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Issue #164: February 15, 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 Archives of Internal Medicine, Reuters, Washington Post.Latinos hard hit by case management cuts; primary care also cut
TPAC dumps Unity, reallocates funding
PWAs often keep HIV status secret
HIV alone is disability: Justice Dept.
ActionAIDS sets February wellness series
Primary care also cut
Latinos hard hit by case management cuts
On the same day that the city's AIDS Activities Coordinating Office (AACO) confirmed that new medical advances were not reaching people with AIDS in the city's Puerto Rican and Latino communities, case management services at four agencies which serve that community suffered significant reductions in funding.According to information released by AACO in a "procurement announcement" showing its allocations of over $3 million for AIDS case management services, the agencies with the largest number of Latino clients -- Congreso de Latinos Unidos and St. Joseph's Hospital -- lost over $140,000 in funding, representing services to almost 200 people living with HIV/AIDS.
A third agency, Asociacion de Puertorriquenos en Marcha (APM), was "level" funded to support the one case manager at that agency. Episcopal Hospital, which also serves a largely Latino community, was also level funded for one half-time case management position.
ActionAIDS, the city's largest case management service, suffered $240,000 in cuts as well, bringing its annual allocation down to $900,000. It was unknown whether the funding reduction would impact on the organization's ability to keep open a North Philadelphia site located in the center of the city's Latino business district.
Last Monday, on the same day as the cuts were announced, officials from the city's surveillance office confirmed that while the number of deaths from AIDS has dropped significantly in the city -- 24% between 1996 and 1997 -- that good news has not yet reached the city's Puerto Rican and Latino populations, where deaths dropped only 1.6%.
One in every five AIDS case diagnosed in the past two years has occurred in the city's three primarily Latino zip codes (19122, 19133 and 19140), according to the latest AACO surveillance report. That percentage is double the "cumulative" number of Latinos with AIDS, which counts AIDS cases back to 1981, which sets the Latino proportion of AIDS cases at 10.3%.
The rapid increase in new AIDS cases in the Latino community over the past two years indicates that the number of Latinos living today with AIDS is significantly higher than in previous years, according to AACO's data. Most Latino AIDS activists say that these individuals are having a hard time finding experienced AIDS physicians in their communities, and are much less likely to be taking advantage of protease inhibitors and the other new AIDS treatments which have reduced death rates by almost 45% nationwide.
A higher proportion of Latino people with AIDS are also believed to be uninsured, according to the Delaware Valley Hospital Council. Lack of insurance is a primary reason why people seek AIDS case management services.
"I can't believe that anybody was thinking very clear when they made this decision," said Felipe Lopez, a Congreso client. "What do we got? Five or six case managers, the only ones who aren't afraid to come up here and do what we need them to do. Other neighborhoods have drop-in centers, case management agencies with lots of staff, special programs, but all we got is this five or six people. Most of the other places don't even have people who speak Spanish, and they won't come up to our neighborhood anyway. Now we're down to three or four. Where are people supposed to go?"
City officials have pointed to two factors for the reduction in case management funding made available this year.
The Philadelphia EMA HIV Commission, an appointed body which is mandated to recommend AIDS funding priorities for the city, significantly reduced the amount of money available for case management services. And the city plans to spend up to $260,000 this year on what it calls a "uniform access system," to help people connect to the case management system.
AACO hopes that by working directly with clients before they are assigned a case manager, the number of people who actually wind up in case management will be reduced, since many people only need transitional help in finding a particular service rather than an ongoing case management relationship.
"Maybe that will work for a lot of people," Lopez said when informed of the city's position. "But in the barrio there ain't a whole lot going on for people with AIDS. I'd be nowhere if I didn't have somebody to help me find what a need."
For many years, leading advocates among people with AIDS have been critical of the large amount of AIDS funding routinely dedicated to case management services. Most have argued that higher priority should be given to spending scarce AIDS dollars on primary medical care, especially as treatments have improved. Primary care funding is, however, also being reduced in Philadelphia this year.
Conare said that ActionAIDS will also likely have to reduce services to respond to the funding cut.
"We are now figuring out if and how we can serve more people with less funding," Kevin Conare, executive director of ActionAIDS, told fastfax. "The $900,000 for 1400-1600 consumers only allows $550-$650 of services per person requesting them. That is not doable."
Conare said that ActionAIDS will continue to expand third party billing and private funding to try to compensate for the cuts. "We will, nevertheless, need to reduce services beginning in March. I am afraid the waiting list will re-emerge and rapidly so."
Conare said that some at ActionAIDS feel the organization is being punished by AACO for being more successful than other agencies in raising private funds, rather than being supported by the city for being able to leverage its public funding to bring in new resources to the AIDS system.
ActionAIDS currently provides case management at 14 sites and had been expanding its neighborhood offices prior to the funding cut. Conare said that the agency projects it will serve over 1600 people with HIV/AIDS over the coming year with formal case management services.
Conare said that while funding for AIDS case management has been relatively "flat" for several years, most agencies, including his own, have stretched their dollars to serve more people as the epidemic has expanded.
"While funding has been flat, each year the number of people requesting and receiving services has increased. We expect the number to continue to increase to about 1,600 next year. To prepare for this, working groups of case managers and consumers have been working for six months on a flexible model of case management that would expand access to case management services to increasing numbers of people and would have eliminated the waiting list. This, of course, is also possible because of the many volunteer and consumer programs that the city does not pay for."
Conare continued his criticism of the city's diversion of over a quarter million dollars for the new access system, which he opposed in several public meetings over the past few months. "The amount of money going into the uniform access system diverts funds that could serve 300-500 people living with HIV/AIDS," he said. "While I support the city's need to assure consistency of service and information, I do not think this is the best way to do it. It adds another layer of bureaucracy and systems that consumers have to deal with. It does not reflect the realities of intake situations which often include crises in the middle of the night, emergency calls and walk-ins, and serving people where they are. It doesn't build the trust which is core to all effective services."
Conare said that ActionAIDS had suggested alternatives to the uniform access system, such as standardized screening forms and a centralized database at AACO. "The objective here was to make the uniform access system less costly but allow centralization and assurance that we the providers are doing our jobs."
He said he supports the need for quality assurance in AIDS case management services -- a major new priority for AACO's case management programs -- but is concerned that "the current model of uniform access assumes that we as providers are manipulating consumers. I also wonder if the members of the HIV commission were informed and understand that the amount they allocated for case management was reduced by the amounts the AACO staff allocated for the uniform access system."
Conare, as well as other case management providers, said that he is seeking information on how the case management proposals were rated and to confirm that the city's approach was based on objective criteria that held everyone to the same standard.
"At this point, I am not sure that it was," he said.
Primary care services cut
City officials have also announced that, because of the HIV Commission's priorities, they will also be reducing the amount of funding for AIDS primary care services. The new reduction comes hard on the heels of reductions in case management funding for most hospital and clinic-based programs last week. Particularly hard hit are city health centers and the Jonathan Lax Treatment Center, programs which serve uninsured people with HIV/AIDS, a main target for federal AIDS funds. The Lax Center lost almost a third of its funding, and city health centers were also said to have been cut back.
Most hospitals and clinics which receive city and Ryan White funding for primary care services will not serve people who don't have health insurance, except in emergency situations. Most refer their clients to city health centers and, since it opened last summer, the Lax Center, according to DVHC.
TPAC dumps Unity, reallocates funding
Saying that officials from Unity, Inc., have been unable to provide a response to consumer complaints about its AIDS case management program, the board of directors of the Philadelphia AIDS Consortium has canceled its contract with the agency and will redistribute its funding to Blacks Educating Blacks About Sexual Health Issues.Only about $9,000 remains on the contract for the remainder of the fiscal year.
TPAC had received a complaint from six people living with HIV/AIDS against Unity, which receives Title II funds to provide referrals to case management services to low-income and minority people with HIV/AIDS. The PWAs complained that Unity's Case Manager Assistant, Antwine Davis, had not participated in a support group where, they said, he was supposed to work with the members to help them get case management services.
Tyrone Smith, executive director of Unity, said that Unity's TPAC contract does not require Davis to attend the EIARC support group meetings, although he confirmed that Unity and EIARC had their own agreement that his services would be available to members of the group.
Last month, TPAC had informed Unity that it had fifteen days to submit a "corrective action plan" responding to the complaint, but said this week that none had been forthcoming.
TPAC executive director Larry Hochendoner has also announced that TPAC has awarded $16,113 from the defunct William J. Craig Memorial Foundation to Philadelphia FIGHT for AIDS case management services. Upon receiving the award, FIGHT announced that it had hired longtime PWA advocate and case manager Roy Hayes, a member of the board of We The People to the position. TPAC also awarded another $13,000 in case management funding to Philadelphia Community Health Alternatives (PCHA).
Additional new awards from TPAC announced this week include a $10,000 grant to the PCHA Food Bank and to the food bank operated by Chester County AIDS Support Services in Coatesville; $24,324 in emergency financial needs funding to Philadelphia FIGHT; $3,000 for emergency needs to Family Service Association of Bucks County; and $5,000 for the same purpose to Family and Community Service of Delaware County. A decision is still pending on the reallocation of $19,287 for in-home respite services, funding which was taken back from the Ecumenical Information AIDS Resource Center, which has been struggling over a tax delinquency to the federal government.
Liu steps down at ASIAC
Steven Louie, President of the Board of Directors of AIDS Services In Asian Communities (ASIAC) has announced that Richard C. Liu is stepping down as Executive Director on June 30th.Liu was one of the founders of ASIAC and became Executive Director in 1995.
"Our incredible growth and accomplishments as an organization are a result of Richard's leadership, passion, and selfless devotion to fighting the AIDS epidemic in our communities," said Louie. "We started ASIAC in Richard's living room and three years later we have become a multicultural, multi-service HIV/AIDS service agency that previously did not exist for Asians & Pacific Islanders in the Philadelphia area."
Liu had informed the Board of Directors of his intent to resign over a year ago so that he would be able to complete his graduate studies at Temple University for a Masters of Public Health degree. A search for the succeeding Executive Director is currently underway.
"Personally, I am proud of what we have been able to achieve for the organization and the community in just as little as three years," said Liu. "I have absolute faith that the organization will continue its record of excellence and commitment especially with its outstanding staff and dedicated Board of Directors."
Liu is a longtime AIDS activist who organized ASIAC in 1995 with a small and determined group of Asians & Pacific Islanders to respond to the growing AIDS epidemic in their communities. He is credited with developing a wide-number of innovative programs including Project ASSIST (Asian Specialized Services In Support & Treatment), GACHEP (Gay Asian Community Health Empowerment Project), the Asian/Pacific American AIDS Awareness Campaign, and other services.
PWAs often keep HIV status secret
Forty percent of HIV-positive individuals who are sexually active do not disclose their serostatus to all of their sexual partners, according to a report in the February 9th issue of the Archives of Internal Medicine.Dr. Michael Stein of the Brown University School of Medicine in Providence, Rhode Island, and colleagues conducted a survey among 203 HIV-positive men and women, of whom about two thirds were sexually active over the previous 6-month period. Dr. Stein's group found that out of "...the 40% who had not disclosed [their HIV serostatus], half had not disclosed to their one and only partner." Also, of those who did not disclose their serostatus, 57% did not always use condoms.
"The implication is that people may be putting themselves at risk for acquiring HIV without knowing it, and that medical- and health-care personnel may have great difficulty improving the situation," Dr. Stern commented in a Brown University press release. "The study suggests that the prevention message goes head-to-head with human nature, which is not to disclose to sexual partners, even if you've had one partner for a long time."
For 10 years the US Public Health Service Guidelines have recommended that HIV-positive individuals disclose their serostatus to their sexual partners. However, Dr. Stein's group points out that there are "powerful forces" at work that favor nondisclosure. Along with the psychological consequences of disclosure, which include the risk of rejection, HIV-positive individuals may also face social consequences, such as loss of sexual contacts and financial or healthcare support. The researchers also suggest that HIV-positive "...individuals may rationalize that their partners need to protect themselves."
Disclosure is a "multifaceted issue," Dr. Stern's group points out in the paper. "Guidelines are also needed for clinicians who wish to help HIV-infected patients disclose their serostatus and/or protect partner through behavior change." They suggest disclosure interventions could be implemented in clinics, primary care offices, and through special counseling programs.
HIV alone is disability: Justice Dept.
The U.S. Justice Department has urged the Supreme Court to rule that people who are infected with HIV, but who have not yet developed AIDS, should be protected by the Americans With Disabilities Act, particularly because the virus interferes with reproduction and pregnancy.The government position came in a brief filed on the side of a Maine woman whose dentist denied her routine treatment in his office because she had HIV. After dentist Randon Bragdon refused to fill a cavity for Sidney Abbott, she sued under the ADA, which protects people with disabilities from discrimination.
The law covers anyone who has "a physical or mental impairment that substantially limits one or more major life activities." Abbott argued that she was disabled because she was substantially limited in the "major life activity" of reproduction because an HIV-positive pregnant woman risks transmitting the virus to her child.
She also asserted that a person with the HIV infection, even without symptoms, should automatically be considered disabled. An appeals court ruled in her favor, but the Supreme Court recently agreed to hear Bragdon's challenge. The primary question for the high court is whether someone with HIV is substantially impaired.
"There can be little dispute with the clear medical evidence that infection with the HIV virus constitutes an 'impairment,' from the time the virus enters the body and begins to attack the blood and lymphatic systems," Solicitor General Seth Waxman asserted in the government's brief. Because the lower appeals court emphasized the virus's interference with reproduction, the government stressed that factor.
"The infection limits the conditions and manner under which [a woman] can become pregnant, because it makes unprotected intimate sexual relations life-threatening for her partner. The infection also would threaten the life of a child, since it can be passed from mother to child before or during birth and during breast feeding."
The Justice Department noted it has long considered HIV infection a disability not only because of its affect on reproduction but also "because the reactions of others to infected individuals cause such individuals to be treated as though they are disabled."
Bragdon's lawyer, John W. McCarthy, has argued that reproduction is not one of the "major life activities" envisioned by the Congress, such as walking or seeing. While the case of Bragdon v. Abbott is the first to test the scope of AIDS-related coverage under the 1990 ADA, the administration in other cases and actions has supported the idea that the anti-discrimination law protects people with HIV.
ActionAIDS sets February wellness series
ActionAIDS has announced its February series of workshops and classes which are part of its "Maintaining Wellness Series."This month's offerings include:
"Qi Gong Series" - "Qi Gong: any training or study dealing with Qi (energy) which takes time and effort to develop." How can you have more energy, shake off depression, and decrease some of those aches and pains? Qi Gong! This class is powerful! Try it out! Then tell us how you feel. Daily practice gives the best results.
Monday, February 2, 9, 16, 23*, @ 6:00 -- 8:00 P.M. ( * = see front desk for location)
Reiki Sharing: Come experience a Reiki Treatment! Reiki is a form of healing energy used to promote wellness. This "laying on of hands" technique will cause deep relaxation, decrease anxiety, pain, and stress.
Thursday, 12, 19, 1998 @ 6:00 p.m.- 7:30 p.m.
Meditation Practice: You can have more peace of mind, enhance your immune system, and nurture your creative self. Regular daily time outs of meditation and stretching have been proven to provide the above mentioned results.
Tuesday, 3, 10, 17, 1998 @ 5:30 - 7:30 p.m.
"Unlimited Power -- Tapes #13-17
How much does the way you think impact your life experience? A whole lot! This $200.00 tape series is available for your listening education free of charge. Relax, Listen and learn. Anthony Robbins is the best selling author of "Unlimited Power," and other success focused technology.
These educational forums are for anyone living with HIV or AIDS, and participants do not have to be an ActionAIDS client. All workshops are participatory with pre-registration required. For more information or to pre-register call Kevin D. Greene, ACT Program Coordinator, at (215)981-3330, 1216 Arch Street, 6th Floor, Philadelphia, PA 19107.
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