration among the AIDS advocacy community that the administration hasn'trecognized it as being the problem that it is and that it's the tip of theiceberg of a bigger problem. We spent 25 years building through the Ryan WhiteCARE Act a remarkable system, and we're about to let it collapse.
Does the current anti-spend atmosphere, fueled by the TeaParty, make it a heavier lift to score more funds in general—and thereforespecifically for HIV/AIDS?
Schmid: Somewhat.But [the federal government is] still spending billions of dollars every day oncertain things. This shows just how difficult it is to get funding for and tomake domestic HIV/AIDS a priority.
Help us understand what is covered by the $126 millionprice tag that HIV/AIDS advocates say is allegedly required to meet currentADAP needs.
Arnold: All thingsbeing equal, $126 million should have allowed all ADAPs to more or less holdtheir ground—keeping current formularies, etc. [But the demand is bigger thanever and growing.] It's no secret that in 2000 we had [an estimated] 1.1million [people living with HIV in the United States]. Everyone agrees that thenew infection rate is at least 56,300 a year. Even Dr. Fauci [director of theNational Institute of Allergy and Infectious Diseases] has said, “You do themath: 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 goto supplying ADAP meds on the theory that treatment is prevention?
Schmid: We don'thave all the details yet. We hear it's not part of ADAP money, but we don'tknow.
Arnold: In theory,yes, but it's a different funding stream than ADAP.
Hypothetically, if 2,000 people are on waiting lists andwithout 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/AIDSadvocates are asking for. What about prioritizing paying for needed meds tosolve the immediate crisis and working on the larger problems in the backgroundlater, is that feasible?
Arnold: Probably no.The damage that's been done by the shrinking federal contribution the past fewyears obviously undermines the pot of money, but the people [on ADAP] havecontinued to grow. Somehow the money has to catch up with not just the waitinglists but all the things driving the waiting lists. If the feds don't step inwith money, all these states struggling this year? Wait till next year.
Schmid: You say “theimmediate crisis.” But we have to get across that it's more than the waitinglists. It's the crisis that's going to be tomorrow: Illinois, Georgia, SouthCarolina, and whether they'll institute waiting lists or disenroll people.
How will ADAPs be affected by the proposed “test andtreat” concept currently making headlines—the push to test as many people aspossible and link them to care, the idea being that people on treatment havelower viral loads and are less likely to spread the virus. Given that we can'tmeet the medicinal needs of the pool of people currently on ADAP waiting lists,what will happens when that group expands?
Arnold: It starts toget progressively [worse]. It's an exponential problem.
Schmid: I heardGrant Colfax [an HIV expert with the San Francisco health department] speak [inJune], and San Francisco does have the money to get people into ADAP andMedicaid and private insurance. They feel like they can do it. That's notreflective of the rest of the country. When health care reform kicks in in2014, it is more realistic. But we need to prevent people from getting HIV inthe first place so they don't need ADAP. It's the same situation in Africa: Wedon't have the money to treat everyone, and at the same time, there are newinfections. [Clearly there's not enough money to allow us to] treat our way outof the epidemic.
Amidst federal and state cuts, pharmaceutical companieshave helped fill in the missing funds for medications. Their rebates accountedfor 31 percent of the 2009 national ADAP budget, a huge increase from 7 percenta decade earlier. What are the pros and cons of this close participation? Doesit limit consumer choices?
Arnold: No. I'm onthe fair pricing coalition, and when we deal with companies, the name of thegame 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 anational disease epidemic. As a board member said, It's a national emergencyand a national epidemic, and the biggest lift has to be a national lift.
Schmid: It's notjust 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 counttoward a person's true out-of-pocket expenditures (TrOOP), brand name drugs inthe “doughnut hole” will cost half the price, and high-risk insurance poolswill be set up. Is it possible the ADAP crisis will lessen once these changeskick in?
Schmid: No. Thesechanges are so small [that they will provide] just a little help, but [theywon't] solve the problem. Federal and state funding are the two big immediateanswers. Hopefully, [launching] a national AIDS strategy will help. We have toget HIV/AIDS on America's mind again.
Arnold: [The problemwill] get bigger before it gets smaller. One thing that gets lost is that thiscreates chaos on the ground. People actually do go off drugs in situations likethis. We all know that interrupted HIV treatment is not good [because it canlead to drug resistance and people having fewer treatment options], and thereis a lot of that going on, and it's going to get worse. [Another issue toconsider is] health disparities. A huge portion of America's HIV-affectedpopulation 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 HIVpositive who are going to pay the price of inaction here.
The ADAP Advocacy Association (aaa+) in coordination withthe Community Access National Network (CANN) and Housing Works hosts an annualAIDS Drug Assistance Program Summit July 5–7 in Washington DC. For moreinformation, 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.