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Issue #154: December 7, 1997
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 Clinical Infectious Diseases, Philadelphia Inquirer, Reuters, San Francisco Chronicle, Wall Street Journal, Washington Post
Clinton drops plan to extend HIV Medicaid benefits, cites treatment costs
Is HealthChoices denying you supplements?
Docs, nurses reject "profit-driven" health care
Supreme Court to decide if HIV alone is disability
HIV moms more likely to pass on hepatitis C
Some have "built-in" vaccine: scientist
FIGHT seeks Program Coordinator
High cost of treatment cited
Clinton drops plan to extend HIV Medicaid benefits
The Clinton administration has abandoned an attempt to use Medicaid to ensure that tens of thousands of poor, HIV-infected Americans who still are relatively healthy could afford new therapies that may prolong their lives, according to federal health officials.The decision comes eight months after Vice President Gore announced to a roomful of AIDS activists that he had directed the U.S. Department of Health and Human Services to explore ways to "ease suffering, renew hope and ensure that good people are not priced out of life-saving medicine."
The department had hoped to cover the drugs by expanding Medicaid, the federal health insurance program for the poor and disabled. But by law, Medicaid can start innovative experiments only if it can prove that they will not add to the program's expenditures.
Department sources told The Washington Post that, although officials had hoped that by paying for more people to get therapies, they could reduce the cost of their medical care in the long run, they had concluded that the drugs were simply too expensive.
"No matter how we sliced it, we could not come up with a way," said one senior department official. "We might have to take responsibility for being too optimistic at the beginning."
For AIDS activists and public health officials, the prospect had been heralded as an end to what they have complained for years is a short-sighted approach to medicine: Medicaid will cover low-income AIDS patients once they become sick enough to qualify as disabled, but -- in many cases -- it will not cover treatments that may keep them healthier.
The issue focuses attention on a fundamental problem as the AIDS epidemic in the United States has reached a new phase. Research has made important strides lately, developing new classes of drugs and new drug combinations that have proven effective at slowing the virus's ravaging effects. At the same time, those benefits are not reaching all Americans alike, particularly as the epidemic has tilted heavily toward minorities and the poor.
Between 1995 and last year, the percentage of people who developed full-blown AIDS decreased by 13 percent, according to the Centers for Disease Control and Prevention. But the drop was just 5 percent among Hispanics, and there was no improvement among African Americans.
To try to make drugs more accessible, the administration persuaded Congress this year to increase its funding of the AIDS Drug Assistance Program (ADAP) by 70 percent to $285 million. But during the last two years -- as word of the new, more effective drugs spread -- many states ran out of their ADAP funds. Even now, AIDS activists say they are uncertain whether that infusion will cover the escalating demand for the new combinations of drugs, which cost an average of $12,000 a year for each patient.
Federal health officials emphasized that they would continue to search for other ways to use the Medicaid program to provide AIDS drugs to healthier people, such as encouraging individual states to apply for experiments or asking Congress to appropriate more money.
But one senior department official acknowledged, "We don't have a plan B at the moment."
Another official said that, before abandoning the nationwide expansion, the Health Care Financing Administration, which oversees Medicaid, had studied four scenarios under which Medicaid would provide the benefits to HIV-infected people at 100 percent, 200 percent, 250 percent or 300 percent of the poverty level.
They concluded that, in the first year, that expansion would help 44,000 to 114,000 HIV-infected Americans. "Unfortunately, none of [the scenarios] are revenue neutral -- or close," the source said.
According to one AIDS activist, health officials said it would cost about $800 million a year to cover people at 100 percent of poverty.
"In the scheme of things, this isn't a whole lot of money," said Joseph Kelly, deputy director of the National Alliance of State and Territorial AIDS Directors. "What we need is the political will to do it."
But Daniel Zingale, executive director of the AIDS Action Council, said, "I still believe we can work with the administration to address the problem."
Is HealthChoices denying you supplements?
The HealthChoices Working Group, an ad hoc group of advocates and AIDS service providers seeking to protect people with HIV/AIDS covered by HealthChoices, the state's Medicaid managed care program, is seeking information on the denial of access to nutritional supplements under the HealthChoices program.State officials have pledged that access to nutritional supplements would not be hampered by the implementation of the managed care program to replace the old Medicaid system. Four managed care companies -- Healthcare Management Alternatives, HealthPartners, Keystone Mercy, and Oxford/OakTree -- now provide medical coverage for over 15,000 people with HIV/AIDS in the Philadelphia region. Some consumers and advocates have complained that the plans make it difficult for those requiring nutritional supplements to get them, and that there are unnecessary differences in the methods through which members of the different plans have to apply for the benefit.
The HealthChoices Working Group is asking consumers to contact it if they have had problems obtaining nutritional supplements, and to send a copy of the rejection notice if the benefit has been denied. Consumers who want to maintain their anonymity can "blank out" their names and other identifying information before sending in the form, the group said.
Other information which would help explain why the individual needs the supplements, such as how much weight has been lost or other medical factors, should also be provided.
Information should be sent to Anna Forbes, HealthChoices Working Group, c/o Philadelphia FIGHT, 1233 Locust Street, Philadelphia, PA 19107. Forbes can be contacted at 215-985-4448.
Meanwhile, ACT UP/Philadelphia has organized a "call-in" to state welfare Secretary Feather Houstoun to demand an end to what it calls "the unnecessary delays in adding approved drugs to the state's Special Pharmaceuticals Benefit Program (SPBP) formulary and the dangerously low rates of reimbursement under Health Choices." SPBP provides expensive AIDS medications to low-income and uninsured people living with HIV disease.
ACT UP is asking that calls be made to Houston to demand that all anti-HIV and opportunistic infection drugs are added to the SPBP formulary within 60 days of FDA approval. State officials took almost a year before adding Viracept, the newest approved protease inhibitor, to the SPBP list after it was approved by the U.S. Food and Drug Administration, and has still demurred on adding Nevirapine (Viramune) and Delavirdine (Rescriptor).
The "call-in" also demands that DPW immediately set a separate, higher capitation rate for the care of all people with HIV and other expensive chronic illnesses.
"Health Choices doesn't pay HMOs enough to take care of people with HIV," the group says in a leaflet supporting the call in. It says callers should tell Houstoun that "I want you to immediately create and announce a higher capitation rate for people with chronic illnesses."
Houstoun's office number is 717-787-2600. Her home telephone number is 215-922.2622.
ACT UP has set a December 15th deadline for a response from Houstoun, after which it says it intends to "escalate" the pressure.
Docs, nurses reject "profit-driven" health care
by Stacey BurlingPhiladelphia Inquirer
A policy statement published in the Journal of the American Medical Association and signed by thousands of Massachusetts doctors and nurses calls for their professions to reject profit-driven health care and take a more active role in reshaping a health-care system that is being transformed by corporate interests.
"What's happening now is wrong," said Timothy McCall, a Boston internist who was involved in drafting the statement, known as "A Call to Action."
"We need to address this and stop this before any more damage is done," he said.
Among other things, the doctors and nurses call for a moratorium on for-profit takeovers of hospitals, insurance plans, HMOs and physician practices.
The Call to Action was written last spring by a group of doctors, many of them from Harvard University, who formed the Ad Hoc Committee to Defend Health Care.
It has been signed by 3,200 doctors, about 12 percent of the physicians in Massachusetts, said David Himmelstein, an associate professor at Harvard who is an Ad Hoc Committee founder. It is circulating in other states, including Pennsylvania, and has been endorsed by a number of medical organizations and unions throughout the country.
In an unusual move, JAMA published the Call to Action along with the names of 2,300 doctors and nurses who signed it. The names alone take up more than four pages. A journal spokeswoman said the Call to Action was a peer-reviewed "policy perspective" that does not reflect the position of the journal's editorial board.
"We view this as the kickoff for what we expect to be a very rapidly mounting campaign," Himmelstein said. "What we're finding is that we're striking a very responsive chord."
Organizers are calling for teach-ins and meetings at health-care institutions throughout the country to discuss the moral implications of health-system changes.
While many of those involved in the committee are, like Himmelstein, supporters of a single-payer, national health system like Canada's, they purposely have not endorsed a specific solution to the nation's health-care problems.
Instead, they have agreed upon principles they believe should guide caregivers. Among those are that medical care is a universal right, that "the pursuit of corporate profit and personal fortune have no place in caregiving," that patients should be able to choose their doctors, that financial incentives that reward overcare or undercare should be prohibited, and that medicine's primary task is "the relief of suffering, the prevention and treatment of illness, and the promotion of health."
About 70 doctors gathered at Pennsylvania Hospital in Philadelphia on World AIDS Day to hear Walter Tsou, an area organizer for Call to Action and deputy director of the Montgomery County Health Department, talk of the dangers of corporate medicine.
Pennsylvania, he said, is behind the rest of the nation in discussing the Call to Action. "You are among the first people in Pennsylvania to hear about it," he told the doctors.
Tsou, who supports a national health system and wore a button that said "Patients Not Profits!," said this region could expect large numbers of health-care employee layoffs and hospital closings as corporations try to squeeze as much as possible out of the system.
Meanwhile, the number of uninsured patients continues to rise. Quality already is suffering, he said.
"Profit-driven medicine," he said, "is in conflict with caregiving."
Supreme Court to decide if HIV alone is disability
The Supreme Court has agreed to take up the issue of whether HIV-positive status alone, in the absence of an AIDS diagnosis, should be considered a disability under the Americans with Disabilities Act (ADA) of 1990.Bennet Klein, director of the AIDS Law Project, says in the November 28th issue of The Wall Street Journal that some courts have ruled against HIV as a disability, since new therapies can delay or sometimes completely inhibit progression of the virus to AIDS. On the other hand, HIV-infected people are subject to discrimination, according to the report, particularly in the fields of dentistry and health and fitness.
Sidney Abbott of Maine brought the original case to court in 1994 when a dentist refused to fill her cavity in his office, evidently because of her HIV-positive status. Both the trial and appeals courts have ruled on this case that HIV-positive status is a disability under the ADA, protecting Abbott against discrimination.
The courts have based their decisions on the grounds that HIV infection "substantially limits" people from taking part in one of what the law defines as "major life activities," namely reproduction. Abbott claims that her HIV status prohibits her from bearing children, because of the risk of vertical transmission of the virus.
If the Supreme Court upholds the lower courts' decisions, people with HIV will be guaranteed protection under the ADA, and will have legal recourse if discriminated against.
HIV moms more likely to pass on hepatitis C
Pregnant women dually infected with HIV and hepatitis C virus (HCV) have a significantly higher risk of transmitting HCV to their infants than mothers with HCV infection alone, according to an Italian team of researchers.Dr. Pier-Angelo Tovo of the University of Turin and colleagues conducted a prospective study of 245 children who were perinatally exposed to HCV. They report their findings in the November issue of Clinical Infectious Diseases.
"Transmission occurred in 3 of 80 children (3.7%) whose mothers had HCV infection alone and in 25 of 165 (15.1%;P<.01) whose mothers had concurrent infection with [HIV-1]," they write. About the same percentage of children became infected with HIV-1, but the two viruses appeared to be transmitted independently. "[O]nly six infants (3.6%) were coinfected with HCV and HIV-1."
There was no increased risk of HCV transmission "...associated with maternal HIV-1 related symptoms, intravenous drug use, prematurity or low birth weight." However, cesarean section delivery correlated with lower risk of HCV transmission, indicating "...that transmission occurs mainly around the time of delivery."
Dr. Tovo's group concludes that although "...vertical HCV transmission is rare event," coinfection with HIV-1 increases the risk of perinatal transmission of HCV significantly.
Some have "built-in" vaccine: scientist
by David PerlmanSan Francisco Chronicle
A specialized class of cells in the human immune system appears to endow many people with a kind of inborn vaccine that protects them from active infection by HIV, a leading researcher has reported.
The cells destroy the virus before it can take over the genetic machinery of other cells in the immune system and thereby prevent the invading virus from reproducing, according to Dr. Jay A. Levy, the virologist at the University of California at San Francisco who was one of the first scientists to isolate the organism believed to cause AIDS.
To Levy, the discovery of the protective effect of the specialized cells could be the key to developing an effective vaccine.
Levy reported on the new finding at a public meeting at the University of California at San Francisco, marking the launch of the university's new AIDS Research Institute.
The new "institute without walls" is designed to coordinate all the AIDS research, patient care innovations and AIDS prevention activities that are continuing at UCSF and San Francisco General Hospital.
Working in his own laboratory for more than 10 years, Levy has been investigating the mysterious properties of cells known as CD8 cells because of their unexplained ability to fight invading AIDS viruses in other immune system cells -- known as CD4 cells -- which the viruses destroy to trigger the onset of the AIDS diseases.
Levy first detected the potential anti-viral power of the CD8 cells among many men who had been infected by HIV and yet had remained free of any hint of disease for as long as 10 to 15 years.
Most recently, Levy and his colleagues studied 56 adults and 31 children, all of whom are considered to be at high risk for AIDS. Many of the adults had been repeatedly exposed to the virus through sexual activity or intravenous drug use, and the children had been exposed while still in the womb. The most sophisticated blood tests available showed that half of the adults and young children remained free of the virus and had not even produced antibodies despite their exposure, Levy said.
According to Levy, the activity of the CD8 cells appears to be controlled by a mysterious protein which neither he nor other scientists have yet to identify completely, but which Levy calls CAF, for CD8 Anti-viral Factor.
In their laboratory experiments, Levy and his colleagues found that the CD4 cells in the blood of all the volunteer subjects were easily susceptible to infection by HIV, but in half the group, CD8 cells blocked the virus from reproducing and protected the invaded CD4 cells from destruction.
In Levy's theory, an attack by small amounts of virus can induce the CD8 cells to start a "cellular immune anti-viral response" and "each subsequent exposure then acts as a kind of booster."
"We seem to have found a natural immune response produced by the virus itself that acts like a vaccination," Levy said in an interview.
As a result, he said, he and his colleagues are intensifying their search for a way to exploit the CD8 cells and the unidentified protein factor that regulates their activity as the key to a full-fledged AIDS vaccine.
FIGHT seeks Program Coordinator
Philadelphia FIGHT, which operates HIV clinical trials, treatment education programs, and the Lax Immune Disorders Treatment Center, is seeking a new program coordinator for its community education programs, who will also have substantial responsibility for fundraising for the programs.The responsibilities of this job include developing agendas, recruiting speakers, and handing logistics for FIGHT's public program series, including Information You Need to Live, the Frontline Forum, AIDS Education Month, the Jonathan Lax Lecture, and Clinician Updates; preparing resource guides for the Frontline Forum series; and negotiating for pharmaceutical industry and other support for these activities.
The Program Coordinator will also be responsible for raising funds for the Lax Center and for recruiting and supervising interns and volunteers.
Resumes should be sent to Robert McManus, Philadelphia FIGHT, 1233 Locust St., Phila. PA. 19107.
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