The Bay Area Reporter - Friday, January 1, 1999
Matthew Sharp, ACT UP/Golden Gate Writers Pool

It is no longer uncommon in the AIDS epidemic for two sides that have been at odds many times - activists and drug manufacturers - to come together, not contentiously, but peacefully and productively. AIDS patients and pharmaceutical companies may have different motives for drug approval, but they also have much in common, and have become unusual partners in the painstaking process of bringing drugs to market.

Each pharmaceutical company works differently with the AIDS community, and there is no set script for activists working with them. Some corporations include us in most decisions along the way, while others are less willing to work with activists, but virtually every company that has any HIV treatment in development has had the voice of people with AIDS (PWAs) involved in the process.

Patient empowerment

AIDS activists, many with no scientific or medical background, have educated themselves simply through practical experience in advocating for drugs to save their own lives. Over the years PWAs have advised drug companies in basic science, developing protocols for clinical trials, designing access programs, and negotiating ethical marketing strategies. Most importantly, the communications have helped in the ultimate goal, federal Food and Drug Administration (FDA) approval. No other disease group in history has mobilized so effectively to make life-saving drugs available to people who desperately need them; it is the utmost example of patient empowerment. As a result of their perseverance, the FDA has approved 15 new anti-viral drugs for HIV treatment in a relatively short amount of time, death rates are down, and companies are producing a profit.

Moving a drug through its elaborate research timetable can be a complicated journey with many roadblocks. New companies such as Trimeris rely upon PWAs who have been through the deliberations many times, who understand the realities of the process, and who are frankly the best unpaid consultants the corporate world can find. More established companies like Glaxo-Wellcome now know they cannot ethically move their research along without input from the AIDS community. They understand the relevance of activists' knowledge and understand that in reality, the negotiations help everyone concerned.

It wasn't always that way. At first, the only way to negotiate with pharmaceutical companies was to threaten them with direct action. PWAs held successful civil disobedience actions to get the industry's attention. Disruptions at scientific conferences, phone and fax zaps of companies, and arrest actions in the streets were common in those days. Stock markets and businesses were closed while CEOs and board members agreed to activists' demands.

Because of those actions, people with AIDS are now at the table, fully involved in the development process. Discussions are more civilized, are usually productive, and hopefully can serve everyone's best interests. But not always. There are still communication problems, hold-outs, and secrets kept by the industry that block positive interaction and further approval of the drugs. Sometimes the discussions inside will break down and force other activists to protest outside - simultaneously.

Contentious pricing

While most interactions with the pharmaceutical companies are about access and speedy development, there is more heated debate regarding pricing and long-term side effects. Pricing debates have been on the forefront of confrontations with the industry ever since the community forced Burroughs-Wellcome to lower the price of AZT, the first approved AIDS drug. Now that competition is fierce in the industry, pricing has become a major ethical concern among activists who fear drugs are priced at "all the market will bear." They worry that pricing will force bankruptcy in the federal and state assistance programs. Third world countries may never have access to the drugs because they are so expensive. The pharmaceutical companies may end up pricing themselves completely out of the market and no one will be able to afford the drugs.

Drug companies say they need to recoup research and development costs as many drugs fail and never reach the market. The companies say they need to price accordingly so they will be able to develop other AIDS drugs. But activists will never know what they are spending on development, because companies are usually not forthcoming with financial information.

Drug pricing is by far the most contentious issue confronting the epidemic, and medicine today. If communications would continue to be open and honest with the AIDS community as in the past, and the industry prices drugs fairly, perhaps this issue will be worked out like many of the others.

The progress of T-20 is an example of how discussions can be mutually beneficial. After meeting with activists in Switzerland, Trimeris changed design issues related to drug studies, and moved T-20 into Phase II clinical trials. Because the company brought activists to the table from the beginning, and responsibly listened to them, progress has been made in bringing a promising new drug to people who need it.

If all goes well Trimeris will see the approval of T-20. Now everyone is watching to see if the drug warrants approval, and if the company will price it responsibly. Activists will then move forward with the next issue at the table, the next AIDS drug, the next pharmaceutical company.
990101
BR990101

Always watch for outdated information. This article first appeared in 1999. This material is designed to support, not replace, the relationship that exists between you and your doctor.

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 1999. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .