The president's AIDS Commission has been ridiculed, disparaged and largely ignored as its members struggled first with each other and then with their staggeringly complex task. It has been widely viewed as doomed to failure by both mandate and membership. Its charge is far too broad for any one group. The appointees have been criticized for their politicization as well as their ignorance about the subject upon which they are supposed to make comprehensive recommendations.
Yet the preliminary report released earlier this month by the Presidential Commission on the Human Immunodeficiency Virus Epidemic, as the panel is officially known, contained a few surprises. Brief and nonspecific as it is, this document and the comments of retired admiral James D. Watkins, the chairman, revealed an unexpected level of sensitivity. The members appear to have been genuinely touched by the suffering they have seen on their field trips.
In content, though, the report only reiterated a few issues that have been reported in numerous studies: That we don't know how many people are infected with HIV, that home health care programs have to be expanded, that drug development must be given priority, and that drug users have been largely ignored.
It is a shame so much time is being wasted in educating the very body that is supposed to produce enlightened recommendations for the 240 million citizens of the United States.
Scientists and physicians already working in related fields take months to come up to speed in understanding the technical aspects of this disease and must exert a sustained effort not to fall behind. Ethicists and jurists face daunting learning curves grappling with aspects of the problem that touch their fields.
Although perhaps half the committee members are reasonably well versed in AIDS and its ramifications, the remainder appear to have been appointed for political reasons. However well intentioned and intelligent, a group so poorly chosen is put in an unfortunate position when suddenly granted the prestige and authority of a presidential commission. It is unfair to them, to those infected and to those yet to be afflicted.
The commission has acquainted itself with the array of issues facing it by taking formal testimony from a Who's Who of public health officials in the federal government, as well as by visiting a number of care facilities. Unfortunately, this takes time from those already engaged in substantive efforts to thwart the epidemic. It also duplicates effort; most of the information presented to them was already available in well documented reports published over the past year.
When the space shuttle blew up, members of the investigating commission were not chosen to represent a variety of views on why some objects fly while others do not.
Its members included physicists and astronomers, engineers and aviation editors, astronauts and test pilots -- all of undisputed eminence in their fields. They did not need to learn about combustion and rocketry by taking the time of high-level NASA and military officials.
There is merit to obtaining the views of a cross-section of Americans. But arguing that relatively inexperienced individuals should constitute such commissions is equivalent to holding that ordinary folks should be directly represented by sitting on the Supreme Court. Most of the members of this commission should more appropriately be giving testimony before it, rather than taking testimony.
When these people reach the finish line in June 1988, they will be at what was the starting line in June 1987 for people who had been working on the problem all along. There are easily hundreds of eminently qualified individuals in the United States who could have begun making plans and recommendations within days of being appointed.
In spite of all this, the commission is being treated with respect -- at arm's length. The witnesses do want to be helpful and do not want to undercut its efforts; they are largely courteous and deferential. At the same time, the best scientists do not want to be directly associated with this group. While recognizing the need for "civilian" oversight, most policymakers and researchers do not see the commission as having much effect one way or another. From the outset, they were a group disconnected from the network of people already accomplished in the field.
The mere existence of a presidential commission serves a useful function. One year ago, scientists and health officials could not get the message across that there was a need for a coordinating group. Congress was having trouble getting the administration to spend all the funds appropriated for AIDS. There was no sense of presidential attention nor of the society as a whole being concerned about the suffering of those already afflicted.
In reality, though, events are being driven by those on the front lines. Pressure has been bubbling up from patients and the physicians treating them, from public health officers across the country, and from researchers from New York to California.
Is there anything useful that the commission could do? If it truly recognizes its limitations, it could serve two functions.
First, the panel could recommend the structures for a series of continuing entities to replace it when it goes out of business next June. The problem has clearly outgrown the capabilities of any one group; we need a whole set of expert panels, specializing in research, education, public policy, civil rights, health planning and ethics. We also need a coordinating group of our most seasoned AIDS researchers and administrators, formalized along the lines of the interagency groups that already exist within the federal government.
Such panels could be chosen, for example, with the assistance of the American Public Health Association, the Hastings Institute and the American Bar Association. Every effort should be made to include members of social and ethnic groups most affected by the disease, but they should still be chosen for their expertise, not for political reasons.
The second, more important function for which the commission might be uniquely situated is to remove bureaucratic impediments to research. Fundamental investigation in virology, pathology and drug therapy must be given its own clear path through the thicket of social, financial and bureaucratic obstacles that litter any potential trail to a medical solution. Congress has led the White House by finally pumping out money for research in appropriate amounts, but there remains the capacity for poor use of talent and time. These appropriations must be separated from those for education, care and a host of associated needs.
If the research effort is not given such unimpeded priority, each unexpended dollar will be paid out a thousandfold over the next decade. The breakthrough to a new category of safe, effective drugs for viral disease -- equivalent to the antibiotics for bacteria -- is likely to come only after a long series of incremental steps. There is no way to predict how many years this will take.
Meanwhile, a variety of constituencies are already surfacing, each with a legitimate and costly agenda; this disease is well on its way to becoming the world's greatest budget buster. Resources for testing of the well and care of the ill are already competing vigorously with dollars for research. Life-extending drugs such as AZT raise these costs and threaten society with the "iron lung" dilemma of the polio era, where humanitarian efforts save few lives but drain capital from the search for a cure.
We are responding to the consequences of events that occurred five to seven or more years ago; we constantly lag behind in our efforts. Suffering already destined to develop among those who do not even know they carry the virus is staggering, even without a single new transmission of the virus. The hundreds of thousands of cases of full-blown AIDS expected over the next few years will come from those already infected.
The die may already have been cast for the general shape of events for the near future. But we are in a window of opportunity, not yet having been overwhelmed by this disease. Historians before the end of the century will look back unkindly on those who dither away time and opportunity in the closing years of the 1980s.
Hopefully, the Presidential AIDS Commission will do more than demonstrate that it is possible to take a reasonably intelligent cross-section of citizens and, at great expense over the course of a year, educate them about AIDS.
The commission could surprise the skeptics by looking within, confining itself to those few areas where it has some chance of being effective, and nurturing the wisps of compassion evident in the preliminary report.
J.D. Robinson, MD, is a physician practicing in Washington.