This Date in UCSF History: Student AIDS Forum Connects Patients and Caregivers
Originally published on November 15, 1990.
Several prominent physicians who have devoted much of their working lives in recent years to the AIDS epidemic shared their insights with students at the Nov. 7 forum.
In his opening overview, Marcus Conant, cochairman of the California AIDS Leadership Committee, attributed the rapid progression of the AIDS epidemic to homophobia and greedy politics by media, government, and scientific institutions alike.
“We knew that we were going to have a problem with this disease,” recalls Conant, a professor of dermatology at UCSF, “because it was occurring in a despised group of men.”
UCSF involvement with the AIDS epidemic began in 1981 when the Department of Dermatology, at Conant’s urging, established a clinic to treat an outbreak of Kaposi’s sarcoma (KS) in a population of gay males in their thirties. Once thought to be caused by a latent herpes virus, Kaposi’s sarcoma eventually was identified as an opportunistic infection in immuno-suppressed individuals.
In order to alert pathologists and dermatologists to the outbreak of KS and its implications, Conant helped produce and distribute a brochure in December 1981.
Complacency at the time was so prevalent that a national conference of 7,000 dermatologists in San Francisco’s Moscone Center greeted the brochure with indifference and distaste.
Poor reception to the initial UCSF work with KS patients prefigured a crucial lapse in standards of disease prevention, according to Conant. By the spring of 1982, the Center for Disease Control (CDC) had identified how KS was transmitted and had traced 50 to 60 of the first cases to a French Canadian airline steward (the so called “Patient Zero” in Randy Shilts’ documentary, “And the Band Played On”).
According to Conant, however, the CDC did nothing to educate the public about the need to wear condoms to prevent the spread of KS. Comparing the lethargic CDC response to Kaposi’ s sarcoma with its immediate response to Legionnaire’s disease, toxic shock syndrome, and poisoned Tylenol capsules, Conant concludes: “We saw a failure in a beautiful opportunity to stop the epidemic.”
While the CDC stalled the dissemination of information on how to practice safe anal intercourse, some physicians found themselves frustrated by their inability to treat Kaposi’s sarcoma.
Conant describes his own perception in May of 1982 as “the realization that you can’t just sit at your clinic, let a patient get a serious disease, and then diagnose it... when you could be out there in the community trying to stop the disease before it happened.”
He subsequently helped start the Kaposi’s Sarcoma Research Foundation, progenitor of the San Francisco AIDS Foundation. The hotline established at the time continues to operate more than eight years later. Conant said that December of 1982 saw yet “another example where an institution — this time the blood-banking industry— could have done a great deal to stop the epidemic.”
A baby identified with AIDS led researchers to trace the sources of blood for the 19 transfusions the child had received.
The mother was not immunosuppressed, but one of the donors was found to have Pneumocystis pneumonia, another opportunistic infection in AIDS. Over the next three years, 15,000 to 20,000 Americans were infected with HIV through blood transfusions until an antibody test became available to screen donated blood.
Conant believes that lack of an accurate screening mechanism was part of a greater problem.
“If blood banks had used their access to the media... and begun to educate the public about this new disease,” he asserts, “the condoms would have probably gone on in 1983, not 1987.”
According to Conant, fear of losing its donor pool and its funding motivated the blood banks to join the prevailing conspiracy of silence.
In addition to educating doctors on how to recognize AIDS and showing the public how to prevent it, physicians appealed to state and federal legislators for money to combat the epidemic.
They found an effective advocate in Willie Brown (D., Speaker of the California Assembly), who “railroaded” allocation of funding for AIDS research in late 1983. What started as an annual budget of $3 million from the state has since grown to $12 million.
Congressional lobbying in Washington raised the budget to $48 million, enough, in Conant’s opinion to at least start initial research in 1983. Now that research funding has been instituted and expanded, Conant sees the need for a centralized managerial board to ensure that every AIDS dollar is being well spent.
Although funding for AIDS research has been provided at city, state, and federal levels, Conant has found Governor Deukmejian to be “reticent to approve much in the way of AIDS education prevention, or treatment.”
He also found that “trying to get the federal government to do preventive education has been virtually impossible.”
Speaking with Synapse after his talk to the Student AIDS Forum, Conant identified Jesse Helms (R., North Carolina) as the major obstacle to Congressional funding of preventive education programs.
It was Helms who amended a bill to prevent federal funds from being used for educational programs that he felt endorsed homosexual sex.
Conant said: “In one morning of the Congress of the United States, he did more than any one event to defeat all of the AIDS education that many of us had worked for seven years to put in place.”
Conant went on to say that Helms continually introduces measures which are in fact” feeding the epidemic” and are “killing people by what they do.”
Helms’ recent reelection last week left Conant dismayed but not discouraged. He stresses that it is now all the more important for new physicians to get involved in the political process.
Conant points favorably to a bill that physicians persuaded John Vasconcellos to introduce which limits the liability of biotechnology corporations doing vaccine research.
Before the bill passed in 1987, these companies directed most of their efforts to the development of drugs, due in part to the greater financial return of prescription pharmaceuticals and in part to the threat of unsympathetic juries.
Conant believes that suits against drug companies are tempered in the jurors’ minds by the fact that the drug company was at least trying to save a dying person.
“But if a vaccine damages you,” he said, “[when] you were healthy to begin with ... your compensation in the American court system is tremendous.”
In addition, vaccine companies are wary of being sued by people without AIDS who generate HIV antibodies to the vaccine and consequently get rejected by their insurance companies. Conant’s work with Vasconcellos has alleviated some of the liability barriers to vaccine research.
Since the bill’s passage, numerous HIV vaccines have been in the works, and it now looks like antibodies generated by vaccination may be used to treat AIDS patients.
Stressing the importance of lobbying at all levels of government, Conant said that “the AMA has failed us.”
When then-Surgeon General C. Everett Koop finally issued a statement regarding the use of condoms in the prevention of AIDS, the American Medical Association refused to back him, a decision that Conant finds intolerable.
“Organized medicine is very effective if anybody tries to reduce [physicians’] fees,” he asserts. “Organized medicine could have stood up with a voice and said ‘He speaks for us. What he says is true.’ Yet they have said nothing.”
Without the proper support, Koop met with White House disapproval and limited his own chances at a cabinet appointment in the Bush administration.
According to Conant, the “failure” of the AMA to support Koop is symptomatic of larger problems within the medical system.
Pointing to data amassed by UCSF researcher Molly Cooke, Conant claimed, “We are producing physicians that don’t want to care for AIDS patients.” Cooke’s data suggests that homophobia rather than fear of contagion prevents many doctors from providing adequate AIDS treatment and prevention counseling.
In addition, an unwillingness to accept the demands of AIDS medicine, preconceived notions of the role of the doctor, and an unwillingness to work with intravenous drug users all contribute to destructive physician attitudes.
“We’re not asking doctors to go into burning buildings,” Conant said, “but we are asking doctors to take certain responsibilities that society expects of them, using universal infection control procedures, to care for patients.”
Conant advised the medical students in the audience to look at society’s impediments to AIDS treatment and research.
In order to overcome institutional, societal, and personal denial, physicians must involve themselves at every level of the treatment process.
“Touch the patient,” he remarks, “do the things you want the nurses to do and the family to do, because in caring for patients, your example is really the thing that is helping make the difference.”
AIDS in the 1990s
Following Conant’s overview, David Werdegar, former chief of the San Francisco Department of Health, told the forum “San Francisco is the world’s Mecca for what is going on in AIDS at every level,” from the controversial, “underground” Prevention Point needle exchange in the streets to clinical and basic science research.
Now that Werdegar has returned to UCSF to join the offices of the Health Policy Institute and the Department of Family and Community Medicine, he hopes to influence the education of doctors-in-training.
“Physicians and medical students often feel that unless they are giving a curative drug, they are not doing anything,” Werdegar observes. He stresses that health-care providers “must realize that the supportive role of the physician — just being there for your patients — counts in what providing treatment is all about.”
He-predicted that “the AIDS epidemic will be a lens through which we will see many of the problems with our health care system... It will revolutionize all of health care.”
Preventive education must target teenagers and minority communities, according to Werdegar. Furthermore, he asserts, “we as physicians as of yet have no reason to congratulate ourselves on our efforts to combat alcohol and substance abuse.”
Werdegar echoed Conant’s point that in order to effect changes in health care, physicians must get involved in politics. Based on previous experience with Pete Wilson, Wedegar retains a cautious optimism about California’s governor-elect.
“[Wilson] has to prove himself,” he said, “but I’m perfectly willing to give him the benefit of the doubt”
Facts from myths
The story of AIDS education has largely been the story of separating facts from myth. The conception that AIDS is a disease of gay white males in their thirties or of intravenous drug abusers can lead to dangerous assumptions by those who do not consider themselves to be in a high risk group.
Organizations such as the San Francisco Black Coalition on AIDS (BCA) and the Center for AIDS Prevention Studies (CAPS) have established programs to provide information, prevention, referrals, services, and support in the ongoing effort to modify risk behaviors in multicultural neighborhoods.
Stephen Hulley, director of CAPS and vice chairman of the UCSF Department of Epidemiology, discussed both national and international dimensions of the AIDS epidemic. Utilizing information compiled by the Center for Disease Control, Hulley discussed the disproportionate distribution of AIDS cases among races in the United States.
African Americans, who comprise only 12 percent of the U.S. population, nevertheless account for 26 percent of the 150,000 AIDS cases diagnosed in America since 1981; similarly, Latino infection approaches 20 percent of total cases for a group which comprises under 10 percent of the population.
Hulley further noted that while the virus is “surprisingly noncontagious” through heterosexual vaginal intercourse (there is a one in 500 probability per episode of unprotected vaginal intercourse of transmitting HIV from an infected male to an uninfected female), over 10,000 women have become infected; furthermore, as stipulated in a BAC brochure, “AIDS is the number one killer of young women in New York and New Jersey.”
Further education of the epidemic came out of ongoing CAPS studies in the east central African country of Rwanda.
Jeff Tice, a first-year medical student who has worked with Hulley in Rwanda over the last two summers, supplemented the researcher’s discussion.
According to CAPS estimates, nearly one-third of all sexually active adults in Rwanda are seropositive for HIV. Those who are infected come primarily from the educated upper class; presumably, the possession of expendable income enables the wealthy to buy the services of prostitutes, who transmit the virus.
In addition, the Rwandi are already predisposed to HIV infection due to the proliferation of sexually transmitted diseases, left untreated due to the lack of good health services throughout the country.
Such ahigh rate of HIV infection in the educated class has led to severe socioeconomic effects, as Rwanda has lost a significant proportion of its skilled labor force.
Although cultural norms lead Rwandi to seek traditional African healers first, the CAPS team recruited a large patient population by offering free health care with many free prescription medicines.
Over the course of its involvement in Rwanda, Project San Francisco saw a stabilization in HIV infection rates. Their experience provides a useful model for how HIV testing, knowledge of serostatus, and preventive education can lead to safer sex practices and control of the epidemic.
Lisa Backus, director of the Second Annual Student AIDS Forum, indicated that some of the panel discussions from the first conference motivated her and the rest of the committee to organize this year’s forum.
“When you start realizing that you are going to have to treat these people who are all pretty young,” she recalls, “some of us just got intrigued in making sure this conference happened again.”
Many participants left the conference with a reenforced commitment to providing passionate care —and feeling as though they had learned in one day what they might never have learned in four years of medical school.
Patients talk about grief, need for hope
Four persons with AIDS spoke at the Student AIDS Forum Nov. 7.
While Bartholomew Casimir, Reggie Williams, Leon McKusick and Richard Stone each brought different perspectives on their struggles in living with AIDS, several common threads ran through their narratives.
All the speakers expressed disappointment and anger with the national government, bigoted attitudes and the inadequacies of what Stone called our “quick-fix medical system” in handling the chronic-care problems of AIDS.
“Doctors have a responsibility to do more than just write a prescription,” Stone added.
Bartholomew Casimir, Director of Education and Outreach for the San Francisco Black Coalition on AIDS, explained that “Talking is a tremendous and frightening step forward in dealing with the denial mechanisms [that surround AIDS].”
He describes himself as “a former nurse, a recovering addict and alcoholic and a gay, black man [who] fits in all the risk groups.”
When Casimir was first diagnosed with AIDS in 1984, he overheard an intern at the foot of his bed who argued, “He can’t have it — he’s not white.”
Casimir went through a drugged, six-month period of denial following his diagnosis, and then came to the realization that he needed to tackle his drug problem and then deal with AIDS.
The first step was not easy because, Casimir said, ‘There is no detox program in this city.”
Although San Francisco has several centers where addicts can go for a few days, the city lacks a place where people can be treated for longer periods of time.
“TLC is the best way to detox,” Casimir added. “People need to hear that you can go through this, that nothing is as bad as it seems.”
Casimir, who had been a medic in Vietnam, went up the California coast to Fort Bragg to learn about his “two life threatening diseases — AIDS and drug abuse.”
Casimir asked a librarian in Mendocino if the library had any AIDS information. She replied, “We don’t need anything on that subject.” Casimir said he “looked her in the eye and said, ‘Yes, you do.’”
That marked the beginning of his project of teaching others while educating himself about AIDS.
Casimir noted with regret that certain religious leaders, especially some local black ministers, who seem to think that “AIDS is God’s wrath on gays... a disease to get rid of the deviants.”
He works now to overcome the denial of AIDS in the black community, which is disproportionately affected by the epidemic.
After serving as an emergency room and operating room nurse for over 13 years, he realized: “The medical profession was obsolete... It was confronted with something that couldn’t be fixed.”
Casimir said that there is a need for “more residential treatment” and “more personalized treatment” for patients with HIV.
Casimir seems remarkably robust, considering he has AIDS. He now weighs 200 pounds, which is heavier than he ever has been. He credits his health to the self-esteem he developed after breaking his drug habit, as well as to acupuncture.
He tries to minimize his anxiety, he says, because “stress can compromise the immune system.”
Still, he cannot eliminate the grief caused by the number of friends, including the two doctors who treated him, that have died of AIDS.
Yet he feels he is “learning more about living from those who are dying.”
Casimir said that doctors also should adopt this philosophy in dealing with AIDS, especially when their knowledge is incomplete.
“A person who is a doctor and a person who is a patient learn together,” Casimir said. The most important quality a physician can possess is “intuition [in order to] have a compassionate approach.”
Making a difference
Reggie Williams, like Casimir, is a homosexual black man with AIDS who has dedicated himself to preventing the spread of the disease.
Williams worked in the UCSF Department of Radiology for seven years, until 1988, two years after he was diagnosed with AIDS.
Williams, the Executive Director of the National Task Force on AIDS Prevention and a member of the Third World AIDS Advisory Task Force, spoke on “Community Response to the AIDS Epidemic.”
Although he praises the “San Francisco Model” of dealing with the epidemic through the cooperation of community-based groups and municipal government, Williams recognizes that a number of people, especially teenagers and minority group members, “fall through the cracks.”
The incidence of sexually transmitted diseases (STDs) such as syphilis and herpes among teenagers is on the rise, “so HIV can’t be far behind.”
“The perception of the gay community has always been white,” Williams said, expressing frustration with “the denial in the black community around gay and bisexual activity.”
African Americans represent 12 percent of the U.S. population, but they comprise 26 percent of those with AIDS.
Williams also volunteers for Prevention Point, an underground needle-exchange program sponsored by a coalition of community groups.
Public opposition by black ministers, who claim that needle exchanges for IV drug users perpetuate the drug problem, presented serious obstacles in legalizing Prevention Point. At this time, needle exchanges are still against California state law, despite legislation introduced by California Assemblywoman Diane Watson.
Williams-praised the city’s Department of Public Health for encouraging police to “look the other way” and not prosecute the needle-exchange underground.
Prevention Point has been successful, according to Williams, in getting addicts to use clean needles.
During the course of a typical evening in the Mission district, they give out hundreds of clean syringes. Williams said there has been only one instance of needle exchange workers being “harassed” by the police.
The volunteers were arrested on the charge of distributing drug paraphernalia, but “the case was thrown out of court... because of people like Dr. Dave Werdager [former Director of Public Health] community-based people who know they need to make a difference, as trite as that may sound.”
“Tasks of Grief”
Leon McKusick, a psychotherapist at the Center for AIDS Prevention Studies and the conference’s keynote speaker, has tried to ease the suffering of people with AIDS since the crisis began. He recently discovered that he has AIDS.
McKusick discussed and illustrated, through touching excerpts from films such as “Steel Magnolias,” “Terms of Endearment,” “Ordinary People,” and “The Torchsong Trilogy,” the emotional impact of AIDS.
People with AIDS — who probably have already lost friends to the disease— and their caregivers must accomplish four “tasks of grief.” They must first “accept the reality of the loss” and then “experience the pain of grief.”
People who have not done this may “appear flat or distant” or “display vindictive or inappropriately directed anger.”
The third step is to “adjust to an environment in which the deceased are missing” and then “to withdraw emotional energy from the deceased and to invest it in another relationship or set of relationships.”
“We need to keep our hearts open,” McKusick cautioned, “but there needs to be a balance because we may need to desensitize and reinvest the energy.”
Doctors succumb to burnout caused by intense grief over losing patients to AIDS. McKusick said that the variable that leads to excess stress is “hours per week” rather than “total time spent” with terminally ill patients.
McKusick outlined, again by examples from videos, the “special characteristics of communities affected by AIDS.”
He showed scenes from “The Life and Times of Harvey Milk” in which gay and bisexual men and women discussed their profound grief and anger over the shooting death of Harvey Milk.
The film showed the march in which thousands of mourners wound their way down Market Street, holding small candles against the black night sky.
Their sense of rage and disenfranchisement after Milk’s assassin got a light sentence was captured in the rioting that erupted.
The flickering flames of the marchers’ candles contrasted with the angry fires set during the riots. As the screen went blank, McKusick almost whispered, “And into this community comes HIV.”
“Empowerment and hope”
McKusick brought an inspiring speaker to the forum to talk about “empowerment and hope.” Richard Stone, McKusick’s friend and client, looked frail and thin, yet he displayed an amazing strength of spirit. Stone was speaking in public about his experiences with AIDS for the first time.
Stone has had ARC since 1984, but developed full-blown AIDS last month. He discovered he had AIDS and PML (a terminal opportunistic infection that leads to AIDS dementia) on Oct. 1, after surgery.
Stone now has three helper T cells left to fight infections (the normal number is 2000). He refers to his T cells as “Larry, Curly, and Moe.” Despite his flashes of humor, Stone feels the weight of the bleak prognosis.
“It’s rough,” he said. “I’m 35 years old. Before February I was a stockbroker for Merrill Lynch. I had life in the palm of my hand.”
Now, he says, “I don’t know if I’ll be here Thanksgiving, and it’s only two weeks.”
Stone still considers himself lucky in many ways. The city has services such as Open Hand, and Stone’s former employer pays for 24-hour home care.
Stone said he has lost 25 close friends to AIDS, and not all of them had adequate care or income, or even the acceptance and comfort of their families.
Stone’s doctor had informed him of his condition during the operation, but Stone was under anesthesia.
His doctor saw him in the recovery room and asked, “Do you remember anything about the operation?” Stone didn’t.
The doctor continued, “So you don’t remember I told you that you had AIDS?”
Shocked at hearing the news this way, Stone explained with irony, “No, it’s not something that would have slipped my mind.”
Although Stone acknowledged that his doctor is a “good doctor,” he expressed disappointment in the physician’s response.
After delivering the diagnosis, the doctor answered Stone’s technical questions. His first question was, “What’s the treatment?” The doctor replied, ‘There is none.”
“I didn’t want that. I wanted some hope,” Stone told the prospective physicians in the audience. “That first day, after I was diagnosed, no one touched me. I needed to hear someone say, ‘This sucks, this really sucks and I feel for you.’ I needed someone to let me know I could fight... I wished my doctor had touched me. I felt like a leper... Hope is something that a doctor has no right to take away from you. If you’re breathing, there’s hope. That’s all there is. It’s about all I have.”
Because his doctor had reached the point where he felt he could do nothing for his patient, Stone took up that responsibility himself.
He found that megadoses of acyclovir and interferon might help, and since they could do no harm, he received a prescription for the drugs.
He also turned to non-Western forms of medicine, such as acupuncture, with his doctor’s blessing.
Stone told the audience, “You guys are the future. We need compassionate people.”
Several members of the audience hugged him after his speech.
Stone admits that he’s “not scared of dying” itself, and that he now feels “closer to a higher power. I’d like to think it doesn’t all end when you die. It doesn’t matter if it’s true or not, but it’s been a comforting thought.
“There’s not supposed to be pain associated with PML,” Stone said. “It doesn’t seem like such a bad way to lake my exit. You can say anything you want, and people will attribute it to PML.”
Although he is at peace in many ways, Stone still feels angry.
“I think about Ronald Reagan, and I try not to do it too much, because my blood pressure goes way high —and I’m a Republican,” he said. “I’m mad, but I can’t tell you at whom. I feel like it could have been prevented.”
The process of living with AIDS presents daily challenges for Stone. He has severe headaches and attacks of paralysis in the right side of his body.
“When that happens, you don’t know if it’s something that can wear off,” he said. “Every time, you think ‘Is this it? Is this the big one?’ You have to live with it.”