AIDS deaths, which increased ferociously in the United States throughout the 1980s and early ’90s to a peak of 51,000 a year, suddenly abated in 1996 with the advent of antiretroviral combination therapy, a pricey and toxic brew that pulled people from their hospital beds like Lazarus. The relief was so intense that Andrew Sullivan announced “the end of AIDS,” and researcher David Ho held out the hope of “eradication.” It’s often forgotten that AIDS deaths didn’t fall to 9,000 a year by 2001 because of drug discovery alone. Those lives were also saved by a national commitment to provide access to the new medications. Throughout the late 1990s, Congressional support for the AIDS Drug Assistance Program was so strong on both sides of the aisle that appropriations exceeded presidential requests every year.
That has now changed. As the growing epidemic slams up against state austerity measures, ADAP has descended into crisis, and Republicans in Washington have refused to intervene. As of early October, more than 600 people with HIV have been denied access to medications through the program. Three states have tightened income eligibility requirements; five have restricted the list of drugs they cover, hampering competent treatment; thirteen have capped their programs, leaving the sick to languish on waiting lists. ADAP has served as the payer of last resort since 1987, providing HIV medicines for hundreds of thousands of people with HIV who lack insurance, or whose prescription benefits don’t come close to matching the drugs’ exorbitant price tag. Most ADAP users are the working poor, earning too much to qualify for Medicaid at jobs that don’t provide health plans. Study after study has confirmed that the program saves public-health dollars by preventing expensive hospitalizations–and saves lives. But since February, two people have died while on the West Virginia waiting list, and five more just died on Kentucky’s. There are no death tallies for those whose income puts them a few dollars above states’ new restrictive income requirements.
Doctors, social workers and people with HIV describe a desperate scramble to gain access to lifesaving medications. In Alabama, the waiting list is 137, growing by nine or ten a week; to save additional dollars, the state just blocked coverage of the latest HIV drug, Fuzeon, a treatment used almost exclusively by those who have run dry of options. In Oregon, when the cash-strapped state temporarily eliminated some Medicaid prescription coverage, the ADAP waiting list ballooned; administrators responded by restricting covered drugs and instituting “cost sharing.”
Margaret Nicholson, a Springfield, Oregon, homecare attendant who survives with her mother and husband on less than $20,000 a year, lost her ADAP coverage because she couldn’t afford the new co-pays; she has now gone four months without seeing a doctor and is scraping by on pill samples. In North Carolina, HIV doctor Aimee Wilkin says some of her waiting-list patients, forced to seek medicines through drug company charity programs, have faced multiple treatment interruptions, the result of bureaucratic delays, exposing them to the risk of HIV drug resistance. In Kentucky, caseworkers are so desperate they’re asking churches to pass the hat to sponsor someone’s pills for a few weeks at a time.
Even after aggressively negotiating with drug companies to save ADAP $65 million with price breaks for next year, advocates with NASTAD, an association of state AIDS directors, calculate that it will take an ADAP increase of $214 million to cover the growing need next year–the amount requested by Senator Charles Schumer in a budget amendment rejected on a largely party-line vote (with one brave exception, Republican Mike DeWine). Other Republicans, even from states with bursting waiting lists, like Alabama, Colorado, Nebraska and North Carolina, voted no, apparently under intense pressure from George W. Bush and Bill Frist to stick to their domestic budget cap. The health and labor spending bill is currently in conference, where a minimal increase of $25 million to $38 million is under debate.
Such underfunding, combined with an aggressive new federal HIV testing initiative, could swell ADAP waiting lists into the tens of thousands in 2004, according to Bill Arnold of the ADAP Working Group. In his State of the Union address in January, Bush made AIDS a cornerstone of his “compassion” agenda, announcing a $15 billion emergency plan to confront the global epidemic. He spoke of a doctor in rural South Africa who said that hospital workers, lacking drugs, simply tell their AIDS patients to go home and die. “In an age of miraculous medicines,” the President went on to say, “no person should have to hear those words.”
Six hundred–and counting–have now heard those words here at home. “For the people on those wait lists,” says Arnold, “it will be just like the 1980s, when there were no drugs, where you get pneumonia or a brain infection and within a couple of years you’re gone.”