PROJECT INFORM

Published in SAN FRANCISCO SENTINEL, March 13, 1987 Also published in AIDS TREATMENT NEWS

Project Inform, one of very few organizations willing to collect and disseminate information about medical treatments
for AIDS and ARC not yet approved by the U.S. Food and Drug Administration, has become a unique resource center. In phone and mail contact with thousands of patients and hundreds of physicians and scientists, this organization may be the first anywhere to spot certain themes or trends concerning what treatments people are using, and which ones seem to be most successful. We interviewed some of the founders and staff of Project Inform, asking them for information which might be useful to our readers.


About the Organization

Project Inform, a community organization based in San Francisco, is sponsored by the non-profit Documentation of AIDS Issues and Research Foundation, Inc. (DAIR). (This writer is a member of the board of directors of DAIR, and has been familiar with Project Inform in that capacity.) Although officially a project of DAIR, Project Inform is in fact autonomous. Existing independently before its affiliation with DAIR, Project Inform sets its own policy, raises its own money, and is the larger and more widely known of the two organizations.

Project Inform first came to public notice by organizing an "underground" medical research study, of the effects of a
combined AIDS/ARC treatment consisting of an antiviral and an immune modulator (ribavirin and isoprinosine). Official
researchers strongly prefer to study a single drug at a time, and they had not researched the combination therapy despite a growing expert consensus that it was appropriate.

Later, some of the members started BARIG, the Bay Area Ribavirin Interest Group, which organized monthly trips to
Mexico to purchase ribavirin at a special group price. BARIG no longer operates because the manufacturer of ribavirin, ICN Pharmaceuticals, no longer makes the group price available.

Last June, Project Inform received a grant from ICN to hire a research professional to analyze the results of its
study of ribavirin and other alternative treatments. The first group of questionnaires has been compiled, and the tabulations are being analyzed.

The people of Project Inform include Joe Brewer and Martin Delaney, founders and directors; Tom Jefferson, full-time
administrative manager (formerly Acting Director/Special Projects Coordinator of the San Diego AIDS Project); Bill
Woods, Ph.D., research director; David Winterhalter, Ph.D., general resource person; and many volunteers. Two physicians and two statisticians serve as consultants. The mailing list includes two hundred physicians.

Project Inform currently provides information on six different treatments: antivirals ribavirin and d-penicillamine;
immune modulators naltrexone, isoprinosine and DNCB; and aerosol pentamidine for prevention of pneumocystis. Two other treatments now being considered but not included in the official list at this time are AL 721 (antiviral) and immuthiol
(immune modulator).

The organization has an office in San Francisco which answers about 75 phone calls and mails 40 to 50 information
packets per day. In other cities -- including New York, Chicago, Tulsa, and Long Beach -- it is helping local groups
develop similar treatment-information resources.

You can reach Project Inform at (415) 928-0293, or (800) 334-7422 within California, or (800) 822-7422 from other
states, to obtain its packet of treatment information. Physicians can request a much more detailed packet -- including
for example a bibliography of over 500 medical papers on ribavirin going back to 1972. Note that Project Inform can
only supply information about the six treatments listed above, or others added later; it is not prepared to answer questions about some of the additional treatments mentioned in this article below.


Physician/Patient and Treatment Themes

We asked Martin Delaney, Tom Jefferson, and Joe Brewer what they were hearing from their communication with thousands of people around the United States and abroad. The following themes emerged.

(Note: Project Inform provides information about experimental treatments, but it does not give medical advice.
Only the appropriate medical professionals can evaluate each case and make recommendations for a particular patient.)

* There is a growing consensus that treatment should begin at the earliest reasonable time. By monitoring changes in T- cell subsets and other blood parameters, physicians can spot early signs of trouble. Patients can then make decisions about beginning treatments.

* Patients need a physician who will support and help them pursue a future. The attitude could be something like "let's try to find out how to keep you alive". If a doctor seems to write a patient off as dead, the patient may set out to find
another doctor.

* Patients often want to participate with their physicians in evaluating treatment options, and to choose among them.
They have a right to know, to follow the research, have an opinion, and get physicians to discuss their choices.

* Many scientific and medical experts believe that multiple treatments for HIV infection will be necessary.
Unfortunately, official AIDS research has only recently begun to test a combination antiviral and immune restorative
treatment, a strategy long urged by Project Inform and others.

* There is also a growing belief among physician researchers in the need to combine more than one antiviral
tactic, not necessarily at the same time. In addition, Project Inform is increasingly hearing from people who are using more than one immune modulator. Fortunately the ones being combined are usually mild, such as naltrexone, isoprinosine, and DNCB, and Project Inform has not heard of any problems due to drug interaction.

* Many patients at risk for pneumocystis will want to consider preventive treatment with pentamidine aerosol. Many
patients define being at risk as including those who have serious ARC, and others with very low T-helper cell counts, as
well as those who have already had pneumocystis, or who are beginning chemotherapy treatment for KS.

Physicians and patients should be aware of this new aerosol pentamidine preventive treatment, which appears to be
close to 100 percent effective in preventing pneumocystis with practically no side effects, and apparently no interactions
with other drugs. Project Inform can refer physicians to experts who can answer their questions about how to use this
treatment.

A number of persons taking AZT are also using aerosol pentamidine, as the rules of the AZT clinical trial permit its
use.

* Project Inform is seeing a growing belief in the use of acyclovir, either in combination with AZT or ribavirin, or
alone to prevent or treat certain opportunistic viruses.

* A Congressional committee or other investigative body should devote full attention to what is going on with AL 721.
This promising, inexpensive, and completely safe antiviral has suffered from severe and unjustified delays in research and in availability to patients. Baffling delays in approval of ribavirin by the U.S. Food and Drug Administration also need investigation.

* Certain attitudes are helpful or harmful. Avoid the "treatment of the month club"; instead, choose knowledgeably
and give a treatment a chance to work (not ignoring side effects, of course). Long-term, consistent use is important.
Many treatments take six weeks to three months before they have an effect. Preventive treatments, of course, may never show proof that they have worked.

A central theme of Project Inform is that patients have a right to take an active role. Nobody has the answer on AIDS
treatment.

Patients and physicians urgently need better access to information and expert advice -- especially for persons who are antibody positive and are considering treatment options now. Project Inform exists because we cannot wait for certainty, but must use the best information available.