January 1989: AIDS Treatment Status

What do we see happening with AIDS treatments in the coming year?
While no cure is yet in sight, some very promising new treatment possibilities are now in view. Any one of them might lead to major improvement in AIDS therapy this year, even for those seriously ill. While more research is needed to make sure that these treatments do work, the big question in 1989 will be access. Will the research be done? Will treatments get to patients when clearly appropriate, despite formidable bureaucratic, commercial, and political obstacles in the way? Existing institutions will not automatically provide access. Much will depend on grassroots efforts and organizations.
Here are some of the developments and treatments we see as most important in 1989:
* Early treatment. Some physicians believe that early treatment can reliably halt disease progression, perhaps indefinitely. Others disagree. Because of the slow development of AIDS/HIV disease, it will take time before we know for sure. But systematic, unbiased followup of cases, both successes and failures, could quickly sharpen the available answers and improve decision-making guidance for patients and physicians.
* Practical clinical trials. While comprehensive lists are not available, it is clear that much more useful testing of treatments is being done now than a year ago.
Unfortunately most of the current management of clinical trials still does not reflect a sense of emergency; needless delays of weeks or months, caused by dysfunctional rules, are still easily tolerated. But many more trials, and more important trials, are happening now than a year ago.
And during 1988 the relevant establishment -- the medical, political, and media leadership -- became far more willing than ever before to acknowledge major shortcomings in drug development management, to openly discuss the issues and consider possibilities for improvement.
* New drugs. Many promising antiviral and other treatments are now in view (see our list in the article below).
While not cures, these treatments might be better than any now available. They could also provide options when existing treatments do not work, as well as new possibilities for combination therapies.
Unfortunately the treatments themselves and the research needed to make them useful are still usually out of reach. Existing government and corporate structures will not bring them to patients in 1989. But community activism could do so, through community-based research, through political advocacy, and through ongoing nuts and bolts work by self-help organizations.
* Community-based research. The recognition and momentum achieved by New York's Community Research Initiative (CRI) is now allowing other organizations, such as San Francisco's Community Research Alliance (CRA) to develop much faster than otherwise possible.
Community-based research not only empowers patients and organizes additional trials. It also builds a knowledge base to support expert public advocacy, sometimes for the first time ever, for correcting deficiencies in the medical-research system. (Advocacy- only organizations are also essential, but by themselves they are unlikely to develop as much depth of knowledge about what does and does not work in the research process as groups which routinely work with the FDA or state authorities, pharmaceutical companies, principal investigators, scientific and ethical review boards, etc.)
* Other advocacy and self-help organizations. ACT UP continues to focus attention on lost opportunities to save lives. Some of the groups now have ongoing research arms to investigate behind the scenes and discover the causes of research bottlenecks and access obstacles.
And a new kind of self-help group -- exemplified by the passive immunotherapy support group in the San Francisco area, which is doing the organizing necessary to provide access to this treatment option for its members and others -- may have long-range importance in providing a serious patient role in all fields of medicine and medical research, for AIDS and other diseases as well.
* The new U.S. administration. At this time, a week before the inauguration of President-elect George Bush, initial signs look good. Transition-team staff members are well-informed. President-elect Bush must know that AIDS will not go away and will be a disaster for his administration unless handled properly.
On the other hand, the new President must focus on economic and foreign problems. The AIDS response will depend on officials whose attitudes are unknown at this time.
* Economic access issues. Here the prospects look poor, because of the prohibitive cost of medical care and the national budget deficit. AIDS is one disease among others in a nation which is increasingly choosing to control medical costs by simply abandoning those who cannot pay for care they need -- not only the poor but also part of the
middle class, even some who are well insured.
While the United States does not yet have the political will to seriously address the growing lack of access to care, we believe that some issues can be successfully pursued:
* The AIDS community must resist attempts to pit different disease constituencies against each other. Affordable health care is an issue for everybody.
* All industrialized countries except the United States and South Africa have some form of national health insurance. The AIDS community can build needed contacts with other health groups by contributing to the effort to end the nightmare of unmanageable costs for catastrophic illness, a nightmare which will increasingly affect all but the richest or luckiest Americans, as insurance companies, employers, and government agencies find more sophisticated ways to renege on their clients and the public.
* Localities greatly impacted by AIDS or any other disease -- like those impacted by hurricanes or other disasters -- need Federal help when the strain on local institutions becomes unmanageable.
* Community-based research organizations can contribute directly to cost containment and access to care by making sure that low-cost treatments are studied. In the United States, the existing research system -- including public agencies as well as private companies -- only develops the most expensive treatment possibilities. Treatments which may cost a thousand times less, and have unique medical value as well, are usually ignored.
In summary, the elements for major improvements in 1989 are already in place. But no existing institution will bring these benefits to patients automatically. Community activism will determine how much of the existing potential is developed and made available this year.