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 in
2004, 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 350
and 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 till
2014, 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.
