published by We The People Living with AIDS/HIV of the Delaware Valley, Inc.
PWAs speak out against HealthChoices
Prognosis "guarded" after meeting with DPW
AIDS pain 'dramatically undertreated'
New ACT UP care standard available
PWAs speak out against HealthChoices
Close to a hundred people living with HIV/AIDS and their allies demanded a delay in enrollment of PWAs in the state's Medicaid managed care program, HealthChoices, at a hearing before representatives of the Health Care Financing Administration (HCFA) and President Clinton's National AIDS Policy Office on November 15th.
Rachel Block, an administrator of the regional HCFA office, and Jeff Levy, the outgoing deputy for AIDS policy at the White House, attended the hearing along with other HCFA officials.
A coalition of people living with HIV disease, AIDS service providers and other advocates have called for a delay in the enrollment of people with HIV/AIDS in HealthChoices until the state addresses a variety of concerns they have about access, quality of care, and medical standards.
"Today we are six weeks away from the implementation of HealthChoices, which, despite assurances, has not one single safeguard in place to protect people living with HIV and AIDS whose very lives will depend upon the quality of this health system," said Joe Cronauer, executive director of We The People, told the hearing.
"Even though the state has said that every HMO will provide HIV specialists, the state still can't even define what an HIV specialist is. Even though the state has said that every HMO will provide HIV specialists, not one HMO contacted could identify one HIV specialist for a person forced into entering a plan. Not one HMO. Not one HIV specialist," Cronauer said.
"Even though we know by scientific studies that quality medical care leads to longer life for people living with HIV and AIDS, there is no standard of care built into HealthChoices. Even though we know that health care for those of us living with HIV and AIDS costs more than health care for healthy people, the state has not provided for a higher level of dollars to be used for the care of people living with HIV and AIDS. So when we need that CAT scan, too bad. When we need that protease inhibitor, too bad. When we need to stay alive, too bad."
The meeting was chaired by Linda Smith, a woman living with AIDS who serves as Chairperson of the We The People Board of Directors, and James Roberts, executive director of the Minority AIDS Project of Philadelphia.
"What we need to do is delay the enrollment until we find out whether this will work," Smith said in opening the hearing. "I have a doctor who I love dearly, and this goes forward and you don't give me the doctor that I have, I'm going to be a very unhappy camper. I trust my doctor. I confide in my doctor. He's not only my doctor but he's my friend. I would hate to think that someone that someone else thinks they can choose for me who's the best doctor for me."
"I think its appropriate that most of the people in this audience are people of color," Roberts added, "because if this plan were to go through as designated, most of the people affected by and perhaps killed by this will be people of color, primarily African Americans.
We're spending too much time thinking about how much money can be saved instead of how many people it will kill."
The hearing began with an overview of the concerns of people living with HIV/AIDS from David Fair, former executive director of We The People and the founder of the city health department's AIDS Activities Coordinating Office. Fair represented a coalition of over 25 organizations serving people living with HIV/AIDS who have formed the Ad Hoc Coalition on HealthChoices, which has been attempting to work with the state Department of Public Welfare in resolving HealthChoices problems in AIDS care.
"For years -- literally, years -- we have worked with the Pennsylvania Department of Public Welfare in the hope they would listen to us," Fair said. "Unlike what we hear from Harrisburg, our ideas and proposals mean that HealthChoices, at least in terms of care for people with AIDS, can make their plan more cost-effective and responsible. But for reasons that defy the state's expressed objectives for HealthChoices, we have been ignored every step of the way.
Fair continued, "We know, now, that Governor Ridge and his Welfare Department staff have no sincere interest in protecting the lives of people living with HIV and AIDS in their mad rush to pretend they're saving the taxpayers' money.
"Only you can help us," Fair told the HCFA officials. "Only you can require the state to take its time in working out the details of HealthChoices so that it actually works the way they pretend they want it to work. Only you can prevent Governor Ridge, Secretary Houstoun, and the thousands of other nameless bureaucrats working on HealthChoices, from requiring us to sacrifice our lives and our futures on the altar of their bureaucratic ineptitude and cold-hearted calculations.
Fair noted that the state has mis-led federal officials on its efforts to accommodate the special needs of people with AIDS in HealthChoices.
"I know that in your travels you've probably heard hundreds of horror stories about people who fall through the safety net in the shifting of health care costs from government budgets to private pocketbooks. Maybe ours are the same, maybe they're worse, I don't really know.
"What I do know is this: HealthChoices is already underway, has been for six weeks, and people with HIV and AIDS still can't even find out which doctors are available to provide them care. Even though the Dept. Of Welfare tells you they can.
"People with HIV and AIDS are unable to choose AIDS specialists as their primary care physicians, even though the Commonwealth has told you they're allowed to.
"People with HIV and AIDS have been provided no guarantees that any of the doctors available to them through HealthChoices will have any experience in providing AIDS care -- even study after study has shown that life expectancy for a person with AIDS is directly related to the experience of the physician who treats them. But the state has mis-led you into thinking that they are making sure that there are experienced AIDS doctors in each HMO.
"Even doctors who are willing to care for people with HIV and AIDS have no reasonable standard of care in delivering their services, even though the state has told you they do.
"HMOs have no way of paying for the higher costs of care for people with HIV and AIDS, even though the state has led you to believe that its financing strategies provide for that.
"No performance measures -- none -- have been set up by the state to evaluate the quality of care people with HIV and AIDS will receive under HealthChoices, even though the state tells you those standards are in place.
"'Benefits counselors' have not been provided even the most basic information about how to make HealthChoices accessible to people living with HIV and AIDS, even though the state has told you they know what they're doing.
"No effort has been made to coordinate HealthChoices services with the millions of dollars in federally-funded AIDS services supported through the Ryan White CARE Act, even though the state promised you they would do so.
"And people with HIV and AIDS who live in despair-ridden poor neighborhoods, and especially those who live in suburban areas, have been given no chance to find an AIDS doctor, qualified or unqualified, even though the state has pledged to you that HealthChoices providers will be accessible to all eligible people wherever they live.
"People with HIV and AIDS have been given no information about how they can even complain about this abuse, even though the state has provided you with reams of paper on its supposed grievance and complaint procedures.
"Think about it. The major health insurers for over 70% of people living with HIV disease in southeastern Pennsylvania can't even tell us who their doctors are, where they practice, whether they have AIDS experience, or whether anyone will take the time to tell them what appropriate treatment for a person with AIDS is. The HMOs say they don't know. The 'benefits counselors' say they don't know. The doctors that people with HIV and AIDS already are seeing often don't even know whether they're still going to be able to see them or not come January 1st.
"The commitment the state is keeping is that they will force people with AIDS into certain plans and to certain primary care physicians anyway, competent or not, in less than a month, even though they never gave them the chance to make the selection themselves. The chance they told you they were providing to all of us.
"The bottom line is that the Pennsylvania Dept. Of Public Welfare is lying to you, lying to us, lying to the people it pretends it's there to help. They've told you things are happening -- but they're simply not happening. They're hoping that you will ignore us and give them their waiver with no strings attached so they can continue to abuse us, because they know that we, alone, can't stop them. They said that they would be careful in implementing HealthChoices to make sure they had ironed out as many of the bugs as possible before going forward. But they haven't even tried. It's just another lie. That's not an exaggeration, and that's not complicated.
"It's a simple, bald-faced, arrogant, life-threatening, lie."
Jane Shull, executive director of Philadelphia FIGHT, the local community-based AIDS research initiative, told the HCFA officials that "Right now, compared to a year ago, we have 3TC, the three protease inhibitors and soon a fourth, the beginning of widespread availability of viral load testing, which allows people with HIV and their physicians to know very quickly whether the combination of these drugs is working. And we know that viral load does correlate with survival. So we probably have better drugs, and better tests to know if the drugs are working, all at the same time. And in fact, we know anecdotally, compared to only a year ago, fewer people are getting sick. We've all seen people who we thought we would never see again, come back. There's an eerie silence in the hospitals; even the Wall Street Journal is covering it.
"For the first time, people with AIDS are thinking that maybe they have a future.
People are talking about eradicating HIV. You hear all the time that levels of the virus can go down to undetectable levels in the peripheral blood That doesn't mean it's gone, we all say, but that's certainly a lot better than anything that has happened before. So this nightmare may end. We're now, for the first time in a place where people are beginning to think that this nightmare may end.
"Just when that may happen, just when that may happen, the Commonwealth of Pennsylvania, says: Not for you, not for you."
Bonnie van Uitert, M.D., a physician at Presbyterian Hospital, discussed the difficulty she faces in arranging appropriate referrals for her patients under existing Medicaid managed care plans, "because the HMOs lose money every time they make a referral" outside the plan. She said that there were serious practical problems in a system which requires a person with a chronic illness to have to run back and forth between the primary care physician's office and labs and specialists. "Some of the commercial HMOs have gotten past that point but the Medicaid ones have not."
"This is a special problem with getting viral load tests," van Uitert said, "because many of the PCPs haven't done that before and it can sometimes take several months to get the results back."
"Patients are sometimes shipped out of emergency rooms because the HMOs never got around to getting a contract with the hospital where the PCP works, she said. "And then the patient winds up in a hospital where nobody knows them from Adam, where they don't have any records on them, and we never hear from them again.
"Sometimes patients are shipped to other hospitals only because the HMO has a more financially advantageous contract with the second hospital.
"The most frustrating thing of all is the way that the HMOs move people in and out of the hospital regardless of their condition, because they don't have doctors who actually know them and can follow them and make sure that they have the medications and treatment that will keep them healthy. It means that people keep getting sick, do much more poorly, keep getting new infections, and wind up costing much more money to care for."
"Letting a patient have access to a physician they want to see, who has experience, who keeps up with the new medications and treatments, is the only way to make this work for both the patient and the HMO," van Uitert said.
Ted Kirk, Ph.D., a psychologist who until recently served as co-chair of the region's HIV Commission, said "I want to speak to you, I want you to listen to me, because I am a person with AIDS.
"I must speak out strongly against the way DPW has attempted to not take seriously the needs of people with HIV infection and AIDS under HealthChoices.
"DPW says that it will take 'two or three' years before they can come up with a plan to pay for AIDS care. I find that personally appalling. Two or three years might be all I have left. I know that won't be true under HealthChoices.
"While you consider your data, we are dying. Under managed care, AIDS is simply too expensive for you to consider, and you'd rather let us die off. Well, that will certainly solve your problem.
"From the beginning you should have talked to us. You should have talked to people with AIDS about their medical needs and not considered the question for an additional two or three years before you do something about it.
Julie Davids, the director of Project TEACH, a program which helps people with HIV/AIDS teach each other about their treatment options, told the hearing that "People come into our program with genuine horror stories. Like the primary care doctors who write out scrips for AZT monotherapy and tell them to take it or they're gonna die. And this happened not in 1988, in 1991, or 1993. This happens in 1996.
"HealthChoices makes it all but impossible for people to take control of their health care so they can live longer and better with HIV.
She described a recent stories she has heard from HIV+ women whose children are HIV-infected regarding their difficulty in obtaining even uncomplicated AIDS treatments. "Someone has decided the new rule in HealthPass [a HealthChoices HMO] is that you can only get a Bactrim prescription for two weeks at a time. I've heard from at least three women, whose kids have HIV, whose kids have lived to be six years old taking Bactrim every day of their lives to stop them from getting PCP. How is a mother that's living with the virus herself, why does she have to go out every two weeks, to find a pharmacy to get this prescription filled, to find the child care, to find the transportation, for a drug that costs $7 a month. What are these HMOs for the treatments that cost more? I don't want to find out three years from now, because we know what the answer is: needless death."
"HealthChoices cannot enroll people with HIV until we know we can get a doctor who knows what they are doing, until enough skilled, HIV-experienced doctors have signed up with HMOs, and that we can quickly see out-of-plan doctors if we need to," added Jose DeMarco, of We The People and ACT UP. "The state has refused to require a minimum standard of care, so what we end up with is too few doctors, hardly any with HIV experience, providing substandard care to lots of people with HIV."
Karen Lyons of We The People shared with the group her own experiences with Medicaid HMOs.
"My first experience with Medicaid HMOs was Mercy Health Plan. I was told they were the best. My first experience was when I went to the hospital at night time, I had a bad fever and couldn't walk, I was on crutches, and they told me that I had to wait till the next day so I could see my primary care provider. I didn't even know I had a primary care provider. They sent me home, but I had to walk, because they couldn't get me transportation. That was my first experience with a Medicaid HMO.
Lyons continued, "I left Mercy and I went to HealthPartners. HealthPartners would not allow me to see my ob/gyn doctor the way I needed to, regardless of the fact that I had female problems way before I tested HIV-positive, regardless of the fact that I had three abnormal pap smears, that didn't mean anything, and my primary care physician was on vacation for three weeks, and when I inquired who was handling his caseload, I was told that if I hang around all day, maybe someone can get to you. This has been my experience with Medicaid HMOs.
"I've had two bone biopsies, four days ago I just had a more extensive bone biopsy to remove some pre-cancerous tissue. Had I not switched back to Access [fee-for-service Medicaid], because HealthPartners was denying me, told me I could not go to see the specialist, I could not have been able to get to the doctor I believe in and who was willing to see me whether or not he got paid, but not many doctors will do that.
"What the government is doing is sending a clear message: that they don't care about poor, low-income people of color, who may be drug-addicted, who may have AIDS. I just have one thing to say in response: if HealthChoices goes through the way it is, the revolution will be televised," Lyons concluded.
WTP Life Center director Curtis Osborne told of how he had received a free apple from an HMO as part of its marketing plan to sign up new members. He said it reminded him of his mother telling him as a child to eat his apples, because "an apple a day keeps the doctor away."
"So maybe the point, with Medicaid managed care, is that after the apple is gone, maybe we need to take the seeds, and plant a tree, so we can continually have an apple a day." Osborne said. "Because if they continue to do what they want to do to people who are HIV-positive, with this HealthChoices thing, I, personally, would rather put my trust in this apple a day, rather than put my trust in my health in someone who doesn't know anything about AIDS."
Federal officials were not hopeful that they would be able to force the state to delay enrollment for people with AIDS prior to the formal opening of HealthChoices on January 1st, but indicated that they would encourage the state to modify current plans to resolve some of the more pressing crises identified at the hearing.
(A transcript of many of the comments delivered by people with HIV/AIDS and AIDS service providers at the HCFA hearing will be published in the December issue of We The People's newsletter, Alive & Kicking!)
Prognosis "guarded" after meeting with DPW
Nan Feyler, executive director of the AIDS Law Project of Pennsylvania, said that she and other advocates are "guardedly hopeful" after a meeting with state Department of Public Welfare officials held only five days after a public hearing with the Health Care Financing Administration demanding major reform of HealthChoices before people with HIV are forced to enroll.
While few specific commitments were made, Feyler said that DPW's policy director, Peg Dierkers, and other DPW officials "seemed supportive" of various specific proposals being made by the Ad Hoc Coalition on HealthChoices to modify the more immediately negative impact on HealthChoices as it nears formal implementation on January 1st.
In addition to Dierkers, DPW was represented at the meeting, held in Harrisburg, by Christopher Gorton, DPW's medical director, and Carol Ranck, who is responsible for DPW AIDS policy, as well as other DPW officials. The coalition was represented by Feyler and Ronda Goldfein of the Law Project, Linda Smith, board chairperson of We The People, Mark Davis, consumer co-chair of the Philadelphia HIV Commission and a board member of We The People, Ann Torregrossa of the Pennsylvania Health Law Project, and Paul Davis of ACT UP, among others.
According to Feyler, DPW agreed to immediately develop, with the help of the coalition, an "interim" definition of the criteria for an HIV specialist, and to immediately conduct a survey of the HealthChoices HMOs to determine which doctors fit the definition and the number of patients with HIV they have the capacity to care for. She said that DPW will publish this information as soon as possible. Gorton, the DPW medical director, said that he believed that many doctors would not want to be listed as providing HIV care because of their fear that they would attract too many expensive and difficult-to-treat patients.
Torregrossa suggested that DPW publish a special needs directory that would include a method for identifying doctors providing AIDS care, if it proved too difficult to include the identification in the HMOs general directories.
DPW also agreed to survey HMO doctors to determine how many would be willing to participate in a special mentorship program, being developed by the Pennsylvania AIDS Education and Training Center, which would help them build their knowledge of HIV care.
Feyler said that state officials also seemed amenable to the creation of an HIV Medical Advisory Committee, which would be comprised of HIV specialists and people living with HIV disease, to develop a more complete definition of an HIV specialist as well as set standards of care and quality assurance measurements. In the interim, she said, the group asked DPW to adopt a standard of care written by John Bartlett, M.D., of Johns Hopkins University, which is nationally regarded as a high-quality standard of care.
Feyler said that neither HCFA officials, meeting in Philadelphia last week, nor DPW officials in Harrisburg, seemed supportive of delaying enrollment formally for people with HIV/AIDS in HealthChoices. However, she said, both agencies seemed willing to consider allowing some people with HIV/AIDS to remain in fee-for-service arrangements if their current provider is not part of the new HealthChoices system, using a definition developed in New York which allowed such "opting out" in situations where a patient would suffer a dangerous "interruption of care."
Feyler said that DPW also remained firm on refusing to establish a special capitation rate for AIDS care, which advocates have demanded because of their belief that HMOs will be discouraged from providing quality care because it is more expensive. DPW is willing to consider establishing a pool of funds to be used to cover additional care or an enhanced payment arrangement between the HMO and HIV specialists, she said.
Feyler said that while the Harrisburg meeting did not cover significant complaints about the HealthChoices complaint procedure, state officials informed the group that they were establishing a "temporary" complaint office to handle grievances.
Feyler said that DPW officials informed the group that they were working on a revision of rules which are supposed to allow an HIV specialist to be appointed as an individual's primary care physician. DPW officials recognized that this procedure, which is supposed to already be in place, has not been working for most people with HIV/AIDS.
Meanwhile, a small group of advocates have reported that they have been contacting HMOs to ask for information on HealthChoices in Spanish and Asian languages, in response to DPW's contention that each HealthChoices HMO is required to assure "culturally and linguistically appropriate access to services." Yoshi Yamasaki, a case management supervisor at Congreso de Latinos Unidos, said that one HMO hung up on him and another referred him to his own agency for information. Ronald Sy, of AIDS Services in Asian Communities, said that he was unable to obtain any information from any of the HMOs he contacted.
AIDS pain 'dramatically undertreated'
Although AIDS and cancer patients experience comparable levels of pain, pain is "dramatically undertreated" in AIDS patients, according to Dr. William Breitbart of the Memorial Sloan-Kettering Cancer Center, who reported the results of a study he conducted in the Journal of the American Medical Association.
"The problem may be partly attributed to the rise in managed care, since many primary care physicians have little training or experience treating chronic pain," Breitbart said.
In addition, doctors treating AIDS patients--as well as the patients themselves--may be more focused on other problems, like opportunistic infections, he said. AIDS-related pain is much more common and often more severe than doctors realize, affecting even patients in the early stages of disease.
Many doctors do not prescribe effective remedies for HIV-related pain, and Breitbart's study found that only 15 percent of patients with AIDS-related pain receive adequate analgesia. Pain experts say this may be due to fears that strong pain medications could be addictive. Moreover, neuropathic pain syndromes, often caused by antiretroviral drugs, are responsible for the pain and must be treated with more sophisticated strategies than other pain. Current guidelines for treating AIDS-related pain are published in the "Clinical Practice Guidelines: Management of Cancer Pain" and a booklet called "Pain in HIV/AIDS."
New ACT UP care standard available
ACT UP/Philadelphia has issued its tenth version of an HIV Standard of Care, originally conceived by the late Jonathan Lax to "help insure individuals are getting a minimum level of care to maximize quality and length of life with HIV disease."
"This is a minimum standard," the group said. "Some PWAs are demanding and getting a higher level of care when they demand it from their clinicians. Having an HIV-experienced doctor correlates with better quality of life and better survival rates."
They cautioned that the AT UP Standard of Care is for adults, since children need a different standard due to different immunology threshold.
Copies of the standard are available at no charge from ACT UP by calling 215-735-1845, or by visiting the Critical Path AIDS Project web page at www.critpath.org.
Leonard West dies at 58
Leonard West, a long-time community and AIDS activist whose varied career led him from building a library in Nigeria to forming some of Philadelphia's leading AIDS organizations, died from complications related to AIDS on November 20th at Pennsylvania Hospital. He was nine days short of his 59th birthday.
West, a former teacher in Philadelphia public schools, was among the founders of We The People Living with AIDS/HIV of the Delaware Valley, and the Philadelphia AIDS Consortium. As an AIDS activist since the mid-1980s, West served on We The People's Board of Directors since 1988; the AIDS Consortium Board of Directors; and as a board member of Betak, the region's first nursing home for people with AIDS; MANNA, which provides daily home-delivered meals to homebound people with AIDS; and Philadelphia FIGHT, which conducts AIDS-related community-based trials of experimental AIDS drugs.
With other members of We The People, West established one of the first outreach and education efforts conducted by people living with HIV/AIDS themselves, in 1989, and he was a regular contributor to We The People's award-winning monthly newsletter, Alive & Kicking!
An advocate for new and alternative treatments for AIDS, West also served as a member of the Community Advisory Board of the AIDS Clinical Trials Group in Philadelphia, and as a member of countless ad hoc and planning groups related to AIDS services in the southeastern Pennsylvania region.
"Few Philadelphians have had the impact on the quality of life of people with AIDS that Leonard did," said David Fair, another long-time Philadelphia activist.
"Back in the late 1980s, when AIDS service providers didn't think that people with AIDS should participate in the planning and allocation of resources for AIDS services, Leonard spoke up, organized and forced the AIDS bureaucracy to notice that what he called 'my community of people with AIDS' needed to be heard," Fair said.
"When the AIDS bureaucracy chose to ignore the fact that the epidemic was spreading most widely in low-income and minority communities, Leonard demanded that resources be shifted to support new organizations in the African-American and Latino communities, and dedicated his own volunteer time to helping to build programs at those organizations."
Fair noted that over ten years of leadership in the struggle against AIDS in Philadelphia, West never accepted payment for his efforts.
"Leonard kept at it longer, worked harder, and was more effective than most of us who found a way to get paid for our efforts," he said.
In addition to his AIDS-related advocacy activities, West was an active volunteer in the local Democratic Party, having served as a committeeman in Germantown for many years and as the first openly-gay delegate to a Democratic National Convention from Pennsylvania, as a Jesse Jackson delegate in 1984. He also served as one of only two openly gay men who have served on the Democratic State Committee. In both 1980 and 1982, he was a leader of successful efforts to elect over 25 openly gay or lesbian Democratic committeepeople in neighborhoods throughout Philadelphia.
West also volunteered in a variety of gay rights organizations over the years, including BWMT/Philadelphia, which sought to develop interracial harmony in the city's largely segregated gay and lesbian community, and the Philadelphia Lesbian and Gay Task Force. With the latter organization, he worked closely with his Democratic Party contacts to assure passage of the gay rights bill in Philadelphia in 1982.
West also served in the Peace Corps from 1962 to 1964, helping to establish the Government Teacher Training College in the city of Mubi.
West is survived by his lover of 14 years, Keith Brown; his mother, Dorothy West, of Florida; and two brothers, George, of Virginia, and James, of Kentucky.
A memorial service in West's honor will be held by We The People on Thursday, December 5th, at 10:00 a.m. at the Church of St. Luke and the Epiphany, 330 South 13th Street, in Philadelphia. In lieu of flowers, contributions are requested to the Leonard West Memorial Fund, c/o We The People, 425 South Broad Street, Philadelphia, PA 19147.