City demands HIV info on 8 black employees
New AIDS priorities conflict with current spending
With the award of the waiver, the "HealthChoices" program passed its final hurdle before formal implementation on February 1st. People with HIV receiving Aid to Families with Dependent Children (AFDC) benefits are to enter the plan in February, with SSI recipients and other single people required to select a plan by July 1st. The plan covers 560,000 poor people in the five-county Delaware Valley area, including about 17,000 people living with HIV disease.
People with HIV, AIDS service providers and activists, most particularly ACT UP/Philadelphia, have conducted an intensive advocacy campaign over the past year to highlight what they've called the "many failures" of the HealthChoices plan to protect access to adequate primary medical care for low-income PWAs. The HCFA conditions mirror most of those concerns, which have been articulated through a loose coalition of most AIDS providers and advocates in the region called the Ad Hoc Coalition on HealthChoices.
The advocates have also complained that the state continues to mis-lead HCFA on what it is actually doing to address these concerns.
In its letter granting the waiver, HCFA said that the Pennsylvania Department of Public Welfare (DPW) must guarantee that health maintenance organizations (HMOs) have sufficient experienced primary care physicians in their plans to meet the needs of people with special health needs, including PWAs, and a plan for "monitoring...performance for providing care." The lack of experienced AIDS physicians -- even the definition of what "experience" means -- and of an ongoing quality assurance plan has been a major issue of complaint among PWAs as HealthChoices has moved forward.
Bruce Fried, director of the Office of Managed Care at HCFA, said in the HCFA award letter that "federal financial participation" in HealthChoices would be contingent not only on DPW's ability to show it had a sufficient provider network in place at the start-up of HealthChoices, but would depend on the "continued adequacy" of a provider network to meet special health needs.
Another condition that HCFA set on HealthChoices is that it must spell out specific standards of care for PWAs and other disabled populations. In the past, each HMO has followed its own information standards, which most AIDS activists have found lacking. Fried said that HealthChoices would not be allowed to begin covering PWAs and other SSI recipients until the state adequately answers its concerns about whether appropriate standards of care are in place.
In a meeting with advocates convened by Philadelphia health commissioner Estelle Richman several weeks ago, the four HMOs participating in HealthChoices -- Healthcare Management Alternatives, HealthPartners, Keystone/Mercy and Oxford/OakTree -- agreed to work with advocates on developing definitions of "AIDS experience," attracting more qualified AIDS physicians into their plans, and adopting an appropriate standard of care. The HMOs also agreed to establish medical and consumer advisory panels. Advocates have proposed several follow-up steps to the HMOs to act on these pledges, but so far have received little response.
A major condition of the HCFA award is a requirement that PWAs and other disabled people whose doctors are not presently included in one of the HMO panels must be allowed to continue getting care from those doctors until either the doctor joins an HMO or the patient can be "safely" moved to another provider. State officials have said they are working on a system to keep PWAs in the current "fee for service" Medicaid plan until they can be ensured that their care will not be disrupted by the shift to HealthChoices.
HCFA's waiver award also required that the state address lingering concerns about the state's contract with Benova, Inc., which is supposed to help PWAs and other Medicaid recipients to knowledgeably choose an HMO for their care. Activists say that Benova has been unable to assist PWAs in finding out which plan their current doctors belong to, or how to identify a new one, and are incapable of helping individuals who do not speak English.
DPW must "ensure that contracts [with the HMOs and Benova] are consistent with the assurances provided to HCFA," Fried said. Despite mounting evidence that Benova has been unable in a single case to link PWAs to appropriate primary care physicians, as required under its contract with DPW and the HMOs, DPW has claimed that the benefits consulting process is working for disabled people. The HCFA provision is seen as casting doubt on DPW'S contentions and requiring more detailed explanations as to why consumers are complaining about Benova's performance.
DPW must assure that "all recipients will have reasonable access to complete, current information concerning each managed care organization's provider network to enable them to choose a plan and primary care physician, including those primary and specialty care practices appropriate for the treatment and communications need of patients," Fried said.
We The People and other AIDS advocates have called on DPW to establish a special benefits consulting arm to HealthChoices specifically for PWAs with an entity which knows what care people with HIV need and who provides it.
The Ad Hoc Coalition on HealthChoices has demanded that DPW rescind its $12 million contract with Benova, saying it has already failed. Larry Hochendoner, Executive Director of the Philadelphia AIDS Consortium (TPAC), said in a press release last week that "the community is outraged by the gross mismanagement being allowed by the Commonwealth of Pennsylvania, through this contract." Kiyoshi Kuromiya, a PWA and director of Critical Path AIDS Project, said in the statement that "the issue is that the Commonwealth of Pennsylvania is simply wasting $12 million by continuing this contract with Benova, a contract that they are either incapable or unwilling to fulfill. This is gross fiscal mismanagement, bordering on fraud, and it must be corrected. This has now become an issue for all taxpayers living in this Commonwealth and it has become an issue that must be addressed immediately."
Roy Hayes, former chairperson of We The People and co-chair of TPAC's consumer caucus of people living with AIDS, "Benova is entirely unprepared to deal with the realities of enrollment into a mandatory managed care system. Last year alone, according to the Associated Press, an advisory panel recommended suspension of Benova for poor performance in a similar project in Connecticut."
To date, there is no existing list of HIV specialists available to assist persons with HIV and AIDS in their enrollment, the coalition charged. Instead, when a person living with HIV or AIDS contacts Benova, they are provided with telephone numbers for the four participating HMOs and asked to contact those organizations directly. "If the client is to call the HMO directly the should be no need for enrollment counselors, like those supposedly provided by Benova. This is a completely inadequate process," Hochendoner said.
Fried, the HCFA official approving the waiver, was silent on the most important concern expressed by advocates about HealthChoices: the low "capitation" rates which the state will pay to HMOs and providers under the Medicaid plan. "Capitation" is the amount of money an HMO receives every month for each of its subscribers. HMOs are required to provide all medical care needed by a subscriber within the capitation rate or they will lose money. Because the capitation rates available to the HMOs under HealthChoices are even lower than what Medicaid would pay for medical care under the old "fee for service" Medicaid program, advocates have pointed out that the HMOs will have an incentive to provide lower quality or insufficient care to PWAs because they will likely lose money if they provide the expensive care that is often needed.
Pennsylvania Governor Tom Ridge has resisted defining a special AIDS capitation rate for HealthChoices, noting that the fundamental reason for implementing the program in the first place was to save money. Opponents have said that while Medicaid will save money under the Ridge plan, hospitals and medical practices will only shift their higher costs -- if they provide the needed care at all -- to other payers, such as private health insurance plans. "Taxpayers might see a savings in their taxes, eventually," former WTP executive director told HCFA officials at a public hearing in November. "But they'll also see increasingly higher premium costs for their own health insurance as a result. All the Governor is really doing is forcing a hidden tax on taxpayers over which they'll have less control than if he simply allowed Medicaid to pay for what AIDS care really costs."
At the same hearing, Philadelphia FIGHT executive director noted that the low capitation rates are likely to reduce access to care just at the time that AIDS treatments are proving more promising as a result of the use of protease inhibitors and combination therapies that seem to improve the survival and quality of life of people living with HIV/AIDS. She noted that people with private insurance will be able to access such treatments, but that Medicaid recipients, at a time of great hope for making AIDS a manageable illness, are being told by Governor Ridge: "but not for you, not for you."
DPW policy director Peg Dierkers, who at one time directed an AIDS service organization in the Harrisburg area, said that DPW might be willing to revisit the capitation question in three years, once more data has been collected on how much AIDS care actually costs. Activists have countered that the HealthChoices capitation system already "stacks the deck" against PWAs getting appropriate care, and that the state's data will not be sufficient in determining how much good care would cost if it was actually being provided.
Meanwhile, DPW Medicaid medical director Christopher Gorton, M.D., has asked for input from the Ad Hoc Coalition on a protocol for credentialing primary care physicians as specialists in AIDS care, a basic step in assuring that the HMOs have qualified physicians on their panels and that PWAs will be able to name them as their primary care physicians, the "gatekeepers" to all care available under HealthChoices. Advocates have that allowing PWAs to have direct access to AIDS specialists as their primary care physicians is essential to assuring appropriate care, rather than forcing them to accept a less-experienced physician who would then have to approve any specialist referral that the client might need. Less experienced physicians, under the current HealthChoices capitation rates, will have a major disincentive to making specialist referrals because they and the HMOs will lose money on the referrals, the advocates have noted.
The new protocol, developed by DPW and the HMOs in meetings held in November and December, depends on Benova's ability to identify AIDS specialists and help individuals select them. It gives the HMOs the right to determine on their own how to credential a provider as a specialist, and what AIDS standard of care they will follow.
The protocol only allows Benova and the HMOs to know which providers are available for special health needs, rather than publishing the lists of providers publicly. It also calls for an annual "quality management work plan" for monitoring the quality of care provided to PWAs, based on a vaguely-defined "member survey to review satisfaction with physician and HMO services."
City demands HIV info on 8 black employees
Philadelphia city attorneys have demanded that eight African American employees, who have claimed that suffered racial discrimination while working for the city's AIDS office, reveal their HIV status to the city.
The eight employees, most of whom have been transferred to other health department agencies or have left city employment since the case was filed, are suing former AIDS Activities Coordinating Office director Richard Scott, former health commissioner Robert Ross, and other city officials claiming that they were passed over for promotions or relieved from duties solely because they were black. They are seeking more than $100,000 in punitive damages, and reconsideration of promotional opportunities for five of the employees.
U.S. District Court judge Louis Bechtle ordered the plaintiffs to tell the city of their HIV status, as well as turn over their medical records for the period they worked for the AIDS office, on December 23rd, at the request of city attorney Raymond Kresge.
The group's lawyer, Clifford Boardman, protested the judge's order, saying that it violated the Pennsylvania Confidentiality of HIV Information Act, which says that courts and employers are not entitled to HIV information on employees except in extreme cases of compelling need. "Such a need doesn't exist in this situation," Boardman told the Philadelphia Gay News.
Boardman said that because the case is scheduled to go to trial in the next several months, the plaintiffs had no option but to comply with Bechtle's order, although his decision could be appealed after a verdict is delivered.
Bechtle had previously threatened to throw out the entire case unless the plaintiffs turned over all of their medical records.
Boardman noted that Bechtle allowed Kevin Green, AACO's AIDS Education Director, to decline to answer a question from the plaintiffs on his HIV status at an earlier hearing in the case. Green's promotion over several of the black employees, who had many years more experience, is one of the major issues in dispute in the case.
The demand for HIV information was called "ironic" by one of the plaintiffs, who noted that Scott himself was dismissed from his post as AACO director when he publicly released the HIV status of four African American members of the city's HIV Prevention Community Planning Group in 1994 after the individuals had asked it remain confidential. Scott was later promoted by city health commissioner Estelle Richman to Chief of Staff in her office, even though his salary and benefits -- rumored to cost the city over $85,000 annually -- continue to be billed to the city's AIDS budget.
"Mr. Scott has already shown that he is incapable of keeping this type of sensitive medical information confidential," Boardman said. "He's the last person who should be gaining access to it. The city claims to respect the state HIV Confidentiality Act, but that position is quickly discarded when it suits their purposes," he told PGN.
Marcella Mills, an HIV counselor who is one of the plaintiffs, told PGN that her job requires her to counsel people about the importance keeping HIV information confidential. "It shocks me that the city can ask for this information."
The city's attorneys have also challenged the admission of testimony from former AACO director David Fair -- who founded the AIDS office in the health department in 1987, and later served as executive director of We The People -- which the plaintiffs have characterized as "expert" testimony on AACO funding and personnel practices both before and during Scott's 18-month tenure as AACO director.
In a detailed 36-page report submitted to Bechtle in October, Fair described what he called a "consistent pattern" of racial bias in funding allocations and priorities for AIDS services in the city health department since 1984. Fair also noted that Scott, apparently on his own authority, eliminated funding for almost all HIV prevention efforts in the African American community in the summer of 1994, even though close to HIV prevalence in the black community is almost 850 times that of whites. Green, who had no prior AIDS experience before being brought on by Scott to his staff, was given authority over all HIV prevention programs of the city shortly thereafter.
The latest AACO surveillance report almost 70% of new AIDS cases in Philadelphia are occurring among blacks, including 63% of gay cases, 76% of IV drug-related cases, 75% of heterosexual cases, and 75% of cases in women.
Scott's decision to terminate HIV prevention contracts in the black community was later overturned by Mayor Rendell after several weeks of public outcry.
Boardman said that he believed that Bechtle's support of the city's request for the HIV status of the plaintiffs marks the first time "that a court has demanded this type of personal medical information under such circumstances. It can have a chilling effect on people who want to sue their employer."
Kresge, the city's attorney, told the court that the information was important in determining the validity of the plaintiff's claim that they had been damaged by Scott's actions.
Treatment advocates, most notably at Philadelphia FIGHT and We The People, have for many years derided the AIDS priorities for emphasizing social services which "comfort" an individual without addressing their medical concerns. "As long as we keep saying you can have a case manager but we won't help you have a good doctor, we're simply saying that we'll keep you comfortable while we wait for you to die," former WTP executive director David Fair told the Ryan White planning council in 1992. James Loyce Jr., director of AIDS Project Los Angeles told the Wall Street Journal last month, however, that "You can have the best medicines and medical services in the world, but if people can't get to the appointment, what good does it do to have a doctor sitting there someplace?" Providers also note that their services are still important, because the new drugs do not work for everyone and they might not have lasting efficacy. "In explaining their position, advocates of increased funding for treatments say the service organizations have grown into massive bureaucracies that seek to perpetuate themselves," according to the Journal article. The debate on priorities for the allocation of government AIDS funds has arisen in Philadelphia as well, as advocates have debated how the region's Ryan White CARE Act, city and state funding should be spent given the new treatment advances. Priorities for Ryan White Title I and II funding were recently adopted by the Philadelphia EMA HIV Commission, which call for over 27% of all public AIDS dollars to be spent on outpatient medical treatment and AIDS medications, and less than 26% on AIDS case management services. This year's priorities may differ from previous years because for the first time, at least half of the members of the planning councils which establish them have been comprised of people living with HIV/AIDS. Previous planning processes have depended primarily on the views of staff of AIDS service organizations and AIDS planners, and were so widely criticized for conflicts of interest that they were jettisoned by both the city health department, which is responsible for Ryan White Title I funding, and The Philadelphia AIDS Consortium, which sets priorities for Ryan White Title II funding, in 1995. TPAC has not yet acted on the most recent priority listing. The new Philadelphia regional priorities significantly conflict with current AIDS allocations. Currently, according to a summary released by the AIDS Activities Coordinating Office last month, 39% of federal and state funding is spent on case management, coordination and related information and referral services; the report does not note that of the city's own general funds available to AACO, almost 50% is spent on AIDS case management services at a single agency, ActionAIDS, the first agency to receive case management support from the city in the late 1980s. Inclusion of this funding would bring the percentage spent on AIDS case management to almost 42%. Additional funding from the city and the U.S. Centers for Disease Control supports "risk reduction intervention" activities, which provide more informal, time-limited case management supports to people living with HIV/AIDS and uninfected people at high risk of infection. Ryan White funds for primary medical care amount to only 21% of the currently allocated funds, according to the AACO report. While the Philadelphia Health Department spends additional funding for AIDS care through its district health center network, no city general funds under the control of AACO are apparently spent for this purpose. AACO has traditionally resisted releasing formal data on how it spends city general funds for AIDS services. The list of priorities adopted by the HIV Commission includes:New AIDS priorities conflict with current spending
New AIDS priorities adopted by the Philadelphia EMA HIV Commission have created a significant challenge to how the region's public AIDS dollars are spent on AIDS-related services. The priorities have been developed at a time when the recent successes of new AIDS drugs have driven people living with HIV/AIDS to call for a shift of funding away from case management and other social services toward drugs and treatment.
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In addition to these priorities, the committee provided general instructions on AIDS allocations, including that services to women, infants, and children are at the level of their epidemic proportion in the Philadelphia area; that funding will be targeted to populations heavily impacted by, and based upon the number of persons living with HIV/AIDS reflected by current epidemiological data in the Philadelphia area and will take into consideration estimated under-reporting; and that allocations be made proportionately, to the number of AIDS cases in the city, Pennsylvania suburban counties, and the four New Jersey counties included in the Philadelphia "eligible metropolitan area," and to agencies actually located in those areas. |