ADAP programs fight for survival with less money and more clients
North Carolina’s list tops 700 by midyear
To hear AIDS advocates tell it, ever since the late 1990s when the first antiretroviral cocktails were prescribed, there never has been enough money for the AIDS Drug Assistance Program (ADAP) to provide drugs to all of the HIV-infected and uninsured people who need them.
It might have been easy for legislators and the public to think the annual plea for more funds was a case of the little boy crying wolf.
But this year is different, they say. The wolf’s finally at the door: In 2004, the waiting lists for ADAP assistance are the longest since the program began, and there is very little hope that the situation will improve before the next fiscal year begins.
Three years of economic trouble, combined with state budget crises and increasing numbers of uninsured and poor people living with HIV/AIDS have resulted in the worst-case scenario that ADAP activists have been warning about for years.
"Eight weeks into the program year, and we already had over 1,500 people on waiting lists — it’s the worst year ever," says Bill Arnold, director of the ADAP Working Group in Washington, DC.
"It seems to be clear that it’s off to a bad start with every indication that it’s going to get worse," he says.
Combine the poorly funded ADAP situation with flat-funding and decreases in HIV prevention money, and the result likely will be an uptick in the epidemic and increases in AIDS deaths, Arnold predicts.
"There are some indications the AIDS death rates already are increasing," he says. "HIV infection will continue to spread instead of being cut in half as the [Centers for Disease Control and Prevention (CDC)’s] stated objective, and we’ll start to undo what we’ve accomplished over the last 20 years."
Funds decrease as waiting lists grow
The Bush administration has proposed a $35 million increase in ADAP funding at a time when it would take $121 million in an emergency supplement to prevent the ADAP waiting list from escalating to more than 3,000 people, Arnold explains.
"The White House is trying to do the same thing as last year when we needed about the same amount of money and we ended up with a modest increase of $20 million to $30 million," Arnold says. "So the $175 million we didn’t get last year is showing up on some waiting lists, or it has evaporated because this or that state took drugs off a formulary or reduced the eligibility requirements."
While ADAP waiting lists clearly illustrate the HIV drug-funding crisis, there are many hidden signs, as well, he notes.
"From a political point of view, if a governor’s state doesn’t have a waiting list, there will be institutional resistance to establishing one," Arnold explains. "So you have extended application review processes instead of waiting lists."
States have reduced their drug formularies, established annual expenditure caps, increased cost-sharing, reduced or failed to increase eligibility, and otherwise found ways to reduce their ADAP roles, Arnold says.
The ADAP crisis looms ominously over the South, which accounts for about 80% of the nation’s ADAP waiting list.
In North Carolina, the waiting list grew to about 800 people by midyear, and there is faint hope of this situation improving, ADAP officials say.
What has happened in North Carolina is similar to what has happened in Alabama and other rural Southern states, says Patrick Lee, JD, project director for Piedmont HIV Integration Community Access System of the Piedmont HIV Health Care Consortium in Durham.
"The ADAP funds aren’t following the epidemic on a national level," he says. "The South, as a whole, is receiving far less funding for HIV care."
North Carolina’s ADAP funding has been about $8.3 million to $10 million, while the federal contribution is $14 million to $16 million, Lee adds.
While North Carolina’s governor had proposed a $4.2 million increase in state ADAP spending, by mid-June, the legislature appeared to be leaning toward a far smaller increase, says Steve Sherman, AIDS policy and ADAP coordinator for the North Carolina Department of Health and Human services in Raleigh.
"Without new dollars, we’ll have a waiting list for an awfully long time," he says.
Inadequate ADAP funding is only one piece of the public health care pie, and federal and state cuts to domestic spending will impact HIV-infected patients in other ways as well, Arnold points out.
More people will not receive treatment
Cuts in funds for prevention programs, public hospitals and clinics, Medicaid, and other areas all will contribute to a situation in which increasing numbers of HIV-infected people will not receive adequate health care and treatment, Arnold and other AIDS advocates say.
Even Medicare spending, the one area of public health spending that has received a big boost, likely will make things worse for many low-income AIDS patients, says Bill Vaughan, director of government affairs for Families USA in Washington, DC.
Due to the new Medicare drug bill, all people who are eligible for both Medicaid and Medicare, including many HIV/AIDS patients who are disabled, will have to receive their antiretroviral drugs through HMOs or free-standing plans, he says.
"They will actually be a little worse off," notes Vaughan. For example, people who are dually eligible for Medicaid and Medicare will be subject to all of the new Medicare drug bill’s restrictions at an income of 150% of the federal poverty level, he explains.
For a single person who makes $13,965 a year before taxes, this means he or she will have to pay a full premium for the drug coverage, including a $250 deductible plus $3,600 in out-of-pocket costs before receiving catastrophic protection, Vaughan says. "What is serious about this is the gaming where some of these for-profit companies can make more money by avoiding very sick people," he adds.
"They can look like they’re covering stuff, but by leaving part of the antiretroviral cocktail off, they can discourage really sick people from joining their plan," Vaughan points out.
So in the cases where an HIV-infected person has signed up for such a plan and goes ahead to pay out-of-pocket for drugs that are not on the formulary, then those out-of-pocket expenses do not even count toward the $3,600 deductible, he says.
On top of that, there is the threat that Congress could cap entitlement spending and ax domestic programs as a reaction to the huge deficit that has popped up in the past three years, Vaughan explains.
"There goes Medicare, Medicaid, and ADAP. What we’ve read and see coming down the pike is unconscionable — you either laugh or you cry," he notes.
A picture of funding from three states
Several state ADAP directors and AIDS advocates offer this picture of how ADAP funding has fared so far this year:
The state’s waiting list, which began in early 2000, topped 120 by midyear.
For eight years, the state has received only $90,000 for ADAP from the state, and the federal funds amount to $4.5 million, says Lisa Daniel, MPA, HIV/AIDS branch manager for the Kentucky Department for Public Health in Frankfort.
The state’s ADAP eligibility extends to people who earn up to 300% of the federal poverty level, and about 700 clients are on the ADAP caseload, she says.
Each month, the program receives about 20 applications and about five people drop off the ADAP roles, Daniel says.
To make certain ADAP money is spent efficiently, the state verifies that drug prescriptions are filled and will require clients to explain what has happened when they haven’t filled their prescriptions in a few months, she notes.
Also, ADAP will pay copays for HIV-infected people who have health insurance through a Ryan White Title II base program, and ADAP will pay health insurance premiums for people who have access to insurance but cannot afford the premiums, Daniel says.
"But as expenditures for drugs increase and our average dollar per client increases, that leaves fewer financial resources for other folks," she continues
Idaho’s waiting list of 13 by midyear was about 10% of its 112 active clients.
"We have had quite an influx of eligible applicants applying for ADAP, and it has exceeded what we can afford with our budget, and so we’ve had to go to a waiting list," says Linda Tomlinson, ADAP specialist with the Idaho STD/AIDS program at the Department of Health and Welfare in Boise.
The state also has a restricted formulary compared with many other states, and ADAP eligibility is at 200% of the poverty level, she says.
The waiting list is at its highest level and will only grow since there will be no increase in funding until April, 2005, Tomlinson adds.
More than 300 people were on the state’s ADAP waiting list by midyear.
The list has grown steadily since the state capped enrollment in ADAP, May 1, 2003, says Scott Barnette, program manager for the Ryan White Title II Program of the Colorado Department of Health in Denver.
The state also took opportunistic infection medications off the formulary list, but has not made a change to its eligibility requirement of 300% of federal poverty level.
"We need some additional funding to get people off the waiting list, and it has to be funding that shows we can sustain them on the program," Barnette says.
About 700 clients are served with $1.3 million in state funding and $4.5 million in federal funding, he notes.
"We’re in contact with people on the waiting list, and to the best of our knowledge, they’re all receiving medications through some mechanism: patient-assistance care, AIDS service organizations," Barnette adds.
Although there are no expectations for additional state or federal ADAP money, the ADAP office is working on an alternative plan that would find a creative way to accept private or corporate funding to supplement ADAP, he says.
"I’ve had some inquiries from corporations that have some interest in this," Barnette explains. "It is rather difficult due to the fact that it’s hard for a state government to accept money from outside sources beyond the government entities, and we’re trying to figure out a mechanism to do that."