The Bay Area Reporter - August 22, 1995
G'dali Braverman, ACT UP/Golden Gate Writers' Pool

This summer was without a doubt the Protease Summer for most of us. Starting with the Saquinavir Lottery in June and ending with the Crixivan lottery in September, people with AIDS across the U.S. have waited for the last ping-pong ball to appear with their lucky number. The prospect of being a "winner" has come with the heavy price of knowing that your friend or lover might be one of many more "losers."

So we talk about sharing drug - although we know it could mean getting less than optimal dosage and losing potential benefit. We talk about hanging on until Protease Inhibitors are approved in '96 - although we know that some of us won't be here this time next year. We talk about hopes for a Protease to appear through the underground - but those in our community who have the financial resources aren't investing in that costly venture.

In short, the "Summer of '95" will be remembered as the turning point in AIDS drug development history when we began the process of devolution from Expanded Access Programs to the concept of AIDS Drug Bingo Nite.

This is not to say that organizations such as ACT UP/Golden Gate and Project Inform haven't spent months negotiating with pharmaceutical companies around the best way of broadening access to these much needed drugs. We were offered nothing - and with much effort stretched that nothing into 3,650 total slots for both Protease Inhibitors. We were told that drug was difficult and expensive to produce and eventually that rationale became part of every Protease discussion.

As a community of people living with a life-threatening disease, people with HIV/AIDS and AIDS Treatment Activists have made in-roads into drug development and access that no other "disease group" has been able to accomplish. Since 1990 tens of thousands of individuals accessed either ddI, ddC, D4T, or 3TC prior to approval. Each of those Expanded Access Programs had some restrictions, but for the most part each subsequent program became less restrictive to patients and less cumbersome for physicians.

If you've been reading these ACT UP/Golden Gate columns for a while, then you know that ACT UP/Golden Gate has been in a one year battle with Genentech (a local biotech) around expanding access to a breast cancer treatment. Two weeks ago Genentech finally caved in and agreed to create a program before year's end. This is an historic victory for the breast cancer community. However, already there is murmuring about a "lottery" program. This drug lottery idea may be the fastest growing cancer yet. People with breast cancer have never benefited from a large expanded access. In fact, even individual Compassionate Access has rarely been granted. Genentech's product is neither costly nor difficult to manufacture.

As a community we must insure our future by not allowing the creation of indiscriminately restrictive programs, regardless of the disease group in question. We all risk becoming "losers" if the precedents of "Summer of '96" are allowed to set the stage for future access programs.

As always, it is the loud, demanding voice of the affected community that inevitably makes the difference. For those of us who are healthy or healthier than our friends at late-stage disease we must be more participative in this process. There are several opportunities presently at hand.

A third Protease Inhibitor is being developed by Abbott Pharmaceuticals. This company has consistently refused to make any of their AIDS drugs more readily available to the community. Activists' efforts have repeatedly failed. However, we know that Abbott is responsive to one thing. Financial repercussions upon the company. In 1992 ACT UP/Golden Gate targeted the company by taking over the Pacific Stock Exchange. We protested Abbott's refusal to sell off the rights to an AIDS drug that they were otherwise unwilling to develop. Soon afterwards the drug was sold to another more cooperative company.

Everyday across this country people with HIV/AIDS are using nutritional supplements. As a result of intense marketing to the AIDS community, Abbott's subsidiary Ross Laboratories has captured a large part of the liquid nutritional supplement market. Their two main products are Ensure and Advera. We should not be buying these products!

There are plenty of alternate products on the market. It's very easy for each of us to write to, or call, our community's magazines that run Ensure and Advera ads and tell them to refuse them. We can also tell our retailers that we need to see these products off their shelves. Similarly our food banks can refuse free samples and easily get competitive products for their clients. Until the Abbott Protease is available we, the community, need to hit Abbott where it counts: in the pocketbook. And when it comes to an Expanded Access Program, Abbott should be the turning-back-point for people with HIV/AIDS.

It is to Abbott, who has held out longest, that we must yell: no lotteries, no way!!!

In response to a conservative wave, in these times when many national AIDS groups are telling the community to scale back its demands, we must respond by returning to the earliest insights of the AIDS activist movement. No matter what we are told is "impossible," we must demand more and make it "possible." We didn't get today's HIV treatments and prophylaxes for opportunistic infections by asking for less. More of us need more and better treatments. All of us must invest in making that a reality.

ACT UP! Fight back! Fight AIDS!
950822
BR950804

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