ADAP EMERGENCY

AIDS Drug Assitance Program



ACT UP/East Bay

ALERT!

 

DISCLAIMER NOTICE: This Zap has NOT (if at all) been discussed by ACT UP/New York and consequently is not endorsed by AU/NY at this time. There is some discussion to be had as to drug pricing regarding mandates to pay anything to the drug company pimps.... _Nevertheless, this is posted for your information.

 

The two articles below from the Kansas City Star & SF Examiner
tell the terrible story all too well...

 Missouri to hold lottery to dispense AIDS drugs

 by Alan Bevley
Kansas City Star

KANSAS CITY, Mo. -- Early next month, someone at the Missouri Department of Health will full 132 random members from a computer, and all over the state people with AIDS will find out which of them has a shot at a longer, healthier life.

Faced with demand that outstrips its budget, Missouri will hold the nation's first lottery to decide who gets life-sustaining -- and costly -- new AIDS drugs called protease inhibitors.

Doctors are calling these drugs the best news in aIDS treatment in a decade. Protease inhibitors combined with older drugs like AZT can reduce the amount of HIV -- the AIDS virus -- in some patients blood to virtually undetectable levels, and prolong their lives. They have been in general use for less than a year.

People on protease inhibitors are rising from sickbeds, gaining weight and energy, and beginning new lives -- a phenomenon dubbed the "Lasarus syndrome."

 

But protease inhibitors burst upon the scene so quickly that AIDS agencies in Missouri and other states have not had the chance to budget adequately for them.

A year's supply of one of the three protease inhibitors available, along with the two other drugs typically given with it, can cost $12,000 to$16,000 a person.

The expense is forcing states to ration protease inhibitors and other AIDS medications for people not covered by private insurance or Medicaid. For example, Kansans can get the drugs, but the state has imposed a cap on the spending.

Missouri has set aside about $1.3 million for a year of protease inhibitor therapy and will provide $10,000 to each of the 132 persons who will be selected in the lottery.

Because costs per person easily can exceed that amount, the state is trying to negotiate discounts with pharmaceutical companies.

Missouri officials decided to hold a lottery to give every person with AIDS an equal chance to get the drugs, said John Hubbs, chief of the AIDS bureau in the Missouri Department of Health.

"Yes, the drugs are wonderful. Yes, they should be there for everyone. But there was no way we could provide them for everyone." he said.

Not every AIDS patient enrolled in the lottery is happy.

"I think it's a stupid way to do this. Just by the luck of the draw you get to be the person to live," complained a Kansas City man who did not want his name published. "How are you going to inform people?" he said. "Sorry, you're not going to live."

Other states have taken different approaches. Indiana, South Carolina and Vermont are putting patients on waiting lists. Kentucky has established strict medicalguidelines for accepting patients. Illinois has tightened income restrictions. Montana and the District of Columbia have closed enrollments. Kansas has not refused protease inhibitors to any of the 133 persons in its drug-assistance program. But the state has put a cap of $4,000 on the drug expenses of each patient from now until March 31, when the next infusion of federal money through the Ryan White Care Act is due.

Kansas officials acknowledge that $4,000 is not enough to cover protease inhibitor therapy for the entire period, and patients taking the drugs will have to seek money elsewhere.

"The alternative is just to run out of money some time this year -- hte whole program shuts down," said Sally Finney Brazier, Kansas AIDS director.

"The cap give clients the advantage of knowing how much they're dealing with so they can plan. It gives them more notice than they might have in other states."

Fifteen states that were covering protiease inhibitors expected to run out of money before the next Ryan White appropriation, according to a survey released in September by the National Alliance of State and Territorial AIDS Directors.

"This is like a train wreck aboard the Titanic." said Gary Rose, treatment and research coordinator of the AIDS Action Council, an advocacy and lobbying group in Washington.

"I sit here every day hanging my head, looking for some solution that is fair across the board. Right now, I can't find it anywhere."



ADAP/Care Dispute

AIDS funding did well in Congress, but activists are deeply divided over how the money will be split.

The fight is between lobbyists for the AIDS Drug Assistance Program Working Group and the Care Coalition, a group of cities recieving money through the Ryan White Care Act.

ADAP proponents say they went to House Appropriations subcommittee Chairman John Porter, R-Ill, and asked him for $100 million for ADAP, a program that is struggling because of the huge cost of the new anti-protease drugs.

Their request was followed by a letter to Porter from Rep. Nancy Pelosi, D-S.F., in support of ADAP.

 The Care Coalition, also lobbying for funds, was unhappy that all the money was earmarked for ADAP. It faxed a Sept. 24 "Action ALert" to its allies, urging them to ask Pelose to spread the money more widely -- in particular, the the Care programs.

The final appropriation is now split: half to ADAP, half to Care programs.

The Care Coalition's Ernest Hopkins, satisfied with the out-come, asserts that "a person without a home, or food, or transportation to and from the doctor is often unable to focus on being compliant to combination drug regimans."

But supporters of ADAP -- including Project Inform, the Republican Log Cabin Club of San Francisco, the National AIDS Treatment Advocacy Project and athe International Association of Physicians for AIDS Care -- say the money was wrongfully diverted.

 "Without access to drug therapy, other services are not meaningful," said Jules Levin of the Treatment Advocacy Project. "I was appalled by the last-minute maneuvering by a few AIDS community lobbyists who managed to take away $50 million of our money in the dead of the night, after we worked so very hard.

In an angry letter to Pelosi, Gordon Nary, president of the International Association of Physicians in AIDS Care, predicted: "The results of the reallocation will undoubtedly lead to more unnecessary suffering and death."


 

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P.O.Box 8074
Oakland, CA 94608
(510) 568-1680

 


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