Life and death on the waiting list: states with drug waiting lists for low-income AIDS patients are getting some relief from the Bush administration's new prescription drug program.
Developed for AIDS patients who do not have adequate health insurance or cannot otherwise afford to pay for their medications, AIDS Drug Assistance Programs, or ADAPs, are authorized under the Ryan White Act, a federal law, but vary greatly from state to state in terms of funding and covered medications and services. Woods found that out firsthand when he moved to Henderson, Ky., from southern Illinois in April 2005 so that he'd be closer to Matthew 25 AIDS Services, where he is a client. "In Illinois it's a three-week waiting period, if that long" to get into that state's ADAP, he explains.
But Kentucky is one of several states with more patients than resources, and that forced the creation of an ADAP waiting list. As federal funding for domestic AIDS programs leveled off and the number of HIV/AIDS patients increased, stories of long waiting lists and the threat of death for some patients began making the news. In the past a Kentucky resident could have waited over a year to receive ADAP benefits. Woods waited 16 months.
Thanks to the Medicare Part D plan pushed by the Bush administration and passed by Congress, however, low-income patients now have broader access to AIDS drug coverage, and people like Woods are coming off waiting lists as well as getting meds not covered by ADAPs. In early July, Kentucky had 143 patients on the waiting list, according to state HIV/AIDS program manager Sigga Jagne, and she expects that number to decrease by as much as 100% by December. "The drastic reduction is quite unexpected," she says. Besides Medicare Part D, Jagne credits increased state funding, drug rebates, and savings from renegotiated state pharmaceutical contracts with helping to shrink the list. Still, she fears the list will grow again in 2007, judging by the rate of newly reported HIV infections in the state.
Even though Woods is off the waiting list, his life will change little. He will still receive a variety of services coordinated through Matthew 25, which has also helped him with getting benefits through KADAP and Medicare. "It's probably a real pain in the butt, but we have a wonderful lady who takes care of all the paperwork," Woods says of Matthew 25. "All you have to do is sign your name."
Jagne makes it clear that patients still on the KADAP waiting list are never left without some sort of benefits. "Every single person on the waiting list is being helped," she says. "They are getting their meds somehow," whether through drug programs administered by pharmaceutical companies, AIDS service organizations, Medicare Part D, or other means.
The reduction of the size of the lists takes the pressure off state AIDS agencies and AIDS service organizations that deal with the administrative, financial, and technical hurdles it takes to keep patients like Woods on their meds. "With the whole list getting smaller, you're not overutilizing various resources," Jagne says.
In the past patients on waiting lists often had to keep reapplying for drug programs with pharmaceutical companies, and that requires submitting tax forms, pay stubs, and medical information with each new application. "There is a lot of opportunity for people to fail through the safety net," says West Virginia ADAP coordinator Jay Adams. "That's why it requires a lot of diligence." Still, Adams has taken 29 people off the West Virginia ADAP waiting list since 2006 began. He attributes that success to increased state funding as well as the Medicare Part D coverage made available on January 1, 2006.
The recent reduction of patients on ADAP waiting lists has been particularly dramatic in Alabama, which has at times had the longest list in the country, according to Kathy Hires, who runs the 20-year-old nonprofit organization AIDS Alabama. "We're just blown away," says Hires, who notes that since last fall about 400 people have been moved off the list, which was instituted in 1997. "I have to admit I was pretty leery of the plan," Hires says of Medicare Part D. "This is all fantastic news." Like Jagne and Adams, she notes that increased state funding has also helped to slash the waiting list.
But Hires fears that Alabama's waiting list will rise again because of the flat-funding of the Ryan White Act, despite 40,000 new HIV infections being reported every year in the United States. And the list of drugs covered by ADAPs varies widely from one state to another. "New York has about 500 medications on its ADAP formulary," Hires points out. "We have about 40."
That disparity in ADAP coverage is why Medicare Part D is so important to people like Woods. When he lived in Illinois, supplemental drugs he took to combat side effects of highly active antiretroviral therapy (HAART) medications were covered. In Kentucky only the two HAART drugs he takes are covered. Without Medicare Part D, he would still have to rely on an array of assistance programs to get the six other medications.
The fact that people like Woods are long-term survivors creates another challenge, Hires explains. "It's wonderful that people can live long and successfully now," she says, but the system, which assumed that individuals would die sooner and make room on the list for newly infected people, has not evolved along with changes in care and life expectancy. "It has caused greater pressure on ADAPs and Ryan White," she adds. "If you have more and more people, you need more and more money."
And AIDS has become a more widespread problem, Hires says. When the Ryan White Act was passed, six urban areas were targeted because they were then the epicenters of the AIDS epidemic. But as the disease has spread to new areas, funding has not adapted to the migration of infections. "The South has the highest mortality rate in the country by far," she says. "I am thrilled that we don't have a waiting list now. But we still have work to do. Until we reach the point where everyone in the U.S. can have the same access to medications and have the same eligibilities, then it's still not good. People shouldn't be punished because of where they live."
RELATED ARTICLE: Lube that kills HIV?
"Could you hand me the microbicide?" may not be the most erotic thing to say during sex, but with rates of HIV infection on the rise again it could save your life. Trumpeted in August at the XVI International AIDS Conference in Toronto as a major new tool for prevention of HIV infection in women, microbicides that kill HIV could also be added to gels, lubricants, or creams to be applied during anal intercourse.
Jim Pickett, a leader in the International Rectal Microbicide Working Group, believes that making rectal microbicide products widely available could radically change gay men's fight against HIV infection. "Gay men deserve more than one method of protection from sexual transmission of HIV, something beyond latex," Pickett says. "The development of a safe, effective rectal microbicide would certainly reduce the amount of HIV infections among us and must be one of our top priorities,"
Microbicides alone are not likely to be as effective as condoms and will be recommended as a supplement to barrier protection rather than a substitute for it. Yet the products could offer some substantial protection to individuals who refuse to use rubbers.
Microbicides are still being studied, so far only in women who have vaginal sex, but the results to date are promising. Completing testing, getting Food and Drug Administration approval, and creating marketable products will take at least four years and perhaps as much as 15. But Pickett has faith that the products will have a revolutionary impact: "Microbicides could be the hottest thing to ever happen to gay men's health."
For more information go to http:// aidschicago.org/prevention/microbicides.php.--Mike McManus
Lisotta is a freelance writer based in Los Angeles.
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|Publication:||The Advocate (The national gay & lesbian newsmagazine)|
|Date:||Sep 26, 2006|
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