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Issue #135: July 27, 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 Annals of Internal Medicine, Philadelphia Gay News, Reuters, United Press International.
Rendell policy will delay AIDS housing
NIH issues new Crixivan warnings
AIDS is leading killer of homeless 25-44 y.o.
MDs debate offering protease to homeless
HIV Commission hires longtime PWA advocate
PEHAAP leadership in controversy
Rendell policy will delay AIDS housing
A new policy announced by the Rendell Administration on July 10th requires the Mayor's specific approval for "any new proposals for special needs housing," including housing for people living with AIDS, prior to the award of any city funding for such projects.Prior to the announcement, review panels appointed by the Office of Housing and Community Development, the Health Department and other city agencies could give the final word on whether or not a special needs project could be built.
The mayor's announcement was made through a memorandum from his new chief of staff, Gregory S. Rost, to various city commissioners and department heads.
The new policy is expected to strengthen complaints from neighborhood groups and residents aimed at preventing the construction of new special needs facilities and residences in their neighborhoods, and make it more difficult for projects to obtain public funding or overcome zoning and licensing requirements. Rost's memorandum did not indicate what standards the Mayor would apply in determining whether or not to approve a project, nor did it outline any procedures for how such approval can be obtained.
However, the memorandum says that city officials seeking to support special needs housing programs "must obtain written approval from me [Rost] before issuing any commitment to fund or otherwise support development and/or operating expenses associated with any special needs housing, group home and/or residential treatment facility or related facilities."
The policy arises from years of complaints from some neighborhood groups that their communities were being targeted for group homes and other publicly-funded residential facilities for people with mental illness and developmental disabilities, people with AIDS, people in recovery, and other "special needs." Rendell's policy does not address complaints about locating low-income housing, which have also been raised by community groups.
Two city-funded AIDS housing projects are currently pending final approval, including a small shelter for homeless women living with AIDS in South Philadelphia, and a personal care/hospice facility which has been in the works to replace the now-defunct personal care home formerly operated by Betak in Mt. Airy.
Other pending housing projects, including two being constructed by We The People in West Philadelphia and the city's Hunting Park section, may not be affected by the new requirements since they have already been approved and have not faced community opposition.
The new policy represents a significant shift in Rendell's public posture related to the construction of special needs housing. At the opening of the new Calcutta House in North Philadelphia last year, Rendell criticized community leaders who express support for needy people but oppose them in their own neighborhoods, referring to what has been called the "NIMBY" syndrome -- an acronym for "Not In My Back Yard." Rendell added another "syndrome" he said has gotten in the way of building residential programs for people with AIDS, which he called "NIMTO" -- for "Not In My Term of Office."
However, in a series of community meetings with neighborhood development groups over the past year, Rendell has heard loud complaints from community leaders that they are not adequately informed of the development of new residential programs in their neighborhoods and have little power to address problems which may result once the programs are built. Community representatives have said that many group homes and residential facilities bring down their own property values, especially those which convert former family residences to institutional uses. They've also complained of increased drug use and criminal activity around some group homes. Complaints about AIDS residences have usually involved fears of inadequate medical waste disposal, as well as expressions of AIDS- and homophobia.
Few AIDS housing programs have met with much resistance in the city since they began being constructed in the mid-1980s. No community opposition was expressed with the creation of three group homes by Philadelphia Community Health Alternatives in 1985-86, or when the homes were expanded by Marian Homes in 1988. We The People's three housing programs -- in center city, Hunting Park and West Philadelphia -- have received strong community support, although the West Philadelphia site was chosen only after the original location, in South Philadelphia, was opposed by the South Of South Neighbors Association (SOSNA). SOSNA later assisted We The People in identifying other potential sites for the project, however.
Other projects, built by Resources for Human Development in Germantown, Calcutta House in North and West Philadelphia, Asociacion de Puertorriquenos en Marcha in North Philadelphia, and the Friends Rehabilitation Center and the Circle of Care in North Philadelphia, have met with little or no community opposition.
The most controversial AIDS housing programs in the Philadelphia area have been the city's former AIDS nursing home/personal care facility, Betak, in West Mt. Airy, which was delayed for almost four years by neighborhood opposition. Bucks Villa, a new group home in New Hope, Bucks County, also needed to overcome several legal and zoning challenges before its formal opening this summer.
We The People also faced a strong neighborhood opposition to A New Way of Life, a ten-bed recovery house in South Philadelphia in 1996, although zoning approval was ultimately achieved after various commitments were made to neighbors. That project, which was not specifically designed for people with AIDS, was "spun off" into a separate, independent corporation by We The People in July, 1996.
The Housing Committee of the Philadelphia HIV Commission is preparing a letter to the Mayor asking that he exempt planned AIDS housing projects from the new policy.
NIH issues new Crixivan warnings
National Institutes of Health researchers announced this month that the protease inhibitor indinavir (Crixivan) may leave crystals in a patient's urine, causing back and flank pain as well as frequent, painful urination. Misdiagnosis of the side effects of the drug could lead to unnecessary doses of antibiotics, said Dr. Jeffrey Kopp, the senior researcher on the NIH project.The side effects were present in 14 out of 240 patients studied, while seven others developed kidney stones, an already known side effect. Crixivan is the most widely prescribed protease inhibitor, and Kopp noted it is still "an excellent drug with a favorable side-effect to benefit ratio." Merck, the maker of the drug, noted that the label for indinavir already warns of possible kidney and urinary tract problems and that drinking lots of fluids can ease the symptoms. Merck spokesman Michael Seggeg pointed out that company monitoring has shown that only 4-5 percent of people on the drug have exhibited these symptoms.
AIDS is leading killer of homeless 25-44 y.o.
Researchers studying mortality data in Boston have found that homeless people die considerably younger than other people and that the causes for these early deaths are often preventable -- AIDS, homicides, and accidents.Dr. Stephen W. Hwang and colleagues at the Harvard School of Public Health evaluated mortality data on more than 17,000 homeless people who had been seen at a health program for the homeless in Boston between 1988 and 1993.
Whereas most Americans can expect to live into their 70s, the average age of death among the homeless population seen at the clinic was 47 years. Murder was a leading cause of death among homeless people 18 to 24 years old.
But among those 25 to 44 years old, AIDS was the most common killer. Homeless men in this age group were twice as likely as other men to die of AIDS. The AIDS death rate for women was even greater: five times that of non-homeless women. Hwang says the toll from AIDS in the homeless is much greater than seen in studies conducted several years ago. "That tells us that AIDS has burned a path across the homeless population in the past 5 to 10 years," he says.
A study conducted for an AIDS housing needs assessment for the Philadelphia Office of Housing and Community Development found that homeless persons have ten times the risk of having AIDS as does the general population in Philadelphia. The study also concluded that Philadelphians with AIDS are three times as likely to have been homeless than the general population.
Heart disease was also a common cause of death among the 25- to 44-year-old homeless people -- more than three times the rate that would be expected in that group. Hwang says he thinks that's because homeless people tend to have a higher incidence of coronary risk factors. "They tend to smoke more, to have poorly controlled diabetes and high blood pressure, and often they have poor diets which may lead to increases in cholesterol." Among homeless people 45 to 64 years old, heart disease and cancer took the most lives, he said.
Hwang, who is now working as an epidemiologist at St. Michael's Hospital in Toronto, stressed that the way his study was carried out might have affected the results. For one thing, only homeless people who had contact with the health care program were included in the study. Mortality figures for other homeless people might be different.
Secondly, since the study covered all people who had been seen by the health care program -- even those seen only once -- there's no way to know if the people studied were chronically homeless or perhaps homeless only at the time of a single visit with doctors.
In any case, say the researchers, the results of the study underscore the importance of improving health care for the homeless population. They say AIDS prevention and treatment should be given special attention in this group. Also, improving alcohol and drug-treatment programs might help reduce mortality from cirrhosis and drug overdose -- two common causes of death in the group, they say.
Finally, since deaths in the group tend to occur more often during the first week of each month -- coinciding with when people receive disability checks -- it might be wise to develop programs that carefully monitor the way disability funds are distributed, the researchers suggest.
MDs debate offering protease to homeless
Stabilizing the lives of homeless people with HIV as far as possible is a priority before offering complex antiretroviral therapy, in the experience of a group AIDS prevention researchers. Dr. Andrew R. Moss of the University of California and colleagues there and elsewhere in San Francisco discuss the ethical implications of providing protease inhibitor therapy, or not, for the homeless with HIV, in the July 2 issue of the Journal of the American Medical Association.Adherence to long-term, complex regimens is a concern in the homeless, especially when nonadherence can lead to the emergence of resistant HIV strains, the doctors said. Nonetheless, Dr. Moss points out that "...there is an obligation to make standard therapy available to this underserved and largely minority population."
With such considerations in mind, the California team makes several recommendations:
First and foremost, the stabilization of living conditions should precede the prescription of protease inhibitors. Such efforts should include providing access to regular medical care and mental health facilities, stable housing and drug treatment referrals, where applicable. "If system barriers are removed and if physicians are working to stabilize their patients' lives, adherence will improve," the researchers suggest.
Next, stable patients with CD4 cell counts indicating progression to AIDS should be offered PCP prophylaxis, and those with a positive PPD skin test should be prescribed isoniazid. If patients can comply with these regimens, protease inhibitor therapy can be considered.
Patients who remain unstable should be told about the risks of nonadherence to protease inhibitor therapy and offered treatment with two reverse transcriptase inhibitors. However, if the patient is competent and insists on protease inhibitors, "...we believe there is an obligation to prescribe."
In all patients, especially those living under less stable conditions, the emergence of resistant HIV strains should be closely monitored, according to the San Francisco investigators. Further, "If health status and survival are not improved or if transmission of resistant HIV is seen at the population level, then the use of these therapies must be reevaluated."
HIV Commission hires longtime PWA advocate
Bryan C. Cole-Smith, the new HIV Commission "consumer coordinator," first became aware of AIDS fourteen years ago, while he was living in St. Louis."We had a group of guys who played volleyball every Sunday," Cole-Smith told fastfax. There were two wonderful men, Mike and Joe, who were the backbone of the group. Mike became very sick and within a year, passed away. Joe also became ill and passed away within a year of Mike's death. Add to that, a mother who heard of the "gay cancer" and wanted to make sure her son knew everything to stay healthy, and you have the beginnings of an AIDS Activist."
After a long search process, Cole-Smith, who had to resign from his position as co-chair of the Commission's Care Committee to take the post, was appointed early this month as the first coordinator of support for members of the HIV Commission who are people living with HIV/AIDS or their caregivers. A similar position has formerly been in place at the Philadelphia AIDS Consortium, which preceded the Commission as the planning body for AIDS funding in the region, but was eliminated when TPAC was relieved of the responsibility of managing Title I federal AIDS funding for the region.
In his new role, Cole-Smith will be responsible for helping people living with HIV/AIDS and other consumers understand the nature of community planning, overcome obstacles to participation, and assure that consumers have input into Commission decisions and priorities.
Cole-Smith, a gay man with a fondness for leather, told fastfax that "As a leatherman, I began to see the effects HIV was having on my leather family. A group of us began doing safer sex workshops within the leather/SM/fetish context. I then won two leather titles, which allowed me a forum to speak about living with HIV. I traveled extensively throughout the Midwest, talking with people about living openly with HIV/AIDS. I did outreach to the women's community, the Deaf community, and the Transgendered community."
Cole-Smith later moved to New Jersey to be with his last partner, Bill Cole, who passed away last year. "This also allowed me to attend Temple University where I obtained my M.Ed. in Psychoeducational Processes. Bill was very actively involved with TPAC, the South Jersey Council on AIDS, and the AIDS Coalition of Southern New Jersey. So it didn't take him long to get me involved here."
Cole-Smith noted that his involvement with the HIV Commission began when he and his lover noticed that no one living with HIV disease who resided in New Jersey had been appointed to the first group of Commission members. "Since we both had submitted applications, we were concerned that there was no openly HIV+ person selected from New Jersey. Bill proceeded to write letters to Ms. Richman. I, on the other hand, called, and threatened, and screamed, and called again, and demanded to know why we were not selected. Then I received a letter stating that I was a new Commissioner. A saying about the squeaky wheel comes to mind."
"Through my work as a Commissioner, serving on several committees, and finally as a co-chair of the Care Committee, I began to learn about the many aspects of planning and priority setting on an EMA-wide basis," Cole-Smith said. "This ties into what I feel is one of the major obstacles in obtaining effective participation by consumers in the planning process. Many people I have talked with have stated that they do not know or understand the complexities of these processes. Well, I didn't either at first. But, by reading, asking questions, attending training, and just paying attention, it all started to make sense. Anyone can learn about this and be a dynamic and effective participant. But, they have to get over the fear and look at this as an opportunity to contribute something back to the community."
Cole-Smith also criticized an HIV/AIDS service system that is based on what he called a situation of "learned helplessness." For so many years, we were subjected to providers, legislators, and society as a whole "helping us." It hasn't been until the last four or five years that I have seen efforts made to help us help ourselves. It's time to stop all the pity parties, and begin living again. One way to do that is to understand and impact the system which so many of us rely on for our day to day existence."
Cole-Smith that he hopes through his efforts to involve more PWAs in the Commission's planning and priority-setting processes. "What do I hope to accomplish in this position? Seeing at least one new consumer face at every single meeting regarding Title I planning. I want to see individuals willing to commit to giving something back. I want individuals to recognize that no matter what their background, educational level, sex, orientation, ethnicity, gender, etc. they can impact and contribute to the decision making process. I want the consumers to make my job obsolete."
PEHAAP leadership in controversy
fastfax has learned that at least two members of the Philadelphia EMA HIV/AIDS African American Planning Group (PEHAAP), a controversial group established by West Philadelphia State Sen. Hardy Williams to control AIDS funding in minority communities, were not even aware that they were being listed as part of the group.Tyrone Smith, executive director of Unity, Inc., and T. Lamonte McKinnon, a Unity staff member, said they are identified as members of PEHAAP on a list distributed by the group in late May but that they had not agreed to serve on the group. Both told fastfax that they were opposed to a plan, negotiated by Williams with city health commissioner Estelle Richman, to divert $200,000 of the health departments AIDS resources to establish the group as the "identified planning vehicle for the African American community" and to give the group supervision over the Minority AIDS Project of Philadelphia.
McKinnon said that he had filled out an "application form" to be part of PEHAAP some months ago, long before he was aware of the group's agenda. He said that he has not been participating in PEHAAP meeting and objects to being publicly associated with the group.
Smith, in a letter to health commissioner Richman, criticized the "bold and intrusive manner" in which PEHAAP has sought to obtain funding for its activities. He told Richman that there has been "deliberate deception on several levels, orchestrated and carried out by a noted director. Because of this individual's involvement and lack of integrity, there are organizations that will no longer participate with the Minority AIDS Project."
Smith said that PEHAAP's "unscrupulous behavior has undermined and greatly jeopardized the very existence" of African American AIDS services. He said that "The AIDS community will not stand idly by and allow this theft of funds nor accept this unproved leadership. The notion that this organization should play a critical role in policy making is categorically and morally wrong."
Richman "suspended" the arrangement after complaints from African American people with HIV/AIDS and AIDS service providers.
Most of those serving on the PEHAAP leadership group are recognized allies or staff members associated with Williams. They include Lynette Brown, Barbara Chavous, and Lee Tolbert, all of West Philadelphia, who are longtime political allies of Williams and frequently obtain city contracts through his political intervention; Alan G. Fastman, chief of staff of Williams' Pennsylvania Senate office; and Christina Williams, a member of Williams' church.
Steve Pina, executive director of One Day At A Time, who also serves on the group, told the Philadelphia Gay News two weeks ago that PEHAAP had a 35-member board, of which one-fourth were people living with HIV/AIDS. According to the May list, however, 23 people served on the committee, only three of whom are publicly identified as people with AIDS -- and one of which is McKinnon, who has since said he does not support the group's efforts.
The only people living with HIV/AIDS who have routinely participated in the group's meetings are members of One Day At A Time. Several ODAAT members have complained to We The People that they are forced to participate in the group or risk losing their right to live in ODAAT's recovery houses.
In a letter to ODAAT president Rev. Henry Wells on July 15th, We The People executive director Curtis Osborne asked Wells to "apologize" to people with HIV/AIDS for what he called Pina's efforts to "manipulate and threaten people with AIDS who reside in ODAAT houses, forcing them to participate in committees and coalitions without giving them any training or understanding of the issues, but demanding their support with the implied threat of losing their homes and their sustenance unless they did his bidding."
Williams and Chavous forcibly prevented people with AIDS from attending their publicly-announced organizational meeting for PEHAAP several months ago. Their action was defended by Pina and Gerald Wright, associate director of the Minority AIDS Project, who said that they would be allowed to participate once the basic organizational structure of PEHAAP had been established.
PEHAAP has since routinely advertised its meetings, but has been unwilling to consider leadership or structural changes which would limit Williams' influence over the group. An ODAAT source said that Williams has opposed allowing control over PEHAAP for African American PWAs, saying it would make the group into an "animal farm."
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