Richman response rejected by PWA women on perinatal panel
---------------Specter holds first hearing on mandatory counseling bill
---------------Complaints mount on Kolker
PWAs dumped from AACO case management coordination plan
Richman suspends CD4 lab reporting -- for now
US AIDS toll tops half-million -- young blacks at highest risk
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The women had complained that they had been unfairly excluded from a meeting convened by City Councilwoman Joan Specter about pending legislation which will require all pregnant women to be counseled about HIV testing.
In a letter to WISDOM (Women with Immune System Disorders Organizing and Meeting), the region's only organized coalition of women living with HIV/AIDS, Richman confirmed that city AIDS planning director Jennifer Kolker was asked by Specter to recommend "names of individuals to participate in any meeting to be held" by Specter to discuss her planned legislation.
Richman said that Kolker submitted a list of recommendations that did not include HIV+ women "since at that time we were still identifying women with HIV to participate in the Advisory Committee." Instead, she said, Kolker provided Specter with "names of providers who could connect them with HIV-positive women."
"This is a joke," said Karen Lyons, an HIV+ member of the Health Department's Advisory Panel. "At the time at which Specter was being given these names, we had already had two four-hour meetings of the advisory group in which at least six HIV+ women had taken part. And we had eight or nine planning meetings before that. How could they 'still be identifying women with HIV' when we were sitting right there clear as day?"
The HIV+ women had been appointed by Richman to serve on the Perinatal Transmission Advisory Committee to help develop a local series of recommendations with regard to how to prevent the perinatal transmission of HIV and how to educate women of child-bearing age to help them make sometimes complicated treatment choices. Over twenty health care providers and representatives of city and community-based AIDS service providers have also participated in the panel.
Specter, who was defeated for re-election in November, held the first of what is likely to be a series public hearings on her bill earlier this week (see below).
Kolker, who staffs Richman's committee, never reported on the existence of her discussions with Specter to the Advisory Committee. While the formal health commissioner's advisory group was broadly representative of the women's health and AIDS communities, Kolker's group was limited to representatives from the ActionAIDS, the Family Planning Council, the Maternity Care Coalition, Hahnemann's AIDS Education and Training Center, and the city's two pediatric hospitals, Children's Hospital of Philadelphia and St. Christopher's Hospital for Children -- none of whom are known to be women living with HIV disease.
When Kolker's meeting with Specter became known in late September, five HIV+ women on the committee complained to Richman in a letter on October 4th. They repeated their complaints directly to Milan when he spoke at a meeting of the We The People Board of Directors on November 8th.
"We had thought that AACO in general, and specifically around this issue, had a commitment to ensuring the participation of HIV positive people in all areas that affect their lives," the women wrote, noting that Richman has on many occasions said that "consumer" input was paramount to her AIDS policy. The five women -- Varee Suthireung, Karen Lyons, Adrienne Crudup, Silverline Edwards and Susan Weicksel -- told Richman that their appointment to Richman's own perinatal transmission advisory group was "tokenistic" -- in fact, they said, "the whole process is tokenistic," and that AACO had formed a second, secret group that was working with City Council on a "direction other than the one under discussion" by Richman's own group.
The issue of mother-to-child HIV transmission has become an increasing focus of public attention in recent months, as the rate of increase in new diagnoses of AIDS rises fastest among women. While only 12.5% of all AIDS cases in Philadelphia to date have been women, over the past year alone, 21.6% of new cases have been among women. Three out of four cases of AIDS in women locally are in women of color, most of whom have very low incomes and, as a result, more difficulty in obtaining appropriate pre-natal care.
Linked to the increasing rate of AIDS among women, pediatric AIDS cases are also showing a rapid rate of increase, according to the city. In the period from 1981 through 1994, only 79 pediatric cases -- defined as those aged 13 or less -- had been reported, but 46 new cases have been reported in the last twelve months alone.
On the federal level, legislation has been offered mandating HIV testing of pregnant women with or without their consent, but has not been moved forward. An amendment to require that states and cities receiving Ryan White CARE Act funds mandate HIV counseling for pregnant women, and encouraging voluntary testing, was successfully attached to the bill reauthorizing Ryan White expenditures for the next five years, however.
Critics have said that the failure of Congress to award new funding to support the mandating counseling/voluntary testing concept will mean that only poor and uneducated women will be encouraged to be tested, and that appropriate counseling is not likely to be always available to them.
The five HIV+ women, as well as Pam Ladds, director of Women with Immune System Disorders Organizing and Meeting (WISDOM) -- the area's only advocacy group comprised of women with HIV/AIDS themselves -- had earlier expressed concern to AACO officials about other meetings Kolker had arranged with Family Planning Council representatives to develop a new network of HIV+ women peer counselors. Rumors that Kolker and the Family Planning Council have been working to develop the peer counseling program without consultation with existing HIV+ women providing peer counseling have been rife for several months.
WISDOM, along with We The People's Positive Voices Outreach Team, operate the largest peer counseling programs for HIV+ women in the city. The groups have advised AACO that they are not opposed to the development of expanded resources in this area, but are concerned that AACO appears to be doing so without involving peer counselors who have experience in providing the service. They have also expressed concern that AACO is attempting to create a peer counseling network that is more cooperative with AACO's own political agenda, especially with regard to the encouragement of HIV+ pregnant women to use AZT.
Federal legislation requires that 15% of future Ryan White CARE Act dollars be allocated for programs which impact on the transmission of HIV infection from mothers to children. Concern has been raised that Kolker and other AACO staff are seeking to divert these funds to agencies of their own choosing by working with them secretly to develop programs that will qualify for the funding, while excluding existing peer counseling programs.
Supporters of the bill claimed it could help prevent maternal-infant HIV transmissions. However, critics argued that the measure would encourage discrimination against women, keep women from getting prenatal health care, and alienate the medical community.
Specter, who chaired the hearing, described it as "the beginning of a dialogue." Specter said she was pushing the measure because of new findings which show that women who take AZT during pregnancy and delivery significantly reduce the risk of transmitting HIV to their infants. The Councilwoman noted that it was therefore critical that pregnant women be offered HIV screening and information about current and future drug treatments.
Michael Spence, M.D., who heads Hahnemann Hospital's Women's Care Clinic, condemned the legislation and said it would be expensive and unenforceable. "What are you going to do," he said, "have counseling police who come into the office" to make sure women are getting counseling? Anna Forbes, a consultant to the AIDS Information Network, also opposed the measure, saying that forced counseling would "coerce" women, especially poor women, into getting tested for HIV against their wills. That perception, she said, could lead many women to avoid getting prenatal care.
ACT UP's Julie Davids challenged the contention that the evidence supports the use of AZT as an effective treatment that helps prevent the perinatal transmission of HIV. She said that the single study which is used to encourage pregnant women to take HIV was based only on a small group of pregnant women who had never before taken AZT and who were in the second and third trimesters of their pregnancies. She said that the AZT benefit in the study was not as dramatic as has been reported, and that in any case, there was no evidence it was helpful at all for women who did not fit in to the specific categories included in the study.
While Specter will no longer be on City Council after the end of the year, other sponsors of the bill -- including Councilmembers Jayne Blackwell, James Kenney, Happy Fernandez and Marion Tasco -- are expected to hold further hearings later in the winter and bring the bill to a vote in early spring.
The sources said that complaints have been received by the personnel department alleging that Kolker was "provisionally appointed" to the new post after over twenty other applicants were inappropriately removed from a list of applicants developed by the personnel department. They said that after the intervention of a "high-ranking official in the commissioner's office," the requirements for the position were changed in order to make Kolker one of the only qualified candidates for the position.
Late this month, city personnel officials "froze" the candidate's list for the position, meaning that Kolker will serve in the position indefinitely while the job specifications for the position are reviewed. A similar process was implemented during the tenure of former AACO director Richard Scott when he appointed Kevin Green, the controversial head of AACO's education unit, to that position over the heads of more experienced AACO employees. The "freeze" lasted for so long that by the time a permanent appointment had been made, Green was the only candidate with extensive on-the-job experience and was therefore permanently appointed to his post.
Nine AACO employees, all African American, filed a civil rights discrimination lawsuit regarding the Green appointment and other personnel actions by Scott that is still pending in federal court.
Kolker's position handles most of AACO's AIDS planning functions, including its contractual relationships with the U.S. Centers for Disease Control and the Health Services and Resources Administration. The city receives close to $15 million in AIDS funding from those sources.
Kolker's appointment led to another complaint from four local AIDS service organizations and four HIV+ members of the Philadelphia AIDS Consortium board of directors, including the chair of TPAC's HIV+ Caucus.
The AIDS planning manager position "is one of the most important in the Health Department with regard to both public and community-based programs combating the AIDS epidemic in our city," the complainants wrote to city personnel department director Linda Seyda in early November. "In addition to the critical role this individual plays in the development of basic objectives for our AIDS response, he or she also is the primary representative of the city in its relationships with the primary federal funders of AIDS services, the Health Services and Resources Administration and the U.S. Centers for Disease Control and Prevention. It is of urgent importance that the individual given this responsibility be competent to maintain and enhance those federal relationships, as well as be able to act with the trust and support of the communities most impacted by the HIV/AIDS epidemic."
The letter continued: "As you know, AACO has been seriously undermined by the perception that staff positions and promotions have been awarded on the basis of personal connections and racial bias. The effort to move Ms. Kolker from her consultant position to permanent civil service appointment is, in our opinion, consistent with that perception.
"Each of us is, or has, served as members of the Board of Directors of The Philadelphia AIDS Consortium; one of us was an officer of that corporation for several years. In her previous role as Manager of Planning for TPAC, Ms. Kolker engaged in a consistent and conscious policy of preventing the input and participation of people of color in the TPAC planning process; she violated board directives with regard to planning procedures and objectives; and she consistently exhibited a total lack of understanding of the experience of poor people with HIV/AIDS and the communities of color most at risk of HIV infection."
The group said that in 1994, after the TPAC Planning and Evaluation Committee adopted a comprehensive AIDS services plan for HIV/AIDS services throughout the nine-county Philadelphia metropolitan area -- the first such plan ever to reach a consensus in the often-combative AIDS service system, and a plan which had to be written by outside consultants because Ms. Kolker failed to fulfill that responsibility for two years -- "Ms. Kolker, unbeknownst to any of the participants in the planning process, secretly eliminated all meaningful references in the plan to poor people and people of color. Her obvious intention was to eliminate references in the plan which would have forced the AIDS planning process to take notice of the fact that the AIDS epidemic is impacting primarily on minority communities, and protect the interests of majority-run AIDS service organizations that are threatened by the advent of services controlled by and responsive to communities of color."
The group continued, "After complaints were raised by board members, Ms. Kolker's supervisors were forced to restore each of the deleted provisions. But the distrust and racial division that resulted continues to torture the AIDS service delivery system."
Noting the new complaints of HIV+ women that Kolker has sought to undermine their participation in the AIDS planning process, the group said that "Ms. Kolker's history in the AIDS service delivery system has been one of total unwillingness to involve people of color and people with HIV/AIDS. Her appointment to this position would make a travesty of the city's public health responsibility to plan and deliver HIV/AIDS services, and would be a slap in the face to all people of color affected by AIDS and all people living with HIV/AIDS, especially those in the African American and Latino communities."
The letter was signed by Gerald Wright, president of the Minority AIDS Coalition of Philadelphia and Vicinity and executive director of the AIDS Community Education Project; Stephen Pina, executive director of One Day At A Time Recovery Program; Rebecca Barragon, director of program operations for Congreso de Latinos Unidos; David Fair, executive director of We The People Living with AIDS/HIV of the Delaware Valley; and four HIV+ members of the Philadelphia AIDS Consortium board of directors: Joseph Cronauer, Gregory Hardy, Linda Smith and Varee Suthireung.
No response to the group's complaint had been made by city officials at press time.
Instead, AACO has proceeded with efforts to hire at least two full-time staff for the coordination project and to contract with ActionAIDS, the region's largest case management provider, to provide training to other case management agencies.
Two other elements of the project -- a PWA-led survey of consumers and case managers to assess training needs based on interviewers with case managers and their clients, and the creation of a consumer/provider project oversight committee -- have been ignored by AACO.
The original project was a unique collaboration designed to garner the investment of both clients and case managers, and overcome the often combative political relationships that have undermined such cooperative efforts in the past. Shortly after his appointment as AACO director in 1993, then-director Richard Scott pledged to contract with ActionAIDS and We The People to perform the various functions of the new coordination system, under the general direction of an AACO staff member who would be hired for this purpose.
However, Scott took no action on his commitment for many months, and the project fell to the wayside after Scott's removal from office last October.
The Philadelphia AIDS Consortium sponsored a case managers conference last spring as part of the effort to encourage the development of the coordination project. That conference was also criticized for its high cost (over $30,000 for a one-day meeting), and because there were no follow up plans for acting on its recommendations. At that time, We The People requested health commissioner Estelle Richman to develop a process to put the project back on track, but never received a response to that request.
Funding to hire the new AACO staff and for the ActionAIDS training project is being allocated from Title II Ryan White funds held by the Philadelphia AIDS Consortium, and Title I funds under the control of AACO.
We The People has formally objected to the exclusion of PWAs from the case management coordination plan.
"Our concern arises from the fact that the overall design of this process, which was originally developed in a mutual effort between ActionAIDS, We The People and Richard Scott, now is apparently being pursued without attention to the clear commitments made by AACO in the past to ensure significant consumer involvement in this process at all stages of its development and implementation," We The People said in a letter to AACO director Jesse Milan.
"Instead, AACO is intending to quickly hire staff and ActionAIDS is intending to develop training models, and there has been absolutely no involvement of people living with HIV/AIDS who are served by the case management system in any way. AACO's original commitment that consumers -- organized, under contract, through We The People -- would be involved in all phases of this project; that there would be a consumer-led assessment process to determine training priorities and policy issues; and that there would be an oversight committee to consult with AACO on the needs of case managers and their clients -- have been totally ignored."
The statement continued: "This is unacceptable. In a context in which AACO staff at all levels below you have consistently refused to involve consumers in critical policy decisions affecting their lives -- and have been affirmed in this arrogance by yourself and the Commissioner in every instance -- this failure to even consult with consumers as the critical foundation of this new coordination system is laid dooms it to failure."
There was no response from Milan to the WTP letter at press time.
Lab-based reporting is already done extensively throughout the city on a voluntary basis. The city's board of health approved the process several years ago for formal inclusion in the city's mandatory reporting policy.
Representing the city at the meeting were Health Commissioner Estelle Richman, AIDS Activities Coordinating Office (AACO) Director Jesse Milan, and the city's AIDS epidemiologist Dr. Erica Gollub. Although the officials claimed the meeting was a "community advisory meeting" to discuss whether the city should initiate the policy, a prepared statement read by Milan at the beginning of the meeting stated that the city was already intending to begin implementation.
Name reporting of people diagnosed with AIDS in the state of Pennsylvania is already legal and in practice, as well as name reporting of those people diagnosed with one or more of seventeen opportunistic infections closely related to AIDS. According to Gollub, the intention of requiring local labs to report by name any individual who has a CD4 count of 200 or below is to make it easier for her office to more accurately count the number of people in the city who have AIDS.
It is currently believed that the number of people with AIDS in the city is actually as much as 28 percent higher than the amount currently reported, the result of which is a loss in federal funding for AIDS care andprevention programs which are awarded in part based on AIDS cases in the region. Officials estimated that loss at about $2.7 million over the last two years.
The city has already suffered from the loss of close to $1.5 million in federal CDC funds because of delays in allocating grants to community AIDS prevention groups. Close to $1 million in federal Ryan White CARE Act funds have been "underspent" in the last two years, requiring last-minute reallocations of funding, and the Philadelphia AIDS Consortium was recently denied a $300,000 grant from the state because of concerns about its internal operations.
According to Gollub, a CD4 count of 200 or below, which is now part of the CDC's definition of AIDS, is currently not directly reportable to the city health department by labs who conduct such blood testing. The system that is relied upon now is name reporting by doctors of patients whom they have diagnosed with AIDS. Gollub stated that this system leads to under-reporting because area doctors are either unwilling or unable to report AIDS cases to the city in a timely way, either because of their constraints such as time, or the doctor's efforts to protect their patients' confidentiality.
It was unclear how lab reporting would result in an improvement on this problem, since it still ultimately requires the doctor to make the case report.
Two years ago this issue was raised by the health department and was roundly opposed by a wide array of organizations including over 40 organizations represented by The Philadelphia AIDS Consortium (TPAC), We The People and ACT UP Philadelphia. Then-health commissioner Bob Ross promised that a workgroup would be convened that included community representatives as well as people living with AIDS/HIV to look into the issue and explore alternatives.
The workgroup was never convened, however, and when Ross' promise was brought to Commissioner Richman's attention at the meeting, she said she had "no idea" that the promise was made. She did not commit herself to forming such a workgroup herself.
The announcement drew harsh criticism from virtually all of the thirty or so people in attendance, not only because of the decision that was made, but also because the city had informed no one from the community beforehand and had only sought the input of city health department staff.
Dorothy Mann, executive director of the Family Planning Council of Southearstern Pennsylvania and Chairperson of the TPAC Public Affairs Committee, said at the meeting, "Quite frankly, this process stinks," referring to the fact that the city proceeded to make this decision without consulting with PWAs or anyone else in the community that the policy would affect. She added that since Ryan White CARE Act funds were being cut by a Republican Congress, the city could bring more money into the city by registering people to vote rather than collecting CD4 counts.
Addressing Commissioner Richman, Joe Cronauer, We The People's Education Director and a member of the TPAC Board of Directors, said that this decision "...flies in the face of two years worth of work by the health department and those that they are supposed to serve in trying to forge a trusting and collaborative environment and move ahead."
Critical Path AIDS Project director Kiyoshi Kuromiya announced that he had no AIDS defining illnesses, but did experience weight loss. He asked Gollub what her plans were for mandatory name reporting of weight loss. She had no response.
A number of people, most notably local consultant and activist Anna Forbes, pointed out to the city representatives that there were a variety of alternatives to actual name reporting, including the concept of "unique identifiers", which is a system that would allow a code to be attached to each case instead of a name, so that cases could be tracked without the fear of a breach of confidentiality. Forbes pointed out that such a system was already in place and working in at least three other states. Responding, Dr. Gollub said that such a system is not as accurate as name reporting, is very expensive to implement, and is not what she wants. In response to the latter comment, Cronauer retorted that "It doesn't matter what you want, it's what we want, the ones that this system was set up to serve. Ask us what we want."
Two years ago, We The People had proposed a modification to the lab reporting model which would require labs to report CD4 test results under 200 with the name of the doctor who ordered the test, but with an identifier (such as initials and last four digits of the patient's social security number) for the patient that would probably be unique in that doctor's office, but not specific enough to risk a breach of confidentiality. As with Gollub's proposed system, the AIDS surveillance office at AACO would still have to follow up with the doctor to obtain an actual case report, but there would not be the risk of hundreds of test result reports with full names of people with AIDS floating around the city bureaucracy.
Discussions on this modification to the lab reporting system ceased when then-health commissioner Robert Ross and then-AACO epidemiologist Daniel Fife left their posts.
Confidentiality concerns about the city health department were heightened last year when former AACO director Richard Scott inadvertantly published the names of four HIV+ members of the city's HIV prevention Community Planning Group.
When asked near the end of the meeting by Ted Kirk, a consumer member of the city's new HIV planning commission and a We The People Board member, about her plans for implementation, Commissioner Richman said that she would not meet with consumer members of the commission to discuss the matter, and would not meet with anyone else to discuss it except health department staff. She would also not commit to convening a workgroup to investigate alternative solutions as promised by her predecessor. She said that she did not want to make any "rash" decisions and would not implement the policy until she took some time to "digest" what she heard.
Richman promised to come back to the community in a few weeks and tell them what she and the other health department officials have decided to do.
The board members claim that the decisions of a review panel appointed by the board this fall in some instances violated specific guidelines about priorities for the spending, or allocated funding to specific groups in categories that were not appropriate for the group's projects.
In an amendment submitted to TPAC "acting co-presidents" Audrey Tucker and Rashidah Hassan, the nine board members -- four of whom are people living with HIV, and all but two of whom are people of color -- said that they were concerned that "the allocation of State 106 HIV prevention funding [by the review panel] has ignored the clear and specific priorities established by the Board of Directors in this process." They also said that two grants of Ryan White Title II funding -- to Medical College of Pennsylvania (for clinical services) and MANNA (for food) -- "are in conflict with the specific priorities set for 'extended' services by the Board of Directors."
The board members also criticized the decision to award grants "on the basis of annual or nine-month grant periods -- even though there are only four-to-seven months remaining in the relevant contract periods." They said that based on past experience, the decision to fund at the higher levels "will necessarily result in re-allocations, underspending, or possibly waste."
"This potential can be avoided by the simple tool of pro-rating the grant awards," the group said.
"Our amendments are not meant to disparage the particular activities the review panel chose to fund, nor to indicate any lack of appreciation for the sincere efforts of the review panel to accomplish a very difficult task in a very short period of time -- a problem that was created, in fact, by the Board and the staff themselves," the group said. "However, it is clear that the 106 allocations have no relationship to the actual ranking of priorities published in the RFP, and that the MCP and MANNA programs funded by these grants, while critically important, were not eligible for consideration under the particular program category through which the review panel awarded them funding."
The group also criticized the decision of the TPAC officers to attempt to gain approval for the allocations through a mail ballot, rather than convening a board meeting.
"Inasmuch as the officers of the Board of Directors appear to prefer making decisions with enormous fiduciary impact on the corporation only through the Executive Committee or by mail ballot, we are forced to submit in writing the [amendments] to the pending motion" by mail because no board meeting was held.
Meanwhile, TPAC has already begun sending award letters based on the allocations and is developing contract documents for the awards, many of which need to be fully spent within four months.
The next TPAC board meeting is not scheduled until December 13th. The organization is already "out of compliance" with its state contract with regard to distribution of the funds, which were originally intended to be allocated for projects beginning last July. As a result of the delays, TPAC was denied access to over $300,000 in state AIDS funding made available last month to other regions in the state.
Sixty-two percent of that number have died.
Dr. Patricia Fleming of the CDC's AIDS surveillance division noted, "Over half a million people with AIDS really should signify to the American public the ongoing seriousness and magnitude of this epidemic." The number of AIDS cases has doubled in the past three years, in part, because of the expanded definition of AIDS. The CDC reported that the disease "continues to affect blacks and Hispanics disproportionately." A total of 101 of every 100,000 blacks has
AIDS and 51 of every 100,000 Hispanics has the disease, compared to 17 per 100,000 among whites.
Women at much less AIDS risk than young men
Meanwhile, new statistics show that one in every 92 young American men may be infected with HIV, and that that percentage is significantly higher among young blacks.
The data show that minorities are especially vulnerable, with one of every 33 young black men and one in every 60 Hispanics estimated to be HIV-positive in 1993, according to a new report in the journal Science that contains the most precise look at HIV to date. At this same time, one of every 139 young white men was estimated to be HIV-infected.
Study author Philip Rosenberg said that if this trend continues, "the threat of AIDS may become a rite of passage" for young people. Women, meanwhile, were more than four times less likely to be infected with HIV, with one of every 1,667 white women, one in 98 black women, and one in 222 Hispanic women between the ages of 27 and 39 infected, Rosenberg estimated. He added that his findings counter recent optimism that the epidemic was leveling off, noting that the plateau does not show the increased risk to younger people.
The Centers for Disease Control and Prevention's AIDS expert John Ward said that the data probably have changed little in the past two years, in part, because it takes HIV so long to cause death.