San Francisco Chronicle - Monday, July 29, 2002
Sabin Russell, Chronicle Medical Writer

Across the country, an estimated 1,200 people with AIDS who should be taking antiviral drugs have instead been placed on waiting lists.

"We are very focused, appropriately, on global access to treatment, but we are also not taking care of our own," said Ryan Clary of the San Francisco AIDS advocacy group Project Inform.

Eight states have instituted waiting lists, and that number is expected to grow.

California is not one of them. It bought its way out of an impending crisis by budgeting an extra $7 million for the program next year -- but as a new generation of costly AIDS drugs nears market approval in a slumping economy, tough choices are ahead.

The problem is most acute in North Carolina, where 671 patients have been unable to get into the state's AIDS Drug Assistance Program, or ADAP, since a budget crisis froze enrollment last December.

"Being on this waiting list is driving me crazy. I don't know how I will get my medicine next month," said Tina McCarroll, 42, a recovering drug addict in Charlotte. "I just want to stay alive, that's all."

McCarroll said she lost her Medicaid health insurance when she took a part- time job as a grocery clerk. She was depending on ADAP to keep up the supply of five antiviral pills she must take each day. If she had to pay for them herself, it would cost $1,000 a month.

"I used to be a drug addict," said McCarroll, a mother of two grown children. "I've been clean for two years. I want a job, but they're taking away my medication."

Stephen Sherman, director of AIDS policy for the North Carolina health department, said the state's $1.8 billion deficit is hurting a range of social programs.

"When you are in a budget situation like this, you are obligated to look at all kinds of things -- even things you do not want to do," he said. "Frankly, I don't see how we are going to get past this barrier in front of us. . . . We're looking north, to Washington."

Ironically, North Carolina is the state where the first AIDS drug, AZT, was manufactured by the firm now known as GlaxoSmithKline. It is also the home state of Trimeris Inc., whose promising AIDS drug T-20 may cause huge financial headaches for drug assistance programs.

Unlike other AIDS pills, T-20 is an injectable drug made of fragile, hard- to-manufacture proteins. Should it win Food and Drug Administration approval this year, as anticipated, it is likely to cost at least $12,000 a year -- the average cost of three to four other antiviral drugs combined.

"This is clearly a very expensive drug to make, but the budget is already busted," said Bill Arnold, chairman of the ADAP Working Group, a Washington, D. C., lobbying group made up of consumer activists and drug companies alike.

Because each state determines which drugs are covered, T-20 will be out of reach for most low-income uninsured AIDS patients, and it will put enormous pressure on ADAP budgets of states, such as California, that will seriously consider adding it.

The drug assistance programs began in 1987, at the time providing drugs to patients that quickly died of the disease. Since 1996, Congress has allocated money specifically for the programs as part of the Ryan White Care Act.

The program is difficult to track because each state is different. Thirty- seven states -- including California -- supplement the federal money with their own dollars. California covers 145 different drugs. Utah, by contrast, covers 18.

This year, the federal government will channel $1 billion to state-run drug assistance programs, which buy the drugs for some 140,000 Americans who are infected with HIV but have no health insurance. Many clients shift in and out of the program as they gain or lose health coverage, so at any given time about 80,000 are covered. That overall number -- on which costs are based -- is growing at a rate of about 600 per month.

As such, the cost of the program is outstripping the money budgeted to pay for it. Current estimates are that an additional $162 million in new federal money will be needed to keep the programs solvent through March 2004.

A bill that would provide $100 million in relief has passed a Senate appropriations committee.

California taxpayers currently cover 36 percent of the cost of the state ADAP, which is expected to treat 25,000 patients at a total cost of $166 million.

Next year, the state share will increase to $67.4 million, up from $60 million in the current fiscal year.

E-mail Sabin Russell at srussell@sfchronicle.com.

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Dear Letters Editor:

The San Francisco ChronicleÆs article on AIDS drugs ("AIDS drug funds drying up for uninsured Americans," July 29) has it wrong on a number of points. First, the AIDS medication-funding crisis is not just beginning to brew in America; it has been brewing, unattended, for years.

Second, some basic math is in order: The current yearÆs Federal budget of $1 billion to cover AIDS medicines for 140,000 uninsured Americans translates to $7,143 per patient per year; if 1,200 people are currently languishing on waiting lists, only $8.57 million would be needed annually to get those on waiting lists into medication treatment. To keep the AIDS Drug Assistance Program (ADAP) solvent through March 2004, simple math tells us that just over $17 million is needed for a two-year period, not the $162 million various alarmists, including Sabin Russell, claim is needed.

Just months ago I suggested that the ADAP Working Group push for federal 340-B deep discount volume-purchase pricing. Apologists for the AIDS industry fear that the Veterans Administration will oppose such a measure, and that the pharmaceutical industry will likely mount fierce opposition to volume discounts, as well. Sadly, Russell wasted not one drop of ink on this discussion and its relevance to eliminating waiting lists for prescription AIDS meds.

This is pure hooey: Federal law (bulk purchasing via 340-B) provisions are already in place. The pharma companies simply donÆt want to sell anything at volume discounts, wanting to put all its retail-sale profits into the bank, instead. All various jurisdictions need to do is to simply submit an application to obtain deep-discount volume pricing, and the AIDS medication waiting lists, with its attendant human suffering, would vanish overnight.

When the final chapter of the history of AIDS is written, which historian will remember that while lives were at stake, pharmaceutical company members of the ADAP Working Group may have plotted against prevent deep-discount volume purchasing in order to protect their profits, while AIDS activists on the Working Group failed to push hard enough or long enough to eliminate the waiting lists instantly via volume discount purchasing?

How many people will have died owing to this unholy alliancesÆ collective inaction, and who will be able to face themselves in the mirror shaving each morning? During the interim, dollars misspent on full retail pricing will lead directly to untimely deaths. Yet another sad example of "Dollars and Deaths."

When I climb into bed tonight, IÆll say a prayer on behalf of my partner who languished on a different Ryan White CARE Act waiting list for over a year, knowing that that he would be outraged (were he still alive) over the deaths which will occur owing to stalling by the pharma industry and the Working Group over volume-discount purchase of AIDS medications here in America. The stalling game has simply got to stop.

Patrick Monette-Shaw ICO/AARI (Independent Community Observer/AIDS Accountability Research Investigator)
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