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Issue #159: January 11, 1998
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 Journal of Experimental Medicine, Morbidity and Mortality Weekly Report, Philadelphia Inquirer, Reuters. The Lancet.
Six PWAs file complaint on Unity
State auditor condemns Benova contract
CDC steps up name reporting effort
Saliva protein can block HIV growth
Second gene said to resist HIV
Six PWAs file complaint on Unity
Six people living with HIV/AIDS have filed a formal grievance with The Philadelphia AIDS Consortium (TPAC) accusing Unity Inc. of failing to provide contracted services and submitting fraudulent documentation.Unity is the city's oldest black gay AIDS service organization, formed in 1989. It is affiliated with the Greater Philadelphia Urban Affairs Coalition's Minority AIDS Project of Philadelphia, which provides fiscal management and other services to the organization.
The PWA's, members of a support group at the Ecumenical Information AIDS Resource Center (EIARC), a North Philadelphia church coalition, say that they recently learned that Unity has been receiving funding from TPAC since July of 1996 to provide extended hours case management services to the group.
Barry Duncan, a member of the support group who is also a member of the TPAC Board of Directors, said he learned of the contractual arrangement while reviewing documents at TPAC. He told fastfax "I was shocked. I have been attending that support group for about a year and never had contact with any member of Unity staff." Duncan went on to say that he returned to the group to ask if anyone was aware of the availability of this service, but no member of the group had knowledge of or had ever been provided the service.
Last year, Unity's contract with TPAC to provide case management services at EIARC was terminated by TPAC for the same issue that is now being raised in the consumer grievance. The funding was restored, however, when TPAC decided it had not given the group enough time to rectify the problem.
Appointed by the support group, Duncan then went to Tyrone Smith, executive director of Unity, to formally complain about the situation. "When I confronted him (Smith), he responded that there has been a member of the Unity staff providing the services," Duncan said. He went on to say that Smith produced documents describing services provided to the group. Duncan said he told Smith, "I don't care what your papers say, no one from your agency has been at that group."
Unsatisfied with Unity's response, the group members then decided to begin the grievance process with TPAC.
During the grievance proceedings the president of the support group, Anthony Salmon, told Larry Hochendoner, TPAC's Executive Director, that Unity's case management services at EIARC have been "non-existent." He stated that about two years ago a member of Unity's staff named Antoine was introduced to the group as a case manager trainee. He said that "this guy came to 3 or 4 groups, never said anything, and then we never saw him again."
Janine Scott, another member of the group and a member of the Philadelphia EMA HIV Commission, also complained that she has never met anyone from Unity at the group.
Two members of EIARC's staff, Tangy Taylor, who facilitated the group from December 1996 until June of 1997, and Iris Elijah, who has been facilitating the group since August, have both told fastfax that there has been no member of Unity staff present at the group.
Tyrone Smith told fastfax that "This was an EIARC support group and they never indicated to me that there was a problem. As far as I knew, my employee had been providing the service." Smith also stated that "pending the outcome of the investigation I will respond with appropriate disciplinary action."
TPAC's Hochendoner confirmed that Unity has been receiving funding in excess of $13,000 annually since July of 1996 to provide 20 hours per week of extended hours case management services and that the support group in question is part of what has been reported by Unity as being served. He said that he would review all the information and make a recommendation at the up-coming TPAC board meeting scheduled for Tuesday January 13th as to whether or not to continue the current contract.
State auditor condemns Benova contract
Pennsylvania auditor general Robert Casey Jr. has denounced the $12.8 million contract between the state Department of Public Welfare (DPW) and Benova, Inc., which is responsible for helping welfare recipients choose HMOs and doctors under the new Medicaid managed care plan, HealthChoices.Benova was severely criticized during the major sign-up period for HealthChoices in 1997 by AIDS advocates and other activists for providing inaccurate information on AIDS care available through the four HMOs participating in the HealthChoices program. The Philadelphia AIDS Consortium, the state-mandated AIDS planning council for the region affected by HealthChoices, demanded that DPW rescind its $12 million contract with Benova, saying it had failed.
Casey, the son of former governor Robert Casey Sr., who first proposed HealthChoices in 1994, said on January 8th that the Benova contract had been too costly and had failed to help many people on Medicaid.
According to Case, 56 percent of those responding to a satisfaction survey said that they had never talked to a Benova counselor when they were told they had to choose a Medicaid HMO to replace the former "fee for service" Medicaid plan. Casey also said that 61 percent of Medicaid recipients had "declined" to use Benova's services in its first fourteen months of operation.
The Philadelphia Inquirer quotes Benova spokesperson Lisa Adatto as defending Benova's performance, saying that it has eliminated marketing abuses that were common when HMOs themselves competed directly with Medicaid recipients to get them to join their plans. She also said that Benova's services were particularly needed in Pennsylvania, which unlike other states, has required the disabled to join HealthChoices. Most other states have kept disabled people in the "fee for service" Medicaid plans because the cost of their care is high and they are consider "vulnerable," she told the Inquirer.
Criticism by AIDS activists of Benova focused primarily on what they claimed was Benova's inability to help disabled people and people with AIDS, however.
Last year, Larry Hochendoner, executive director of TPAC, said that "the community is outraged by the gross mismanagement being allowed by the Commonwealth of Pennsylvania through this contract." Kiyoshi Kuromiya, a PWA and director of Critical Path AIDS Project, said that "the Commonwealth of Pennsylvania is simply wasting $12 million by continuing this contract with Benova, a contract that they are either incapable or unwilling to fulfill. This is gross fiscal mismanagement, bordering on fraud, and it must be corrected."
Roy Hayes, former chairperson of We The People and then co-chair of TPAC's consumer caucus of people living with AIDS, said that "Benova is entirely unprepared to deal with the realities of enrollment into a mandatory managed care system. Last year alone, according to the Associated Press, an advisory panel recommended suspension of Benova for poor performance in a similar project in Connecticut."
A major issue raised early last year was that Benova had no list of HIV specialists available to assist persons with HIV and AIDS in their enrollment. Instead, when a person living with HIV or AIDS contacted Benova, they were provided with telephone numbers for the four participating HMOs and asked to contact those organizations directly. "If the client is to call the HMO directly the should be no need for enrollment counselors, like those supposedly provided by Benova. This is a completely inadequate process," Hochendoner said.
That particular issue was resolved quickly when over 150 people with AIDS, led by former WTP director David Fair, took over two downtown welfare offices and negotiated the use of a doctors' list developed by the AIDS Law Project of Pennsylvania.
Over 17,000 people living with HIV/AIDS in the Philadelphia region are participants in the HealthChoices program, according to statistical projections.
CDC steps up name reporting effort
Less than four months after suggesting that efforts to count how many people are living with HIV infection should lead to the reporting of their names to the government, the U.S. Centers for Disease Control and Prevention has attacked the adequacy of programs that report the information without specific names. These programs use what are called "unique identifiers," which allow the government to count the numbers and demographic information on people with HIV but don't record their names or addresses, because of confidentiality concerns. Most states, including Pennsylvania, only require reporting of cases of diagnosed AIDS, although New Jersey has required HIV reporting for some time.Due to the concerns over name-based HIV surveillance systems, researchers from the Centers for Disease Control and Prevention have worked with two states to evaluate reporting systems that use a "unique identifier" (UI), instead of names.
However, CDC researchers now report that "...these UI systems provided less complete data and may not reduce confidentiality concerns."
Starting in 1994, Maryland and Texas have used a UI HIV reporting system, which relies primarily on social security numbers, to track cases of HIV infection, according to a report in the January 9th issue of Morbidity and Mortality Weekly Report, a CDC publication. A 3-year evaluation of the two systems, however, "...revealed several problems with these UI systems, including a high number of reports with incomplete codes (approximately 30-40%), low rates of completeness in reporting (approximately 25-50% complete), difficulty in conducting follow-up on specific cases, and the absence of behavioral risk data in this system."
CDC officials also suspect that the system may not protect patients' confidentiality any better than name-reporting systems. In order to provide follow-up information, healthcare providers need to use lists or other means to link the patients with the UI. "The UI approach complicates efforts to collect this information and increases the number of lists of HIV-infected persons that could be disclosed in a breach of confidentiality."
Right now, the state of Maryland is re-evaluating its UI HIV surveillance system, and Texas is investigating alternative HIV tracking systems, using feedback from community groups.
Only 3% to 26% of reports are incomplete in the 31 states where doctors use the patient's name to report data to the state, according to the CDC. The name is then removed before encrypted data are transmitted to the CDC.
One problem with UIs is that many medical files have incomplete information on the social security number, so doctors can't use the information in the UI. And doctors must maintain a system to match UI with patient information so they can fill in any missing information later on. According to the new report, only 44% of doctors in Maryland kept such logs. And in Texas, only 60% of UIs could be matched to a client record.
"HIV and AIDS surveillance data are needed to provide reliable population-based data to guide public health programs," according to the report.
The CDC is developing guidelines for states to "enhance security practices, standardize confidentiality laws and regulations, and promote uniform standards for HIV case surveillance systems," the report concluded.
Corson's Pharmacy to close
Corson's Pharmacy, the primary source of AIDS medications for many people living with HIV/AIDS for over a decade, will close by the end of January.Paul Corson and other staff from the pharmacy will continue to work, however, moving to the CVS pharmacy near 15th and Chestnut Streets.
Corson's recently moved its location from the corner of 15th and Spruce to a storefront across the street. However, the increasing price of drugs and lower insurance reimbursement rates have prevented the business from keeping up with competition from big drugstore chains, Corson said.
In an interview with Philadelphia Inquirer columnist Melissa Dribben, Corson said that he hoped to continue to serve his clients through the new CVS location. ""In a strange way, this move will free me up, " he said. "I'll bring the heart and CVS will bring the resources. As long as I can keep doing good things for people, I don't feel the loss."
Saliva protein can black HIV growth
A protein normally found in human saliva can block HIV from infecting human cells, according to a new report.A research team, based at New York Hospital-Cornell Medical Center, says that the finding could lead to the development of inhibitors that can prevent the transmission of HIV.
According to the report, published this month in the Journal of Experimental Medicine, a "sugar-protein" known as thrombospondin (TSP) occurs naturally in human saliva.
"TSP is effective against both laboratory-adapted strains of HIV-1 and HIV-1 patient isolates," said lead author Dr. Jeffrey Laurence. "It is active at physiologic concentrations. Saliva experiments indicate that TSP-1 is a major component of the natural HIV inhibitory capacity of saliva."
According to a statement from the university, TSP occurs in higher levels in the saliva of male animals, which may relate to the more frequent wounding of males.
The Cornell team found that while TSP is a large molecule, which could be an obstacle for its use in patients, smaller pieces of TSP were also able to block HIV from binding to receptors on immune cells, a crucial step in the initiation of HIV infection. These smaller peptides of TSP may be used to prevent sexual transmission of HIV, say the team.
"This is an exciting finding that is another step forward in our research efforts aimed at preventing AIDS transmission," said another member of the research team, Dr. Ralph Nachman, chairman of the hospital's Department of Medicine. "TSP derivatives could potentially be used vaginally, rectally and orally in condoms, foams, suppositories, mouthwashes and toothpastes, to inhibit transmission of the AIDS virus."
Second gene said to resist HIV
Some individuals carry a mutation in the CCR5 gene that appears to protect them from infection with HIV after they have had sexual contact with a partner who is HIV-positive, according to French researchers. The mutation prevents the formation of the CCR5 receptor molecule that facilitates HIV-1 activity.In a report published in The Lancet, French researchers describe the "m303" mutation, the second mutation found to confer protection from HIV infection. Previously, another mutation in the CCR5 receptor (the delta-32 base pair deletion) was found to prevent HIV infection by inhibiting the expression of a functional HIV-1 coreceptor. However, this mutation does not explain all types of HIV-1 resistance.
In the current study, Dr. Caroline Quillent of the Hopital St. Joseph in Paris and colleagues evaluated blood from 18 HIV-1 seronegative men who reported having unprotected sexual intercourse with an HIV-positive partner. Of the 18 subjects, Quillent's group found that one individual carried one delta-32 allele (form of a gene) and one m303 allele. They believe "...that the combination of these two distinct alterations to the CCR5 gene results in resistance to HIV-1 infection," according to the press release.
In addition, the results of "...family studies revealed that the m303 mutant allele was inherited as a single mendelian trait." Following genetic analysis of 209 healthy blood donors, they found that 3 individuals had copies of the gene mutation. Therefore, the researchers believe that "...the m303 mutant allele is not a sporadic point mutation in an isolated family but is also present in the general population."
This report of a second mutation in the CCR5 gene has implications for the transmission of HIV-1 infection, Dr. Peter Garred of Rigshospitalet in Copenhagen said. The Denmark-based researcher also suggests that, like the delta-32 allele, the m303 allele probably affects disease progression.
"Clearly, the HIV-host relationship is very complex and might include multiple resistance factors," he adds. These include factors such as immune responses, age, nutritional status and individual response to treatment, which "...may be skewed differently in the various (groups of patients)."
The establishment of a sample repository and international database for protective characteristics has been suggested -- and is a good idea, he continues. However, it may be difficult accomplish. In the meantime, the clinical importance of such protective factors still requires further study before they are used to assess the prognosis of individuals with HIV-1 infection.
BEBASHI moves to new offices
Blacks Educating Blacks About Sexual Health Issues (BEBASHI), has moved its case management and HIV prevention and testing programs from its former location at 13th and Locust Streets to new offices at 1217 Spring Garden Street.The new BEBASHI telephone numbers are 215-769-3561 (voice) and 215-769-3860 (fax).