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Issue #210: January 1, 1999
fastfax is available by fax in the 215 and 610 area codes at no cost, or by mail anywhere for $20.00 per year, by calling 215-545-6868, and by E-mail by contacting and type the message SUBSCRIBE in the message section. Sources for some articles in this issue include AIDS Patient Care and STDs, Associated Press, CDC Morbidity and Mortality Weekly Report, Johannesburg Star, New York Times, Reuters.
CDC study highlights reasons people avoid testing
Another dentist loses HIV-related case
PWA killed by South African neighbors
Coalition organizes to demand salvage therapy
Study: 6 in 10 of NY PWAs think of suicide
TPAC: No money available for water filters
Portraits of Women Living with HIV
Vegetarianism and HIV: Making It Work
CDC study highlights reasons people avoid testing
The main reason people avoid HIV testing is fear of a positive result -- not because they are concerned about confidentiality breaches when HIV infections are reported to the local health department, according to the Centers for Disease Control and Prevention (CDC).
But the study also showed that some people whose behavior indicates they should be tested, especially sexually-active gay men, are afraid that if they test positive their names might be publicly released by their local health departments.
AIDS cases are reported by all states to the local and federal authorities to track the disease and target prevention programs, and 32 states now report HIV infections as well using either a person's name or a unique identifier (UI) -- usually a combination of numbers and letters.
"Some community representatives and public health officials, however, are concerned that HIV infection surveillance may deter some at-risk persons from seeking HIV testing," according to the CDC report.
In interviews with 2,370 HIV-negative or untested people, 25% of those who were tested and 23% of those who delayed testing said that fear of a positive result was the main reason they avoided testing.
About 19% of those who had never been tested said they were concerned about name-based reporting, but only 2% said that was the main reason that they had avoided testing.
Gay men living in states that already report names were more concerned about privacy. Thirty-five percent of that group said name reporting was one reason they avoided testing, but only 4% cited reporting as the main reason that they avoided testing.
If testing was anonymous and results were not reported to the health department, 84% of the untested people said they would be tested in the coming year. If testing was not anonymous, 72% would be tested in the upcoming year if there was no HIV reporting, 73% would be tested if there was UI-based reporting, and 61% would be tested if there was name-based reporting in their state.
"The findings in this report support the importance of addressing privacy concerns both in states that are considering implementing name-based HIV reporting and in states that already have adopted such policies," according to the report.
"Maintaining access to anonymous HIV testing is an important option for some persons at high risk for HIV infection, and CDC strongly recommends that all states provide publicly funded anonymous HIV testing and counseling," the report concludes.
Earlier this month, the CDC published new recommendations in which it asked all states to begin reporting HIV cases either with the person's name or an identifying code.
The CDC says the information will help health officials track HIV cases before they become full-blown AIDS.
Another dentist loses HIV-related case
A U.S. appeals court has again found that it is illegal for a dentist to refuse to treat a patient with HIV.
The U.S. 1st Circuit Court of Appeals, in a swift and unanimous, 11-page ruling, said that the use of so-called "universal precautions" rendered the risk of transmission of HIV in a dental office "insignificant."
The case, which eventually went to the U.S. Supreme Court, involved a Maine dentist who had been sued for discrimination because he told a patient with HIV that he would fill her cavity only in a hospital, not in his office, and she would have to pay the additional costs.
A divided U.S. Supreme Court ruled in June that the law that protects the disabled from discrimination covers people who have HIV, even if they have none of the disease's symptoms.
But the high court ordered the appeals bench to reconsider whether the evidence was sufficient to determine that the patient's infection posed no direct threat to the health and safety of the dentist.
Dentist Randon Bragdon declined to treat Sidney Abbott after she disclosed she had HIV on her patient registration form during a 1994 visit. Bragdon performed an exam and found a cavity, but told her that under his policy, he would only fill the cavity in a hospital setting.
He would charge her his regular fee, but she would have to pay the additional cost of whatever the hospital charged for use of its facilities.
Abbott refused the dentist's offer to treat her in a hospital, which would have required her to pay $185 for a procedure that would cost only $35 at the office. She eventually had the cavity filled by another dentist.
She also sued the dentist, as an operator of a place of public accommodation, for discrimination because of her disease.
Bragdon, a dentist for 20 years, argued that treating Abbott in his office would pose a direct threat to his health and safety. But the appeals court, which heard arguments just three weeks ago, ruled that Bragdon's evidence of the threat was "too speculative or too tangential."
Usually appeals courts take months to issue decisions.
"This ruling means that doctors and dentists cannot refuse to treat people with HIV based on their own unscientific fears," said Gay & Lesbian Advocates and Defenders lawyer Bennett Klein, who brought the case on Abbott's behalf. "People with HIV have experienced widespread discrimination in health care over the course of the epidemic."
"I wasn't really surprised because they had supported us before, but for some people living with the virus, this is what it may take for them to feel comfortable," said Abbott, 37, said about the case.
According to federal law, Bragdon may also be held liable for Abbott's legal fees which are likely to top $300,000.
Bragdon was unavailable for comment, but his attorney, John W. McCarthy, said his client will likely ask the Supreme Court to re-evaluate the case. Last June, the U.S. Supreme Court ruled 5-4 that people with HIV are protected by the landmark 1990 discrimination act, except if they pose "a direct threat to the health and safety of others."
PWA killed by South African neighbors
A 36-year-old woman was beaten to death after disclosing she was HIV positive, a Johannesburg newspaper has reported.
Gugu Dlamini was murdered in KwaMancinza, a town in eastern KwaZulu-Natal province, where an estimated 20 to 30 percent of the population has HIV or AIDS. She died of her injuries in the hospital, The Star reported.
Dlamini had publicly disclosed her HIV status at an AIDS awareness gathering. Details on when the gathering took place were not immediately available, and it was unclear if the murder was directly linked to her disclosure. However, some officials saw a link.
"It could be one of our most devastating setbacks in our fight against AIDS if it prevents people from going out and telling their partners their status and advising others on how to live with the disease," Health Department spokesman Dave McGlew was quoted as saying in the Johannesburg newspaper.
The New York Times reported that Dlamini was killed by neighbors who accused her of bringing shame on their community by revealing that she was HIV-positive.
Other AIDS advocates told the Times that although 3 million South Africans are infected with HIV, nearly all are afraid to admit it because of the hostility they face.
Dlamini, a volunteer field worker for the South African National Association of People Living With HIV/AIDS, went public on World AIDS Day, Dec. 1, speaking about her HIV infection on Zulu-language radio and on television.
Since then, according to nurses who knew her, she was repeatedly threatened by neighbors in her township of KwaMashu, outside Durban, who said she was giving their community a bad reputation. Last Monday, she was punched and slapped by a man who told her that many others who were sick kept quiet about it.
South Africa has the world's fastest-growing AIDS epidemic, according to the latest UNAIDS reports, and KwaZulu-Natal, where Ms. Dlamini lived, is the worst-hit province.
Although Ms. Dlamini called the police that day, they did nothing, friends told a local newspaper.
That night, a mob attacked her house and stoned her, kicked her and beat her with sticks. She died the next day.
"She was a nice, bright woman, and now her child is an orphan because of AIDS," said Mercy Makhalemele, a Durban-area administrator for the association. "But not because she died of it. Because she was trying to exercise her constitutional right to freedom of speech."
Prudence Mabele, the first black South African woman to admit being HIV-positive, said she was threatened many times after coming forward in 1994. She moved out of her township into downtown Pretoria largely out of fear, she said. A gay San Francisco group wrote letters to her local police station then, and it seemed to help. "But I just don't know if people should come out now," she said after Dlamini's death.
Kevin Osborn, a former local leader of the association, said he thought the killing would "put the cause of people with AIDS two steps back."
Ms. Makhalemele said she was not sure, thinking it might galvanize anger in the small activist community.
They have an uphill task. The head of the association, Peter Busse, said last month that fewer than 100 of the country's 3 million infected people were completely open about it. "When something like World AIDS Day comes around, we have trouble finding 20 people to go on television and radio shows," he said.
Ms. Dlamini's death is not going to galvanize much right now, according to those interviewed by the Times. U.S.-style activism about AIDS does not exist in South Africa, and all the association's chapters are closed for Christmas-summer vacation. "I'm waiting for Jan. 4. to make a big hoo-hah about this," Ms. Mabele said.
Ms. Makhalemele said she hoped to have a protest march in Ms. Dlamini's memory organized by late March.
A spokesman for the KwaZulu-Natal health department called the attack "sheer stupidity" and Deputy President Thabo Mbeki, who promoted AIDS awareness in his Christmas message to the nation, said: "It is a terrible story. We have to treat people who have HIV with care and support, and not as if they have an illness that is evil."
Dlamini is survived by a 13-year-old daughter.
Coalition organizes to demand salvage therapy
by Daniel J. DeNoon, Senior Editor
AIDS Weekly Plus
People with AIDS who have exhausted their treatment options desperately await ABT-378, Abbott's second-generation protease inhibitor.
Now their patience is exhausted, too.
A new advocacy group, The Coalition for Salvage Therapy, has sent a letter to Abbott Laboratories demanding that the firm immediately begin trials of the drug in heavily pretreated patients. The group, made up of a cross-section of patient-advocacy organizations, asserts that Abbott appears to be reneging on an agreement made at the 1998 World AIDS Conference to expedite such studies.
"Almost six months have passed since your initial commitment to conduct such a study and no visible progress has been made," the letter states. "Such delays are unacceptable when people with HIV continue to be at serious risk of illness and death."
The quickest route to approval for new AIDS drugs is to test them in previously untreated patients. Since all anti-HIV medications must be administered in combination with approved antiretroviral drugs, treatment-naive patients are far more likely to respond to all drugs in the combination. But this approach ensures that the patients most eager to receive new drugs - those who have failed previous regimens - are the last to get them.
"Industry must recognize that confining studies to treatment-naive patients in hopes of maximizing therapeutic effect for rapid approval is not an option," the letter warns. "Such a strategy will trigger widespread hostility, contentious debate, and closer scrutiny of industry practices in general."
The letter acknowledges that Abbott is experiencing serious production problems with ritonavir (Norvir) capsules. ABT-378 is vastly more effective in combination with ritonavir. But the Coalition asks that studies proceed using the liquid formulation of ritonavir.
The group's focus on salvage therapy is no minor quibble. Despite their efficacy, highly active antiretroviral therapy (HAART) regimens have failed in a growing number of patients. Current salvage therapies offer little in the way of long-term efficacy. These patients thus have their eyes fixed on the drug-development horizon, anxiously awaiting new drugs and new hope.
The letter threatens the fragile peace Abbott recently forged with patient advocates.
"Representatives of Abbott have indicated that the company wishes to improve its historically contentious relationship with HIV infected people and their advocates," it notes. "You have expressed a strong desire to create good will and cooperative working relationships with the community. No one wants to see those relationships jeopardized or eroded over this issue, but that surely will happen if evaluation of ABT-378's potential role as salvage therapy is further delayed."
Spearheading the Coalition for Salvage Therapy is Spencer Cox of the New-York-based Treatment Action Group.
Study: 6 in 10 of NY PWAs think of suicide
The presence of psychological symptoms in HIV-infected people is a good predictor of poor medical adjustment to their illness, according to a report by a multicenter group of researchers.
HIV-positive patients are at high risk for psychological distress and suicide, Dr. William Breitbart of the Memorial Sloan-Kettering Cancer Center in New York City and colleagues explain. Previous estimates indicate that HIV-infected individuals residing in New York City have a 36-fold higher risk of suicide compared with the general population.
To further investigate the relationship between suicidal ideation and medical and sexual adjustment in HIV-positive patients, Dr. Brietbart's team evaluated 91 outpatients being treated in New York City. Their findings appear in the December issue of AIDS Patient Care and STDs.
The average patient age was 40 years, and most patients were white, Roman Catholic, gay men who lived alone. Blacks or Hispanics made up 49.5% of the subjects, and for 31.9% intravenous drug use was the primary HIV risk behavior. More than half (54.9%) had a history of psychiatric problems, and 22% had previously attempted suicide. Most subjects had AIDS.
Dr. Brietbart's group found that 63.4% of the subjects reported suicidal ideation. "Variables that correlated with poor medical adjustment...were current suicidal ideation, number of psychological symptoms, physical symptoms, social support, and satisfaction with the social support received." In addition, they found poor sexual adjustment correlated with the same factors.
"In patients with a diagnosis of AIDS, the number of psychological symptoms and the satisfaction with the social support received were clear predictors of poor medical adjustment," they report. Similarly, psychological symptoms and suicidal ideation were predictors of poor sexual adjustment. However, the presence of suicidal ideation did not appear to affect patients' attitudes or behaviors towards medical care.
Based on these findings, Dr. Breitbart's group concludes that "...suicide ideation is associated with poor adjustment, rather than serving as an adaptive function, as has been suggested by others." They also recommend group therapy to "...manage the psychological morbidity that impairs adjustments to illness in HIV-infected patients."
TPAC: No money available for water filters
Larry Hochendoner, executive director of the Philadelphia AIDS Consortium, says he appreciates the recommendation of city health commissioner Estelle Richman that the group use "underspending" in its fiscal year 1999 budget to keep alive its free water filter program - but that TPAC has no underspending.
"TPAC [has] no underspending in this year as of this date and do[es] not anticipate any by year's end," Hochendoner said after being informed that Richman had not agreed to provide any additional funding for the filter program. Even if TPAC eventually does find that it has underspending, "this would not be known until May when any funds could be reallocated."
The Philadelphia AIDS Consortium's program which distributes water filters to people with HIV has run out of filters, and TPAC had asked the city's AIDS Activities Coordinating Office (AACO) to find funding to keep the project alive. AACO's fiscal year for Ryan White Title I funds ends in late February, while TPAC's Title II budget ends in June. Traditionally, AACO re-allocates funding that has not been spent on what was originally budgeted ("underspending") in December and January of the fiscal year.
Hochendoner said that TPAC had originally sent the request for additional funding at the suggestion of the AACO co-directors, who said that any requests for use of AACO underspending should be in writing.
TPAC's water filter program has distributed almost 300 water filters to low-income PWAs through Philadelphia Community Health Alternatives. PCHA announced early this month that it was no longer accepting applications for the program.
The TPAC program was initiated to alleviate fears of infection with cryptosporidium, a potentially life threatening bacteria which was found in the city water supply several years ago. City water quality officials say that they have largely eliminated the risk of crypto infection from the city's water, although water quality in some suburban areas continues to be questioned.
Health Commissioner Estelle Richman, in a letter to TPAC in late December, said that the city is considering distributing water filters through its own program early next year, depending on the availability of funding. AACO ran a similar program last year. Richman suggested that since TPAC has "underspending" of its Ryan White Title II dollars, it might consider using some of those funds to support its own program.
Richman also said that if AACO resumes its program, it will distribute the filters through a project which can reach the largest number of consumers at the least cost.
No cases of AIDS-related cryptosporidiosis have been reported in Philadelphia through September 30th, according to AACO, and only five cases were reported for the corresponding period of last year. Since January of 1990, 105 people with AIDS in the city have developed cryptosporidiosis, according to a recent AACO report.
Hochendoner had no comment on reports that the TPAC board has recently re-allocated TPAC funds to award him a $10,000 raise, at the same time it was claiming no available funding for the filter project.
Portraits of Women Living with HIV
River Huston will read and show slides from her photo-essay book, A Positive Life: Portraits of Women Living with HIV, at the AIDS Library at 1211 Chestnut Street, 7th Floor, on January 14th at 6:30 p.m. Light food and refreshments will be served beginning at 6 p.m.
Through candid interviews and original photographs by Mary Berridge, Ms. Huston details the endless emotional and physical struggles of life with HIV, a disease that provokes anger, hatred, and denial, yet somehow inspires equal measures of compassion, faith and humility. In the book, the women share their disappointments with failed treatments, the hope of new drugs and alternative therapies, and the pride of personal triumphs.
For more information, call Jenny Pierce at 215-575-1110, ext. 128.
Vegetarianism and HIV: Making It Work
A free breakfast for people living with HIV, their caregivers and AIDS service professionals
Special Guest: Patricia Lindstrom, RD
WHAT: Breakfast and Discussion
WHEN: Friday, January 22, 1999
8:30 - 10:00 a.m.
WHERE: MANNA
12 s. 23rd Street (enter on Ranstead)
Center City Philadelphia
RSVP: By January 20th to 215-496-2662.
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