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Issue #192: August 31, 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 articles in this issue include DVHC News and Reuters.
PA waivers on names reporting; city supports code system
Treatment said to eliminate "hidden" virus
State legislature to hold HealthChoices meetings
IAPAC launches Norvir advisory project
MANNA offers BIA tests, cooking classes, frozen meals
T-Cell Speaks: Tips to Everyday Issues for People Living With HIV/AIDS
PA waivers on names reporting; city supports code system
As Pennsylvania deputy health commission Gary Gurian backed off on statements committing the state to a new HIV reporting law, an aide to Philadelphia health commissioner Estelle Richman has announced that the city prefers a reporting system based on unique identifiers rather than actual names of those infected.
Gurian was quoted in an Associated Press article on August 14th as saying that the Commonwealth had decided to implement an HIV reporting requirement soon, although it had not yet decided whether to use a name- or code-based system for the reports. A state source said that the state is considering a plan in which local health departments would collect the names of HIV+ people, but report the information to the state through a coding system which would keep the information anonymous on the state level. Actual names would still be held in confidential records on the local level, according to this source.
Gurian told the Philadelphia Gay News that the AP article had misstated his position, and that "we're actively exploring all of our options, no decision has been made yet."
Pennsylvania governor Tom Ridge said he opposed names reporting when he was running for governor in 1994.
Bruce Flannery, director of the Pennsylvania Coalition of AIDS Service Organizations, said that Gurian had agreed to meet with AIDS activists sometime in September to discuss their concerns about the new policy.
Julie Davids, speaking for ACT UP Philadelphia, called again for Philadelphia Health Commissioner Estelle Richman to refuse to cooperate with any state-mandated names-reporting scheme. She said that "ACT UP is very disappointed that the health department of Philadelphia has not come out strongly against names reporting in their report to the state. We do not want the city t comply with any HIV-reporting system that is names-based. We want the city to refuse to participate in such a program."
Donna Gentile O'Donnell, a deputy to Richman, told the Philadelphia Gay News after Gurian's announcement that the health department opposed HIV names reporting and preferred that a code-based system be used.
"The health department's position is that privacy issues need to be protected. Therefore, we support an HIV case-reporting system that uses codes, not names." O'Donnell would not agree that the city should resist state-mandated names reporting if implemented by the Commonwealth, however.
Earlier this year, people living with HIV/AIDS and AIDS service providers were uniformly in support of some kind of HIV reporting system, but unanimously opposed to name reporting models. After the hearings, Richman informed the state of local opinion and called on state officials to seriously consider a reporting mechanism that would allow names to be withheld. In her report, however, she declined to specifically support a code-based system.
Pennsylvania is one of only 18 states that doesn't track HIV cases. There are 32 states that track the number of people with HIV. Only two states use codes instead of names to record HIV-infected people.
New Jersey has required HIV name reporting for several years, and New York State is also working on a name reporting mechanism for the coming year.
The Associated Press reported that within the next few months, the U.S. Centers for Disease Control will establish guidelines for Pennsylvania and other states on HIV surveillance and reporting, according to Dr. Helene Gayle, director for the CDC's National Center for HIV, STD and TB Prevention. CDC officials have strongly discouraged code-based reporting systems, saying that they allow for duplication and are even less effective at linking people to care services than is name reporting.
"Tracking AIDS cases no longer gives us a representative picture of the epidemic," Gayle said.
Anna Forbes, a Philadelphia AIDS activist who has championed code-based reporting systems for many years, said that studies show "people will avoid getting tested altogether" if they believe their name is going to be reported. "Pennsylvania needs to take into consideration the feelings of the cities with the highest number of cases, before they choose a system of HIV case-reporting," Forbes said.
ACT UP Philadelphia is encouraging telephone calls to Pennsylvania Health Secretary Daniel Hoffman to protest against HIV names reporting in Pennsylvania. Hoffman's telephone number is 1-717-787-6436.
Treatment said to eliminate "hidden" virus
In two studies, five people living with HIV, taking a "bold" new combination of antiretroviral drugs and immune-system stimulators, appear to have cleared all HIV viruses from their bodies, according to a report in New York's Newsday.
In one study, conducted by Dr. Anthony Fauci and Dr. Clifford Lane of the National Institute of Allergy and Infectious Diseases, interleukin-2 was used to "wake up" the immune systems of patients and drive the virus out into the open to be assaulted by the antiviral drug cocktails. The process deliberately makes patients very sick, but may hold the key to flushing out the last stubborn reserves of HIV.
Three of the patients' results were so promising that culture analysis of more than 300 million white blood cells revealed no HIV. The other 10 continued to do well, but culturable viruses were found.
Expressing "cautious optimism," Fauci, director of NIAID, said, "This does not imply, nor does it prove, that we have eradicated anything." He added, "We don't know if this is clinically relevant." However, Dr. Joep Lange at the University of Amsterdam, The Netherlands, performed a similar study and found nearly identical results. The major difference was that in his study, the patients were given five anti-HIV drugs at once after the immune system was activated. Lange also hospitalized the young men and infected them with lab-engineered monoclonal antibodies to further provoke an immune system response. In two of the three patients who received this treatment, attempts to induce virus production in lab samples of these patients' cells proved impossible.
Lange, too, expressed cautious optimism. "There's still many things that are unclear," he said, adding, "I don't think anyone can declare a patient cured." Dr. Giuseppe Pantaleo of the Hospital Beaumont in Lausanne, Switzerland, said, "The only way to know whether such radical treatments are eliminating HIV is to stop the treatment cold," which the NIAID's Lane said he intends to do in some patients.
State legislature to hold HealthChoices meetings
The state House Health and Human Services Committee will conduct two roundtable discussions on House Bill 2742 on September 1 in Harrisburg and September 16 in Allentown. The bill, introduced by Rep. Pat Browne, R-Allentown, is known as the Medical Assistance Managed Care Consumer Protection Act and is cosponsored by 17 House members.
The bill requires the Department of Public Welfare (DPW) and Department of Health to develop a comprehensive profile of the health and service needs of the population to be served by HealthChoices. The departments also are to develop a process to ensure adequate input from key stakeholders such as public agencies, private purchasers, beneficiaries and families, managed care entities, providers, consumer advocacy groups and professional associations.
HealthChoices, a mandatory managed care program for Medicaid recipients, is currently only in operation in southeastern Pennsylvania. The program is scheduled to expand to the southwestern region of the state, including Pittsburgh, sometime in the next year.
The bill would require DPW to develop reimbursement methodologies according to specified requirements. It mandates an annual independent actuarial study to review and make recommendations concerning actuarial assumptions relevant to the establishment of adequate rates. The bill is the result of discussions held earlier in the year and is designed to address concerns about the design and implementation of Medical Assistance managed care.
The measure also addresses concerns about the adequacy of the HealthChoices reimbursement rates, especially with respect to the special needs populations.
Meanwhile, ten Philadelphia-area hospitals are among 34 in Pennsylvania which have qualified for a new class of "disproportionate share payments" for hospitals that experienced significant revenue loss because of changes in the state's welfare programs.
Two years ago, under Act 35, the state eliminated health benefits for residents on public assistance who had no children and were deemed healthy enough to work. Many hospitals have also complained that new Medicaid reimbursement rates are inadequate to the actual cost of expensive AIDS care.
After intense lobbying efforts by the hospitals, the state Department of Public Welfare agreed to provide additional funding -- in the form of a community access fund -- to medical centers hit hardest by the welfare reform law.
Jay Pagni, a spokesman for the Welfare Department, said the state will not disclose the amount of this year's fund till after the rate agreement with the hospitals is finalized and signed.
He did say it will be a "substantial increase over last year's amount" of $21.2 million in state and federal funds.
Philadelphia medical centers and health systems that qualified for the additional funding, under a formula developed by the Welfare Department, are: Albert Einstein, Episcopal, Mercy [formerly Misericordia] Pennsylvania, and Presbyterian hospitals and North Philadelphia Health System. Other local hospitals on the list are Mercy Fitzgerald Hospital, Darby; Crozer-Chester Medical Center, Upland; Valley Forge Medical Center, East Norriton; and Eagleville Hospital, Eagleville.
IAPAC launches Norvir advisory project
The International Association of Physicians in AIDS Care (IAPAC) has announced the launch of a comprehensive information system that will provide technical assistance to AIDS-treating physicians who are transitioning as many as 65,000 patients globally from Norvir (ritonavir) capsules to Norvir liquid or, if necessary, other antiviral regimens should some patients experience difficulty with the liquid formulation.
Because of an unknown manufacturing problem, Abbott Laboratories officials predict supplies of the capsule form of their protease inhibitor may be exhausted in many countries by the end of August.
According to Charles Farthing, MD, chair of IAPAC's ad hoc Norvir Advisory Committee, "Although most HIV specialists are not overly concerned about the transition, there may be many physicians throughout the world who have only a few patients on Norvir capsules and may prefer to seek expert medical opinion on transition issues. There is a need to supply these physicians, their patients, and the pharmacists who dispense prescriptions, with timely, accurate information upon which the success of any anti-AIDS therapy lies."
IAPAC's information system, the IAPAC Norvir Advisory, is a multi-prong system to provide physicians and pharmacists transition information via the association's Web site (http://www.iapac.org), fax, and/or direct mail. Farthing predicts the majority of concerned healthcare professionals and patients will access information through the new Norvir Advisory section of the IAPAC Web site, which was launched on Friday, August 27. IAPAC is currently registering physicians and pharmacists in a Norvir registry, through which IAPAC will notify them via e-mail when new information is posted on the Norvir section.
IAPAC is not enrolling patients on the Norvir registry, and is instead counting on local AIDS service organizations to serve as conduits for the IAPAC Norvir Advisory. The advisory will be translated into multiple languages. Spanish and Portuguese translations will be available in mid-September.
Among the first features will be reviews and comments on algorithms being circulated among physicians that offer alternate antiviral regimen options, some of which Farthing characterizes as "potentially harmful to some patients."
The IAPAC Web site has been re-designed to accommodate the IAPAC Norvir Advisory. Among the additions to complement the association's education efforts around the Norvir crisis is the posting of IAPAC's new patient education booklet, "Resistance to HIV/AIDS Drugs," by Douglas D. Richman, MD. The booklet provides the latest information about potential risks of antiviral resistance and cross-resistance that could result if patients do not adhere to their antiviral regimens or switch to inappropriate regimens.
According to IAPAC's Deputy Director, Jose Zuniga, the association will provide free print copies of the booklets to patients on Norvir who cannot download the document from IAPAC's Web site. All requests for the booklet must be submitted by mail to IAPAC Resistance Booklet, 225 W. Washington, Suite 2200, Chicago, IL 60606. Patients may also fax requests to (312) 419-7079. No phone calls, please.
MANNA offers BIA tests, cooking classes, frozen meals
The Metropolitan AIDS Neighborhood Nutrition Alliance (MANNA) is offering a special program offering BIA measurements - a quick and painless test that measures your muscle and fat - as part of its "Breakfast at MANNA" series on Friday, September 18th.
Participants in the event will receive a free breakfast, a copy of their results, and the opportunity to meet with a MANNA nutritionist to find out what the results mean. People living with HIV/AIDS, their caregivers and AIDS service professionals are invited to attend.
Speaking at the event will be Brenda Lazin, RD, MANNA Director of Nutrition Services. Reservations are required by September 15th by calling 215-496-2662.
MANNA is also offering a new six-week cooking and nutrition class for people living with HIV/AIDS called "Eating Well," every Thursday from 3-5 p.m. beginning on October 8th. The class will be taught by Brenda Lazin and MANNA's chef, Beth Russell. Groceries will be given after each class to prepare that week's demonstrated meal at home.
Registration is also required for this class, by calling Brenda at 215-486-2662.
Each of these events will be held at MANNA, 12 S. 23rd Street (enter on Ranstead).
Also, since last month, MANNA has begun offering frozen meal delivery for people living with HIV/AIDS. Currently, hot meal clients receive a daily delivery of breakfast, lunch and dinner six days per week; frozen meal clients receive one delivery per week, which contains six frozen entrees and a week's supply of fresh fruit, cereal, muffins, and milk for breakfast. Both the frozen and hot meal menus are designed to provide the added protein that people living with HIV often require.
New clients asking for the frozen meals will be assessed to ensure that people receive the most appropriate meal for their stage of nutritional health. A number of factors are considers, such as access to cooking facilities, social and emotional supports, as well as recent infections and overall immune functions. Each client must be seen by a nutritionist either through MANNA or their primary care provider.
Clients should be referred by a case manager, who can call 215-496-2662 to request an intake form.
T-Cell Speaks: Tips to Everyday Issues for People Living With HIV/AIDS
Purpose: This space in the fastfax is a resource for people living with HIV/AIDS to submit solutions or ways for us to find easy remedies for accessing services or to think of better ways to care for ourselves. For instance, for those of you who have an AT&T answering service, did you know that you have a reminder feature on the service that can be used to give you programmed daily reminders to take your medicine or to remind you to eat.
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