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Issue #139: August 24, 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 the Philadelphia Inquirer.
Commission divides again on funding; PWAs plan grievance
Richman may fund PEHAAP despite pledge
State clarifies limits on TPAC participation
Commission divides again on funding; PWAs plan grievance
A preliminary decision to give higher priority to protecting currently funded AIDS service organizations -- and limiting the use of AIDS funding to meet unmet needs defined by a recent survey of over 1000 people living with HIV disease in the Philadelphia region -- has again divided the 60-member Philadelphia HIV Commission, as it debates what to do with almost $25 million in federal, state and local AIDS funds in 1998.The Care Committee of the Commission, which is charged with developing instructions to the city and the Philadelphia AIDS Consortium on how it allocates the public funding, passed a resolution last week which requires that funding for unmet needs of people living with HIV/AIDS identified through its year-long assessment process, only be addressed if the federal government offers additional money to the region as part of the Ryan White CARE Act next year. The Committee has held numerous meetings, focus groups, and the survey in its effort to better direct AIDS resources to the real needs of people living with HIV disease.
Instead, the Committee ruled that all organizations which currently receive public funding for AIDS services be guaranteed that they would keep their contracts regardless of the results of the needs assessment process, and in addition, receive a 3% "cost of living" increase so that staff salaries -- which in most groups have remained unchanged for several years -- could be improved.
The federal Health Resources and Services Administration (HRSA), which administers federal funding for AIDS care services, severely criticized a similar provision adopted by the local Ryan White Planning Council in 1994, saying that a decision to automatically maintain current funding levels required a clear justification and a description of how it improved the system's capacity to meet unmet needs of PWAs in the region. The HRSA comments in 1994, focusing on the CARE Act's emphasize on meeting "emergency" aspects of the epidemic, also criticized the dominance of AIDS service organizations over the planning process, and forced the adoption of much stricter conflict of interest rules for council participants.
The Care Committee recommendation, which still faces a tough battle for adoption by the full HIV Commission, was also challenged because individuals who were not appointed to the Care Committee were permitted to vote on the resolution. The HIV Commission's by-laws clearly require that only Care Committee members appointed by the Health Commissioner be permitted to vote on priority and allocation recommendations. After the vote, the full HIV Commission authorized voting by non-committee members despite the by-laws provision, leading to concerns that some groups will try to "pack" the Care Committee process to influence its outcomes.
After adoption of the resolution, proposed by Family Planning Council director Dorothy Mann, the Care Committee limited its efforts to developing priorities only for any new money which may, or may not, become available through Ryan White in the coming year, which it hopes will be at least $1.3 million.
Mann said at the Care Committee meeting that the provision was justified because employees in AIDS service organizations had been unable to get raises for several years, and that no change in the current array of AIDS services was justified until the Commission completed a quality assurance and evaluation process on AIDS services.
That process, which only recently began, involves developing "quality assurance measures" for some -- but not all -- AIDS service areas, and is not expected to produce useful information for at least two years. It was unclear why the Care Committee did not consider information gleaned from quarterly reports submitted by all AIDS service organizations to the city's AIDS Activities Coordinating Office (AACO), which routinely require a description of unmet needs of clients served by the organization.
Richard Gliniak, a consumer member of the Care Committee, objected to the Care Committee action at this week's HIV Commission meeting, saying that it ignored the information collected in the recent consumer survey and the results of community needs assessments conducted by the Commission over the past year at a cost of $100,000. He said that several consumer members of the committee may file a formal grievance to overturn should it be adopted by the full Commission, because of the apparent by-laws violation in its adoption and its impact on the mandated role of the Commission to revise priorities as needed.
James McCann, the HRSA project officer for the Philadelphia region, told a Commission caucus earlier this year that HRSA expected Ryan White priorities to be applied to all funding each year, even if it meant changes in the structure of the AIDS service system.
A survey of over 1000 people living with HIV disease, conducted for the Commission by Basile Ryan, Inc., a Washington consultant firm, reported that while the overwhelming majority of PWAs who participate in the AIDS service system are able to obtain ambulatory care, case management and other services, 1 in 4 of them are unable to obtain the housing they need, and 3 in 10 need emergency financial help they can't get. These results confirmed earlier indications from the 1996 AIDS Housing Needs Assessment, conducted by the Philadelphia Office of Housing and Community Development, and a 2000-participant survey conducted by The Philadelphia AIDS Consortium in 1994.
An early review of case management data collected by the Philadelphia AIDS Consortium in 1993 -- the last time that case management data was included in the planning process -- also identified housing-related services as the most frequently requested help from AIDS case management services in the region.
Another consumer survey, of 765 people living with HIV/AIDS in the Philadelphia region and conducted as part of the OHCD needs assessment, found that 41% of the respondents spend more than half of their monthly income on rent -- and 13% were spending over 70% of their income on rent. The report also found that 44% of PWAs had been homeless at some point over the past year, and that over half (52%) of the PWAs participating in the survey had incomes of less than $6,000 per year, mostly drawn from welfare and SSI benefits.
Among African Americans, according to the survey, 63% reported incomes of $6,000 or less, while 27% of whites earned at that level. Among Latinos, 50% earned less than $6,000 per year.
The report also found that 44% of PWAs responding to the survey had either lived in a homeless shelter over the prior year, or had lived "night-to-night" with friends or family. Both categories are considered "homeless" under federal and local definitions. Respondents to the survey were "17 times more likely than individuals in the general population to be currently homeless," the report said. Race was also found play a role in homelessness among PWAs, according to the report, especially among those who are very ill. "Among severely symptomatic respondents, African Americans are seven times more likely to be homeless than Caucasians," the analysis reported.
The Commission's survey also showed that almost 40% of those surveyed are not using protease inhibitors, the drugs which have been credited with extending the lives of thousands of people with AIDS.
Most respondents (68%) to the Commission's listed AIDS case management as a primary need, while only 9% said they were not using a case manager.
Under the Care Committee provision, responding to unmet needs will only occur if HRSA awards new money to the region next year.
HIV Commission Housing Committee representatives told the Commission that the Housing Committee had not been permitted to participate in the priority-setting process, even though housing-related needs has topped the list of consumer preferences in all surveys and studies that have been conducted by the AIDS service system since Ryan White funding began in 1991. David Fair, acting co-chair of the committee, said that a decision to apply needs assessment data only to funding which may not even be awarded ignored the clearly defined needs of PWAs and the value of the data collected by the Commission over the past year, as well as the work of the Housing Committee.
Fair also noted that the Care Committee only reviewed one of three parts of the OHCD housing needs assessment conducted last year, which was presented by a consultant without the Housing Committee's participation. He said that the needs assessment recommended that higher priority be given in directing some Ryan White funding to providing supportive services to residents of AIDS housing projects and in helping PWAs avert homelessness and dependence on public housing programs.
Wesley Iglesia, a community member who attended the Commission meeting last week and spoke during its public comment period, told Commission members that it appeared that "people who receive the money are dictating how the money is allocated."
The Care Committee is expected to finalize its recommendations at a meeting on August 22nd, and the full Commission will debate them at a special meeting on September 3rd.
Richman may fund PEHAAP despite pledge
Health Commissioner Estelle Richman has formally assured the Philadelphia HIV Commission that she does not intend to provide funding to the Philadelphia EMA HIV African American Planning Group (PEHAAP) to perform planning activities, but indicated that she does intend to provide funding to the organization for other purposes.Last month, a secret plan by Richman to divert $200,000 in AIDS funding to PEHAAP to support its claim to be the "recognized vehicle for AIDS planning activities in the African American community" came under fire from African American people living with HIV/AIDS and African American AIDS service providers. They claimed that PEHAAP was a "scam" aimed at giving control over AIDS services in the African American community to cronies of State Sen. Hardy Williams. Richman "suspended" the decision after a protest last month, and said she would "investigate" the situation before taking further action.
The Commissioner has not formally responded to a request by We The People and other African American AIDS service organizations to meet with them to discuss the matter before making any allocation to PEHAAP. It is unclear whether any other "investigation" of the PEHAAP controversy has taken place as promised last month.
Ernest Jones, executive director of the Greater Philadelphia Urban Affairs Coalition, told the HIV Commission this week that while the Commissioner would not support "planning activities" within the purview of the Commission, she had agreed to support other activities of PEHAAP. He declined to identify how the new funding for PEHAAP -- which has never been involved in AIDS services in the past -- would be used.
In an earlier letter to Jones, Richman had authorized PEHAAP to use any new funding to manage the Minority AIDS Project of Philadelphia, which distributes over $3 million in AIDS funding to minority organizations in the region. Most of the organizations participating in MAPP have said they will pull out of the network if PEHAAP is given control of or influence over the group.
PEHAAP earned the anger of the PWA community earlier this year, when it decided to prevent people with HIV/AIDS from participating in its processes and limited participation only to individuals selected by Sen. Williams. More recently, PEHAAP has claimed the participation of several PWAs in its meetings, although several have said that their names are listed as part of PEHAAP even though they do not participate in the group. The remaining PWAs claimed as part of PEHAAP are all residents of One Day At A Time, the only African American AIDS organization which has supported the group, and which has been criticized widely for requiring residents to participate out of fear that they would lose the housing and recovery services of the organization.
At its meeting this week, the full HIV Commission adopted a resolution asking Richman to clarify her intentions and recommending that the Commissioner not fund PEHAAP for any purpose, given its lack of support from the overwhelming majority of people living with HIV/AIDS and service providers in the African American community and elsewhere.
State clarifies limits on TPAC participation
State AIDS official Bonnie Jo Brautigam has announced, in a July 24th letter to We The People executive director Curtis Osborne, that the reorganization of the region's Title II Ryan White planning council, which allocates over $5 million in state and federal AIDS funding in southeastern Pennsylvania, will not prevent the participation of volunteers at AIDS service organizations, as originally required under a state contract.The Philadelphia AIDS Consortium (TPAC), which since 1991 has served as the Title II council, was ordered by the state earlier this year to eliminate board members who served as staff, board members, or volunteers of organizations which receive TPAC funds, because of the potential for conflicts of interest.
TPAC executive director Larry Hochendoner and We The People had severely criticized the prohibition of volunteers on the TPAC board, noting that its impact would be to prevent most knowledgeable consumers from obtaining a decisionmaking role in the planning process as required under the Ryan White CARE Act.
TPAC has been subjected to intense criticism since its founding in 1990 for allowing representatives of agencies which receive TPAC funding to participate in decisions related to funding priorities and allocations. The controversy resulted in TPAC losing control of over $13 million in other federal AIDS funding last year, and the establishment of the Philadelphia EMA HIV Commission by city health commissioner Estelle Richman.
In 1996, TPAC removed most of its previous board members and established a new board with significantly higher participation of people living with HIV/AIDS and people of color. However, state official Bonnie Jo Brautigan told the TPAC board that those changes were not enough.
"You've had four years to do this," Brautigan told TPAC several months ago. "It's time to put up or shut up."
Brautigan has threatened to replace TPAC as the state planning coalition for southeastern Pennsylvania unless the new rules are implemented this year. The board resolution adopting the changes says they will take effect in October.
Criticism of the TPAC decision has been strongest among representatives of communities of color and people living with HIV/AIDS, who have noted that the state tolerated the alleged conflicts of interest for years when the board was dominated by white AIDS service providers, and has only now acted when the group is mostly people of color and people with HIV.
In her July 24th letter, Brautigam denied that the state was racially motivated in forcing the changes at TPAC, saying that "since my arrival in 1993, the Division [of HIV/AIDS] has bene consistently addressing conflicts of interest" in each of the state's planning coalitions. She said, however, that only two of the state coalitions have actually fulfilled the requirement prohibiting provider representatives from serving on their boards, while others "are in various stages of addressing this issue."
TPAC executive director Larry Hochendoner, in a letter to Brautigan in June, questioned the need for the broad application of the new rules.
"We believe that it is not in the best interest of the organization or the region to eliminate people living with HIV and AIDS who through their own personal dedication, volunteer their time to the HIV/AIDS service delivery system, from membership on the Consortium's Board of Directors," Hochendoner wrote. "The input provided to the planning coalition by persons living with HIV and AIDS is one that the Commonwealth would be risking by eliminating volunteers who are HIV-positive."
In a letter to We The People executive director Curtis Osborne, Brautigam said that volunteers would be permitted to serve on TPAC's boards and committees, although they would have to reveal their associations with funded organizations through the same process as others on the committees. She also reiterated her threat that if TPAC does not accede to the state's requirements, the state will discontinue its role as the Title II planning coalition.
Brautigam claimed that the elimination of board members and staff of AIDS service organizations "whether or not they are people living with HIV" is "consistent with HRSA's position on the issue of conflict of interest of people living with HIV."
Brautigam did not cite the source of her claim, which many TPAC members have said is a misinterpretation of HRSA's position. HRSA, which stands for the Health Resources and Services Administration, administers the Title II program for the federal government. WTP's Osborne said he would ask Brautigam to quote the specific HRSA provisions which she says support her action, since none of the documents HRSA has provided to planning council members to date indicate that provider participation is prohibited.
Brautigam did not respond to concerns raised by We The People and other minority AIDS service organizations that the new requirements will effectively prevent leaders of minority communities combating AIDS from decisionmaking roles in the planning process.
Osborne, on behalf of the members of We The People, told Brautigam last month that "we are disturbed that the recent success of representatives of communities of color in finally obtaining appropriate representation at TPAC may be undermined by the implementation of these new requirements, without a clear strategy which is sensitive to the critical need for both adequate and appropriate representation of our communities."
People with HIV/AIDS and AIDS advocates in minority communities have said that TPAC may be forced to appoint board members who have little knowledge of the AIDS epidemic or the needs of people with AIDS under the new arrangement. "It was okay for white AIDS providers to represent the community's interest for seven years, but now they say that minority providers and PWAs won't be able to do it," one consumer board member told fastfax. "It's just a way to keep us from having the influence the Ryan White law says we're supposed to have," said the board member, who asked to remain anonymous.
In a letter to Brautigam, Osborne said that "It is also disturbing that, despite almost six years of complaints to the Commonwealth that TPAC decisions were often based on racial bias and provider conflicts of interest, the Commonwealth has only now decided to move on these questions, when, for the first time, TPAC's board of directors is mostly comprised of people of color and people living with HIV/AIDS. Again, while we appreciate your intentions, it appears from the historical record that the Commonwealth was willing to exempt TPAC from these requirements while the majority of its board was white, and white providers, but now moves aggressively only when the racial and ethnic composition is actually more reflective of the epidemic as it really is."
Osborne said that "the total elimination of African American, Latino and Asian provider representatives from the TPAC board -- few if any of whom have been involved in the crises and corruption of the past -- will only result in the appointment of community representatives with little or no experience in AIDS services for our communities. The Commonwealth may be content with having people with the right colors on the TPAC board; our concern, and one which we will assert in every forum available to us, is that the people sitting in these important seats be both knowledgeable and accountable to the communities whose interests they are charged to protect."
Brautigam offered to arrange a conference call with We The People and others concerned with the impact of the TPAC changes. Osborne said that he would ask for that meeting in the near future.
HealthChoices deadline passes
Pennsylvania Medicaid officials kept to the August 20th final enrollment deadline for HealthChoices -- the state's mandatory Medicaid managed care program -- even though thousands of Medicaid recipients in the Philadelphia area have yet to sign up for one of the four HMOs taking part in the program.Medicaid beneficiaries, including people with HIV/AIDS and other disabilities, who did not select a plan that date will be randomly assigned one by the state. By the end of last week, 30,000 of the 520,000 Philadelphia-area Medicaid recipients in HealthChoices had not selected an HMO.
Automatic-assignment recipients will not be required to begin receiving care under HealthChoices until October 1 and will have until September 24 to switch from the plan to which they have been assigned to another HealthChoices HMO. According to state Welfare Secretary Feather Houstoun, quoted in the Philadelphia Inquirer, the "one-month extension was aimed at giving a particularly vulnerable segment of the Medicaid population -- the disabled, the chronically ill, children in foster care and others -- more time to find an HMO and a primary-care doctor that meet their special needs."
The state has consistently refused to adopt a standard of AIDS care or identify which doctors in which plan are experienced in providing AIDS care. Instead, Benova, Inc., has utilized an information list of experienced HIV physicians developed by the AIDS Working Group on HealthChoices, an ad hoc coalition.
Ronda Goldfein, senior staff lawyer at the AIDS Law Project of Pennsylvania, told the Inquirer that "All this really does is confuse people tremendously."
Goldfein also "expressed concern about whether the HMOs could meet the complex and costly medical needs of people with HIV."
However, Dennis Gallagher, the Health Care Financing Administration's branch chief for Medicaid operations, said he was impressed with the state's ability to get the vast majority of the 520,000 HealthChoices members to select an HMO without being automatically assigned to one. He said, "That speaks well about the outreach program."
Meanwhile, a consumer advisory group to the HealthChoices HMOs met last week but was unable to obtain information from HealthPartners, which is believed to include the largest numbers of people living with HIV/AIDS, on what actions it will take to respond to losses of over $8 million it claims it has suffered since the beginning of HealthChoices, most of which it attributes to low reimbursement rates from the state for AIDS-related care. HealthPartners has received permission from the state to suspend all new enrollments in Delaware County, and has announced that it is scaling back on its plan to develop a network of "centers of excellence" in AIDS care.
AIDS advocates have consistently charged that the low funding awarded to HealthChoices by the Ridge Administration would result in people with HIV/AIDS and other disabilities from getting adequate care under the new plan. A recent survey of 1000 people living with HIV/AIDS in the region, most of whom were covered by Medicaid or uninsured, showed that almost 40% of PWAs are not using the new combination AIDS therapies which have been shown to significantly improve health status among people with HIV disease. Some advocates charge that the lack of experienced AIDS physicians under HealthChoices, as well as the vague standards and serious access problems, put HealthChoices participants at special risk of not getting the care they need.
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