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Issue #161: January 25, 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 information in this issue include AIDS Treatment News, Archives of Internal Medicine, Nature, Sexually Transmitted Diseases, UPI.Advocates confront DPW head on HealthChoices
Another gene linked to AIDS progression
HIV+ tested at STD clinics often lost to treatment
Insurer sued on denial of HIV coverage
Assisted suicide "not rare" in AIDS: study
Advocates confront DPW head on HealthChoices
Fifty highly vocal advocates for indigent, medically vulnerable Pennsylvanians were on hand to greet Pennsylvania Welfare Secretary Feather O. Houstoun when she spoke at Thomas Jefferson University this week, as part of the annual meeting of the Greater Philadelphia Urban Affairs Coalition.Among the advocates were were twelve members of Philadelphia's HIV Commission, as well as members of ACT UP Philadelphia and We The People.
The demonstrators called on Houstoun to release publicly all relevant information about the per-person capitation rates set for HealthChoices, the managed care plan in which all southeastern Pennsylvania Medicaid recipients were forced to enroll last year. Contending that the rates aren't adequate to cover the cost of care, advocates also called on Houstoun to implement rate-based capitation -- a process by which the HMOs would be compensated adequately for providing care to people with disabilities, life-threatening illnesses and other special medical needs.
The majority of the demonstrators waited outside the building to confront Houstoun as she left the GPUAC meeting. A few, however, attended the meeting and posed questions to the Secretary after her presentation on :Welfare Reform."
John Bell, a member of Project TEACH and a HealthChoices consumer, asked Houstoun how she could justify the cost in lives and health exacted by HealthChoices as it is currently implemented.
"You acknowledge that mistakes have been made in Pennsylvania's welfare reform process," Bell said, "and that these are being corrected. But how can you justify bad planning where people's lives are at stake ? How do you correct the fact that disabled and medically vulnerable people are endangered when your managed care program keeps them from getting the care they need to stay alive?" Bell asked.
Houstoun did not respond to the question nor did she mention HealthChoices in the course of her remarks at the meeting.
Advocates contend that HealthChoices, as it now stands, is not capable of assuring adequate medical care to people with disabilities, life-threatening illness and other special medical needs.
"We demand that Secretary Houstoun face the impact that HealthChoices is having on people with profound medical needs," said Curtis Osborne, Executive Director of We the People, in a statement released prior to the meeting. "We are being forced to enroll in HMOs that clearly can't afford to provide the care we need. The upshot is that indigent people with disabilities are getting third rate care, and that's unacceptable," he concluded.
"The Department of Welfare won't even tell us how much they've allocated," noted Steve Peura of the Valley Forge Medical Center. "That's why we're saying 'Show Us the Money'. We want the Department to disclose publicly how much they are paying the HMO's per person per month to provide care. The most recent figures we got say that the Department's HealthChoices capitation rate for people on SSI is $350 per month. But they haven't been willing to sit down and talk with us about the real costs, the real amounts they're giving the HMOs to provide care and how this plays out in terms of the care people are actually getting," he added.
Advocates contend that this is a bottom line issue. According to studies published in the Journal of AIDS, Medicaid costs for people with HIV/AIDS ranges from $1000 to $2500 per month depending on the stage of illness. Average monthly cost for care to people with physical disabilities can reach and exceed $2000, according to a recent study published in the Health Care Financing Review. The fact that HMO's lose money each time they care for a person with costly medical needs, advocates argue, causes the HMO's to pull back from enrolling such individuals and to scrimp on care for them.
"First we saw HMOs starting to pull out of the poorest areas because they're losing money", said Julie Davids of ACT UP/Philadelphia, citing Health Partners 1997 decisions to pull out of Delaware County and two hospitals in North Philadelphia. "Now we're seeing HMOs restricting their formularies so that some people on HealthChoices can't get the medications they need. They are increasing the amount of prior authorization paperwork, denying medical supplies and putting up all kinds of barriers to care. All this has started since the HealthChoices went into effect a year ago," Davids said.
"The Department of Welfare is trying to save money on Medicaid by under-funding HealthChoices. The HMOs are cutting corners because they're losing money on their HealthChoices clients," Davids added. "And, of course, the upshot is that people whose care is most expensive are the ones who suffer. DPW knows that HealthChoices doesn't work. That's why they've delayed its implementation in Southwestern PA until 1999," she concluded.
DPW has delayed its 1998 scheduled implementation of HealthChoices in Southwestern PA until 1999 which, advocates contend, is proof of the fact that the Department knows that the system as currently designed in dangerously flawed and unworkable.
Developing higher rates for special needs populations "has been done very effectively in other states," said Anna Forbes of the Working Group on HealthChoices and HIV. "Maryland and Massachusetts, for example, have effective Special Needs Plans that allow both the state Welfare Department and Medicaid consumers to use managed care effectively.
"There's no reason we can't do it in Pennsylvania," she added. "But it won't happen while the Department is freezing us out, refusing to disclose information and refusing to acknowledge that HealthChoices as implemented is hurting people. We just want to work with them to develop a solution," Forbes added. "But until they agree to open up a dialog, we have no choice but to follow the Secretary around, bringing the problem to her attention."
The HealthChoices advocates also announced that yesterday's demonstration was the kick-off for a "Show Us the Money" campaign, in which advocates have committed themselves to being present and vocal at every Philadelphia-area public occasion attended by Houstoun until she agrees to their demands.
Another gene linked to AIDS progression
Scientists say they've found a gene may hold the key to understanding the development of AIDS and to treating the disease.They say in the British journal Nature that the so-called "nef" gene apparently plays a key role in letting cells infected with HIV evade the immune system.
The study was led by Nobel laureate David Baltimore at the Massachusetts Institute of Technology in Cambridge. He has since left MIT to become president of the California Institute of Technology in Pasadena.
Baltimore says finding out how cells infected with HIV get away from the disease-fighting immune system is vital to understanding AIDS development.
He and his colleagues found how the HIV nef protein protects infected cells from destruction by warriors of the immune system called cytotoxic T lymphocytes. These CTLs, which normally wipe out virally infected cells, recognize their targets by their display of what scientists term peptide epitopes, a kind of cautionary flag signifying trouble.
But, the scientists found, when the nef gene is around, these infected cells appear to be protected from the onslaught of the CTLs. Apparently, nef interferes with this warning system, allowing the troublesome cells to remain undetected by the armies sent out to destroy them.
Baltimore says the finding highlights the nef protein as a potential target for new therapies aimed at bolstering the CTL response to HIV early in the deadly game.
The next step, of course, is to determine whether what took place in the test tube actually takes place in people, Baltimore said.
HIV+ tested at STD clinics often lost to treatment
A major barrier to providing the appropriate follow-up services to STD clinic patients who test positive for HIV is locating them, according to a team of researchers at the Centers for Disease Control and Prevention in Atlanta, Georgia. "This difficulty in recontacting HIV-infected patients may limit the effectiveness of HIV case management by STD clinics in large metropolitan areas," they report.Dr. Peter H. Kilmarx and colleagues conducted a study to determine whether individuals received appropriate services following a positive HIV test result at an STD clinic. To this end, Dr. Kilmarx's group attempted to contact 416 such individuals who had been advised of their serostatus at an STD clinic located in large metropolitan area 6 to 24 months earlier. Their findings appear in the January issue of Sexually Transmitted Diseases.
The researchers were able to locate and interview only 142 of the subjects. The majority of these individuals were black, (82%), male (57%) and heterosexual. Most individuals had a low socioeconomic status, and 25% reported they had not been treated for HIV infection. In general, the characteristics of the individuals who could be located were similar to those who could not be located.
The majority of those who were not being treated also denied that they had ever been referred for treatment, did not want treatment, or were in "denial." Despite the fact that most individuals had annual incomes of less than $5,000, few reported that financial barriers prevented them from receiving medical care.
"Most interviewees had positive attitudes toward HIV testing," Dr. Kilmarx's group reports, and 76% said they would recommend HIV testing to others. Almost all had disclosed their HIV status to their sex partners.
Dr. Kilmarx's group points out "[t]he HIV counseling and testing program has been the largest single item in the federal HIV-prevention budget." And the current findings confirm that in "...large metropolitan areas...HIV counseling and testing are effective at helping HIV-infected persons."
Given that individuals were contacted 6-to-24 months after testing, the researchers suggest that it might "...be easier to recontact patients after a shorter time period, particularly if they are asked in advance for permission and reliable contact information."
Insurer sued on denial of HIV coverage
A federal court suit accuses Mutual of Omaha of violating state and federal law and endangering the lives of subscribers by severely limiting coverage for HIV-related conditions.The suit was filed by the Lambda Legal Defense and Education Fund and the AIDS Council of Chicago on behalf of two Chicago men whose names were kept confidential.
One of the men's policies caps HIV-related coverage at $25,000 and the other at $100,000. By contrast, the suit alleges, Mutual of Omaha provides up to $1 million in coverage for other conditions.
The suit says the caps violate the Americans with Disabilities Act and the Illinois Insurance Code.
The plaintiff identified in the suit by the pseudonym Richard Smith said, "Dealing with HIV is tough enough but having my health and even my life put at risk because of Mutual of Omaha's unwillingness to provide fair coverage is outrageous."
A former Mutual of Omaha claims processor told United Press International, "We were told to be on the lookout for anything that seemed AIDS related -- lots of blood tests, anything that contained the word 'immunity."'
The processor told UPI: "We were not told, 'We will not pay for AIDS treatment,' but unlike any other disease, we in the lower echelon could not send out a check for anything with an AIDS diagnosis. It had to be referred to a higher-up."
Mutual of Omaha had no immediate comment on the suit.
Assisted suicide "not rare" in AIDS: study
It is not uncommon for the primary caregivers of people with AIDS to increase the dosage of medication to hasten death, according to a report in the January 12th issue of the Archives of Internal Medicine.However, a multicenter group also found no evidence that caregiver distress, poor relationship quality or intolerable caregiver burden influences this decision.
Dr. Susan Folkman and colleagues at the University of California in San Francisco conducted a prospective study of 140 men with AIDS and their caregiver partners. At baseline and again 1 month before death, they evaluated the characteristics of the patients and their caregivers, along with the relationship between the two. Three months after the death of the patient, caregivers were asked if medication dosage was increased to hasten the death of their partner.
Dr. Folkman's' team found that about half (47.8%) of the caregivers reported that their partner received a dose of medication beyond the amount prescribed. In 82.1% of these cases, the dosage was administered to the AIDS patient by the caregiver. For the most part, the medication that was increased was a schedule II narcotic analgesics, such as morphine sulfate.
Overall, the researchers found no differences in the characteristics of the caregivers who reported administering an increased dosage compared with those who did not. There was no evidence that the decision to hasten death was associated with "...intolerance of the burdens of caregiving, burnout, depression, or anger on the part of the caregiver or any disturbance in the relationship between the caregiver and his ill partner." They also found no evidence that the caregivers experienced "excessive discomfort" associated with their decision to hasten death.
The decision to increase the drug dosage "...was typically made by the ill partner himself and was carried out by the caregiver, after discussion with the patient's physician." Most of the bereaved caregivers (87.5%) reported that their partner had set limits on the extent of treatment he wanted, and the majority of the caregivers reported that they agreed this decision.
"No previous studies have systematically documented the incidence of hastened death in AIDS or any other illness or characterized the psychologic state of the caregivers before the decision to hasten death," Dr. Folkman's team comments.
They also believe that their findings illustrates two important points for physicians and other professionals who care for AIDS patients. First, "...the care of people dying at home involves not just the conventional physician-patient dyad but also a triad." Second, "...concern with the issues of assisted suicide and euthanasia were virtually universal in this sample of dying patients and their caregivers." Therefore, Dr. Folkman's team believes that physicians need to be ready to discuss these matters with their patients, whether or not the physicians would be willing to participate.
Geneva scholarships available
The National AIDS Fund has announced scholarships of up to $3,500 for persons involved in community-based service organizations to attend the 12th World AIDS Conference, June 28 - July 3, in Geneva, Switzerland."Applicants must be actively involved in community-based HIV/AIDS organizations. Preference will be to those applicants who do not have the resources -- or who would not normally have the opportunity -- to participate in educational opportunities of this scope. Applicants will be selected by a panel of representatives from the nation's major HIV/AIDS organizations and institutions," the group said.
Major funding this year for the Community Advocates Scholarship Program is from Merck & Co., Glaxo Wellcome, Roche Laboratories, Pfizer, Agouron Pharmaceuticals, and Gilead Sciences.
Applications are due at the National AIDS Fund on March 8; they must include a letter of support, and cannot be submitted by fax.
For more information, or to obtain the application form, contact Ken Aldrich, Scholarship Liaison, National AIDS Fund, 202-408-4848, 9:00 a.m. to 6:00 p.m. Eastern time. Or call any time and leave your fax number.
ASIAC seeks administrator
AIDS Services in Asian Communities in Philadelphia is seeking an "Administrative and Volunteer Coordinator, who will provide administrative coordination of day-to-day agency administrative affairs including: bookkeeping, database management, and general office management duties. The Coordinator will also be responsible for recruiting, assessing, training, placing, coordinating, and providing support to ASIAC's volunteers who participate in the agency's activities.The position reports directly to the Executive Director.
AIDS Services In Asian Communities is a non-profit organization dedicated to providing culturally and language appropriate HIV education, prevention, support & care, and advocacy services for Asians & Pacific Islanders at-risk for and living with HIV/AIDS; and their friends, partners, family members, and service providers in the Philadelphia area. The organization was founded in 1995 and operates with a small staff and many dedicated volunteers.
The full-time position pays between $22,000 and $25,000 depending on experience and qualifications.
To apply, send a resume and cover letter to: Richard C. Liu, Executive Director, AIDS Services In Asian Communities, 1201 Chestnut Street, 5th Floor, Philadelphia, PA 19107.
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