Seropositive Clinic Opens in San Francisco

On January 1 Alan S. Levin, M.D., an immunologist in private practice in San Francisco, will open Positive Action
Healthcare, one of the first outpatient clinics focused on treating healthy seropositive persons to attempt to prevent
progression to AIDS or ARC.
Typical patients will be HIV-positive persons usually with some T-cell or other immunological deficiency, but either
asymptomatic or only mildly ill. While Dr. Levin is willing to treat persons more seriously ill with AIDS or ARC, he believes that other physicians are better equipped to do so and will refer such patients to them.
Dr. Levin is best known for his work with "transfer factor"--a substance prepared from human white blood cells of
healthy donors and used to confer certain immunities to patients. But he emphasizes that Positive Action Healthcare
will not be a transfer-factor clinic.
Dr. Levin has developed a protocol for seropositive persons, including transfer factor, AZT, acyclovir, and
intravenous gamma globulin. But he is willing to modify the protocol in cooperation with the patient, including using
experimental treatments as they become available. For example, four patients are already using dextran sulfate.
The clinic will also publish a monthly newsletter for patients and others. And it will offer evening support groups,
run by mental-health professionals.
And Positive Action Healthcare has hired an attorney who is also a physician, to go after insurance companies which try to evade reimbursing patients. This service will be available at no cost to the patient.

Comments

This writer cannot evaluate the medical merits of the treatment protocol planned for Positive Action Healthcare;
readers may want to discuss it with a physician they trust. But we believe that this clinic can contribute toward a
national model for care of seropositive persons, in several ways:
* Willingness to treat healthy seropositive persons with both conventional and experimental treatments--and to be public about it.
Official FDA guidelines do not recommend any treatment for seropositive but healthy persons. Yet current information
indicates that without treatment, over 70 percent of these people will eventually become ill with AIDS or ARC. And many physicians strongly suspect that treatments given early are both safer and more effective than if they are delayed until
after serious illness develops.
But there is no proof that any specific treatment will help prevent progression to AIDS or ARC. The disease
progresses so slowly that it will take years to run the trials to get such proof. And the medical profession has developed a cautious approach--which usually served well before AIDS--of strongly preferring in theory at least to use only procedures which have been tested and proven to work. Physicians are reluctant to recommend treatments based only on the best possible inferences from available information, when there has never been an actual test to show that the treatment works in fact, not only in theory. And here the tests will take years, time the patients don't have.
The result of this situation is that many leading physicians provide very different treatment to their own
patients than they are willing to recommend publicly. (For an overview of some of the issues involved, see the page-one story in the New York Times, "Doctors Stretching Rules on AIDS Drug", December 21 1987.) The big problem we see with this situation, one not discussed in the Times article, is the lack of development of a professional consensus because leading physicians are reluctant or unwilling to give their colleagues in public the benefit of the same best judgment they give their patients in private. As a result, most patients end up getting treatment by the book which is in fact second-rate care.
By being open and high-profile about what it is doing, even to the point of working with a public relations firm and
planning a press conference later in January, Positive Action Healthcare may help to bring the huge but largely silent issue of treatment for seropositive persons to the much-needed forefront of national attention.
* Willingness of leading non-gay physicians to get involved in AIDS.
A tiny minority of physicians now treat most of the patients with AIDS or ARC. Unwillingness of many physicians to
treat persons with AIDS threatens to become a serious problem. Dr. Levin already has an allergy practice of about a thousand patients; he could easily have chosen to stay away from AIDS. But he has excellent qualifications to get involved.
Dr. Levin has been an M.D. for over 20 years and is board certified in both immunology and pathology. He has published dozens of articles in major medical and scientific journals. In addition to private practice he has academic experience, and is currently Adjunct Associate Professor of Immunology at the University of California San Francisco Medical Center.
Dr. Levin has little experience in treating AIDS or ARC; that is why he refers the more seriously ill patients
elsewhere. But no one has much experience in treating healthy seropositive persons to prevent progression of the illness-- especially since it is too early to see much of the results of such treatment--and here Dr. Levin's academic and research background stands out.
Incidentally Dr. Levin's wife, Vera Byers, M.D., an immunologist who also has a Ph.D., has also published dozens of
medical and scientific articles on immunology.
Dr. Levin's resume also includes a paragraph-long listing of military honors, awarded during his service as a flight
surgeon in Vietnam. In recent years he has been a leading witness in the lawsuit by Vietnam veterans seeking government assistance and compensation for injuries suffered from exposure to agent orange, a chemical defoliant used by the U.S. military during the Vietnam War.
* A collaborative relationship with patients. Dr. Levin is willing to work with patients to devise an individual
program which they want to pursue, which may include experimental treatments.
We talked to one patient on another matter and found that he is very happy with Dr. Levin. John Athey of San Francisco, a long-time survivor who was diagnosed in January 1984 and who is active in helping other persons with AIDS, has been a patient of Dr. Levin since September 1984. He liked the reassurance that if one treatment didn't work it wasn't the end, there were others to try.
"Dr. Levin said, 'Don't worry, John, we'll keep you alive until they find a cure. And by we I mean you and I working
together.'
"If you go in and you have questions, he'll take time, he'll answer them, he'll write all over the table, he'll get
books out and pile books up on the examining table, he's just incredible. I'll ask a question and he'll say, 'Well here's
how it works', and he writes all over, and he gets out books, and he hands me articles and I give him articles.
"He really cares, he listens, he gets excited, and he fights."
* Openness to community input and cooperation. One of the partners in Positive Action Healthcare is Fred Ponder, a
patient of Dr. Levin, who works professionally doing business development projects. Mr. Ponder has been active for years in the National Gay Rights Advocates, and is currently chairman of the board. Recently he also joined the board of Project Inform.
The third partner in Positive Action Healthcare is Richard White, the chief operations officer. He is the one whom
persons are most likely to talk to first when they call the clinic for information.
Incidentally, fees are comparable to those of other physicians. For example, the initial visit includes a two-hour
physical and costs $225.; the routine monthly followup is $60. Transfer factor is expensive, costing $170. every two weeks for an injection. AZT will of course be the major cost when it is used.
The good news on costs is that Positive Action Healthcare plans to go to great lengths to help patients obtain
reimbursement for their treatment from their insurance.
* Prompt reporting of usable results. Dr. Levin is now treating 20 HIV-positive patients. He plans to publish
frequently, and also report informally in the clinic's newsletter to patients. He made available to this writer T-
cell statistics of the ten patients treated long enough for data to be obtained.
These results so far, of five patients who started treatment in 1987 and five who started in earlier years, are
interesting but not spectacular. Overall, helper T-cells increased in three of these ten, and decreased in seven. Seven
of the ten are using transfer factor and had before and after T-helper values; of these seven, the counts increased after
transfer factor in four and declined in three. None of the 20 patients has progressed to AIDS or ARC. These early tabulations do not prove anything. But we are impressed that Dr. Levin is willing to put them on the table, letting outsiders see raw data immediately, both good results and otherwise. Unfortunately most physicians to not collect or report data suitable for research; and most research projects take years from conception through proposal, funding, running the trial, analysis, and final publication of edited results. By contrast, Positive Action Healthcare plans monthly or even biweekly reporting of raw data, organized in a way which makes outside analysis possible.
No one knows for sure what treatments may slow or prevent progression from seropositive status to AIDS or ARC. What interests us about Positive Action Heathcare is not any specific treatments--physicians must evaluate those--but the contribution toward an open, community-based model of treatment and research which may greatly speed the process of finding out what works.

For More Information

For more information about Positive Action Healthcare, call Richard White at the new number for the clinic, (415) 922-
8501.

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