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Issue #244: August 27, 1999
FASTFAX is available by fax in the 215 and 610 area codes at no cost, by mail anywhere for 20.00 per year, by calling 215-545-6868, and on the fastfax index page. Information in fastfax is drawn mostly from secondary sources; people living with HIV/AIDS should share information of interest to them with their primary care provider before making treatment choices. For more information on HIV medications and treatments, contact Kiyoshi Kuromiya of the Critical Path AIDS Project, 215-545-2212 or by email to The presence of the name or image of any individual in fastfax should not be construed as an indication of their HIV status or sexual preference unless specifically stated. Questions or comments should be directed to Editor, fastfax, 425 S. Broad St., Phila., PA 19147-1126 or by email to
In This Issue:
DC to use codes, not names, for HIV reports
AIDS deaths higher at "inexperienced" hospitals
Breast-feeding danger higher in early months
California legislature okays needle exchange bill
Chat room messages tied to syphilis outbreak
Radio host debates publishing names of PWAs
Gore locked out, DC protest set
Washington, D.C. Mayor Anthony A. Williams has announced that when the District starts registering new HIV cases, they will be identified by codes instead of names, a decision praised by members of the AIDS community and the D.C. Council.
Williams said he chose the "unique identifier system" to protect the privacy of people getting tested, despite arguments made by some of his public health advisers and the U.S. Centers for Disease Control and Prevention that names reporting yields the most accurate picture of an epidemic whose face has changed dramatically.
The mayor's decision on the unique identifier system came 15 months after Ron Lewis, director of the D.C. Administration for HIV/AIDS, triggered a heated controversy by urging Williams to join 32 states in adopting a system that records the names of people who test positive for HIV infection. If he had followed Lewis's advice, Williams would have broken a campaign promise to back a unique identifier system. He also would have gone against the wishes of 11 of the city's 13 D.C. Council members, who strongly favor the unique identifier method.
The system will begin operating in the next year, after city health officials travel to states using similar systems to study how their programs work.
"This system will assure confidentiality and not discourage anyone from seeking testing," Williams said. The reporting system will use a code developed from an individual's Social Security number and date of birth to try to avoid duplication of reports.
The debate over how best to collect data on residents infected with HIV has resulted in different systems in the Washington area. Maryland officials have been passionate advocates of the "unique identifier" system since they adopted it in 1994; Virginia has required doctors and laboratories to report the names of everyone who tests positive for HIV.
Pennsylvania is expected to require HIV reporting by the end of this year. Health department panels in both Philadelphia and Pittsburgh, where the overwhelming majority of the state's AIDS cases have occurred, have argued for a code-based system for the reporting process, although state health department officials are believed to prefer a names-based process.
The U.S. Centers for Disease Control (CDC) has threatened to cut off AIDS prevention funding for cities and states which do not meet its strict regulations for HIV reporting by 2002. While it has not specifically outlawed code-based reporting systems, CDC officials have long advocated for names-based reporting as more reliable.
Washington, D.C. has the highest rate of new AIDS cases per capita in the nation, said Williams, who announced his decision at La Clinica Del Pueblo, a clinic in Columbia Heights that treats AIDS patients. The head of the clinic supported the mayor's plan.
According to national data, the disease is growing fastest among Latinos, African American women, youths and heterosexuals in general.
The District has not begun to collect HIV data. An estimated 14,000 to 17,000 D.C. residents live with HIV or AIDS. AIDS remains the leading cause of death among District residents 25 to 44 years old. Last year, there were 186 cases of AIDS per 100,000 District residents--more than nine times the national average.
"It's clear to me that we have an epidemic," Williams said. "We need reliable data and a reliable tracking system."
In discussions with the mayor, Lewis, the city's AIDS chief, wanted Williams to reconsider his 1998 campaign statements favoring the code system. Lewis argued that the only way to avoid mistaken assumptions about who has contracted the virus and how is to list by name.
Lewis said yesterday that he wasn't "pushing" the names system but rather wanted the mayor to know that it is considered the most efficient, cost-effective method from a public health official's point of view.
But members of the D.C. Council and civil rights groups said a names system could worsen the epidemic by scaring large numbers of people away from being tested because of privacy concerns.
"There is every reason to believe that if someone thinks their name will be public in connection with this diagnosis, she or he will decide against being tested," D.C. Council member Jim Graham (D-Ward 1), former director of the Whitman-Walker Clinic, the region's largest AIDS service agency, said in a statement.
"The fact that the mayor of the nation's capital has taken such an outspoken position is very significant in this whole debate of HIV names reporting, nationwide," Graham said in an interview yesterday. "The CDC has been leaning very heavily on jurisdictions to do names reporting, and state after state has been falling in line. I can think of no other governor or other top state executive who has come out visibly in opposition to names reporting."
Only a few states use the number identifier system.
Fred Dillon, the state policy director of the San Francisco AIDS Foundation, which favors number identifiers, said a bill to put such a system in place in California was vetoed last year by then-Gov. Pete Wilson. Legislation to create such a system will come up again this fall before the state legislature.
In the District's new system, each case will be filed under a code number, based partly on the patient's birth date and Social Security number. Advocates for this method argue that this will shield identities while allowing officials to complete counts and devise prevention and education strategies.
Supporters of names reporting had argued that such data are subject to flaws, among them duplications when infected people are counted twice under two different IDs. And observers point out that no system is absolutely immune to a breach of privacy.
Both of Philadelphia's mayoral candidates, Democrat John Street and Republican Sam Katz, have endorsed a code-based HIV reporting system in Philadelphia, although the ultimate decision is the responsibility of Pennsylvania HOP governor Tom Ridge. (Washington Post/Washington Blade)
AIDS deaths higher at "inexperienced" hospitals
Deaths are more common among people with HIV/AIDS who are hospitalized in institutions with less experience in treating patients with HIV infection, compared with patients treated in hospitals that care for greater numbers of AIDS patients, according to a new analysis.
A group of California-based researchers, led by Dr. William E. Cunningham at the University of California at Los Angeles School of Public Health, evaluated the hospital discharge records for adults with AIDS in 1994 for all 333 acute care hospitals in California.
"Among 7,901 persons hospitalized with AIDS, the unadjusted inpatient mortality was 9.0%," Dr. Cunningham's group reports in the August issue of the American Journal of Medicine.
"The adjusted mortality rate varied significantly from 12.4% among institutions with the lowest quartile of AIDS experience to 10.3%, 6.3%, and 7.3% by quartile of greater AIDS experience."
Patients with more severe illness, comorbidities and prior hospitalizations also had a significantly increased risk of mortality. However, there was no relationship between mortality and sex, race or insurance status.
These results complement the findings of other studies performed in the 1980s, the investigators add. "It is striking that, despite policy recommendations to establish statewide and regional networks and discussion of a concerted effort to enhance provider networks and education, few changes in service delivery were achieved on the basis of those findings."
Dr. Cunningham's group therefore believes that "the time has come to implement policies to direct patients with AIDS to hospitals and providers with sufficient AIDS experience." (Reuters/American Journal of Medicine)
Breast-feeding danger higher in early months
The risk of HIV transmission through breastfeeding is highest during the early months of life, a multicenter team reports in the August 25th issue of The Journal of the American Medical Association.
Dr. Paolo G. Miotti, of the National Institutes of Allergy and Infectious Diseases (NIAID), and co-investigators at Johns Hopkins University, at the National Cancer Institute and in Africa conducted a prospective study at a hospital in Malawi with 672 infants who were born to HIV-positive mothers but were HIV-negative at birth.
They found that by 24 months of age, 47 of these breastfed infants became infected with HIV. No cases of HIV infection occurred after breastfeeding was discontinued.
While they observed that the cumulative infection rate increased over time, the incidence of HIV infection was highest during the first 5 months of life. "Incidence per month was 0.7% during age 1 to 5 months, 0.6% during age 6 to 11 months, and 0.3% during age 12 to 17 months," they write.
The results of the study indicated that babies of HIV-infected women have a 10 percent chance of getting the virus from their mothers' milk if they breast-feed for two years,. The study is the first to show that mothers with HIV pass it along through their milk for as long as they breast-feed. Past studies have reported breast-feeding transmission rates of 4 percent to 20 percent.
"The only factors significantly associated with low risk of postnatal HIV transmission in a multivariate model were high maternal parity...and older maternal age." Dr. Miotti's group speculates that mothers with less breastfeeding experience have a higher risk of subclinical mastitis, which may increase the HIV transmission rate.
"Early weaning has been proposed as one possible strategy to limit HIV transmission through breast milk," Dr. Miotti commented in an NIAID press release. "Although discontinuing breastfeeding after 6 months would have prevented half of the HIV infections seen in our study, such an approach would increase the risk for illness and death from the respiratory and diarrheal diseases that antibodies and other factors in breast milk help protect against."
The findings "indicate that the incidence of transmissibility is clearly greater during the early months of breastfeeding than the later months," Dr. Anthony Fauci, director of the NIAID in Bethesda, Maryland, told Reuters Health. "The contribution of this study is that it gives us a better handle on the timing of breastfeeding-transmitted HIV," he continued. However, the findings do not "lead to an easy strategy."
For example, some people have suggested that weaning babies as quickly as possible may reduce the risk, he explained. However, that proposal was based on the assumption that the transmissibility of HIV is constant throughout the breastfeeding period. The rationale for early weaning is undermined by the new finding that transmission risk is highest during the early period.
Dr. Fauci added that the NIAID is now sponsoring trials to investigate whether affordable, inexpensive drugs, or a single dose of a drug such as nevirapine, administered to infants during the early phase of breastfeeding, can decrease the incidence of this type of HIV transmission.
Breast-feeding is not recommended for women with HIV in the United States, where infant formula is plentiful. In developing countries, where formula is scarce, the World Health Organization recommends that women be informed of their risk and make their own choice. (Reuters/Boston Globe/JAMA)
California legislature okays needle exchange bill
Trying to slow the spread of AIDS, the California Legislature sent Gov. Gray Davis a bill on August 24th that would let cities and counties set up needle-exchange programs for drug addicts.
Current state law bars such programs but four California cities -- Berkeley, Los Angeles, San Francisco and Santa Cruz-- and Marin County have adopted emergency ordinances allowing needle exchanges.
Davis' office said the Democratic governor has not taken a position on the bill.
At least 15 other states have authorized needle-exchange programs, although there are exchange programs operating in more than twice that many states, according to Assemblywoman Kerry Mazzoni's office.
Supporters of her proposal said studies have shown exchange programs reduce the spread of HIV.
There have been at least six other needle-exchange bills introduced in California since 1993. They either died in the Legislature or were vetoed by then-Republican Gov. Pete Wilson.
California law, with a few exceptions, prohibits the furnishing, possession or use of hypodermic needles or syringes without a doctor's prescription. Similar laws are in place in Pennsylvania and New Jersey, although exemptions have been made for the operation of the Philadelphia exchange program, Prevention Point.
Other local governments interested in approving needle exchanges have held off due to fear of court challenges, said Regina Aragon, public policy director for the San Francisco AIDS Foundation.
"It's very important that communities get the clarification they need, that local law enforcement gets clear direction," she said.
Supporters of the Mazzoni bill said studies have shown exchange programs reduce the spread of HIV. Aragon said the number of needle-transmitted AIDS cases in San Francisco is low compared to those in cities without needle exchanges.
Opponents questioned the accuracy of those studies.
Sen. Tim Leslie, a Republican, said the measure sends a mixed message to young people about drug use and would encourage more people to use heroin than it would protect.
"I've got an awful lot of dead friends who were the victims of these needles," said Sen. Steve Peace, a Democrat. "We don't need the government getting into the business of being the supplier."
Sen. Richard Alarcon, D-Los Angeles, said needle exchanges reduce the littering of used needles that poses a threat to children.
"I still get thanks today from residents who no longer find needles behind their houses,' said Alarcon, a former city councilman.
Bernard Warren, manager of the Philadelphia HIV Commission, has resigned, according to a letter sent by the Commission's co-chairs to its members. The HIV Commission is the regional planning council mandated under Title I of the Ryan White CARE Act, and sets priorities for over $16 million in federal AIDS funds allocated to southeastern Pennsylvania and southern New Jersey.
Warren served in the position, which was responsible for the administration of the Commission's numerous committees, caucuses and planning efforts, for about two years. He succeeded Sonya Hunt-Gray, the first Commission manager, who resigned after only one year, and Christopher Bates, who served for several months as interim manager just prior to Warren's appointment.
Warren has recently come under severe criticism from Commission members for what they called poor management of the organization's finances and failure to follow the instructions of the Commission's leadership. He has also been criticized for maintaining his main residence in Virginia, which some Commission members said made it difficult for him to fulfill his work duties.
Sources said that Warren's resignation was requested by city officials after review of an evaluation of his performance conducted among Commission members.
Warren's resignation continues the rapid turnover in leadership positions in the region's AIDS planning and coordination efforts. With the appointment of a new interim manager, expected to occur in the next several weeks, the Commission will have had four managers since its founding four years ago, after health commissioner Estelle Richman relieved the Philadelphia AIDS Consortium of responsibility for Title I funds after several years of intense criticism of the Consortium's director.
The city's AIDS office has had eight directors in the past 12 years. The present "co-director" setup has the longest-surviving AIDS program directors in the history of the AIDS office, with Patricia Bass and Joseph Cronauer both now serving longer in their positions than any other director.
Dale Grundy and Michael Hinson, co-chairs of the HIV Commission, told Commission members in their letter that there will be a meeting on September 1st to discuss appointment of an interim administrator to replace Warren as the Commission re-organizes.
Chat room messages tied to syphilis outbreak
San Francisco public health officials have linked a syphilis outbreak in the city to an America Online chat room.
According to the experts, the outbreak was traced to at least seven men who met through the SFM4M (San Francisco Men for Men) chat room. Dr. Jeffrey D. Klausner, director of the San Francisco Department of Public Health's sexually transmitted diseases division, is launching an online awareness and education program in the chat room and through PlanetOut, the largest online service for gays and lesbians.
Statistics show that San Francisco saw a 33 percent decline in reported cases of syphilis during the first six months of this year compared to the first half of 1998. However, while health officials usually use "contact tracing" to identify and warn the sex partners of syphilis patients, the situation is difficult for patients who meet on the Internet because they generally only know each other by their screen names.
Following the outbreak, public health officials and online service providers are reviewing people's right to privacy online. As a matter of policy, AOL does not give out the names of subscribers unless given a court order or unless a physical threat is identified. Of the seven men involved in the outbreak, six met
their sexual partners through the same AOL chat room, while the seventh met his partners through an Internet relay chat room.
According to health officials, the seven men have reported a total of 99 sex partners in the last three months, and five of the seven men are infected with HIV. So far, one-third of the 99 sex partners have been tested for syphilis. Public health officials are concerned that chat rooms may provide a new venue for unsafe sex. Following the discovery of the outbreak, AOL put San Francisco public health officials in touch with Planet Out, which posted instant messages to people who used the chat room, trained 60 volunteers to visit the chat room and spread the word about the outbreak, and also posted information about the outbreak on its own Web site. (San Jose Mercury News/New York Times)
Radio host debates publishing names of PWAs
Russ Parr, host of a highly-popular national radio program broadcast on "urban contemporary" stations targeting the African American community, this week debated asking local health departments to publish lists of people infected with HIV in order to help people find out of their potential sex partners are infected.
The program was broadcast in Philadelphia over station Philly 103.9 on August 23rd.
Parr said that it was important to make the names of people with HIV available to the public so that "in case they have to use it to stop people from infecting each other." He said that the rapid spread of AIDS in the African American community called for urgent measures to stop the epidemic.
Contacted by fastfax, Parr said that he did not intend his comments to mean that he actually supported the publication of such lists, which would be illegal in all states. "I merely pose the question for debate," he said. What we do is play devils advocate to illicit a response from our listeners."
"I did not take a position one way or the other," he said.
However, a member of We The People who heard most of the program said that Parr was clearly more supportive of the pro-publication list than the anti-publication position.
Parr's co-host, Olivia Fox, raised issues related to protecting the confidentiality of people with HIV and the potential for discrimination against people whose names and HIV status became publicly available.
Callers to the program appeared to be evenly divided on the issue. Some pointed out that publishing lists of names of people with HIV would discourage those at risk from being tested, and others said that people themselves have the responsibility to ask each other about their status before having sex.
One caller pointed out that such a list would only be of limited value, since not everyone who is HIV+ has been tested and that some individuals would mistakenly assume that if a partner's name was not on the list, the person is guaranteed to not be infected. Another said that the only way to be sure of not getting infected was to use protection, such as condoms, in every sexual encounter.
But "people will lie to your face" and it's better to have some information than none at all, Parr said. Some callers said that while publishing names might be considered an extreme response, "there are people out there who are trying to infect you because they got it," according to one caller.
Several callers indicated that they thought that the names of people with HIV are already in the public domain, apparently confusing the lists maintained confidentially by local health departments for public lists.
An individual who described himself as an AIDS educator affiliated with the American Red Cross supported publishing a list with names which would be available to the public. He said that such lists were particularly important on college campuses.
Parr's email address is RussParr@UpToParr.com.
Gore locked out, DC protest set
Five activists were arrested in Washington on August 23rd after locking down the Old Executive Office Building a block from the White House, the site of the office of Vice President Al Gore, to protest elements of a U.S.-South Africa deal on pharmaceutical access which has not yet been made public.
The demonstration lasted for over an hour and firemen were called to cut the activists' chains. The protesters, members of the group AIDS Drugs for Africa, were handcuffed together with their hands inside pipes to make it difficult to remove them from the entrance of the building.
The proposed agreement would resolve a two-year dispute-during which the U.S. has brought trade sanctions against South Africa-over a 1997 South African law allowing the country to manufacture or import inexpensive versions of high-priced U.S.-patented drugs, powers which are fully legal under World Trade Organization rules. According to the activists, leaked information indicated that Gore -- the Chair of the U.S.-South Africa Binational Commission -- is insisting on an agreement which would only allow South Africa to use these cost-saving measures for drugs against AIDS, not for other diseases.
While the deal has not been signed, it is in the final stages of negotiation. The protesters charge that the Gore proposal would unfairly limit South Africa's right to produce and import important drugs at affordable prices, critical for a country with very restricted health care funds.
"Gore has already tried to save his reputation by asking Congress to spend $100 million on AIDS in Africa and other poor nations - none of which would even go for purchasing anti-HIV drugs," said protester Linda Lu. "This deal is a ruse as it is unlikely to pass Congress given budget caps and constraints, and is intended to appease human rights watchers while winking at pharmaceutical companies."
Since June, AIDS activists have been dogging Gore at campaign stops around the country. While Gore has repeatedly made public offers to meet with protesters, he has not responded to verbal and written requests for such a meeting.
According to the Wall Street Journal, talks to resolve the U.S.-South Africa dispute intensified soon after the first protests. The activists stated that leaked information in July had indicated that the U.S. was ready to offer South Africa a deal allowing that country to only do parallel importing (importation of inexpensive versions of drugs from sources other than the manufacturer). Then a later leak, expanding on a public statement made by Gore a week after the controversy ignited, indicated that the Administration was willing to allow compulsory licensing (domestic manufacture of patented drugs), but only if South Africa signed an agreement pledging to comply with international trade law.
As a result of these leaks, the Pharmaceutical Research and Manufacturers of America increased its lobbying and Gore recently reversed his position again, insisting on an agreement which would only allow South Africa to use the parallel importing and compulsory licensing for AIDS drugs.
Shortly after the second leak, an official of the U.S. Trade Representative's office, Joe Popovich, told a Congressional hearing that the administration is not willing to relax its trade policy to allow for compulsory licensing and parallel importing. He went on to say that because of the spread of HIV, the U.S. may be willing to relax the trade policy for HIV and AIDS drugs only.
Activists say the forthcoming deal implies that this concession will be granted only to South Africa.. In recent months, American trade officials have applied negative pressure to other developing nations attempting to access AIDS medications and other life-saving treatments under provisions of the World Trade Organization's TRIPS (Trade-Related Aspects of Intellectual Property) Agreement.
"The U.S. signed the TRIPS agreement, and now Gore is trying to limit the exercise of its provisions," said Marshal Weaver of AIDS Drugs for Africa. "South Africa has 3 million people with HIV, and infection rates are increasing exponentially. South Africa has the right to produce generic AIDS drugs and buy from generic manufacturers. The U.S. has curbed that right."
The United States, through Gore and US Trade Representative Charlene Barshefsky, has repeatedly claimed that the South African law violates intellectual property rights.
"No American official has been able to say exactly what part of international trade agreements are being violated by South Africa. Meanwhile, the US has not interfered with parallel importing of drugs by the UK, Canada and the Netherlands," said Anna Lynne of AIDS Drugs for Africa. "The TRIPS agreement states in clear language that patents for essential resources may be circumvented when it is in the public interest in the case of national emergency. And that same agreement in no way restricts parallel importation."
South Africa cannot afford AIDS treatments at name-brand prices. Generic versions of the same medications can be produced at about one-tenth of the cost. Pharmaceutical companies, whose lobbyists are close Gore associates and who donate generously to his campaign coffers, have sued South Africa to block the 1997 Medicines Law.
Activists from the group AIDS Drugs for Africa say they will escalate their protests until the United States stops pressuring developing nations to refrain from exercising their rights. In recent weeks, two open letters have been sent to the Vice President urging him to end U.S. government pressure on South Africa. One letter was signed by a global list of over 200 public health experts, AIDS leaders, human rights, religious, labor and development leaders, and concerned citizens; the other by South Africa's HIV/AIDS Treatment Action Campaign, a coalition that mounted two large demonstrations last month at U.S. consulates in that country. Gore's obstruction of South Africa's efforts has been criticized by such prominent personalities as civil rights leader Rev. Jesse Jackson, consumer advocate Ralph Nader and syndicated columnists Arianna Huffington, Molly Ivins and David Corn. And an editorial in The New York Times called on the administration to change its position on this issue.
The Times editorial argues that pharmaceutical companies concerned about profits have been the motivating force behind the American government's efforts to prevent developing nations from producing cheaper AIDS drugs. While drug makers claim the high prices and patent protection are needed to ensure the development of new drugs, the editors point out that many AIDS drugs, such as Norvir and ddI, were discovered by the National Institutes of Health, which may give the US government the right to allow the World Health Organization to license the manufacturing rights for the drugs to poorer nations. Even though some pharmaceutical companies, such as Bristol-Myers Squibb, have provided significant amounts of aid to help battle AIDS in developing nations, they still expect governments and health organizations to cover the costs of drugs to treat the disease. The editors also point out that drug makers would lose little profit by offering cheaper drugs to poorer nations because they represent such a small proportion of the market.
Meanwhile, ACT UP Philadelphia is considering organizing a demonstration in Washington sometime in October.