AIDS Protesters Need to Alter Their Targets
AIDS protesters, along with other AIDS activists, have done a remarkable job of moving compassionate physicians at the National Institutes of Health (NIH) and the Food and Drug Administration (FDA) in a positive direction. The goal of greater and quicker access to experimental and approved drugs for people with AIDS virus infection is closer at hand. Now, however, protesters must focus on different targets--those who remain the obstacles. This means certain drug companies, health insurers and politicians. To continue to protest the FDA and NIH at this time would be counterproductive--it would slow down the availability of drugs.
When the AIDS epidemic was recognized in the early 1980s, the United States had not seen a major new life-threatening virus epidemic in decades. As a result, NIH researchers were slow to respond. And the FDA, with its tradition of slow and methodical drug approval, was unprepared to speed up its process. However, because of recognition of the seriousness of the epidemic and a willingness to listen to AIDS activists, people at NIH and FDA are finally working very hard to improve.
Both NIH and FDA have been given permission to hire new personnel to work on AIDS drugs. Employees there are working long hours, six to seven days per week, attempting to speed up the development of drug studies to get people into those studies, and to get drugs approved as quickly as possible. But major problems remain that must be overcome, and AIDS protesters can play a key role.
Among the estimated 1.5 million Americans infected with the human immunodeficiency virus (HIV--the AIDS virus), there are two competing needs. Those who are currently sick want and need experimental drugs as soon as there is some evidence that the drugs are reasonably safe and might be effective (“access”). Many of those who are currently well are liable to need medication in the future. They need scientific studies done quickly to show which drugs are effective (“answers”). The differing needs of “access” versus “answers” must be resolved quickly for each drug because once widespread “access” to a drug is provided, it will be difficult to get people into studies to compare a new drug with a presumably inferior one. Thus the “answer” could be delayed indefinitely. Close cooperation between drug companies, the FDA, and sometimes, NIH researchers will be needed to get studies done quickly.
The FDA and drug companies must discuss research studies at the earliest stages. The FDA is now willing, as are many drug companies. Some drug companies, however, are reluctant to work with the FDA either because they see the FDA as an adversary or because they fear the FDA will require more studies than they are willing or able to pay for. If adequate funding is lacking for a promising drug, NIH researchers could be approached to help with studies. AIDS activists can help recalcitrant drug companies see the benefit of cooperation that speeds up studies.
Another potential delay in this process is the inability of both FDA and NIH to hire new people to work on AIDS drugs. Two important reasons are inadequate salaries and fear of personal attacks from AIDS protesters. AIDS protesters should focus on persuading Congress to raise salaries for federally employed researchers. They must also recognize that attacking those already overworked increases the likelihood that some of them will quit, and there will be continued difficulty in hiring new personnel. Thus continued protest significantly risks slowing the process instead of speeding it up.
When drugs are shown to be effective, they must be available to people who need them. This will require health insurers to pay for those drugs once they are shown to be effective even if they have not been fully approved by the FDA. They must at least pay for drugs for their patients with drug benefits.
For people without health insurance or with health insurance but no drug benefit, Congress will have to mandate that the government pays for these drugs. Health insurers and Congress are appropriate targets of protests to ensure that patients receive these medications. They must be convinced that once drugs are shown to be effective in prolonging life and/or improving quality of life, people who need them must receive them (not only AIDS drugs but drugs for other major illnesses too).
Public pressure on recalcitrant drug companies and health insurers has a fair chance of succeeding. Pressure on politicians, while equally important, has less chance of success. This is because many politicians, tragically, reflect the current thinking of many Americans who want government to spend money only on programs that benefit them. This recent change from a “me first” to a “me only” society must be reversed. AIDS protesters can help. If that reversal were to occur, then at least something good would come out of the AIDS epidemic.
