Testimony of John S. James Before the Presidential Commission on the HIV Epidemic New York City, New York, February 20, 1

The biweekly newsletter AIDS Treatment news began as volunteer research and writing for an AIDS archiving
organization in San Francisco. In little over a year it has grown to a circulation of over 3,500 almost entirely by word of
mouth--an unexpected public response which illustrates the critical dearth of practical treatment information felt by patients and physicians alike. Researching treatment articles for AIDS Treatment News has provided an unusual opportunity to hear what this community would like to see happen, and where it sees the obstacles now.
People react to an AIDS diagnosis in different ways. Some resign themselves to dying and begin to prepare for death. Others ask their doctors to make the medical decisions for them, without their personal involvement. I do not have contact with these people and do not know what they feel about treatment research and access issues.
But very many persons with AIDS or other HIV infections choose to involve themselves in decisions about their health
care. They often become experts in the disease and potential treatments.
And most of these people come to feel abandoned and betrayed by society. They believe that many physicians,
researchers, and officials have been quick to write them off as already all but dead--despite all the unknowns about this
disease which make it impossible for anyone to be sure that death is inevitable. The projected deaths of at least a quarter of a million Americans seem to have been accepted with surprising equanimity and surprisingly little sense of crisis or mobilization.
Oddly enough there seems to have been no professionally conducted survey asking the persons most directly affected by AIDS what they thought about the issues of treatment research and access now before this Commission. Certainly the people I know have never been asked how they see the situation, what problems they find in the institutional response to the epidemic, and what improvements they would suggest.