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Issue #132: July 6, 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 HIV Positive Newsline, Journal of Pediatrics, Morbidity and Mortality Weekly Report, New York Times, Philadelphia Inquirer, Reuters, The Lancet.
City grants $2m in new AIDS services; $800,000 remains
HealthChoices: thousands get wrong doctors
Pap smears for HIV+ women questioned
Link found between perinatal HIV and growth
Court affirms freedom of speech on Internet
Gene said to hasten AIDS progression
City grants $2m in new AIDS services; $800,000 remains
The AIDS Activities Coordinating Office (AACO) awarded over $2 million in federal funding for new AIDS services last week, withholding $800,000 for grants to be awarded later.The awards are for new and expanded services to people living with HIV disease in the nine-county Philadelphia/South Jersey region supported by Title I of the Ryan White CARE Act.
The funding was provided to 33 organizations according to priorities established earlier this year by the Philadelphia HIV Commission, which is mandated under federal law to advise the city on CARE Act allocations.
The new allocations fall short of the Commission's priority that the bulk of the funding be targeted to minority organizations, although most of the funding awarded to agencies in the city itself went to minority groups. While less than half of the total funding awarded last week went to minority groups (48%), according to the Commission's definition, within the city of Philadelphia, 58% of the funding wound up in minority community-based organizations.
The Commission, adopting a definition proposed by We The People, calls a "minority organization" one in which the majority of the board and management staff are of the same ethnic group as the population being served, and one which has a proven history of involvement with the minority community being targeted.
The city's announcement of the new funding did not address what portion of the funding was targeted to services for women, which was another Commission priority.
Minority groups dominated seven of the eight funding categories in which new or expanded programs were funded, falling short in the area of outpatient/ambulatory care, where only 15% of the funds went to minority groups. The Philadelphia region has historically had difficulty in getting minority clinical care providers to emphasize AIDS services, and the overwhelming majority of primary care providers in the region are led by whites.
Funding in the areas of mental health services, transportation and housing services was reserved until a later date, according to an announcement released by AACO.
While details on the specific programs funded were not released by AACO, several new initiatives are supported by the new funding.
Primary among these are two clinics to be offered by Philadelphia FIGHT's Jonathan Lax Treatment Center, one dedicated to primary care services for uninsured people and the second focusing on those with wasting syndrome. Derrick Tolbert-Walker, MD, is expected to be the lead physician at the primary care clinic, and Dr. Norma Murraheinen of Graduate Hospital will direct the wasting clinic.
We The People's Living Positive Treatment Center, the first free-standing outpatient substance abuse treatment center specifically designed to assist addicts with HIV infection, also received limited funding. The project is based in the city's Kensington section. Neighborhoods United Against Drugs, a West Philadelphia group, also received funding for a substance abuse counselor to provide specialized services for people with HIV/AIDS.
AIDS Services in Asian Communities (ASIAC) received additional funding for its new Project ASSIST program, which aims to increase access to AIDS care services for the city's small Asian/Pacific Islander population with HIV disease. ASIAC had previously received significant support for the new program from Title II CARE Act funding awarded last month by the Philadelphia AIDS Consortium (TPAC)
We The People also received additional funding for its LifeSavers Emergency Fund project, which provides emergency financial assistance to people living with HIV/AIDS. The Title I award, combined with increased in TPAC funding awarded last month and a small increase to LifeSavers recently awarded through the city's Housing Opportunities for People with AIDS program, almost doubles the amount of funding available annually for WTP's emergency financial assistance project. City officials have pledged to make advance payments to emergency needs programs this year to alleviate cash flow problems which have delayed their allocations in the past.
New emergency assistance program is established with the funding at the Southwest Philadelphia FACT Center, an "extended services" center affiliated with One Day At A Time, a residential recovery network. ActionAIDS also received additional funding for its emergency needs program.
The Colours Organization, which recently received its first grant for early intervention case management for people with HIV disease from TPAC, was awarded Title I funds for a small buddy/companion program it has established to complement that activity. ActionAIDS and Congreso de Latinos Unidos also received new funding for their long-standing buddy programs.
About 18% of the total funding awarded went to agencies serving suburban Philadelphia and South Jersey people with HIV/AIDS, mostly in the area of outpatient care and medications.
HealthChoices: thousands get wrong doctors
A front-page report in the Philadelphia Inquirer has confirmed what many people living with HIV/AIDS have been complaining about since the state's new Medicaid managed care program for the poor was implemented last February: they're being assigned to the wrong doctors.Under the new program, all Medicaid recipients in the five-county Philadelphia area are required to join one of four managed care programs by August 20th.
However, according to the Inquirer, "tens of thousands of poor people...have been incorrectly assigned to their primary care physicians," forcing many Medicaid recipients to go to doctors who are not authorized to treat them.
The Inquirer article says that many of those affected by the foul-up are children and people with chronic and disabling illnesses, including people living with HIV disease.
AIDS advocates have severely criticized the state program for forcing the region's 17,000 Medicaid recipients into the program even though there are not enough HIV-experienced physicians participating in the four plans. In some areas of the region, especially in rural suburban areas, no physicians are available to treat HIV infection.
The state's Department of Public Welfare, which implements HealthChoices, has also refused to adopt a common standard of HIV care for each of the plans or identify those with HIV experience in the physician directories published by the plans.
State officials were quoted by the Inquirer as stating that "no more than 100,000" people were in the pool of Medicaid recipients affected by the problem, although they acknowledged that at least 50,000 patients in one HMO alone had to request a change in their primary care physicians in the first 90 days of the program. "The majority wanted to switch because they had been assigned to a physician they had not requested," the Inquirer said.
Healthcare Management Alternatives, one of the HealthChoices companies, said that it had processed 23,000 requests for changes since February.
Representatives of the Pennsylvania Health Law Project had complained of the problem several months ago to state officials to no avail.
State officials confirmed that many of those affected are not aware that they have been assigned to the wrong primary care physicians, and won't find out until they need medical care.
"For clients who are very sophisticated, this has been an aggravation," said Michael Campbell, an attorney representing Medicaid recipients. "For others who aren't so sophisticated, this could be a tragedy."
People living with HIV/AIDS who need information on changing a physician assignment should call the Community HealthChoices Line at 1-800-929-5602 for assistance.
Pap smears for HIV+ women questioned
Women with HIV infection tend to have a high rate of false-negative Pap smears, according to a report by Dr. William R. Robinson of Tulane University School of Medicine in New Orleans.Dr. Robinson and colleagues evaluated 32 HIV-positive women presenting for routine prenatal care. All of the women had normal Pap smears. They agreed to colposcopy with directed biopsy and screening for chlamydia, gonorrhea and syphilis.
Despite normal cytology, 10 of the subjects were found to have cervical intraepithelial neoplasia (CIN). Six of the subjects were diagnosed with a sexually transmitted disease, but only one of these women also had CIN. CIN was associated with immunodepression. The mean CD4 count was 249/microliter in women with CIN compared with 501/microliter in those without CIN.
The group concluded that cytologic screening for cervical neoplasia may have limitations in the HIV-infected women, even in the absence of other infectious or inflammatory conditions. Consequently, they believe it is prudent to recommend a low threshold for performing screening colposcopy with possible biopsy in HIV-infected women until the limitations of standard screening strategies are better understood.
Link found between perinatal HIV and growth
A paper in the June issue of the Journal of Pediatrics provides more evidence that children infected with HIV perinatally have impaired early growth. Also, this impairment correlates with HIV viral load.Investigators from New York University Medical Center led by Dr. Sharon E. Oberfield conducted a retrospective study of 47 infants born to HIV-positive mothers; 18 of the infants were HIV-positive and 29 were HIV-negative. The team analyzed plasma p24-antigen, HIV RNA levels and growth parameters charted from birth to 18 months. Infants were grouped according to viral load during the first 6 months of life.
Dr. Oberfield's team reports that HIV-positive and HIV-negative infants showed no difference in weight and length at birth. However, between 0 and 6 months of age, HIV-positive infants "...grew less rapidly than the uninfected infants, a finding temporally associated with an exponential increase in HIV viremia." Beyond the age of 6 months, differences in linear growth remained, but to a lesser degree.
Plasma HIV RNA levels were markedly elevated at 3, 6, 12, and 18 months of age in the HIV-positive infants with impaired growth.
The New York researchers conclude that "...stunting is an early frequent finding in perinatal HIV infection," and that this "...deleterious effect....appears to be correlated with the level of postnatal HIV viremia, although the exact mechanism of this association remains to be elucidated."
Court affirms freedom of speech on Internet
In a landmark unanimous decision, the Supreme Court has rejected the Communications Decency Act as setting unconstitutionally vague and sweeping restrictions on what adults and minors can publish and see on the Internet -- and thereby seriously impinges on First Amendment guarantees of uncensored free speech.Justices O'Connor and Rehnquist issued two partial dissenting votes, but on the whole rejected the law as overbroad and probably unconstitutional. This was the Court's first ruling on the Internet.
Kiyoshi Kuromiya, director of Philadelphia's Critical Path AIDS Project, a pivotal litigant from the start, stated that "the decision reaffirms our belief in the flexibility, good sense, and durability of the First Amendment's guarantees of free speech." Stefan Presser, Pennsylvania legal director for the ACLU, speaking from Philadelphia where the suit was filed, said: "Kiyoshi may have been the single most persuasive voice to the court."
The Department of Justice said in their brief they didn't think any of the plaintiffs had anything to worry about, but the three-judge Federal panel that first heard the case disagreed, finding that Critical Path -- which sponsors over 40 HIV-related World Wide Web pages in the Philadelphia area, including We The People's -- would be "profoundly affected by the act."
"We are greatly relieved that these personal freedoms are reaffirmed and we are assured that they will extend well into the next century," Kuromiya said. "And that the Court also agrees that the protections guaranteed us in our conversations over the telephone, in private mail, and in the print media will extend into cyberspace also. And in our case specifically, the sexually explicit safer sex information we provide over our telephone hotline for both teenagers and adults, or in Critical Path AIDS Project newsletter which we publish, will also be protected when we publish them on our Internet website."
Kuromiya continued that "the sweeping restrictions of the Communications Decency Act would have knocked the cornerstone out of the First Amendment guarantees of free speech, as applied to the Internet, for the next hundred years. We as providers of information on AIDS treatment, safer sex, and risk management for a variety of sexual practices can breath a bit easier now. To criminalize the publishing of life-saving but sexually explicit information on the Internet would have been a great public health mistake. Today, presumably over a quarter of all new HIV infections occur in teenagers. We have to reach both adults and sexually active minors with this information. Now we can get back to our important work and need not fear jail terms or fines."
In his testimony, Kuromiya had assured the Court that no matter which way they decided, nobody -- not Congress, the President, or even the Supreme Court of the United States -- would have stopped him from providing sexually explicit material to teenagers over the Internet.
Quoted in Philadelphia Inquirer, Kuromiya stated: "I feel that what I'm doing is valid, life-saving ... Of course, I would continue to do what I am doing."
Gene said to hasten AIDS progression
Last year, researchers discovered that some people in the population are naturally resistant to HIV-infection because they lack two copies of a gene -- one from each parent -- called CCR5, which make a receptor found on immune system cells. And if people have one copy of the gene and become HIV infected, it may take longer for such individuals to develop AIDS.Now, a new study suggests that this special HIV-resistant status could be a double-edged sword. Those HIV-infected individuals who lack CCR5 may stave off AIDS longer than others, but seem to succumb more rapidly to opportunistic infections once AIDS does develop, according to a letter in The Lancet.
"Surprisingly, our data suggest that the survival after the diagnosis of AIDS is reduced in (CCR5 gene mutation) carriers," reported Dr. Peter Garred of the Tissue Typing Laboratory at Rigshospitalet in Copenhagen, Denmark.
The study found that 11 HIV-infected patients with a single mutated CCR5 gene -- which left them with nonfunctioning CCR5 -- lived about 11 months after the onset of AIDS, compared to 17 months for patients who did not carry the mutated gene. An analysis suggested that the mutated gene had a protective effect for about seven years after the first positive HIV test, with CCR5 carriers having more CD4 cells in their blood than other patients.
"However, this picture was reversed when AIDS was diagnosed," the authors wrote.
About 1% of whites have two mutated copies of the CCR5 gene and 10% have one copy, though the gene is less common in other ethnic groups. Some strains of HIV use CCR5, in addition to the CD4 cell receptor, to gain access to the interior of white blood cells. The normal function of CCR5 is to bind to chemokines, molecules important in inflammation.
It's not yet clear why CCR5 carriers are initially resistant to the virus and then later succumb, according to the researchers. However, the lack of CCR5 may thwart HIV strains, which then mutate to become infectious. The mutated strains of HIV may be more virulent later in the disease, and thus more deadly, the researchers speculated. Or those who lack CCR5, a normal component of the immune system, may not be able to fight opportunistic infections as successfully as other patients.
"In any case, these findings may be useful in the prognostic assessment of HIV infected patients during the late stages of disease," they wrote, if the report is confirmed by other studies.
AMA backs needle exchange
The American Medical Association House of Delegates has joined a growing chorus of voices and called for a change in laws to allow intravenous drug users easier access to clean needles to help block the spread of HIV.The AMA had previously "encouraged" needle-exchange programs, and will now work with Congress and state medical societies to overturn laws prohibiting the possession of needles. The AMA said that if the ban continued to the year 2000, the United States would have failed to prevent up to 11,000 cases of AIDS, including those among heterosexual partners of drug users and their children, at a cost of up to $630 million for medical treatment.
Dr. Nancy Dickey, AMA board of trustees chair and president-elect, said, "There is more and more evidence that the advantages of needle exchanges outweigh the disadvantages."
The decision was applauded by public health professionals. They said the move, combined with a similar bipartisan resolution from the United States Conference of Mayors in June, could increase pressure on the politically sensitive Clinton administration and a reluctant, conservative Congress to reverse the federal ban on financing needle-exchange programs. However, the New York Times reports that the AMA's move was "greeted coolly in Washington, which remains fearful of putting its official imprimatur on something that many perceive as tantamount to promoting drug use."
Meanwhile, the U.S. Centers for Disease Control has announced that needle-exchange programs are continuing to expand their reach. Government experts say the number of syringes exchanged nationwide jumped 75% between 1994-1996.
"The (study) findings indicate continued expansion in the number and activities of syringe-exchange programs (SEPs) in the United States," concludes a survey of such programs conducted by the CDC.
The CDC say that as of the end of last year, more than a third of the nearly 600,000 U.S. AIDS cases were "directly or indirectly associated with injecting-drug use." Shared needles can pass traces of HIV-infected blood from one intravenous drug user to the next.
The CDC report that over 14 million syringes were exchanged by 87 such programs nationwide in 1996 -- up from the 8 million handled by just 55 organizations in 1994.
However, the researchers found that a few very active outlets in specific cities are exchanging the bulk of needles. "The 10 most active SEPs... exchanged approximately 9.4 million (69%) of all syringes exchanged," government officials report. And more than half of all known exchange programs "were located in just four states -- California (17 programs), Washington (11), New York (10), and Connecticut (6)."
Variations in state laws may be at least partially responsible for the uneven distribution of SEPs. Possession of a medical syringe without a prescription is currently illegal in many states, including Pennsylvania and New Jersey. Laws such as these mean many needle-exchange programs operate illegally. However, in some of those states, local civic boards may vote to turn a blind eye to SEP operation. In other states, illegal exchange programs are forced to go underground.
"In 1996," say the CDC, "a total of 46 (53%) SEPs were legal, 20 (23%) were illegal but tolerated, and 21 (24%) were illegal-underground."
Freedom to operate under the law seems to enhance the quality and quantity of services an individual program provides, according to the CDC. The CDC says that "legal SEPs were more likely than illegal ones to offer on-site HIV counseling and testing," for example. They add that 'underground' needle-exchange programs may also restrict the actual number of syringes exchanged.
Perhaps because of factors like these, states like Maine and Minnesota last month removed legal penalties against the possession of less than 10 syringes, opening the door to legal operation of exchange programs in those states.
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