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Issue #220: March 12, 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 Associated Press, Journal of AIDS and Human Retrovirology, Reuters, Science.
In This Issue:
New WTP housing program opens May 1st
Commission chairs question director
Study links genes, AIDS progression
Better viral load test approved
Costs of drugs strain state ADAPs
City prisoners to be discharged with drug supply
Glaxo awards $20,000 grant to WTP
We The People's 25-unit apartment building for low-income people with HIV/AIDS will open May 1st. The project, which has taken four years to complete, offers one-bedroom apartment units to people with HIV/AIDS whose annual income is $19,000 or less.
The newly-renovated apartment building is located on Marlton Street near 42nd and Girard in West Philadelphia's Parkside section. Marlton Court, as the project is named, is the first AIDS housing program in the region that does not require a resident to have a rental assistance voucher.
Monthly rent for the apartments will be $200, plus utilities. The project is not a supported living arrangement, but residents will have access to services from We The People and other AIDS service organizations.
Marlton Court is part of a two-pronged housing development program begun by We The People in 1994. The first project, Lombard Street Community, opened two years ago and serves low-income people with support service needs. It is located adjacent to We The People's Life Center at the corner of Broad and Lombard Streets in center city Philadelphia.
Marlton Court has been built in partnership with Pennrose Properties, a leading regional developer of low-income housing.
WTP executive director Rob Capone said that WTP will begin accepting applications for Marlton Court at 10:00 a.m. on Thursday, April 1st. Prospective applicants need to provide proof of income and HIV status. He said that applications will be processed on a first-come, first-served basis, and that once the 25 units are filled, other applications will be honored as vacancies become available.
An open house will be scheduled in late April or early May, he said.
We The People constructed Marlton Court in part to respond to the needs of people with HIV disease who are not sick enough to qualify for AIDS rental assistance programs. It aims to provide low-cost housing to low-income people with HIV/AIDS rather than requiring them to participate in sometimes intrusive voucher programs.
We The People also participated in the construction of High Street Manor, a Germantown apartment building, but transferred ownership of the property to Resources for Human Development in 1994, while maintaining responsibility for helping High Street residents obtain social and medical services.
Commission chairs question director
The "Body of Co-Chairs," the executive committee of the Philadelphia HIV Commission, severely questioned Commission Director Bernard Warren about his handling of the Commission's budget and various internal policy matters at its meeting of March 11th.
Warren, who has been director of the Commission for the past year, is responsible for managing the Commission's planning and priority-setting processes, which determine how over $16 million in Ryan White CARE Act Title I funds are allocated for AIDS services every year.
While having a full-time job in Philadelphia, Warren remains a resident of Alexandria, Virginia. According to Commission sources, city officials offered him reimbursement for his travel expenses to and from Philadelphia for the first six months of his employment, after which he was supposed to relocate to the city. He has not done so, and some Commission members have said that he continued to charge travel expenses, as well as hotel lodging costs, to the Commission after the six-month period ended.
At the meeting, Commission co-chairs Dale Grundy and Michael Hinson revealed that they had asked the directors of the city's AIDS Activities Coordinating Office (AACO) to reimburse the Commission for Warren's travel and lodging expenses, since the Commission leadership had not been prior informed of the city's arrangement with him and they believed, shouldn't be held responsible for it.
Warren has declined to provide information on the costs he has incurred for travel and lodging since his employment to Commission members or in response to media requests.
In another travel-related matter, the co-chairs announced that they had instructed Warren to cancel any future attendance at conferences for staff and Commission members until a new policy on conference travel was reviewed by the Commission's Consumer Caucus and the Body of Co-Chairs, and approved by the full Commission. However, Warren has, according to Grundy and Hinson, has ignored their instructions and made arrangements to send three Commission staff members, including himself, as well as one consumer board member to the San Francisco AIDS Update Conference in April. They also questioned why Warren had approved an eight-day trip for a conference that lasts only three or four days.
The San Francisco meeting is taking place in the same week as a federal AIDS prevention conference in Harrisburg, which many Commission staff and members will also be attending. Hinson noted that if Warren and the other staff he wants to send to California and Harrisburg go forward with their plans, virtually none of the Commission's planning staff and much of the Commission leadership will be available for a full week in the middle of the Commission's 1999 priority-setting process.
The cost of sending Philadelphians involved with the HIV Commission and the Philadelphia AIDS Consortium, which handles Title II funds, to last year's international AIDS conference in Europe led to hot controversy, as some organizations noted that more money was spent on travel and hotel costs for the conference than they get to provide AIDS services. Some Commission members have complained that Warren chooses consumers to attend conferences in order to influence them in the role as his supervisors, and have noted that unauthorized stipends have been paid to some Commission consumers for undefined services and no formal contracts.
Marvin Crawford, president of the We The People board of directors, said at a Commission meeting late last year that he had received over $1,000 in stipend payments for the Commission, but had never been told why he was being paid.
Warren was also criticized for the handling of the Commission's Nominating Committee, which is responsible for recruiting new members to the Commission and its various committees. The co-chairs said they had instructed Warren to remove Bryan Cole-Smith, the Commission's Consumer Coordinator, from the role of staffing the Nominating Committee, after complaints that Cole-Smith may have tried to use his influence to remove certain Commission staff members, including Roy Hayes, a long-time consumer activist who is prominent in the city's African American community and who serves as a member of We The People's board.
Warren countered that he is still not comfortable with working with the Nominating Committee on his own, and that "Bryan will assist me until I am comfortable with the process."
The nominating process has also been criticized for failing to meet the Commission's stated goals with regard to minority and consumer representation. Although the Commission is charged with assuring at least 50% consumer representation on the full Commission and its committees, only 32% of the members of the Community Planning Group are consumers, as is only 37% of its Housing Committee. While Commission committees are supposed to have a membership "reflecting the demographics of the epidemic," only 32% of the CPG and 32% of the Housing Committee are African American, even though African Americans comprise almost 65% of the region's HIV+ population.
In another contentious issue, Warren finally presented to the co-chairs a list of consultants he has hired since beginning his duties a year ago. Some members of the Body of Co-Chairs noted payments to several present or former Commission members for tasks that they believed were the responsibility of the Commission's planning staff, including payments to Rick Britt, then co-chair of the Care Committee, and Guy Weston, formerly a Commission member, for work on the Commission's annual Priorities Report, which has not been finished even though it was supposed to be adopted last fall. Warren's list also showed payments of $3,000 to Kwame Banks for an "evaluation of the priority setting process," which is also the responsibility of staff health planners, and of $750 to Whitney Hemlich for painting and photographs.
None of the stipends paid to Commission members were included on Warren's list.
Rob Capone, Executive Director of We The People and a member of the Commission who has expressed concerns over these issues for over a year, said that "It's ironic that while AACO has been bearing down on community-based organizations for what they have described as 'accountability' for over two years, it seems that they have let the Commission staff do virtually whatever it wants with the scarce resources available to provide the planning for this region. I'm happy to see that the Commission leadership has finally taken the necessary steps to assure us that 'accountability' is a two way street."
Study links genes, AIDS progression
Inherited genes may explain why some people infected with HIV quickly develop AIDS while others with the virus live for years in relatively good health, scientists have reported.
And African Americans appear to be more likely to have the inherited genes than whites, they said.
In a study published in the journal Science, researchers at the National Cancer Institute say differences in the inherited pattern of what are called HLA Class I genes appear to determine who gets sickest soonest after an HIV infection.
The discovery, based on a genetic analysis of 500 HIV patients, has no immediate medical application, but it increases understanding of how the virus attacks the body, said Mary Carrington, lead author of the study. That knowledge could lead to better drugs or vaccines against the virus, she said.
Carrington said there are three different HLA Class I genes, identified as A, B and C. People inherit two copies of each of the genes. This means they can have as many as six unique combinations or as few as three.
"The more different forms of this gene a person has, the more resistant that individual is to progression of the disease," said Carrington.
An HIV infection in people with non-matching HLA Class I gene pairs, for instance, may not progress to AIDS for six to 12 years, the researchers found. Those who inherited matched pairs of the genes tend to develop AIDS in three years or less.
HLA Class I genes are part of the immune system. Their job is to identify cells that are infected with virus and to leave a signal molecule on the surface of the infected cell. Another part of the immune system, the cytotoxic T-cell, will kill cells marked by the signal molecule, thereby blocking the spread of the virus.
HIV is constantly changing and eventually will find a form that is not recognized by any of the HLA Class I genes, Carrington said. If an individual has a variety of HLA genes, it takes longer for the HIV to develop changes not recognized by the immune system. For this reason, she said, a person with a variety of gene forms will avoid AIDS longer.
Carrington said about 40 percent of the people examined in the study had a gene pattern that gave a slow disease progress, while about 45 percent had a gene combination that led to rapid progression.
Each of the three HLA genes has many alleles, or forms, that differ only slightly from each other. For instance, there are about 200 different forms of the HLA-B gene, Carrington said.
The researchers found that people with paired copies of two of the gene forms, identified as B35 and Cw04, tended to progress to AIDS most rapidly.
Carrington said 8 percent to 9 percent of the tested patients had the B35 form. About 10 percent of the white patients had the Cw04 form, she said, but it was present in about 25 percent of the black patients.
Carrington's work is similar to a report that about 20 percent of African-Americans carry a genetic mutation that puts them at six times greater risk than whites of being infected with HIV once they're exposed to the disease, which New York scientists reported at the 6th Conference on Retroviruses and Opportunistic Infections.
Researchers reporting at the conference also found disturbing levels of drug-resistant viruses being passed from person to person worldwide, and differences in survival rates within the United States based on access to health insurance.
The gene mutation was announced by Dr. Leon Kostrikis and John Moore of the Aaron Diamond AIDS Research Center in Manhattan. In an interview, Moore said the defect is related to a cell receptor - called ccR5 - that's used as an entryway for HIV.
Although some Caucasians have mutations that protect them from infection by eliminating their ccR5 receptors, the beneficial mutation has not been seen in people of African descent. Sadly, Moore said, the reverse has now been determined: About 20 percent of African-descendant Americans carry the 356-T mutation, which somehow (the biological details are yet undetermined) manipulates their ccR5 receptors in a way that makes them highly vulnerable to HIV.
Preliminary results of further study indicate that the mutation is also widespread in West Africa, the researchers said.
Kostrikis found the 356-T mutation through genetic analysis of 1,500 babies born to HIV-positive mothers: About 250 of the babies were also HIV-positive. And the majority of those who were infected were black and had the 356-T mutation.
Better viral load test approved
The U.S. Food and Drug Administration has approved the Roche Diagnostics Amplicor HIV-1 Monitor UltraSensitive Method, a blood test which quantifies HIV viral load to as low as 50 copies. The previous FDA-approved test, the Amplicor HIV-1 Monitor(TM), had a limit of quantification of 400 copies.
The UltraSensitive test has already been widely used in research, and often in patient care as well. The new approval should help in getting the cost reimbursed by public or private health insurance.
Roche will include the new test in its Amplicor Patient Assistance Program, which "provides free testing to patients who have a demonstrated financial need." Patients, physicians, and testing laboratories can obtain information about this program by calling 1-888-TEST-PCR (1-888-837-8727).
Costs of drugs strain state ADAPs
Despite the fact that AIDS Drug Assistance Programs (ADAPs) such as Pennsylvania's Special Pharmaceuticals Benefits Program (SPBP) have increased their client base by 22%, restricted access and unmet needs persist in some states, according to a report released by the Henry J. Kaiser Family Foundation.
The results of the survey indicate, that between July 1997 and June 1998, "national ADAP program expenditures grew by 37%, an increase driven by per client expenditures and a rise in the number of clients served," the Kaiser press release stated. The higher costs of combination antiretroviral drug regimens, the current standard of care, largely account for the increased expenditures.
The survey also found that as of October 1998, a total of "46 ADAPs provided coverage for all approved antiretroviral treatments and 22 states reported adding antiretroviral drugs to their ADAP formularies since July of 1997."
However, budget shortages persist. Eleven states have placed caps on program enrollment, and the number of individuals on the waiting lists exceeds 2,500. Six states have also "capped or restricted access to protease inhibitors or other antiretrovirals and two states continue to not provide any protease inhibitors due to budget constraints."
In addition, 14 states reported that they expect to exhaust their current ADAP operating budget prior to March 31st of this year, the end of the Ryan White CARE Act fiscal year.
For states that reported client and expenditure data, the ADAP costs per client rose from $665 per month in July 1997 to $747 per month in June 1998. Over the same time period, the costs for antiretroviral drugs rose by 54%. However, national ADAP costs of drugs to prevent or treat opportunistic infections declined by 31%.
"The good news is that the new antiretrovirals extend the life and health of people with HIV," Tim Westmoreland of the Kaiser Foundation commented. However, he noted, not only are these drugs more expensive, "treatment guidelines indicate that more people should take them earlier in their illness."
City prisoners to be discharged with drug supply
AIDS Activities Coordinating Office (AACO) co-director Joe Cronauer has announced that prisoners being released from the city penal system who have HIV disease will be provided between a 5- and 30-day supply of their HIV medication upon their release.
The new commitment arises out of long negotiations between the city prison system and AACO, which has no formal authority over prison health care.
State prisoners are guaranteed a 30-day supply of their prescriptions medications when they are discharged. Cronauer announced last month that AACO had set up a system which guarantees access to both medications and primary medical care at the city's district health centers within 72 hours of a prisoner's release.
AACO's support for ex-offenders with HIV has increased in recent months, after being stagnant for many years. AACO now supports a full-time social worker at the prisons to help prisoners plan for their release, two case managers at ActionAIDS to help them once they are released, and a case manager at BEBASHI for ex-offenders being released from state prisons and returning to Philadelphia.
Because prisoners are not entitled to Medicaid coverage while they are incarcerated, many have had difficulty linking to doctors or getting prescription medications when they are released. AACO allocated several million dollars in Ryan White CARE Act Title I funding to the city's health centers, as well as community sites like the Lax Center and Hahnemann's Partnership Clinic, to provide care from experienced HIV physicians to uninsured people.
Glaxo awards $20,000 grant to WTP
We The People has been awarded a $20,000 grant from Glaxo Wellcome Inc. to link disenfranchised people living with HIV to needed medical services.
Glaxo representatives will present a check for the grant to members of We The People on Thursday, March 18, 1999 at 11:00 a.m. at We The People's Life Center, 425 South Broad Street in Philadelphia.
"We The People's Life Center is a direct link to the region's lowest-income people with HIV, and the people who have the most difficulty getting the quality medical care that today is giving more and more people with HIV a hopeful future," said Rob Capone, We The People's executive director. "Glaxo's grant will support our efforts to keep our center open 24 hours a day, 7 days a week, 365 days a year, to make sure that people with HIV always have someone there when they need help."
Glaxo's funding will support general operations of the Life Center, as well as We The People's Positive Voices Outreach Team, which goes out into the neighborhoods to help people with HIV/AIDS link to AIDS-related medical and social services.
We The People is among 23 Glaxo Wellcome grant recipients, and one of only two in the Philadelphia region. The Delaware HIV Consortium, a planning group, received $5,000. The grants have been awarded to assist non-profit organizations with innovative programs that focus on the health care needs of disenfranchised people living with HIV. The 23 grants support initiatives such as case management and street outreach services, educational materials for mobile health clinics, peer treatment workshops, and treatment adherence programs.
"Homelessness, mental illness and substance abuse present a variety of challenges that negatively impact an individual's ability to manage HIV disease," said Dean Mitchell, general manager of specialty divisions at Glaxo Wellcome. "It is of the utmost importance that these populations have access to the programs and services they need to help combat this disease. We are confident that these grants will help to ensure that disenfranchised HIV-positive persons are linked to these necessary services."
Glaxo Wellcome is an industry leader in HIV research and offers patients and physicians a broad portfolio of both investigational and commercially available anti-HIV therapies.
WTP Board soliciting new members
The We The People Board of Directors will host the semi-annual We The People membership meeting on Thursday, April 15, 1999, at St. Mary's Church, 1831 Bainbridge Street, beginning with dinner at 5:30 p.m.
At this meeting, members will elect several new members to the Board of Directors. Nominations are being accepted until March 31st, and women are especially encouraged to apply. To be considered for board membership, submit a resume or letter to WTP by that date, addressed to We The People, Nominations Committee, 425 South Broad Street, Philadelphia, PA 19147-1126. Fax nominations can be made to 215-545-8437.
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