The Bay Area Reporter - June 19, 1998
Jeff Getty, ACT UP/Golden Gate Writers Pool

At the center of the controversy is Alan Hext, an asymptomatic HIV+ patient who suffered liver damage from long term Hepatitis C. Hext has been told he is on the current wait list at the UC Liver Transplant Center run by Dr. Nancy Ascher, but that he cannot receive a new organ because his medical insurance, MediCal, has refused to pay for hospitalization

Activists have learned that UC and MediCal (California's version of Medicaid) have a verbal agreement that U.C doctors would never submit a transplant treatment authorization request (TAR) for any HIV+ patient. Earlier this year ACT UP/Golden Gate convinced U.C to submit a TAR for Hext only by threatening a demonstration. MediCal had promptly turned down the TAR following a high-level phone call between UC's Ascher and the then-MediCal director, Dr. George Wilson. Wilson told activists that Ascher did not want MediCal to pay for the transplant because it was experimental.

Hext, AIDS activists, and members of the San Francisco Hepatitis C Support Project were infuriated. After all aren't doctors supposed to advocate in favor of patient treatment coverage? Why was UC saying it wanted to perform HIV+ transplants, and at the same time, advising a third party payer not to cover the operations?

"I wonder how many other so-called verbal agreements not to request coverage UC has with other insurance companies?" speculated Rick Solomon, a Hep C and HIV patient.

Hext, who has almost died at least twice in the last six months from liver failure, is outraged. Recently, he stormed out of the U.C Liver Transplant Center Clinic in tears, threatening lawsuits against both UC and MediCal. Doctors responded by downgrading Hext's need for liver transplant, a tactic that Golden Gate activists have seen before when the Veteran's Administration Hospital changed the status of a would-be heart transplant patient to low priority after advocate groups stepped in to help.

"The reason that UC has not gone ahead with its HIV+ transplant program is because they declared these transplants to be 'experimental,' thereby excluding most insurance coverage," said Brenda Lein of Project Inform. "Although they say they planned to obtain other funding, there was no real attempt made to do so, until only recently when Golden Gate forced a showdown in April."

Lein, Golden Gate activists, and others attended a tense meeting between UC transplant surgeons, MediCal officials, and other medical insurers in April. The outcome of the meeting was an expected collusion between conservative surgeons and insurance companies not to pay for any transplants. Surgeons who would have been in favor of going forward with HIV+ liver and kidney transplants were not at the meeting, which was arranged by MediCal and Ascher. The pleas of both AIDS activists and AIDS clinicians fell on deaf ears. There was only agreement to move forward with research protocols.

To date there have been several liver transplants performed on HIV+ patients. Most of these took place before there were any good treatments for HIV disease, and most of these patients went on to die from AIDS. Recently, there have been three or four HIV+ liver transplants on patients who are using the new HIV cocktail treatment therapies. News from two such patients who received livers in Pennsylvania have been good so far. The condition of the UC patient is unknown.

There is little data to prove whether or not these transplants are viable; the only way to find out is to go ahead with the surgery. Third party coverage is essential and historically not untypical to such transplant research. Activists and patients feel that telling insurance companies that these transplants are of higher risk is within reason, but the usual definition of "experimental" does not pertain since there is no need for FDA approval.

"The outright denial of consideration of any one group of people - PWAs, who now live a very long time - is a sad and scary precedent," said Virginia Cafaro, M.D., a local AIDS clinician. "Who will be next?"

Some wonder if there isn't some other reason why these transplants are not moving forward quickly. One need only read correspondence between surgeons and state officials to discover that the issue of scarce organ supply is a prime concern. A recent letter from MediCal to State Assemblywoman Carol Migden closed with a paragraph that voiced such concerns.

"Why is MediCal suddenly in the organ allocation business?" questions Alan Franciscan, a Hep C activist. "Perhaps the real reason these transplants aren't happening is because the conservative transplant community doesn't want yet another disease group competing for these organs."

Meanwhile, Hext and several other potential liver transplant patients' lives hang in the balance. "I cannot express the anger and frustration I feel over this situation," Hext said recently. Rather than attend Hext's memorial service, Golden Gate activists decided to force the issue with an old fashioned street demonstration at the UCSF Parnassus campus, in front of the Medical Sciences Building, Wednesday, June 17, at noon.

Featured speakers were San Francisco Supervisor Tom Ammiano, AIDS Clinician Dr. Mary Roymayne, and representatives from the Hep C Support Project.

"I never guessed I would be demonstrating with ACT UP in the streets," Hext said, "but now I realize how push comes to shove, and why these demonstrations are needed. I am literally fighting for my own life, and the lives of others with my condition."
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