T&D Teach-In

In 1989, the Treatment & Data Committee made an extensive teach-in about treatment issues to the ACT UP/NY floor. Below is the introduction to the event. While treatment activisim issues change, some of these principles remain.

How to Negotiate with Drug Companies

1. Know your shit.
Knowledge is power. Every significant gain won by ACT UP has flowed from our unassailable command of the issue. There is a wealth of information about new AIDS treatments.

People working on drug negotiations should maintain files about each priority drug, and should be able to xerox materials from the above to use in their work.

ACT UP's responsibility to the AIDS community includes being honest about new drugs. Sometimes, not much is known. We must always emphasize the bad effects along with the promise of new treatments. Otherwise, if the drug becomes widely available, people with HIV may injure themselves by taking the new drug based on hype.

2. Call and write the Sponsor and the FDA.
The start of negotiations is figuring out who you're dealing with. Call the drug company contact listed in AmFAR and find out who is in charge of developing this particular drug. Call the FDA and request the C.S.O. (consumer safety officer) for the drug. Ask both contacts for the latest information about the drug, trials underway, access outside of trials (compassionate use, etc.). Don't take "no comment" for an answer. You have a right to know. ACT UP is watching.

Then, write the sponsor a letter describing ACT UP's dissatisfaction with the slow pace of research and restrictions on access. Carbon copy the letter to the FDA (to Frank Young, Ellen Cooper, people in the consumer affairs and the CSO). Ask for a meeting.

3. The Meeting. Before ACT UP designs an action, it is fairest to have a meeting with the recalcitrant drug company. Sponsors are usually shocked to find out how much we know and how much ocntact we have with the Federal drug establishment. Often, it seem we have more contact than they do. Emphasize that ACT UP can help them get their drug out faster (if it's a good drug). Then make veiled allusions to bringing 3,000 angry AIDS activists to their headquarters and staging a media extravaganza. Refer to the burgeoning AIDS drug underground of they act like they have a monopoly on the drug. If they're abusing the Orphan Drug Act, tell them so.

4. Follow-up. Usually it's a good idea to follow up on the first meeting with a letter. If the outcome was good, tell them so. If it was unsatisfactory, say so and either request a further meeting or allude to other action we might take. With Bristol-Myers, they weren't prepared for the first meeting and were much more conciliatory the second time around.

Follow-up also a complete report to T&D and the Floor

5. The Action. Most rewarding of all is the well-orchestrated drug company action. For the most part, pharmaceuticals are much more worried about their public image than monolithic government bureacracies. Make sure the action plan is well designed and that you have what you need for a successful action. Sometimes this includes handcuffs or electric power drills.

Crucial to the success of a drug company action is media coverage. For the Kowa zap in July, 1988, we made sure all 3 Japanese networks covered it. The company released dextran sulfate to Americans the very next week. A good fact sheet and cogent demands are also crucial.

6. The Impact.
Increasingly ACT UP/New York is working with other AIDS groups around the country. Some sponsors are closer to other ACT UPs. The Astra zap was coordinated by ACT UP/Boston with New York representation. We should work closely with other ACT UPs and AIDS Groups around the country for minimum impact.

7. Distribution. Just because a drug becomes available on Compassionate Use, treatment IND or Paralell Track will not guarantee that people who need it get it. We need to form a Task Force to ensure access to new drugs to people who get their health care in HHC hospitals and public health clinics. We should with New York City and state health officials to guarantee equity of access without regard to ability to pay.

Treatment Activism Outline

Get involved in your local ACTU (AIDS Clinical Trial Unit - now ACTG). All ACTUs need to have community advisory panels. A community advisory panel can help set research priorities, evaluate protocols, and make sure that al the affected communities are represented in clinical trials. Your ACTU may not willingly receive your input, but you must demand to be heard. Trials done without community input and support are likely to be outdated and irrelevant, or poorly designed. If your community does not have an ACTU advisory panel, you must fight for one.

Get involved in your local Community-based research organization. Community based research organizations need the same input that ACTUs do. If your community does not have a community based research organization, think about starting one.

Adopt a Principal Investigator. It is essential that AIDS activists become experts at the research going on in their communities. Meet the PIs conducting trials. Read their papers. Read their protocols. Discuss their research with them and their staff. Their staff is often more candid. Find out what they researched before AIDS. Learn their consultancy arrangements. Any scientist is influenced by received dogmas and industry alliances. Challenge them to make sure that these things are not biasing their research.

Have a teach-in you community. Knowledge is our key to fighting the HIV epidemic and the HIV bureaucracy. Scientists often discount activist input, we lack their experience and expertise. This is not true. Activists have made themselves experts. We must share this expertise.

Adopt a drug. Many drugs seem to get lost or waylaid between discovery and approval. Studies are indefinitely delayed and people with HIV are denied access to drugs. We must be vigilant to prevent this from happening. Identify a drug that you think is languishing and contact the company that produces it and the FDA officer who monitors its approval process. Find out sources of delay and seek to overcome them through letter-writing, phone calls, or direct action. Other activists from around the country are monitoring the same drugs; find out who they are and join forces for a national effort to assure speedy approval and distribution.

Communicate what you learn. Share nay knowledge that you gain with other activists and the public. Translate what you learn into language that is appropriate for the evening news. Hold events and demonstrations that allow you to communicate what you have learned through the media.

Reading is fundamental. Get a hold of the latest scientific journals. Start a science club to discuss important articles and share what you learn. Attend scientific meetings in your community and represent your point of view.