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Issue #148: October 26, 1997
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 information in this issue include Business Wire, New York Times, United Press International.
In this issue:
State study says AIDS coalitions ignore minorities
CDC: no "immediate plans" to mandate reporting
Test developed to determine drug resistance
Scott leaves city ... with $59,000 pension
State study says AIDS coalitions ignore minorities
Many people of color in Pennsylvania "do not have good access to care, information, clinical trials or related support services" because of their exclusion from AIDS planning and funding for their organizations, according to a study released by the Pennsylvania Dept. of Health.The study was commissioned by the state's Bureau of HIV/AIDS in 1995 to assist its efforts to increase participation of people of color in AIDS systems of care in parts of the state outside Philadelphia. Conducted by the Coalition and Community Initiatives Project (CCIP) of Intercultural Family Services, it analyzed issues related to AIDS care for people of color in four Pennsylvania AIDS planning regions, not including Philadelphia.
Pennsylvania is divided into five such regions, each with its own planning coalition. In southeastern Pennsylvania, the planning coalition for the state is The Philadelphia AIDS Consortium (TPAC).
"While it is true that in many of the regions [studied] people of color populations were small in number, the percentages of infection to the total populations of infected persons were extremely high and the rates of infection were alarming," the study's authors wrote. "This devastating situation should have prompted greater involvement of people of color in the coalition process."
However, the study reports, "Despite the disproportionately high numbers of people of color AIDS cases and AIDS related deaths in Pennsylvania, people of color do not exercise appropriate levels of input nor control over HIV/AIDS policy formation and implementation pertaining to their communities." The authors said that "This lack of people of color involvement is directly proportional to the minimal amount of funding that people of color organizations receive for services and for improving their organizational capacities."
CCIP noted that in the state's north central AIDS planning region, African Americans comprise only 1.21% of the total population, but suffer from 28.4% of AIDS cases. Latinos in the region, while only 0.65% of the population, represent 15% of the total AIDS cases in the area.
Similar data was reported for the southwest and south central regions.
"The HIV needs of people of color communities are unique," the study said. "Therefore, they require unique responses which consider the attitudes and belief systems of these communities...The rates of infection in the people of color communities will continue unabated unless major changes are made in how the regional planning groups are organized and set funding priorities."
The study notes that in addition to resistance by AIDS policymakers in involving people of color in AIDS planning efforts, other factors have inhibited the development of a system of AIDS services sensitive to the needs of minority people. "While HIV/AIDS is on the minds of people of color, it is not always a priority concern due to competition from many other socio-economic and health problems, such as employment," the authors wrote. "People of color who are living with HIV/AIDS indicated that they feel isolated from their communities."
The report said that most of the leaders and institutions that people of color identified as important to their communities are "not significantly involved" in the regional AIDS planning coalitions mandated by the state.
The study said that AIDS planning coalitions throughout the state have provided little technical assistance or "core support" to "enhance the capacity of people of color organizations to advocate for people living with HIV/AIDS and to provide services for them."
"Many people of color who were initially interested and involved in the HIV/AIDS issue, and subsequently became involved in the coalition process, quit in frustration because their points of view and experience were not valued and rarely incorporated into major decisions," the study reports. "These people of color felt they were allowed only token involvement and there was no real support for strategies that they believed would work in their communities."
While Philadelphia's AIDS planning coalition was not included in the study, similar issues have been raised for many years about the Philadelphia AIDS Consortium's involvement of people of color in its planning and allocations decisions. These and other controversies have led to two major re-organizations of TPAC over the past two years. Under the latest re-organization, a new board of directors -- 70% of whom are people of color -- was elected last week. However, because of a state rule against including representatives of organizations which receive TPAC funds on its board, the latest TPAC re-organization has also been criticized for excluding most recognized AIDS leaders in the city's minority communities.
Critics have noted that the state only enforced its long-standing prohibition against the involvement of AIDS service providers on the TPAC board when TPAC made a commitment to greater minority representation, and allowed such conflicts of interest when most of the board members were white AIDS service providers.
The new state study recommends that other AIDS planning coalitions in Pennsylvania build stronger relationships within people of color communities "among leaders, agencies and institutions that people of color perceive as important in their communities." It calls for a restructuring of the composition of the state planning coalitions to become more reflective of communities of color, and for greater involvement of AIDS planning coalitions in projects that are "sponsored by people of color for people of color." It also calls for a greater investment in "developing the capacity of people of color providers to serve the needs of people of color communities."
Additionally, the study recommends that people of color themselves take more responsibility for enhancing concern about HIV/AIDS in their communities and become more "actively involved in advocating services for their communities. They must also hold current AIDS service organizations and traditional human service agencies/institutions accountable if they fail to serve the needs of people of color."
The report, entitled "The People of Color Communities and HIV/AIDS: Assessment of the General Community and the Needs of Persons Living with HIV/AIDS," was conducted by Jeremiah J. White, Evelyn Marcha-Hidalgo, and Elizabeth Minor, of Intercultural Family Services. White is the former president of the Philadelphia AIDS Consortium, and Minor a former executive director of the Ecumenical Information AIDS Resource Center in Philadelphia. Marcha-Hidalgo is presently executive director of Intercultural Family Services, Inc., a West Philadelphia group.
CDC: no "immediate plans" to mandate reporting
John W. Ward, M.D., the chief of HIV/AIDS surveillance for the U.S. Centers for Disease Control and Prevention (CDC), told The New York Times this week that the CDC has no "immediate plans" to require states and cities which receive its funding to keep records on individuals who test positive for HIV. But he did not rule out the possibility that the CDC will eventually institute such requirements, according to the Times report.Ward was among the authors of an article in a recent issue of the New England Journal of Medicine which proposes a national system of HIV reporting. The article argued that the advent of more promising treatments for HIV disease makes it imperative to better track HIV infections and link HIV+ people to care. Most surveillance efforts in place to date focus on reporting cases of diagnosed AIDS, and Ward said that monitoring based only on the more advanced cases ignores the value of early interventions based on the new treatments.
In Pennsylvania, formal reporting is only made on those officially diagnosed with AIDS. Those who test HIV+ but have not progressed to AIDS are not reported. Instead, various statistical formulas are used to project the numbers of HIV+ people. HIV reporting is legally mandated in New Jersey.
Critics of HIV reporting have noted that while the CDC is encouraging mandating the collecting of individual reports on HIV status, the federal government has not allocated additional funding to assure that those reported are linked to follow up medical services. While most AIDS advocates do not oppose the concept of HIV reporting, they have challenged the need for the maintenance of a government list that includes the names, addresses, and other information on those who test HIV+, instead calling for the use of coded reports to protect the anonymity of those seeking HIV testing. Most studies have indicated that a significant number of individuals at high risk of HIV infection will avoid getting tested if their name and personal data is reported to government officials.
In response to Ward's article, the American Civil Liberties Union said last week that it opposed mandatory name reporting of HIV infection, which it said would "drive infected people underground." It also supported a coded identification method. It criticized Ward's article for focusing on the "weaknesses of unique identifiers [codes] without focusing on the weaknesses of name reporting."
Regulations on what information is required in disease reports is traditionally a state matter, and the implementation of HIV reporting in Pennsylvania would require the adoption of state, and possibly local, new regulations. In Philadelphia, which operates under its own city charter, the city Board of Health has historically determined what diseases must be reported to the Health Department and the nature of such reports.
Because the CDC cannot itself mandate such reporting, it is believed that the agency, which funds most AIDS surveillance efforts, will begin to include such a requirement as a condition of receiving federal funds. This belief has been encouraged by a recent survey issued by the CDC to all fifty states and the six cities which receive its surveillance funding (including Philadelphia), asking them how they intend to implement HIV reporting and by what date.
It is not known whether the CDC plans to incorporate a reporting requirement in its funding contracts set to begin in January. Advocates have expressed the hope that Ward's statement that the CDC has no "immediate plans" to institute such a contract requirement means that the CDC will take more time to study the issue, and give more consideration to plans which develop reports based on unique codes for individuals testing HIV+ rather than names.
More IDUs ignoring HIV risk
A national drug study shows that fear of contracting HIV is declining among California's intravenous heroin users, who do not seem to be heeding public health warnings about sharing needles.The study concludes that the drug's popularity is rising among young and Hispanic users, and former users who have been lured back by the low price and high grade of heroin now available.
The Office of National Drug Control Policy's "National Trends in Drug Abuse" that tracks regional uses of heroin, marijuana, cocaine and emerging drugs like methamphetamine.
The report shows that most young heroin users are from inner city areas and may be using heroin because they feel it is more manageable than crack cocaine. Most California users are injecting rather than inhaling heroin, even in areas where high-purity heroin is available.
Drug treatment providers in the Southwest say almost 90 percent of their clients inject the drug and almost half also use marijuana.
Most of those seeking treatment for heroin addiction are over 30 years old, more than half are white and 73 percent are males. The study also concludes that more than 80 percent of those in drug rehabilitation programs in the Southwest have had prior treatment.
The study did not consider the effect of syringe exchange programs, which are based on the concept of helping addicts to avoid HIV infection even if they continue their drug use.
Test developed to determine drug resistance
HIV-positive people can get a new test at Stanford University Medical Center to determine whether the strain of virus in their blood is resistant to one or more antiviral drugs.The test, called "HIV antiviral resistance testing by genotyping," involves genetic analysis of the virus to detect mutations associated with drug resistance.
The results of the test can help physicians prescribe the most effective antiviral drug regimen for each patient, said Dr. Ann Warford, chief virologist at Stanford's Diagnostic Virology Laboratory.
Potent combinations of three or four different drugs are now the standard treatment for HIV infection. Physicians today choose from 11 different FDA-approved drugs to combat the virus. A typical drug regimen includes two drugs designed to block HIV's reverse transcriptase (RT) enzyme and one drug that counters the virus' protease enzyme.
Combinations of RT inhibitors and protease inhibitors have proved highly effective at suppressing HIV replication and improving clinical outcomes. Nevertheless, drug-resistant strains of the virus undermine the clinical progress of many HIV-infected patients. Early identification of drug resistance allows physicians to make timely changes in the drug regimen before a patient's condition deteriorates.
Antiviral resistance testing should be used in combination with tests that measure the amount of virus in a person's bloodstream, or viral load, Warford said. When patients begin drug therapy, their viral load frequently drops from hundreds of thousands of copies of virus per milliliter of blood to fewer than 50 copies per milliliter. After several months of suppression, however, the viral load may suddenly start to climb -- a trend that often signals the emergence of a drug-resistant strain.
"The primary reason for drug failure is drug resistance due to mutations in the reverse transcriptase or protease genes," said Dr. Robert Shafer, a clinical assistant professor of medicine (infectious diseases) at the Stanford University School of Medicine.
Other factors also can cause drug treatments to lose effectiveness, including a patient's failure to stick to the drug regimen (which may involve taking 20 pills every day) or poor absorption of one or more drugs into the bloodstream. Testing for resistance mutations can help clinicians distinguish drug resistance from other causes of increasing viral load, Shafer said.
The drug resistance pattern revealed by the test also may suggest specific changes that can be made in the patient's drug regimen to improve its effectiveness.
Antiviral resistance testing is also valuable for determining the baseline genetic characteristics of a patient's virus before treatment begins. Approximately 10 to 15 percent of newly infected individuals have acquired a strain of HIV that is already resistant to an antiviral drug, usually AZT, Shafer noted.
"If a person has been infected with a resistant strain, that would certainly influence the choice of initial therapy," he said.
Considering the high cost of antiviral drug therapy (up to $15,000 per year for each drug), resistance testing to identify drugs that are unlikely to help a particular patient is a cost-effective tool in addition to being clinically useful, Shafer said.
Shafer maintains a large computer database linking HIV gene sequences to the treatment history of each patient from whom the sequences were obtained and to other technical data. Eventually, he plans to link the gene sequences to data on the drug susceptibility of each viral strain and the clinical outcomes of the patients.
For more information the test, which must be ordered by a physician, call Diagnostic Virology Laboratory, Stanford University Hospital, at 650/723-5706 to obtain a requisition/order form.
Scott leaves city ... with $59,000 pension
Richard Scott, the former city AIDS office director who was found liable in a federal race discrimination suit earlier this year, has taken an "extended leave of absence" from the city health department from which he is not expected to return.A federal jury found that Scott, who headed the city's AIDS Activities Coordinating Office (AACO) in 1993 and 1994, had discriminated against four African American AACO employees during a reorganization he implemented in 1994. He is also involved in a second federal civil rights lawsuit against the city, which charges that former health commissioner Robert Ross violated civil service rules in appointing Scott to the AACO position over Cecil Hankins, an African American who had also applied for the job.
Sources said that Scott left the health department after significant pressure from members of City Council, who have threatened to pass a city ordinance requiring the termination of city employees found guilty of race bias.
Scott was severely criticized by minority community leaders during his 21-month tenure at AACO, during which he de-funded most minority AIDS education organizations and was said to have made disparaging comments about minority AIDS leaders in public forums. He was removed from the AACO post in late 1994, after a document which identified the HIV status of community volunteers on an AACO committee was accidently released to the public. After his departure from AACO, Scott was appointed chief of staff to health commission Estelle Richman, although he formally retained the civil service title of AACO Director and continued to receive his $74,000 annual salary.
As an employee with over 20 years of service to the city (thirteen of which he served as an officer of a city workers union), Scott will be entitled to an annual pension of about $59,000 for the rest of his life once he reaches the age of 55 in about six years.
Earlier, the city decided to drop its appeal of the federal race-discrimination verdict, finally closing a case that has cost taxpayers $21,0OO in damages and $690,000 in legal fees.
"I continue to believe that Richard did not engage in discrimination," Richman said recently in an interview with the Philadelphia Daily News. "I respect the jury system. I happen to be one of those who believe O.J. Simpson was innocent. I happened to be on the right side of that one. In this case, I disagree."
In rejecting a city motion to vacate the verdict, U.S. District Judge Louis C. Bechtle, said comments by Scott had "reflected a disrespectful and demeaning attitude toward African-Americans."
Commenting on the city's decision not to appeal the Scott verdict, Clifford Boardman, the attorney for the plaintiffs in the race bias case, said, "I think that the citizens of Philadelphia won, and the city...has accepted what the people's verdict is," Boardman said. "The jury and judge in the case long recognized that Richard Scott threw out every black person in senior staff at AACO when the disease was moving mostly into the black community."
Boardman said Richman should have fired Scott to make it clear the city will not tolerate discrimination. Richman said her refusal to fire Scott did not represent toleration of racial bias.
"If the jury had come back with heavy fines and imposed a heavy penalty, showing they felt very strongly about this, my feeling might be different," Richman said. She said she supported Scott's decision to leave, however.
"I just think now that Richard and the Health Department are compromised...I told him I think this is a good decision for both of us."
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