TPAC seeks meeting with city to coordinate planning efforts
Protease inhibitors: patient education critical
HIV breeds well in adenoids: study
Study may benefit blacks with KS
Nkomo reveals son died from AIDS
Philly Showcase to benefit MAC, MANNA
TPAC seeks meeting with city to coordinate planning efforts
Finally acceding to demands that it divest its board of direct authority to fund specific organizations, and setting numerical quotas with regard to the demographics of its membership, the Philadelphia AIDS Consortium board of directors this week took what it called "a long needed step...toward healing the internal controversy that has plagued the organization for several years."
As the formal AIDS planning coalition for southeastern Pennsylvania, under Title II of the Ryan White CARE Act, TPAC distributes over $3.1 million in Ryan White CARE Act and State 106 AIDS funding in the five southeastern Pennsylvania counties.
Philadelphia health commissioner Estelle Richman withdrew TPAC's authority over Title I Ryan White funds -- almost $10 million -- last year, after several years of complaints about discriminatory funding practices and conflict of interest on the organization's board.
The board tabled a decision on whether TPAC will remain as the Title II planning council for southeastern Pennsylvania. Board members said that they will ask for a meeting with AIDS Activities Coordinating Office director Jesse Milan and with the Philadelphia EMA HIV Commission (which now serves as the Title I council), to discuss ways to integrate the Title I and Title II processes to avoid unnecessary duplication of planning activities. Most board members at this week's meeting said they would make their decision on the future role of TPAC in Title II pending the outcome of those discussions.
At a meeting with state AIDS bureau administrator Bonnie Jo Brautigan earlier this month, almost half of the active TPAC board members suggested that the state take away the Title II authority from TPAC because of its internal problems and what those at the meeting saw as a lack of sensitivity to the concerns of minority, PWA and suburban concerns. The group also asked Brautigan to monitor the current allocation of close to $1 million in state 106 funds for AIDS prevention activities, because of distrust of the TPAC allocations process.
At press time, the city's Resource Allocations Advisory Committee (RAAC) was meeting to consider TPAC's request that it evaluate applications for the 106 funds instead of a TPAC review panel.
At this week's meeting, the board also agreed that all future funding allocations would be made by an independent review panel, such as the RAAC, rather than by the board or panels selected by the board. It also agreed that specific numerical quotas would be established to assure board representation of various racial groups, women and members of sexual minorities, based on the demographics of the epidemic as reported by the AIDS Activities Coordinating Office in its AIDS surveillance reports. The board said it would use the latest available AACO surveillance report each year in setting the representation requirements for board composition.
In the wake of the City's announcement last week that over $1.8 million in funding has been cut under Title I of the Ryan White CARE Act program, TPAC's "exercise in leadership as a regional planning and advocacy group is overdue," according to a statement issued by Lawrence Hochendoner, the group's new executive director. Audrey Tucker, the president of TPAC's board, said on the day following the meeting that "Last night marked an important first step toward stabilizing current funding for services for people living with HIV disease."
Other steps taken by the TPAC board this week included reducing the board's total membership from 65 members to 35 with new membership. In addition, the Board defined its unique value-added mission within the labyrinth of AIDS organizations by vowing to increase non-governmental funding by aggressively pursuing grants from appropriate foundations and corporations; acting as an advocate on a wide range of issues such as Special Pharmaceutical Benefits Program, CD4 lab-based reporting, and HIV name reporting; becoming a more effective player in State Budget discussions and continuing its cooperative effort with Thrift for AIDS to support the region's much needed Transport for Access program -- providing transportation services to people living with AIDS.
"While the board believes that organizational issues are important, they understand that these issues pale in comparison to getting on with the task of meeting the needs of people with AIDS," said Alan Edelstein, Treasurer of The Board of Directors. After ten months of heated controversy among the 79 original board members and with its June 1 deadline approaching (for submission of application for funding to the Commonwealth) for over $946,092, the AIDS Consortium has agreed to accept the recommendations of an outside allocations panel, thus eliminating the risk of conflict of interest and ensuring a continued flow of funding from the Commonwealth. In 1995-1996, the AIDS Consortium funded over 33 agencies who provide direct service to people living with AIDS.
Kiyoshi Kuromiya, a person living with AIDS, long-time activist and AIDS Consortium Board Member said, "This is not the time for the AIDS community to be divided. In a hostile environment of draconian budget cuts and mean-spirited politics we must work together to ensure people with AIDS receive needed services."
Summing it all up, Jena Nottingham, Co-Chairman of the Consortium's Strategic Planning Committee and Associate Director of The Minority AIDS Project of Philadelphia said, "We need to act rather than react, listen, not talk, and be bold rather than timid to diversify and increase funding to the AIDS Community,"
The AIDS Consortium Nominating Committee is accepting recommendations for Board members. Interested individuals should contact Larry Hochendoner, Executive Director, at 215-985-6200. New board members will be seated at the board's June 13, 1996 meeting.
Protease inhibitors: patient education critical
by John S. James
AIDS Treatment News
Issue #244, April 5, 1996
1-800/TREAT-1-2
It is widely agreed that successful use of the new protease inhibitors -- especially indinavir (Crixivan(R)) from Merck & Co., and ritonavir (Norvir(TM)) from Abbott Laboratories -- will depend on effective patient education. This education is not yet in place; for example, some important materials are not ready yet, and some are ready but not being distributed successfully.
One major concern is drug safety, especially drug interactions with Abbott's ritonavir. Many drugs must not be taken together with ritonavir, because ritonavir prevents those drugs from being metabolized by the body, resulting in a large overdose (not of ritonavir, but of the other drug). Abbott has prepared a card for patients to carry, listing some of the most important drugs to avoid; unfortunately this card has not yet been distributed with many of the prescriptions dispensed so far. Therefore, we are reproducing it below, with permission. But be sure to check with your doctor, because this list is not complete, and it will probably change as new interaction problems are discovered. (Merck's indinavir seems to cause much less problem with drug interactions and with side effects, although there are some of each.) And the different protease inhibitors MUST NOT be combined until clinical trials have shown whether, and how, this might be done safely.
The other major concern, with both Merck's indinavir and Abbott's ritonavir, is that the drugs must be used properly, or viral resistance will develop rapidly -- and once resistance develops to either of these drugs, then both are likely to be much less useful (if useful at all) for that patient, at any time in the future. (With the only other protease inhibitor which is now approved -- saquinavir (Invirase(TM)) from Hoffmann-La Roche -- resistance seems to develop more slowly, so the problem is not so critical.) Because of the resistance problem, past practices such as casual dose reductions, "drug holidays," or general laxity in following instructions, must now be changed with the Merck and Abbott drugs. Compliance with instructions on prescription drugs is always a problem, and there is much concern that patients may not comply closely enough to use these new drugs effectively.
Also, resistance can be minimized and patients can get maximum benefit from these drugs if they are used in combination with other approved antiretrovirals; this keeps the overall level of viral replication at a minimum, and reduces the chance that a mutant virus will be resistant to all the drugs. One combination of interest is indinavir plus AZT plus 3TC. But combinations are likely to work best when all of the drugs are new to the patient, so that the virus has never seen any of them before. Since many patients have already taken AZT for a long time, and may have virus resistant to it, other combinations might be better for them. Research is urgently needed to learn more about which combinations are best for which patients.
For these reasons we believe that if people are doing fairly well and can afford to wait, they should consider waiting before starting protease inhibitors. In the next few months, more will be learned about longer-term safety, and how to use these drugs most effectively. Since most or all HIV drugs are likely to work best the first time they are started (due to the absence of resistant virus), it may be worth waiting in order to get the maximum benefit out of one's first exposure to these drugs.
But many people cannot afford to wait. If you do plan to start using Merck's indinavir within the next few months, while supplies are limited, you may want to start as soon as possible, in order to have the best chance of obtaining this drug -- see article below. (There seems to be no supply problem with Abbott's ritonavir, however, and therefore no occasion to hurry to get in line for it.)
HIV breeds well in adenoids: study
HIV breeds well in the adenoids -- the wrinkled, mucous-covered lymph glands in the throat -- in patients who have the virus but have no clinical symptoms, researchers reported last week.
The discovery could be a key to finding how HIV is transmitted through mucous membranes, scientists at The Rockefeller University in New York said in a statement.
These membranes line body cavities, including the mouth and genital openings, as well as the respiratory and digestive tracts, the scientists said.
"Infants who swallow (the AIDS) virus from infected mothers during birth may be infected initially in the mucosal surface of the tonsils," Dr. Ralph Steinman said of the finding, reported in the current issue of the journal Science.
Steinman said that inflamed mucous membranes in the genitalia may promote infection because two kinds of specialized cells that deal with the immune system can interact with HIV in these membranes.
In the study, scientists found HIV in 13 patients' adenoids, where it resided in the wrinkled folds of the mucous membrane. Normally a virus would be drawn into these folds and a strong immune response would be stimulated.
But HIV, which is believed to destroy the human immune system, actually latches on to specialized immune system cells and uses them to help it multiply.
Future research should be focused on these specialized cells, known as dendritic cells, Steinman said.
"We think that studying dendritic cells will be important to designing HIV-1 vaccines, because it is within these cells that the virus must be stopped," he said in the statement.
Study may benefit blacks with KS
by Lidia Wasowicz
UPI Science Writer
An important clinical trial with patients suffering from a cancer characteristic of AIDS is being launched at Stanford University to determine the benefits of a unique light-activated therapy, researchers said last week.
The study of patients with Kaposi's sarcoma, a cancer rare in the general population but common among people with acquired immune deficiency syndrome, will evaluate a photosensitizer, Lu-Tex by Pharmacyclics, Inc., which homes in on diseased tissue, then is activated with light, said oncologist Dr. Alan Yuen.
The drug, which has shown preliminary promise in treating other cancers, stands to be of particular use to blacks and other highly pigmented patients, the researchers said.
When the drug absorbs light energy, it produces excited-state oxygen molecules in the diseased tissues. These molecules destroy the affected cells without damaging healthy surrounding tissues.
Part of a growing cancer treatment field called photodynamic therapy, or PDT, which uses light to zap cancer cells, Lu-Tex -- short for lutetium-texaphyrin -- differs from other compounds in that it is activated by a wavelength of visible light capable of penetrating deeply through tissue, blood and skin pigments, such as melanin.
Currently used photosensitizers absorb light that can only penetrate superficial or small lesions.
To date, Lu-Tex has been tested on breast and skin cancers, including malignant melanoma, at two other sites conducting preliminary safety and dosage evaluations.
Pharmacyclics is developing biometallic pharmaceuticals based on the synthesis of small molecules called porphyrins, which bind metals in a unique way and are capable of capturing and focusing forms of energy, including x-rays and ligth. Pharmacyclics has developed so-called texaphyrins, which have a significantly larger central core and are, thus, able to carry ions of the large metals, such as lutetium, that allow the drug to be light-activated.
Stanford is the first center to enroll Kaposi's sarcoma patients in the study.
"We believe this generation of PDT agents deserves thorough clinical evaluation," Yuen said.
"They appear sufficiently active to become an important treatment if efficacy is established. This new technology can go beyond surface lesions to treat deep or thick tumors and to activate a localized drug even through pigmented tissues. This should allow treatment in highly pigmented individuals, such as African Americans."
Results from the breast and skin cancer trials at the University of Louisville and the Thompson Cancer Survival Center in Knoxville will be reported in June at a meeting of the American Society of Photobiology.
"We are at the halfway point in this study so it is too early to draw conclusions, but I am very pleased by the lack of toxicity, particularly skin phototoxicity, and at the tumor responses we have seen," said Dr. Jeffrey Wieman, principal investigator of the Louisville study.
"It is especially encouraging to see responses with PDT in melanoma because the presence of melanin in these tumors previously has prevented successful aplications of PDT for these tumors."
"We have expanded our clinical studies to include Kaposi's sarcoma because we have seen significant anti-tumor activity in the patients treated to date, including patients with melanomas," said Dr. Richard Miller, president and chief executive officer of Pharmacyclics.
KS originates in the skin, forming highly pigmented, blood-filled tumors.
The study, conducted on an outpatient basis, involves injecting the patient with the drug, then illuminating the tumor.
The researchers caution it is too early to know the true benefits of the therapy, and more studies are needed to ascertain its risks and effectiveness.
The Phase I multi-center trial was cleared by the Food and Drug Administration in late 1995.
Nkomo reveals son died from AIDS
AIDS organizations in Zimbabwe have praised praised Zimbabwe's vice-president Joshua Nkomo for publicly announcing that his second son, Ernest Thuthani (41), died from complications due to AIDS.
The organizations expressed hope that Nkomo's revelation would de-stigmatize the disease and help people to accept it as any other disease which they could discuss openly.
At the burial of his son on April 1st, Nkomo surprised hundreds of mourners when he told them the late Thuthani had joined thousands of young Zimbabweans who had been wiped out by the disease. He said relatives of those who died of the disease should not hide the truth.
Chairman of Zimbabwe AIDS Network (ZAN), an umbrella body for independent AIDS service groups in the country, Ticharwa Masimira, said: "we are quite thrilled that a person of his stature in society was brave enough to reveal what would have remained a closely guarded family secret.
"We take this as a challenge to other leaders and the whole nation to face aids as just another disease which can afflict anyone, no matter what your status in society is," said Masimira.
A Matabeleland AIDS Council (MAC) official who did not want to be identified said her organization commended Nkomo as long as his announcement was a family consensus.
Joseph Nkathazo of the Catholic Commission for Justice and Peace (CCJP) said Nkomo's revelation should help people accept relatives afflicted with aids and treat them normally. Meanwhile, ZAN is planning to meet president Robert Mugabe soon to discuss the possibility of declaring AIDS a national disaster to give the nation the impetus to provide more resources to combat its spread.
"AIDS is becoming the single most hindrance to economic development and yet official statistics do not portray its seriousness," said Masimira.
Health experts estimate that one in every 10 Zimbabweans have been infected by the HIV and that more than 150,000 people had developed AIDS since testing began in 1987. These people were now dying at the rate of about 300 a week.
Masimira said official figures were a very small fraction of reality because most cases were not reported.
Philly Showcase to benefit MAC, MANNA
Philly Showcase, Inc., in response to the recent budget cuts affecting many area charitable organizations, announces the inception of an annual community campaign challenging area businesses to dig deeper and help make a difference in the Philadelphia community.
Philly Showcase has pledged a gift of $1,000 each to seven local charities and is initiating a corporate challenge to fellow business leaders to follow suit to enable Philly Showcase to reach a campaign goal of $150,000.
The kickoff ceremony and press conference will be held at the Philadelphia Marriott Hotel, 12th and Market streets, Sunday, April 28, 1:00 p.m. at Pearls Fashion Show and Luncheon.
The Community Campaign will begin on April 28 and will culminate in July with the Philly Showcase Arts & Culture Charity-Fest, a week-long festival of Seminars, Fashion, Arts & Entertainment presented at the University of the Arts - "ARTS BANK," Broad and South streets, Philadelphia, July 22-July 28, 1996.
The Philly Showcase Community Campaign will benefit The College Fund/UNCF, Women In Transition, Black United Fund, St. Christopher's Hospital For Children, Friends of the Foster Grand Parents Program, Minority AIDS Project of Philadelphia and MANNA.
The Pledge Line for the event will be on 24 hours/7 days (215-925-1024) and for more information, contact Philly Showcase, 215-564-9650, or Nathan Townsend Public Relations at 215-564-9739.