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Issue #208: December 18, 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 AIDS, AIDS Weekly Plus, Antimicrobial Agents and Chemotherapy, Associated Press, CDC AIDS Daily News, The Lancet, Oregon Live NewsFlash Online, Reuters Health Information Service.
Study notes possible cross-resistance with Sustiva
AIDS Action on names reporting: what about care?
Studies highlight adherence problems in trials
NIH awards $6m for HIV brain research
Demo demands commitment from Tenet
Group seeks drug donations for Latin America
Girl with HIV nixed by Girl Scouts
Mother ordered to give AZT to child
PWA sues airline to get job back
T-Cell Speaks: A Letter from the President of WTP
Study notes possible cross-resistance with Sustiva
People with HIV who have already been treated with one non-nucleoside reverse transcriptase inhibitor (NNRTI) are likely not to gain the full benefit from newer NNRTIs such as Sustiva, according to recent studies highlighted in the journal AIDS Weekly Plus.
According to the journal, recent studies have shown that the recently-approved NNRTI, Sustiva (efavirenz), has extraordinarily potent anti-HIV activity. "Its potency holds promise that when used in combination with nucleoside-based inhibitors (NRTIs) it can allow patients the option of saving HIV protease inhibitors for second-line treatment," according to Daniel J. DeNoon, the journal's senior editor.
Moreover, laboratory studies suggested that efavirenz might be active against HIV strains that had developed resistance to other NNRTIs, including the already-approved delavirdine and nevirapine.
But new clinical evidence suggests that NNRTI cross resistance may be of greater importance than had been hoped, according to DeNoon. Veronica Miller of Goethe University and colleagues explored NNRTI cross resistance in clinical samples obtained from patients treated over time with the novel NNRTI loviride.
"Our data indicate that the available newer NNRTIs which retain activity against some HIV-1 strains selected by other compounds of this class in vitro may have compromised clinical efficacy in some patients pretreated with NNRTIs," Miller and her colleagues found.
The researchers reported their findings in the journal Antimicrobial Agents and Chemotherapy.
Miller tested for cross reactivity to nevirapine, delavirdine, efavirenz, HBY-097, and tivirapine.
The degree of loviride cross resistance to all of the NNRTIs tested was extinsime. However, loviride cross resistance to efavirenz was significantly less than that seen with nevirapine.
Unfortunately, phenotypic cross resistance could not be predicted from a genotypic search for known NNRTI resistance mutations.
"If NNRTI resistance exists due to prior NNRTI treatment failure, the options for subsequent treatment with this class of drugs may be severely limited," Miller et al. wrote. "Future research with this class of compounds should include the development of compounds selected for activity against NNRTI-resistant HIV-1 and the clinical testing of NNRTI combinations."
The U.S. Food and Drug Administration has approved abacavir (Ziagen) for the treatment of HIV in adults and children.
Ziagen, an oral medication taken twice daily, is one of a class of medicines called nucleoside analogue reverse transcriptase inhibitors (NRTIs) and is taken in combination with other anti-HIV medications. This combination of medicines helps to lower the amount of HIV found in the blood.
This new drug offers another choice for the treatment of HIV, a virus that mutates quickly and may become resistant to current treatment. Ziagen, available in tablet and liquid form, is approved for adults and pediatric patients older than three months of age.
A fatal hypersensitivity, or allergic reaction, has been associated with the use of Ziagen in at least 5 percent of patients. Symptoms of this reaction may include skin rash, fever, nausea, abdominal pain and severe tiredness.
A written list of the hypersensitivity symptoms is printed on a warning card and is provided along with a Medication Guide to patients by pharmacists. Anyone who experiences a hypersensitivity reaction must stop taking the medicine and call their health care provider immediately. Ziagen should not be taken again after a reaction occurs because more severe symptoms will arise within hours and may include life-threatening low blood pressure or death.
An abacavir hypersensitivity reaction registry has been established - physicians should register patients developing symptoms of hypersensitivity by calling 1-800-258-4263.
All NRTIs can cause lactic acidosis-- a fatal metabolic disturbance that causes an abnormal buildup of lactic acid-- symptoms may include an enlarged liver.
Additional reported side effects of abacavir include nausea, vomiting, fatigue, headache, diarrhea, and loss of appetite.
Accelerated approval of Ziagen was based on analyses of surrogate markers in three controlled studies of up to 24 weeks in duration. At present there are no results from controlled trials with Ziagen evaluating long-term suppression of HIV infection or AIDS.
Ziagen is manufactured and marketed by Glaxo Wellcome Inc.
AIDS Action on names reporting: what about care?
While supporting the broad HIV surveillance goals announced by the Centers for Disease Control and Prevention (CDC), the AIDS lobbying group AIDS Action has expressed concern about recommendations in the CDC plan that states adopt names reporting methods rather than non-name coded reporting.
In a press release, the group said it opposes HIV names reporting as a testing disincentive for at-risk individuals. AIDS Action is also concerned that the federal government is making this proposal without a parallel plan to ensure adequate access to health care.
"HIV names reporting is an oxymoron; by discouraging testing, it won't produce the names that such a system depends upon for success," said Steven Fisher, AIDS Action Communications Director. "Without better access to health care, names reporting is the Titanic all over again - we're creating passenger lists without providing enough lifeboats."
In an attempt to better track the HIV/AIDS epidemic, the CDC has announced rules requiring all states to adopt HIV reporting systems, in which state health authorities would collect the name or coded identifier of everyone who tests HIV positive. AIDS Action supports state HIV reporting systems that use codes rather than individuals' names. Current federal rules only require those with full-blown AIDS to be reported to all states.
A spokesperson for the group said it is concerned that HIV names reporting systems - currently in place in 30 states - discourage already hard-to-reach at-risk individuals from getting tested so they can get treatment and counseling to protect their own health and the health of others. Of the 700,000 estimated HIV-positive Americans, as many as 300,000 may be unaware of their status.
"AIDS Action believes that individuals at risk for HIV infection should be tested often, voluntarily and confidentially," added Fisher. "Names reporting contradicts the strong movement toward better medical privacy in America."
AIDS Action strongly supports efforts to provide better treatment for those who are HIV positive. Under current Medicaid rules, low-income HIV-positive Americans don't qualify for access to benefits, including AIDS-preventing drugs, until they develop full-blown AIDS. AIDS Action is working to enact its Reinventing Medicaid proposal that would ensure that all HIV-infected individuals get access to drug treatment and medical care before AIDS sets in, not after.
"Before we consider reporting in the name of treatment, we must first ensure treatment for those who know they're infected," added Fisher. "It is a national tragedy that low-income HIV-positive individuals don't qualify for Medicaid until they develop AIDS."
Studies highlight adherence problems in trials
A "substantial" portion of participants in a large AIDS Clinical Trial Group (ACTG) were not compliant with prescribed antiretroviral regimens, according to a multicenter team of investigators. Some observed behaviors included not taking prescribed drugs, taking non-prescription drugs and only taking one drug in prescribed combination regimens, they report in the December 3rd issue of AIDS.
A total of 722 plasma samples were randomly obtained from participants in the ACTG 175 during a 1-week period, Dr. Terrence F. Blaschke of the Stanford University School of Medicine in California and co-investigators said. Along with the blood samples, which were taken during routine clinical visits, the investigators also obtained a dosing history.
Overall, Dr. Blaschke's group detected concentrations of prescribed drugs in 75% of the blood samples. However, in 5.0% to 14.5% of the samples, no drugs were detected.
In addition, up to 19% of the samples from patients on the combination treatment arm of the study had only one drug. And as many as 13% of the samples from patients in the monotherapy arm had detectable levels of dideoxynucleosides that had not been prescribed.
The researchers concluded that there were "potentially important variations in adherence to the prescribed treatment regimen, with evidence of usage of non-prescribed drugs and differential adherence."
As more antiretroviral agents become available, they anticipate that the use of non-prescribed drugs by subjects in clinical trials will increase.
"Consideration should therefore be given to the effect of such contamination in the evaluation of blinded comparative efficacy studies." (Reuters)
NIH awards $6m for HIV brain research
Three hospitals and medical schools are receiving $6 million to collect the brains of deceased people with AIDS for research on the disease's neurological effects.
"To the outside world it may sound a little ghoulish," said Dr. Susan Morgello, the project's principal investigator. "This provides a really needed basic resource for research."
A grant from the National Institutes of Health will be used to set up the Manhattan HIV Brain Bank, operated by the Mount Sinai School of Medicine, Beth Israel Medical Center and St. Luke's-Roosevelt Hospital Center. Doctors will identify patients in the final stages of AIDS and recruit them to undergo neurological and psychiatric testing and donate their brains to the bank when they die, Morgello said. The program hopes to recruit about 90 patients annually, beginning next year.
Medical researchers from around the country will be able to apply to use the brain tissue for study, she said.
Among the questions researchers expect to tackle are whether HIV can hide in patients' brains or nervous systems when it is undetectable in blood tests and what impact, if any, new drug therapies have on the brain. (AP)
Demo demands commitment from Tenet
Members of the Philadelphia Unemployment Project (PUP) and the Consumers Education and Protection Association (CEPA) demonstrated on December 17th outside Hahnemann Hospital to demand that Tenet Healthcare, the new owners of most of the old Allegheny University hospital system, publicly commit to provide quality health care to the poor and uninsured.
Tenet is the first for-profit hospital company to have a presence in the Philadelphia region. After the bankruptcy of the Allegheny Health Education and Research Foundation (AHERF) earlier this year, Tenet successfully bid to operate eight of AHERF's nine hospitals, which include the major hospitals providing care to people with HIV.
The Pennsylvania Attorney General has charged that AHERF utilized charitable funds, which were supposed to be kept separately from the chain's operating funds, to pay bills and provide special benefits to AHERF officials during the waning days of the corporation's operation of the nine hospitals. Efforts by We The People, PUP, CEPA and other groups to convince the federal judge handling the AHERF bankruptcy case to force AHERF to restore the misallocated funds, and to force Tenet to make commitments that it will not deny care to the poor in order to maximize its profits, have so far proven unsuccessful.
Many public health and AIDS activists are concerned that Tenet, as a for-profit company, will have little choice but to delay or refuse care to those without health insurance in order to please Tenet stockholders.
The protesters at the Dec. 17th demonstration suggested that Tenet's local marketing slogan, "Let The Healing Begin...," have added to it the phrase, "if you have insurance."
Evonne Tisdale, assistant director of PUP, said that the group has been meeting with Tenet officials ever since the company announced it was buying the former Allegheny hospitals, in an attempt to get Tenet to sign a formal document pledging to provide health care for the poor and uninsured. Nine other city hospitals, out of over 80 non-profit hospitals in the city, have already signed the pledge.
The pledge requires hospitals to treat all people seeking care, help them apply for Medicaid if they are eligible, and work out "reasonable" payment plans for those who can't get insurance.
The Philadelphia Inquirer has quoted Harry Anderson, a Tenet spokesman, as saying that Tenet has already agreed to most of the items mentioned in the pledge in legal documents filed with the bankruptcy court.
Anderson told the Inquirer that Tenet's major problem with the PUP pledge is that it requires that discussions on how care be paid for occur after the patient has been admitted for service, while the company wants to be able to determine the patient's ability to pay prior to receiving service in non-emergency situations.
Tenet has also pledged to maintain its current array of AIDS services, including its Partnership clinic, which is supported in part by Ryan White CARE Act funds to serve low-income and uninsured people with HIV/AIDS.
Group seeks drug donations for Latin America
Aid for AIDS, a not for profit organization based in New York City that provides HIV medicine and information to over 150 persons throughout Latin America, has announced it is in urgent need of HIV medicines. The group is asking PWAs with leftover medicine that is no longer needed, but is still within its expiration date, be donated by contacting Diana or Elkin at (212) 337-8043 or through E-mail at
If you cannot send medicines at this time but wish to fund the work that Aid for AIDS is doing, please make a check or send a money order in the name of "Aid for AIDS." All contributions are tax deductible.
Their current wish list is:
29 bottles of Zerit
37 bottles of Epivir
13 bottles of Viramune
24 bottles of Viracept
27 bottles of Crixivan
26 bottles of AZT
11 bottles of HIVID
6 bottles of Rescriptor
28 bottles of Videx
14 bottles of Invirase
4 bottles of Fortovase
4 bottles of Norvir
3 bottles of Convivir
Aid for AIDS is a non profit organization that distributes HIV medication and information to Latin America. The organization receives donations of medication from people throughout the United States and then distributes it to countries where the medication is unavailable. Aid for AIDS provides life-saving service to people who would have no access to medication if the group did not exist.
Aid for AIDS can be reached at 515 Greenwich St. Suite #506 New York, NY, 10013 (212) 337-8043 .
Girl with HIV nixed by Girl Scouts
Quashawn Donovan dreams of joining the Girl Scouts and doing things other 8-year-old girls enjoy - camping, making crafts and singing songs.
The only trouble is no local Girl Scout troop wants her. Quashawn is HIV-positive and her parents think that's why she's been rejected by nine different Brownie troops.
Quashawn's mother, Dianne Donovan, began looking for a troop for Quashawn to join last month in this Adirondack Mountain town about 45 miles north of Albany. She says she was upfront about Quashawn's medical condition when she spoke with the Adirondack Girl Scout Council and received an enthusiastic response from officials there.
One official, who Mrs. Donovan declined to name, told her that Quashawn would be welcomed as a potential scout by the council and nine volunteer troop leaders.
Then on Nov. 10, Mrs. Donovan said, she received a call from a troop leader in Queensbury who wanted to add Quashawn and two other girls to her troop. The woman explained the sign-up procedures and details about the introductory meeting.
"But when I told her of Quashawn's HIV condition, there was an immediate change in the tone of her voice," Mrs. Donovan told the newspaper. "She then said she was afraid if the other girls' parents found out, she'd lose the other girls in her troop."
Two days later, Mrs. Donovan was told the troop was full.
Efforts to place Quashawn with the other eight troops in the Queensbury area have also failed. "This is the first discrimination I've experienced since my daughter and son came into this household," Mrs. Donovan said.
The head of the Adirondack Girl Scout Council said that the Girl Scouts do not discriminate against anybody with medical conditions.
Council Executive Director Kit Huggard said the program runs on adult volunteers, and it's sometimes hard to find enough volunteers to accommodate the number of girls who want to join.
"We certainly do admit girls who are HIV-positive," Ms. Huggard said. "We will make every effort to accommodate Quashawn as we would for any child." After Quashawn's rejection, the council sent a field director to the Donovan home to induct Quashawn as an individual Girl Scout.
But Mrs. Donovan says her daughter still feels left out.
She says they will keep trying to get Quashawn admitted to a troop in their area.
Mrs. Donovan and her husband, Tim Donovan, adopted Quashawn at eight months, and her brother Danny, now 10, at four months of age. Both tested positive for HIV - the virus that causes AIDS - and given slim chance of survival, but now they're thriving, thanks to protease inhibitor drugs.
Danny was admitted to a Cub Scout troop this fall, even though his parents listed his HIV status on his registration card. (AP)
Mother ordered to give AZT to child
A Eugene, Oregon judge has ordered a mother with HIV to treat her newborn child with AZT as the doctor ordered, according to a report by the Associated Press.
The parents have objected to the treatment because of the possible side effects of the drug and because it is not even certain that the child has been infected with HIV.
The mother, Kathleen Tyson, must also stop breast-feeding the child as part of the court order.
Tyson initially took anti-HIV medication designed to decrease the risk of vertical transmission, but stopped sometime during the course of the pregnancy.
Tyson and her husband are still considering whether to appeal the court order. (AP)
PWA sues airline to get job back
A former Alaska Airlines employee who says he is in good health despite having AIDS is suing the airline to get his senior-level job back.
John Mace, 42, says new drugs have enabled his health to improve to the point that the virus that causes AIDS can no longer be detected in his blood.
Mace worked for the airline for 10 years as a flight attendant and trainer of new flight attendants.
He was diagnosed with HIV infection in 1991 and resigned three years later when his health began to deteriorate.
But by taking a variety of HIV drugs, including protease inhibitors, Mace's condition has improved to the point where he says he can return to work.
When he tried to regain his position of seniority, however, the airline told Mace that its policy is to rehire former employees at the entry level.
An Alaska Airlines spokesman told KIRO-TV News, in Seattle, "In fairness to all of our employees, many of whom leave the company for variety of reasons and want to come back, it was impossible to bring back John at the same level he left."
"It's a simple matter of fairness to all," said the airline. "And John didn't see it that way."
Mace's attorney, Lori Haskell, argues that federal disability laws require the airline to rehire him at his former level.
The trial is currently underway in the U.S. District Court in Seattle. (UPI)
T-Cell Speaks: A Letter from the President of WTP
Recently, an anonymous person living with HIV/AIDS wrote a letter to the Mayor of Philadelphia addressing concerns about the Philadelphia EMA planning process and one of the AACO Directors. To my knowledge, the AACO response in a private meeting was one of laughter. The meeting was attended by well-known people in the AIDS service system such as the HRSA Project Officer and the AACO Directors.
It is my understanding that the AACO Director targeted in the letter speculated on who wrote the letter and their motives, and laughed about the letter. The letter specifically referenced AACO interference in the Philadelphia EMA planning process and one of its Co-Directors' abuse of power and influence. There has been speculation that I wrote the letter or that someone assisted me in writing it.
For the record, I did not write that letter nor did I have anything to do with it.
Please take note that I have no fear in signing my name to anything that I believe in, and anyone who really knows me can vouch for me. Strangely, the anonymous author of the letter did send a copy, with no return address, to my home. I believe they thought that we somehow are comrades in arms or ideas. Guess what? We are, in terms of that letter. In fact, I believe that the letter is right on target. I do wish the Consumer who wrote that letter would have signed it. I would also like for that Consumer to contact me personally, because there is room for a collaboration of ideas and future action in this matter.
As you may know, I wrote a letter to the Mayor on October 26, 1998, about the EMA planning process and AACO interference. To date, I have not received a response from the Mayor. However, I did receive a letter from the Health Commissioner. The response is inadequate and I do plan to address it. To be honest, it did not attempt to deal with the seriousness of the issues I raised.
Finally, again, I understand Consumers fear to publicly claim accusations against such a powerful entity as AACO. However, by not identifying themselves, I believe the author of the letter will not get a response and be dismissed. Yet, Consumers should unite and endorse the legitimate issues raised in the letter.
Below is the text of the anonymous letter, dated November 17, 1998, to which the above article refers.
Dear Mayor Rendell:
I am writing to you about an issue which has long-term adverse consequences for Philadelphians living with HIV, most of whom are minorities, African Americans and Hispanics like me. I was diagnosed with HIV several years ago and have been an activist almost since the time I was diagnosed.
The issue I want to raise concerns the administration of federal AIDS funds coming into Philadelphia. Fundamental to the administration of Ryan White funding is, as I understand it, the democratic process. In this regard, the HIV Commission was set up to plan and direct what services are funded. It is the commissioners, most of whom are persons living with HIV and therefore consumers of funded services, who are supposed to decide how funds are used and direct the administrators how to use them.
In recent months, however, that process has been subverted by officials of the AIDS Activities Coordinating Office, Co-Directors Pat Bass and Joe Cronauer. Ms. Bass however, in my opinion, is the main problem. If you were to attend any recent commission meeting it would be revealed to you how Ms. Bass controls and dominates the meeting, even to the point of answering questions that should be answered by the commissioner manager. She and Mr. Cronauer sit on the commission as voting members, which is a blatant conflict of interest.
Ms. Bass has become a city government liability - an official who arrogantly flaunts the power she has grasped for her own agendas. More significant is the fact she is dictating policy and funding decisions and virtually ignoring the HIV commissioners. In essence, she is striving to take power away from consumers. And there is no accountability nor checks and balances on her actions. Commissioner of Health Estelle Richman obviously has too much on her own plate to fully recognize the abuses of the AACO co-directors.
Many others, both consumers and providers, associated with the HIV Commission as well as HIV service agencies, agree and recognize that Ms. Mass is abusing her power. But they are afraid to say so publicly for fear their funding will be jeopardized or they will be denied essential services.
If the process of administering these federal funds is allowed to be dominated by one person then the intent of Ryan White is being violated. Those of us living with HIV forfeit our participation in determining the services we use.
I hope you will understand my desire to remain unidentified at this time. The politics within the HIV community is something I cannot afford to subject myself to if I were to reveal my identity. My health is too important to sacrifice it to the consequences that I would endure if I revealed my identity at this point. At some point I may decide to go public.
As an African American I have thought long and hard about challenging another African American. But the consequences resulting from Ms. Bass' abuse of authority outweighs the misgivings I have had. The issue I raise with you is for the common good of all Philadelphians living with HIV. All consumers of HIV services in the city must have restored to us our full democratic rights in making decisions about the services we use and having those decisions adhered to. The lives of persons living with HIV and the services we need to live should be guided by our own decisions. They should not be entrusted to a bureaucrat who abuses power and authority to push personal agendas.
(Editor's Note: The above article by WTP President Marvin Crawford, and the anonymous letter, are solely the opinions of Mr. Crawford and the anonymous letter writer, and do not reflect any formal position or opinion on the part of We The People Living with AIDS/HIV of the Delaware Valley, Inc. WTP publishes this information as part of its historic commitment to allowing any people with HIV/AIDS, regardless of their position, title or beliefs, to utilize fastfax and Alive & Kicking! as a forum to express their views.)
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