The Bay Area Reporter - June 20, 1995
Jeff Getty, ACT UP/Golden Gate Writers' Pool

So-called "compassionate use" is common in large scale drug development plans for both AIDS and cancer. Rumors indicate that Abbot officials have been calling researchers to "test the waters" of the HIV community. Abbott's faint concern about its image - over an even fainter concern for PWAs - comes as little surprise to AIDS activists. As the HIV community turns up the heat, there are few signs of hope for thousands of AIDS patients who have exhausted all other treatment options.

A national protease working group, with a roster of nine powerful AIDS organizations, formed this winter to try to expedite compassionate access to the new protease family. While the group has succeeded in getting Merck to agree to supply drug to 1300 PWAs with under 50 CD4 cell counts, negotiations with Abbott have not been fruitful. A large phone and fax zap of 20 top Abbott executives and board members that began on May 16 has yet to yield any movement there.

"ACT UP chapters around the country are now planning action against Abbott that will reiterate our concern," stated David Millstein, who is leading ACT UP/Golden Gate's Abbott committee. "There will be demonstrations next week at Abbott facilities. There is talk of boycotting Abbott products, and people are finding ways to call Abbott board members."

Expectations and expectorations

Millstein is adamant that Abbott show compassion; he added that activists are starting a national campaign to highlight Abbott's neglectful attitude toward PWAs. "We are going to be a bone in their throat which they [Abbott] will not be able to swallow or cough out," he stated forcefully.

Another member of the protease group, Martin Delaney, Founding Director of Project Inform, is impressed with early AB-538 data results showing CD4 cell count increases of 300 and 400 for some patients. "We've had expanded access for other drugs, good and bad," said Delaney. "It's a crime that people don't have the opportunity to try Abbott's drug."

Unlike most other activists Delaney is optimistic that Abbott will eventually come up with compassionate use. But he also noted that some people are experiencing significant side effects including nausea and vomiting in the current phase two trials. Abbott may be forced to reformulate its drug soon.

ACT UP/New York's Jules Levin is extremely suspicious that Abbott is not coming forward with important side effect data. "They don't like to share information. I suspect that they may be jerking us around," remarked Levin. In terms of whether or not people with AIDS can expect an Abbott expanded access, Levin was neither optimistic nor pessimistic. ACT UP/New York is expected to focus on Abbott soon.

Abbott was still refusing to consider compassionate access to its drug at press time. In a phone conversation with Golden Gate activists, Abbott executive Doug Petkus again turned down compassionate use as a company option - and went on to say that he could not even begin to understand why anyone would want to demonstrate against Abbott. Activists respond that people demonstrate and boycott when all else fails; some people with AIDS will not march quietly to their graves. People with AIDS need options. Many have exhausted all available anti-viral remedies and are desperate to try the new protease.

Time to miss Ross?

Abbott profits immensely from sales of its Ross product line, which includes Ensure and Advera food supplements for PWAs. Some activists suggest Abbott gives more nausea to PWAs these days than it relieves. They say the idea of spending huge amounts of money on products that profit one of the more cold-heated cynical AIDS drug manufactures ever to hang its shingle in the AIDS community is wrong - both in principle and practice.

Meanwhile, Bay Area researchers are scrambling to enroll people with under 50 CD4 cell counts for Merck's MK-639 protease expanded access trials.

"We are expecting to be up and running after the July 4 weekend," said Dr. James Kahn of UC San Francisco General Hospital. UC's General Hospital is now recruiting AZT-naive patients to receive Merck's drug.

Persons interested in participating in protease drug studies and compassionate should call Nelson Murcar at (415) 476-9296, ext. 84092, or Stanford's Susan Ewing at (415) 723-6231. Waiting lists are already forming.
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