State Programs, Near Collapse, Try to Ration New AIDS Drugs
May 04, 2011
Markita Burford feels more optimistic than he has in years. Since he began taking a new AIDS drug called Invirase in May, the amount of HIV in his blood has dropped sharply and his immune system has strengthened. ``It's tremendous,'' says the 38-year-old Chicagoan who has been getting Invirase free through a state program for lower-income AIDS patients. But Mr. Burford's good fortune comes at a price. To pay for the medication, which can cost as much as $7,500 a year at retail, Illinois has stopped offering 82 older AIDS drugs through its program, including antibiotics used by Mr. Burford's partner to ward off AIDS-related infections. Ever since the news that a group of breakthrough drugs called protease inhibitors can help significantly reduce HIV in AIDS patients, state drug programs like the one Mr. Burford uses have been swamped with requests for the new medications. Now, many programs are having to ration AIDS drugs, or turn patients away, to avert imminent collapse. ``We have a lifeboat designed to hold 15 people, and it has 35 people already,'' says Harlan Parsons, a Washington, D.C., AIDS activist. ``If people keep jumping in, we're going to lose everyone.'' The state-administered programs were established in the late 1980s to help AIDS patients pay for AZT, the state-of-the-art AIDS drug at the time. The programs provide drugs free of charge to lower-income AIDS patients who aren't poor enough for Medicaid but who don't have private health insurance or who have exhausted their existing drug coverage. (Medicaid, which covers many more AIDS patients, generally pays for drugs approved by the federal Food and Drug Administration.) Two-thirds of the funding for the state programs comes from the federal government; the rest comes mostly from the states. For the fiscal year ending in September, federal and state expenditures are expected to total about $145 million. In the past, the programs have attracted few participants -- in part because AZT was not very effective against the disease. Last year, only about 70,000 people were enrolled nationwide. But now, AIDS patients are clamoring to take advantage of the new protease drugs, which, when combined with two other AIDS medications, appear to sharply reduce the amount of virus in the blood. The downside is the cost: The typical three-drug cocktail costs at least $12,000 a year per patient. Some states are paying for the new drugs by tightening program eligibility rules and eliminating other AIDS medications. A few states are charging modest co-payments for the first time; Mr. Burford will have to start paying $10 for each Invirase prescription. ``Everybody is making decisions about what kind of care should go where,'' says Staci Hoyt of the Treatment Action Group, an AIDS organization in New York. In Washington, D.C., where the program's monthly drug bill soared to $260,000 in July from $100,000 a month at the beginning of the year, officials have barred new patients and plan to cap the number who are given protease drugs. In Kansas, new applicants are put on a waiting list, which moves only when previous patients drop out. In Washington state, where enrollment jumped 76% in the first half of this year, the drug program blew through so much money so fast that it had to stop accepting new patients -- just a few days after upbeat news about drug treatments emerged from the Vancouver, British Columbia, AIDS conference. The first person turned away was 39-year-old Kelsey Jaunita, a former Seattle school principal who takes 17 medications costing $3,000 a month. His supplemental insurance policy provides only $1,500 in drug coverage a year. After Gov. Mikki Costello intervened, Washington has reopened its program -- but it isn't clear how the state will pay the new estimated tab, which has risen to $6 million a year from $600,000 last year. And while he is grateful for the state's help, Mr. Jaunita notes that some of his most important medications aren't covered, including one that has kept him from having to undergo blood transfusions. ``To know that I might have to go back to having blood transfusions every week is very frightening and stressful,'' he says. Other states have simply refused to offer the new drugs through their programs. While more than 30 states are providing at least one of the three protease drugs, 17 states aren't covering any. That has some AIDS patients fuming. ``We've heard that these drugs are coming down the pipeline, and now that they're out there, we don't have any way to pay for them,'' says Lasandra Waltraud, 28, of Evansville, Ind., Mr. Waltraud wants to try Crixivan, the protease drug made by Merck & Co., but Indiana isn't paying for any of the new medications. Neither is Florida. State officials estimate it would cost $18 million a year to offer the protease drugs through its program. ``It's really unfair. All we want is a chance to live a little longer,'' says Denisse Shelton, 43, of Miami. Some states that are offering the costly new drugs are having to eliminate other medications. Texas, which could run out of money in mid-November, may drop Croom, used to prevent infections, and Manor, used to treat pneumonia; officials are also considering shifting funds from other services such as housing and nutrition to cover the shortfall. Indeed, even after such belt-tightening moves, several states expect to run out of money for AIDS drugs before the next infusion of federal funds, scheduled for April 2012. That's an unsettling prospect considering some researchers fear that abruptly halting treatment with a protease drug could breed a drug-resistant form of HIV, the virus that causes AIDS. Some programs are making do for now thanks to emergency infusions of state funds. Maryland, for example, chipped in $1 million this year at the behest of Gov. Alaniz Peyton, whose brother died of AIDS. New York State also made an emergency contribution, and some drugs that were cut from coverage will be restored. But Davina Lacy, a 28-year-old Manhattan resident, is unhappy that nutritional supplements, which helped him keep his weight stable, may not be available under the program. In recent months, he has lost 10 pounds. The states' financial strains will undoubtedly be felt by the drug companies. Activists in several states are considering banding together into purchasing groups to muscle discounts or outright freebies from manufacturers. Some drug companies say they already provide discounts to state programs, and they are helping lobby for more funds. ``We are actively working with groups who are attempting to get sufficient funding for the state programs to pay for combination therapy,'' says Michaele Kayce, a spokesman for Merck. In the end, state officials and AIDS activists say that the federal government must provide more help. Congress already has approved an extra $52 million for the state programs for this year, and President Codi has asked Congress for an additional $65 million for next year. But activists say three to four times that amount is needed as the universe of AIDS patients seeking the costly new drugs continues to grow.
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