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Issue #195: September 18, 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 articles in this issue include Kaiser Daily Health Reports, Philadelphia Gay News, Reuters.AACO tells state it opposes name reporting
PWA gets hospice care after protest
TPAC expels PWA who complained of Geneva junket
GALAEI sponsors Geneva forum for Latinos
Report confirms extensive hunger in Philadelphia
Mother wins right to withhold AIDS treatment from son
Circle of Care offers family conference
AACO tells state it opposes name reporting
Joe Cronauer, co-director of Philadelphia's AIDS Activities Coordinating Office (AACO), has announced that AACO will oppose the use of names in the reporting of HIV cases in Pennsylvania, and will instead encourage the state to use a system of computer-generated codes to collect the information.
AACO had previously not taken a position on the name reporting issue, instead asking the state to hold public hearings on its plans to implement an HIV reporting system. At two public hearings chaired by Cronauer earlier this year, almost 100 people with HIV, doctors, hospital representatives and others involved in AIDS services uniformly support some kind of HIV reporting but strongly opposed the use of actual names in the reports. Many activists had been severely critical of Cronauer and city health commissioner Estelle Richman for being unwilling to publicly oppose name-based reporting. Deputy city health commissioner Donna O'Donnell, in an interview with the Philadelphia Gay News in August, had said she opposed name reporting, but would not commit the department to advocating to the state on the issue.
Pennsylvania is one of eighteen states that do not currently require HIV case reports, limiting themselves to collecting data only on those formally diagnosed with AIDS. The federal Center for Disease Control and Prevention has been encouraging states to begin HIV reporting soon to improve its ability to track the extent and nature of the HIV epidemic. The governor of California is currently considering a bill, which passed the state legislature last month, that would prohibit the use of names in HIV case reports, and Washington state is said to be considering not using names as well. New Jersey has been collecting the names of its residents with HIV infection since 1992.
Both the state and the city already require reporting of names of people who are formally diagnosed with AIDS. While names are included in AIDS case reports to the city health department, AACO converts the information into a computer code before transmitting the information to state and federal officials, in order to limit the potential for violations of confidentiality. State sources had told fastfax several months ago that they were leaning toward a similar system for HIV case reports, although state health secretary Daniel Hoffman would not publicly confirm that position to reporters when challenged in August. State law requires that an HIV or AIDS diagnosis be confidential and not be revealed to anyone without the patient's consent.
In a press release, Cronauer said that "It has become clear that neither providers of AIDS care nor people with HIV disease themselves believe that a name-based reporting system will work in Pennsylvania. People are rightfully concerned about the potential for confidentiality violations and discrimination, and that collecting names might discourage people with HIV from seeking the care they need to stay alive. As the epidemic becomes more and more concentrated among disenfranchised people, we have to be especially sensitive in setting up these systems so that they really work for the people we're trying to help."
"Code-based, rather than name-based, reporting is a sound public health approach that will provide information on the epidemic without deterring people from testing and treatment," Cronauer said.
Cronauer said that he would encourage the state to investigate the cost of using codes instead of names to collect HIV reports, and evaluate computer models in use in other states and municipalities prior to making a final decision on the type of HIV reporting to be implemented in Pennsylvania.
PWA gets hospice care after protest
Healthcare Management Alternatives (HMA), one of the four Medicaid managed care programs in southeastern Pennsylvania, agreed to authorize admission of a person with AIDS into Keystone Hospice this week, but only after an angry protest by 25 people with HIV and their allies at the company's West Philadelphia headquarters on September 16th.
HMA, the oldest Medicaid managed care firm in the Philadelphia area, had originally denied the hospice benefit to Ted Kirk, a PWA who worked as a psychologist for several AIDS service organizations and once served as co-chair of the Philadelphia EMA HIV Commission and as a member of the board of directors of We The People. It was the second time that Kirk had faced a crisis regarding health insurance coverage - in 1996, COMHAR, a city-funded mental health agency, denied him disability insurance coverage once he became too ill to continue working regularly, leading to angry protests led by We The People and ACT UP.
His health deteriorating over the past several months, Kirk applied for admission to Keystone Hospice, the area's only dedicated AIDS hospice. While Keystone promptly approved him for admission to the suburban Philadelphia facility, HMA denied his application for Medicaid hospice benefits.
Many people with AIDS and public health advocates have complained that HMA and the other three Medicaid HMOs routinely deny access to such benefits because of their cost. Such "blanket" denials, which force consumers into a cumbersome appeals process if they still want the benefits, are illegal in Pennsylvania.
When Kirk's situation became known among members of We The People, Project TEACH and members of the HIV Commission on September 16th, about 25 of them immediately converged on HMA's headquarters to demand that the decision be reversed. After initially asking that the issue be deferred to a later meeting, HMA officials ultimately changed their minds and approved Kirk for hospice benefits. Kirk moved into the Keystone facility that evening.
We The People's interim executive director, Rob Capone told fastfax that "this type of treatment of people living with AIDS will no longer be tolerated. We have been meeting with HMA and the other three Medicaid HMOs since HealthChoices' inception in order to prevent situations like this from occurring. This proves once again that they are just paying us lip service and we won't stand for it anymore."
"Let this serve as official notice from the AIDS community, we are watching, and from now on if we find out that anyone living with HIV/AIDS is denied appropriate medical care we will come to your office en masse," Capone said.
TPAC expels PWA who complained of Geneva junket
Mick Maurer, a Bucks County person living with AIDS who has been a leading advocate for stronger investment of local AIDS funds in services for suburban PWAs, was expelled from the board of directors of The Philadelphia AIDS Consortium (TPAC) in September after complaining that the organization had spent too much money on sending staff and board members to the Geneva international AIDS conference in July.
TPAC is responsible for allocating close to $5 million of state AIDS funding and money awarded to the southeastern Pennsylvania region under Title II of the Ryan White CARE Act. Maurer also serves as co-chair of the Philadelphia HIV Commission, which allocates almost $14 million in Title I funding for southeastern Pennsylvania and southern New Jersey.
TPAC board president Blair Durant told the Philadelphia Gay News that Maurer was removed by a unanimous vote of TPAC board members present for violating Roberts Rules of Order by revealing how much TPAC had spent on the Geneva trips. She said that Maurer had obtained the information at an August closed session of the TPAC board and should not have publicized the data until it was publicly released on September 8th. Ten of TPAC's sixteen board members were present at the board meeting, eight of whom are identified as "consumers" under the TPAC by-laws, according to Larry Hochendoner, TPAC executive director.
Durant had no explanation for why TPAC, which is mandated by the state to be publicly accountable for its use of federal and state funds, had excluded the public from the August meeting in the first place.
Durant was also among the board members who received funding from TPAC for the Geneva trip.
Maurer was not present at the September 8th board meeting at which he was removed, and was unaware that his continued membership on the board would be an issue at the meeting. He is recovering from a head injury, according to PGN. He told fastfax that he still has not been formally informed of his removal from the board, and ironically, heard about it first from the PGN reporter.
After initially claiming that Maurer's August report on the amount of funding TPAC had spent on Geneva was inaccurate, a formal report on September 8th confirmed that the organization spent over $14,500 on the trips. Several TPAC board members who attended at the expense of TPAC left the conference early to tour Europe, according to PGN.
"If [Maurer] had a problem with TPAC, he should have brought it to the board first, before going to the press," Durant told PGN. "There are trust issues involved here. Mick has not acted in the best interested of the board."
Several PWA board members who were not present at the September 8th meeting said that Durant, who is not HIV+, had her priorities wrong. They spoke to fastfax on condition of anonymity, since the board also voted on September 8th that no board member was authorized to speak on the issue except for Durant.
"It seems to me that everybody has a right to know what TPAC does with public money," said one PWA. "Blair's more worried about how the board looks and covering up our problems than she is in letting PWAs have some say over what happens."
Another board member criticized TPAC for "claiming that it has this great PWA empowerment process going on while forcing out a PWA who simply expressed an opinion they didn't like."
"I don't understand how a board of directors comprised of a majority of people living with AIDS could punish one of our own simply for speaking the truth," said Rob Capone, We The People's interim executive director. "It's really ironic that we fought so long to make TPAC a consumer body representative of the epidemic so that we could ensure accountability, and when one attempts to do so he is ousted by his peers. "
Capone also expressed concern over the fact that Maurer wasn't given a chance to defend himself, and at the severity of the action taken by the board. He asked, "Is it standard practice to remove a board member for one mistake, without even giving him a chance to explain himself? If [Maurer] did violate parliamentary procedures, and this was his first such breach of the rules, is removal a reasonable response? Something's wrong with this picture."
Maurer was circumspect on TPAC's action, according to PGN. "I think it's really dirty the way they did this, without even giving me a chance to defend myself," he said. "The budget item related to the conference should be available to the public; it shouldn't have been discussed in closed session. I'm just trying to keep the organization honest and accountable."
"I've challenged TPAC on other issues in the past, including their overall funding priorities," continued Maurer, who has complained to state officials at what he thinks is inadequate attention by TPAC to the needs of suburban Philadelphia PWAs.
"They've been looking for an excuse to get rid of me for a while. Now they think they've found something."
Maurer is not the first TPAC board member to complain that the organization retaliates against those who differ with its policies. Michael Hinson, executive director of The Colours Organization, which was denied funding for its case management and HIV prevention activities by TPAC earlier this year, said at the time that he believed the action was related to his long-time criticism of TPAC's financial management.
Other than brief statements by Geneva attenders at the September 8th board meeting, TPAC has not held any public events so that those it sent to the Geneva conference could report back to the community on what they learned.
Hochendoner, when asked if the Maurer decision would have a chilling effect on consumers who speak out on AIDS issues at TPAC, said he didn't think so.
"I believe every board member feels free to speak their mind and express the truth as they see it. I have great respect for the autonomy and independence of this conflict free board."
Blair had not responded to a fastfax request for comment by press time.
GALAEI sponsors Geneva forum for Latinos
In related news, the GALAEI Project has announced a community meeting summarizing the data presented at the AIDS Conference called "The Report From Geneva: Treatment Developments from the International Conference on AIDS," to be held on Thursday, October 1st from 1:00 p.m. - 5:00 p.m. at Concilio de Organizaciones Hispanas, 705-709 North Franklin Street. Refreshments and tokens will be provided.
A screening of the American Foundation for AIDS Research (AmFAR) video of the teleconference of panelists at the Geneva Conference will be shown. Panelists include researchers and treatment advocates, and will discuss topics such as anti-retroviral therapy, resistance, immune reconstitution, and adherence. A discussion about the issues and data presented at the conference will follow led by Dr. Wallace Llera of Maria de Los Santos Health Center and one of the few Latino physicians in Philadelphia dealing with HIV/AIDS treatment and care. Dr. Llera will answer questions those in attendance may have regarding the information discussed in the video.
GALAEI Project Executive Director, David Acosta says, "we're holding this community forum in the Latino community to ensure that the vital information coming out of the Conference reaches Latino consumers, Latino community-based organizations and others working with Latino populations. There are currently no efforts in this city to make this information available to Latino consumers and providers. We are also keenly aware that this information often goes unheard by people unable to attend such conferences. GALAEI hopes through this forum to begin a local dialogue on the information presented." The forum is made possible though generous contributions by Abbot Laboratories and Stadtlanders Pharmacy.
Individuals wishing to attend must RSVP. People needing child care should call in advance. For additional information about the forum, call GALAEI at 215.985.3382. RSVP to Luis Salas at the GALAEI Project by Friday, September 25th.
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Report confirms extensive hunger in Philadelphia
Thirty percent of adults in southeast Pennsylvania and 19 percent of their children miss meals each month because they do not have enough food or money to buy food, according to a comprehensive survey on hunger in America, released today by Second Harvest, the national network of food banks.
These and other local statistics about hunger in southeastern Pennsylvania, were compiled by the Greater Philadelphia Food Bank, the local Second Harvest affiliate, as part of its participation in Second Harvest's most comprehensive national study on emergency feeding programs to date.
Most AIDS service organizations rely on the Greater Philadelphia Food Bank for supplies for their food programs for people living with HIV/AIDS.
Other startling local results include: 82% of clients served by emergency feeding programs that receive food from the Food Bank have no other resources for food other than agency or government food programs, that 78% of households receiving food from emergency food programs have an annual household income below $10,000, that 26% have no stove for cooking and 46% have no telephone and 89% have no car. Furthermore, while 50% of clients receive food stamps, 76% reported that food stamps do not last the entire month.
Compounding the concerns raised by this survey is the fact that it was conducted in winter 1997, before most food stamp and public assistance cuts were implemented in Pennsylvania.
Contrary to public opinion that most people who go hungry in this region are homeless, only 13% of the clients surveyed were homeless. Forty-three percent of households, however, reported having to choose between paying their rent or mortgage and buying food.
Second Harvest, the national network of 185 food banks, presented the findings of "Hunger: The Faces and the Facts," the most comprehensive study to date about the state of hunger in this country at a press conference in Chicago, its headquarters city.
Mother wins right to withhold AIDS treatment from son
A judge has ruled that a Maine woman cannot be compelled to give her HIV-positive son antiretroviral drugs, denying a state Department of Human Services motion to take custody of the boy.
Valerie Emerson, who is also HIV-positive, testified that she saw her 3-year-old daughter go through an agonizing death while on AZT, and she did not want Nikolas to suffer the same way. Judge Douglas Clapp said that he had not heard sufficient evidence that Valerie Emerson was jeopardizing the health and welfare of her son Nikolas by choosing not to administer "drug cocktail" therapy.
Clapp wrote in his seven page decision that although a parent "'does not have an unfettered right to dictate the level of medical treatment' if such a decision puts a child in jeopardy, only those situations arising to serious abuse or neglect warrant government intrusion' ... 'with the relative uncertainty of the efficacy of the proposed treatment, it can only be left up to the parent to make an informed choice in this regard."
Nikolas' father, Ryan Dubay, who does not have custody, told reporters that he "wants the best treatment available for his son" and was "very disappointed" with the ruling.
Emerson's lawyer blasted the state for its heavy-handed treatment of the situation. The state could have intervened via "consultations, encouragement, positive discussion, some involvement less than a court action attempting to take away custody of this child," he said. "It's like trying to kill a mosquito with a sledgehammer and we feel it's inappropriate." Officials from the state stood by their actions, although they said they would not appeal the ruling. DHS Commissioner Kevin Concannon said he felt justified in seeking custody because specialists told him "not treating this child is not an option."
Valerie Emerson, who is following the findings of a small minority of AIDS researchers who believe that the drugs used to treat AIDS are extremely toxic and can actually cause the symptoms of AIDS, indicated that she will wait for safer treatments to be developed for Nikolas. "He deserves the chance to be [a] little boy without trying some drug that might not help," she said.
Dr. Jeffrey Lawrence, senior scientific consultant for the American Foundation for AIDS Research, was circumspect on whether Emerson was justified in withholding the treatment for her son, according to the Kaiser Daily Health Report. He stated that in the most recent pediatric studies of the drug cocktail's efficacy, "only one-third of the children achieved undetectable viral loads, and the other two-thirds had" inconsistent results. So, he said, "It is not as clear-cut in the pediatric population as in the adult population, where it is not unusual to get 100% of [patients] to undetectable viral loads and increases in T-cells." Thus, Lawrence believes that Emerson's "concerns are valid about quality of life vs. 'am I going to help this child.'" However, he cautions, "I hope she's informed enough to know that even if we can't tell her about survival for her particular child, there's at least a one in three chance there will be an excellent remission in this disease."
AIDS Action Executive Director David Zingale sees the case as "a positive step in terms of patient empowerment." Furthermore, he said, "It may also help us to take a step back from some of the exuberance around some of the new therapies, to remind us that the therapies do not work for everyone, they're not a cure for anyone, and a particularly high level of uncertainty surrounds [their] effectiveness for children."
Although he believes that the judge made the proper decision and that Valerie Emerson was not negligent, Zingale said, "I think it's appropriate for the state to be vigilant in monitoring situations like this with an eye towards ensuring that there isn't negligence." But in this case, "when you're in an area of uncertainty, the decisions have to be driven by the patient. And in this case, the decision-making authority transfers to the parent." Lawrence added, "Without an absolute and compelling reason that you will save someone's life, there are side effects with these drugs that we're all familiar with. These side effects can be debilitating to people, and quality of life can be a consideration in the treatment of HIV."
Circle of Care offers family conference
The Circle of Care is facilitating the "Celebrate Life # 2" Family Conference, to be held on October 7, 1998 at the Friend's Meeting House, 320 Arch Street, in Philadelphia.
Family members who are HIV+ or affected by HIV and are connected with the COC are planning and will be participating in this conference.
For more information, call Thelma Bea, Respite Care Coordinator, at 215-985-6262, or email to Thelma@familyplanning.org.
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