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Benova agrees to release doctor's names after angry protest
Commission controversies continue
ACT UP reports on retroviral conference
Moves after angry protest at welfare offices
The commitment, made by Paul J. DiLeo, a regional director for Benova, came after over a hundred members of One Day At A Time and We The People engaged in an angry protest at two South Philadelphia welfare offices demanding the list. No one was arrested at the protest, although several participants were beaten with nightsticks by state police who forcibly cleared them out of one of the offices.
In a meeting with former We The People executive director David Fair, AIDS activist Roy Hayes, and AIDS Law Project attorney Ronda Goldfein while protesters chanted "No Doctors? No Peace" outside the Catharine Street welfare office, DiLeo said that the state Department of Public Welfare (DPW) had given Benova permission to begin advising Medicaid recipients which doctors in each of the four HMOs in HealthChoices had significant experience in HIV care. The names of physicians utilized by Benova would be drawn from lists developed by a number of AIDS organizations, including Philadelphia FIGHT and the Critical Path AIDS Project.
DiLeo said that he had personally "changed the script" utilized by Benova's "benefits counselors" that morning to make sure that Medicaid recipients who asked about HIV care would be counseled on which doctors were in each plan. The toll-free number to reach a Benova counselor is 1-800-440-3989.
DiLeo said that Benova did not have the authority to force the HMOs to publish the names as part of the regular provider directories which they distribute to potential enrollees, which was the basic demand of the protesters.
The demonstrators also demanded that DPW delay the February 14th deadline on which some people living with HIV will be forced into an HMO chosen by the state if they are unable to get enough information to choose a plan on their own. The protesters told DPW officials that because the physician information was only now becoming available, people with HIV who needed more time to make a choice among the HMOs should have at least until July 1st to do so. Mary Ellen Fritz, a spokesperson for DPW, said that the state had "no plans" to delay the automatic assignment date past February 14th for anyone scheduled to be enrolled this month.
According to the Philadelphia Inquirer, over 43,000 Medicaid recipients have not chosen an HMO and will be automatically assigned to one by mid-February. The overwhelming majority of women and children with HIV disease are in the Medicaid program. People receiving Aid to Families with Dependent Children (AFDC) benefits were forced into HealthChoices on February 1st; those receiving Social Security benefits will be forced into the plan on July 1st.
Most of those who already belonged to one of the Medicaid HMOs under the state's previously voluntary program have chosen to remain with those plans, even if their doctors have not.
Demonstrators also demanded that the state enforce a common "quality standard of HIV care" to be followed by each of the HMOs, and that it develop, with the help of AIDS specialists, a definition of "experience" in determining who can provide competent HIV care to HealthChoices participants. DPW did not respond to these issues at the protest. A joint committee involving AIDS specialists and medical staff of the HMOs has been discussing these issues in recent weeks, following a request from city health commissioner Estelle Richman that the HMOs work with the Working Group on HealthChoices and HIV on the subjects.
The HMOs also agreed at that time to work with a consumer advisory group, which was scheduled to hold its first meeting on February 7th.
The three-hour demonstration led by We The People included a protest in the welfare office at Broad and Bainbridge Streets, rallies and a "die-in" which blocked traffic briefly on both streets, and an "invasion" of the Catharine Street office. At that office, demonstrators moved throughout the facility asking each employee whether they had the list of doctors which DPW had refused to release, threw around packets of blank welfare forms, and overturned bookcases during their visit.
Goldfein, senior staff attorney at the AIDS Law Project, noted that the physician list provided by DiLeo was an earlier, unverified version of a more complete list issued by the Law Project last week, and cautioned that DiLeo's list included doctors no longer practicing, some who do not regard themselves as AIDS experts, and some are not taking any new Medicaid patients.
DiLeo told the Inquirer that he had been unaware of the AIDS Law Project list. Marilyn Eckley, a Welfare Department official involved in HealthChoices, said the state had just received the list and had not had a chance to review it. She said she was unaware of inaccuracies in the other document. {The updated list of experienced HIV/AIDS physicians is available from Critical Path through We The People's web page, http://www.critpath.org/wtp.}
State officials have rebuffed activists' demands for a list of AIDS experts in each of the four HMOs taking part in HealthChoices. Welfare officials say that the HMOs fear that such a list might drive doctors away from treating AIDS patients, according to the Inquirer.
Fair, who led the protest, said that people with HIV/AIDS had a legal right to the information despite these concerns. "Every study, every government agency responsible for AIDS care, has emphasized the fact that people with HIV live longer and healthier when they see an AIDS-experienced doctor," Fair said. "Neither DPW nor the HMOs has a right to make it harder for people with HIV to find doctors who can keep them alive."
"We're being asked to accept poor quality care from inexperienced doctors who are given no direction on what kind of care we need," said Joe Cronauer, executive director of We The People. "HealthChoices won't even define what 'experience' is."
"If the state can't even tell us where the AIDS doctors are, what kind of choice does HealthChoices provide us?" said Linda Smith, a woman living with AIDS who is chairperson of the board of We The People. "If they can't give us experienced doctors, the only 'choice' in HealthChoices will be to die."
"DPW and the HMOs are trying to put every conceivable obstacle in the way of people with HIV so that they don't get the care they need," Fair charged. "Every person with AIDS who sees a HealthChoices doctor will result in a financial loss for the HMO," he said, noting that Pennsylvania has among the lowest Medicaid payment rates in the nation. "This is all about de-marketing -- if we don't get the care, the HMOs make money and the state saves money."
"The future has never been brighter for people with AIDS," Cronauer continued. "New drug treatments hold great promise for making AIDS a manageable disease that no longer needs to threaten our lives. Death rates in New York and other cities are dropping dramatically, not only because of new treatments, but because federal, state and local governments have recognized that the best way to keep people out of the hospital is to provide them direct access
to high quality care. But Governor Ridge and the Welfare Department have decided that Pennsylvanians with AIDS don't deserve that benefit. To them, we simply don't deserve to live."
Several studies have shown that when a person with AIDS gets their care from an AIDS
specialist, they utilize fewer expensive hospital services and generally live longer and healthier lives. A report released last week indicated that better access to care from experienced doctors led to a 30% decrease in the number of AIDS deaths in New York City, and similar data has been reported in other American cities and in Canada. In Philadelphia, the death rate has hovered around 60%, unchanged for over sixteen years.
"HealthChoices is a direct attack on the right to life of people with AIDS in Pennsylvania," Cronauer said. "The state has ignored directives from the federal government to fix Health-Choices so that it works for us. The state and the HMOs have lied to us that they would work to make sure we knew who our doctors were, establish a quality standard of care, assure us access to experienced specialists. They've said over and over that they will take care of these issues but they have not."
"Despite Governor Ridge's hope we'll all just die away, we're here to tell him we won't. This demonstration will be the first of many and ever angrier efforts to defend our right to simple, basic health care. We may not be able to stop HealthChoices, but we intend to make it as painful for them to implement as it is for us to survive under its provisions."
Until DiLeo's commitment at the protest, the state was requiring people with HIV to contact each HMO on their own to try to find a doctor experienced in AIDS care.
"We have had requests from all the HMOs not to publish the lists," Fritz, the DPW spokesperson, told the Inquirer. Fritz said that AIDS doctors themselves had also requested anonymity for fear that they would lose patients with other illnesses if they are publicly identified as AIDS experts.
Benova, Inc., has been severely criticized by AIDS activists and other public health advocates for its inability to help people with HIV and other Medicaid recipients overcome obstacles in HealthChoices on choosing an HMO or finding competent doctors.
"They're not reaching enough people," Louise Brookins, director of the Philadelphia Welfare Rights Organization, told the Inquirer. "There will be many folks by [the deadline] who will be in the wrong HMO," she predicted, meaning that they might lose their own doctor or favorite hospital.
"We're very pleased with the number of people we have enrolled," said Peg Dierkers, the Welfare Department's policy director. Dierkers is the former director of the South Central AIDS Assistance Network in Harrisburg.
Benova began enrolling Medicaid recipients into managed care on Oct. 22. The company has transferred about 45,000 people from the old insurance system, which paid doctors by the service, into one of the four HMOs, which get a flat monthly fee for care. The company transferred 93,600 more people from one HMO to another, while 242,000 Medicaid recipients opted to remain in their current HMO.
The Inquirer also reported that Welfare Secretary Feather O. Houston sent a highly critical letter to Benova early January, and two top regional managers later left. DPW officials now say the Portland, Ore.-based company has reached more Medicaid recipients than officials thought possible.
Houston wrote her critical letter in early January, but has refused to make it public.
"We had some major concerns" about the number of people Benova was reaching and the information it was providing, welfare spokeswoman Fritz said. "We were very strong and direct."
Despite the state's assurances, advocates say many problems remain unsolved. For one, advocates have complained for months about Benova's distribution of a HealthChoices pamphlet that incorrectly counsels clients to wait 30 days to file a grievance about their care. Such complaints should be filed immediately, said Ann Torregrossa, director of the Pennsylvania Health Law Project.
A Benova manager said the pamphlet had been rewritten and was awaiting state approval for distribution. The incorrect pamphlet, meanwhile, was still being handed out as part of enrollment packets last week.
Benova 20 benefits consultants handling calls to its central Philadelphia office. Callers also can be routed to 26 Benova consultants sitting in each of the region's 26 county assistance offices and to 13 employees in Benova's operations in Connecticut and Oregon.
According to the Inquirer, Benova's 59 operators have been flooded with as many as 4,000 calls a day from local recipients. For two days in December and two in January, the network was overwhelmed to the point that even message boxes were full, said Benova officials, adding that the lines -- which had received 94,614 calls to date and got 39,658 in January alone -- are open and accessible most days.
Interviews by the inquirer with former and current operators indicate that the average call to Benova lasts about six minutes, which, critics say, is too short for a thorough comparison of plans. Clients need to learn, among other things, that they can mostly pick vision and dental providers but will need their doctor's approval to get mental-health and emergency care through the network they choose.
"At a minimum, you need a good 20 minutes, preferably face to face, to understand the changes we're talking about here," Torregrossa said.
She and others have suggested that officials could have launched HealthChoices by explaining the health-care changes face to face when welfare clients came into county assistance offices for their six-month evaluations.
"One irony of Benova's operation is the employment status of its phone operators," wrote Inquirer reporter Karl Stark on February 2nd. "Temporary employees, the operators advise clients on medical benefits that they themselves lack. And they will lose their jobs when the current enrollment winds down."
Cheri Jasinski, Benova's director of quality assurance, said the operators may be rehired when Benova gears up to enroll disabled and mentally ill welfare clients by July 1 under the second phase of HealthChoices.
Commission controversies continue
Growing complaints about the planning process of the Philadelphia EMA HIV Commission and increasingly angry debate about its all-white leadership continued this week as the struggling Commission faces a complex series of tasks in the coming months. The Commission is the formal Ryan White CARE Act Title I Planning Council, responsible for the allocation of almost $15 million of federal funding for AIDS direct care and prevention services in the nine-county Philadelphia Eligible Metropolitan Area (EMA).
Several weeks ago, the Commission -- which is supposed to be representative of the demographics of the Philadelphia area epidemic with regard to race and other factors -- elected two white co-chairs, defeating the candidacy of the one non-white candidate for one of the positions after nine ballots by a single vote. The evenly-divided Commission has previously elected only whites to its two official subcommittees -- the CARE Committee, which discusses priorities for AIDS direct care services, and the HIV Prevention Community Planning Group, which determines funding priorities for AIDS education activities in the region.
Last week, one of the CARE Committee co-chairs, Julie Davids, resigned from her post, asking that the Commission appoint an HIV+ person of color in her place.
Informal proposals by city officials to add a third co-chair to the Commission with the aim of placing a person of color in the post have not been received well by African American and Latino Commission members, who have complained that such a solution amounts to "tokenism" and does not respond to what they call the basic problems around race which have plagued the Commission since its start.
The Commission has also been criticized for appointing people of color to only 45% of the Commission seats, even though city Health Commissioner Estelle Richman stated when the Commission was formed that its membership would accurately reflect the racial demographics of the epidemic in the region. Over 70% of recent AIDS cases have occurred among people of color, and the federal Health Resources and Services Administration (HRSA) has projected that over 70% of those actually living with HIV disease in the region are people of color. City officials have sought to set the demographic quotas on the basis of cumulative cases of diagnosed AIDS since 1981, which counts over 4000 Philadelphians who have already died and which, critics say, has the effect of giving extra weight to communities which were hit hard by the early AIDS epidemic but have seen decreases in incidence over the past six years.
Sources told fastfax that leading black elected officials in Philadelphia -- including City Council President John Street, State Sen. Hardy Williams and others -- have also contacted the Mayor and HRSA officials to express their dissatisfaction with how the Commission is handling complaints about racial discrimination in its own processes and in the allocation of federal AIDS funds.
An open letter released by Gerald Wright, associate director of the Minority AIDS Project of Philadelphia and Vicinity, said that the Commission's disputes over racial representation make it "apparent, obvious, crystal clear that something is broken."
"The EMA HIV Commission does not work," Wright charged in a letter sent to Commission members and elected officials throughout the region. "The Commission as a whole has proven that it is not concerned with African American leadership, even in light of nearly 70% of new AIDS cases being reported among African Americans. It is time that the Commission look at itself or be forced to look at itself in a realistic light."
Wright noted that "African Americans and others, including whites, have attempted to work together to generate a fair and representative process prior to the election of co-chairs...Yet, when the rubber hit the road, when the election was held, the EMA Commission split almost evenly when voting for a qualified and appropriate African American candidate."
"After nine run-off votes, the elected was decided by an abstention," Wright wrote. "Nowhere would people of good conscience accept that as a legitimate way to decide such a controversial matter. Only a broken process would allow something like that to happen," he said.
Wright noted that "many wonder why so many African Americans who have attempted to participate in this process have called for an African American Planning Process. Those same individuals wonder why there is a need for an African American Caucus. Yet, the same individuals can not vote one African American into a leadership position with the EMA HIV Commission."
Wright commended Davids for "her sensitivity" and called her a "person of conscience." However, he said, "her resignation does not fix the problem. It's fallen and may not be able to get back up."
Robert Capone, a white, HIV+ Commission member, also sent an open letter to African American Commission members this week, saying he shared their "frustration and dismay over the recent election of co-chairs for the Philadelphia EMA HIV Commission. I feel as probably most of you, that the outcome of the election is another glowing example of the insensitivity and racism that has plagued the planning process in this region for far too long."
Capone said that he believes that the controversy could be "the beginning of the end of the Commission. As a matter of fact, I would not blame any of you if you decided to pull out of the process and continue your own efforts to assure that proper planning for the African American Community is undertaken."
"However," Capone continued, "I would plead with you to be patient and not give up on us yet. I feel strongly that as dysfunctional as things are at present, it is still much better than the way things were just 2 years ago. Despite the ignorance and stupidity of the election, the Commission has made great strides over past planning counsels. It has, in only its first year recognized the importance of African American participation. It's actually, finally in writing. It is comprised of at least 50% consumers. This too is a major improvement over previous planning counsels, but yes there is still obviously a long way to go.
"It is my belief that we can still salvage the commission if we work together. Not all of us are racist, and I believe that there our other reasons that the election went the way it did aside from racism. I honestly believe that we should consider the possibility that this is a blatant attempt to destroy the process by the providers and bureaucrats that wish to maintain the status quo, and I feel we must not allow that to happen."
Capone said that he believes the disruption of the Commission process is related to the fact that "we finally got together long enough to rearrange the priorities and it has been quite obvious to me that many of the providers and the city's AIDS office aren't too happy with them. He said he believed that the city officials would attempt to use bureaucratic measures to undermine the Commission's priorities, and "if they can keep us fighting amongst each other and as a result have to start all over with another planning council, then things get to stay the way they want for another year or more."
Capone said that he, too, often leaves Commission meetings "feeling so frustrated that I consider quitting, but then it occurs to me that that is exactly what they want, and I'll be damned if I'm going give them what they want. I'm going to remain a thorn in their sides until they do the right thing for all those affected by HIV/AIDS as they are supposed to do.
Capone asked the African American Commission members to "join me in spiting those who would prefer that we all go away."
Issues unrelated to the Commission's leadership crisis have also begun to cause division among Commission members.
Some Commission members are concerned that the city will be unable to spend its Ryan White allocation for 1997 according to the Commission's approved priorities because of delays in the planning process, and the fact that some contracts have already been renewed and new contracts are scheduled to begin in less than seven weeks. A proposal to charge a fee to any individual or group who files a complaint about the Commission's activities has also drawn intense criticism, especially among low-income people with HIV, who comprise almost half of the Commission's membership.
ACT UP reports on retroviral conference
ACT UP Philadelphia will sponsor a forum reviewing treatment information garnered from the 4th Conference on Retroviruses and Opportunistic Infections, held January 22-26 in Washington.
Called "A Challenge to Survival," the forum will be held on Monday, February 17 at 7 pm, at the Church of St. Luke and the Epiphany, 330 S. 13th Street, between Spruce & Pine Streets, in Center City, Philadelphia.
The forum will feature remarks from Paul Davis, a leading treatment activist from ACT UP, who attended the Conference on behalf of the group; Jay Kostman, MD: Medical Director, Philadelphia FIGHT and a community- based researcher and HIV specialist at Temple University Hospital; Kiyoshi Kuromiya of Critical Path Project, a Levine Panel member and primary author of the ACT UP Philadelphia HIV Standard of Care; and Asia Russell, ACT UP Philadelphia Women's Standard of Care Coordinator. The event will be moderated by longtime activist Anna Forbes.
ACT UP said that the "Conference was one of the most important meetings on HIV/AIDS research to date. It was also one of the most severely restricted, with thousands of people living with HIV, activists, researchers and press turned away."
According to AIDS Treatment News, at least 15 security guards, many of them flown in from San Francisco, blocked 17 people with HIV who came to the Sheraton Washington Hotel in Washington hoping to replace last-minute no-shows and attend scientific and treatment discussions at the Conference. Guards also threatened to expel or arrest persons distributing flyers to conference participants or the press asking that future conferences be open to those with HIV -- or informing activists of a post-conference meeting to discuss a national strategy to address growing problems in expanded-access programs. Conference organizers did provide open video feed from one of often five simultaneous sessions, as well as allowing access to the poster hall when posters were available for viewing but not being presented.
ATN said that the official waiting list of researchers and physicians who also were denied attendance was approximately 500, but there is reason to believe that many more people were actually turned away. Some of the nation's leading AIDS research physicians -- as well as the Chair of the Presidential Advisory Council on HIV and AIDS -- were among those who tried to go but could not get in. Some applicants never heard back after they faxed their initial application -- and unless they called within about two days of the official opening date and learned that there was no record of their application and they had to send the paperwork again, it was usually too late.
One of the many press restrictions was that faxed newsletters reporting from the conference with pharmaceutical-company support were prohibited. This affected many physicians, whose patients ask about treatments in the news; without daily medical reports from an ongoing conference, it can be hard to get in-depth information quickly.
The annual Retroviruses conference was started at the request of Federal agencies (the National Institutes of Health, and the Centers for Disease Control and Prevention), and has in fact become the U.S. national AIDS conference.
ACT UP says its forum will feature "life-saving information from behind closed doors from local activists and community-based doctors who went to the conference last month." They said that abstracts-on-disk will also be available, and refreshments and SEPTA tokens to help with transportation will be available. For more information, call 215-731-1844.
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