As many of you know, on June 29 Social Security announced new guidelines for HIV-related disability claims to be effective four days later, July 3. These changes reflect pressures from many sources, not the least being the lawsuit filed in 1990 by 19 New York state residents claiming improper denial of benefits even th
I recently decided to change my doctor at Kaiser. I had a primary care physician whom I had been assigned to when I was enrolled. He was knowledgeable, friendly, understanding and a very good doctor. When I was diagnosed five months ago with HIV, he knew what tests to run and seemed informed about HIV. After reading a
So, you ve tested positive for HIV, or you actually have AIDS; me, too! I was exposed in the late 1970s and, when I tested HIV+ in 1985, almost everyone portrayed HIV as a terminal disease which no one survived; 100% fatal. This message was communicated by the media, physicians, other caregivers and persons with HIV th
(The following testimony was delivered at the Los Angeles County Intergovernmental Hearing on HIV/AIDS in the Latino Community, sponsored by Alianza, the Latino Caucus of the HIV Planning Council.) My name is Dana Gorbea-Leon. I am here today both as the Executive Director of Being Alive, a coalition of people with HIV
In late September, more than 200 people met in Acapulco, Mexico , for the VIth International Conference of People Living with HIV/AIDS. The Conference was organized by GNP+, the Global Network of People with HIV/AIDS. Delegates came from every continent and we all found that, despite tremendous differences in culture,
The business of nutrition starts at the grocery store and ends in the toilet. Everything that happens in-between is the specialty of nutritionists. Since shit still happens, and diarrhea is still a major problem in HIV/AIDS, I ll re-state some of the therapies nutrition can offer for the Big-D. However, diarrhea isn t
A pilot study was performed at UCLA to examine the effect of influenza vaccination on growth of the AIDS virus in the blood of HIV-infected patients having CD4 cell counts of 200-500. Transient increases in levels of circulating HIV were found in the blood of half of 16 patients during the month following vaccination.
Being Alive/Los Angeles; Being Alive Newsletter - November 1993
Walt Senterfitt
The Los Angeles AIDS community grapevine has buzzed of late with questions about whether or not people with HIV should take the influenza vaccine or flu shot this fall. A brief item on the topic in the October 1993 Newsletter may have inadvertently added to the confusion (in Fran McDonald s Bits and Pieces column, page
Being Alive/Los Angeles; Being Alive Newsletter - November 1993
presented by Mark Katz, MD and reported by Jim Stoecker
Dr. Fred Sattler of USC and the Rand Schrader (5P21) Clinic announced that a national study of a new drug, valaciclovir, which may prevent CMV retinitis, has been reopened for new enrollment. This study, known as ACTG 204, rapidly reached its initial quota of 700 people last winter. To speed the evaluation process for
Being Alive/Los Angeles; Being Alive Newsletter - November 1993
presented by Mark Katz, MD and reported by Jim Stoecker
CMV not only attacks the retina, but can attack the inner organs as well. This infection is found in late stage HIV disease and remains the last major opportunistic infection for which no effective prophylaxis is yet available. Now we have word on two large studies that are trying to develop that prophylaxis. If we c
Being Alive/Los Angeles; Being Alive Newsletter - November 1993
presented by Mark Katz, MD and reported by Jim Stoecker
Health care providers have two drugs available to treat CMV retinitis: ganciclovir and foscarnet. Each drug alone can help forestall the spread of the disease. Studies are underway to see if combining these drugs might strengthen efficacy. Both ganciclovir and foscarnet are costly drugs that require a permanent line fo
Being Alive/Los Angeles; Being Alive Newsletter - November 1993
presented by Mark Katz, MD and reported by Jim Stoecker
We have been reporting on liposomal drugs for some time. Liposomal technology encases the drug in a fat globule that is able to take that drug exactly you want it to go. This allows the drug to zero in on the target cells and not disturb normal cells. In the process, side effects may be greatly reduced. A liposomal for
Being Alive/Los Angeles; Being Alive Newsletter - November 1993
presented by Mark Katz, MD and reported by Jim Stoecker
Conocurvone is a chemical found in smokebush, a plant that grows only in Western Australia . The Journal of the American Chemical Society reports that this chemical was found to prevent HIV from infecting cells in the test tube. And, what is most interesting, conocurvone was able to do this at very low concentrations.
Being Alive/Los Angeles; Being Alive Newsletter - November 1993
presented by Mark Katz, MD and reported by Jim Stoecker
Vesnarinone is a drug developed in Japan as treatment for congestive heart failure. Somehow researchers found that the drug has an anti-HIV effect by reducing certain harmful cytokines such as TNF and IL-6. The good news about vesnarinone is that its safety profile is well established. Over 17,000 people in Japan have
Being Alive/Los Angeles; Being Alive Newsletter - November 1993
presented by Mark Katz, MD and reported by Jim Stoecker
We continue to have news of new antiviral drugs in development. One of the latest is ateviridine, being developed by Upjohn . This drug works at the same point in the HIV life cycle as AZT / ddI / ddC and is thus a revers
Being Alive/Los Angeles; Being Alive Newsletter - November 1993
presented by Mark Katz, MD and reported by Jim Stoecker
One of the significant side effects of long-term AZT use is myopathy, an inflammation of the muscle tissue. Symptoms of myopathy may include a pronounced sense of fatigue, muscular weakness, muscle wasting (particularly the gluteal or buttock muscles), and decreased physical endurance. If you have been on AZT a yea
Being Alive/Los Angeles; Being Alive Newsletter - November 1993
presented by Mark Katz, MD and reported by Jim Stoecker
We know that there are numerous strains of HIV. An infected person may harbor several strains, and these strains can evolve or mutate over time. One of the most damaging strains of HIV is termed syncytia-inducing; these SI strains of the virus can cause rapid destruction of the immune system. Dutch researchers, reporti
Being Alive/Los Angeles; Being Alive Newsletter - November 1993
presented by Mark Katz, MD and reported by Jim Stoecker
Most researchers believe that genetic makeup plays a role in the progression of HIV disease. Some corroborating evidence of a genetic cofactor is found in the journal AIDS (July 1993). Researchers report on a study of people with hemophilia in France ; they were able to isolate one HLA antigen that appears linked to pr
Being Alive/Los Angeles; Being Alive Newsletter - November 1993
presented by Mark Katz, MD and reported by Jim Stoecker
In the US, researchers estimate that about 25% of babies born to HIV+ mothers will themselves be HIV-infected. Most transmission, it seems, occurs at time of birth, but transmission may occur in the womb. In a recent study, published in the Journal of Infectious Diseases (September 1993), researchers found HIV in the m
Being Alive/Los Angeles; Being Alive Newsletter - November 1993
presented by Mark Katz, MD and reported by Jim Stoecker
About half of those newly infected with HIV experience some symptoms within five to sixty days after initial exposure. Usually these symptoms show up within two to three weeks. Since the most common manifestations are fever, sore throat, and muscle aches, the episode is usually passed off as the flu. One non flu-like s
Being Alive/Los Angeles; Being Alive Newsletter - November 1993
presented by Mark Katz, MD and reported by Jim Stoecker
We often discuss statistics on HIV infection in Los Angeles County or the United States . We know, however, that this epidemic is worldwide. Recently, the head of the AIDS Control Program in Uganda , an East African nation of 17 million people, estimated that one in eight of that country s residents were HIV+.
Being Alive/Los Angeles; Being Alive Newsletter - November 1993
presented by Martin Delaney and reported by Gilbert Cornilliet
(In early October, Martin Delaney, founder of Project Inform, was the guest speaker at a Los Angeles town hall meeting, co-sponsored by Project Inform and Being Alive. In this first installment of a two-part report, Delaney discusses AIDS-related political events.) Make Your Voice Heard! There is a certain complacency
Being Alive Newsletter; Being Alive/Los Angeles - September 93
Sean Kinney-Drake
When I bolted onto the gay scene in 1982 in Carmel, California, I began a very long process that those of us who come out of the closet must undertake: rebuilding our self-image while freeing ourselves from years of internal hatred. I flushed out the images of self-worth that were damaging along with the ever popular d
Being Alive Newsletter; Being Alive/Los Angeles - September 93
John Alan Cohan
Life insurance has been increasingly used by AIDS patients who want to obtain the payment of life insurance proceeds while still alive. The term living benefits describes this procedure, which is now handled through numerous living benefit companies and which now must be licensed in California under provisions of the s
Being Alive Newsletter; Being Alive/Los Angeles - September 93
Jennifer Jensen, RD
Several characteristics of wasting in HIV/AIDS are all too common, and (at last) there s a trend in the HIV+ community to take up weight lifting and muscle building exercise. The purpose is to gain muscle mass, because that may be what will save your life if you ever get sick. To avoid adding weight as fat, we all need
Being Alive Newsletter; Being Alive/Los Angeles - September 93
Jennifer Jensen, RD
Those who have tried to gain weight and have met with limited success may find it helpful to remember the middle-of-the-night calorie opportunity. Most HIV+ people I know wake up at least once or more each night. Liquid meals sitting near the bed or in the kitchen, ready to drink, represent a potent calorie opportunity
Being Alive Newsletter; Being Alive/Los Angeles - September 93
Jennifer Jensen, RD
People living with HIV/AIDS don t have enough of an appetite to eat the necessary amount for gaining weight. There also could be problems with diarrhea, nausea and other types of non-food problems which have been addressed in other issues of this newsletter. Appetite, also, seems to be a very brief event; if you wait t
Being Alive Newsletter; Being Alive/Los Angeles - September 93
Jennifer Jensen, RD
A big concern in the meal-in-a-can shortcut (besides cost) is flavor. The product manufacturers really make an effort to provide true taste-worthiness, but they often fall short. Also, with medication side-effects, taste can become vastly distorted. That means that what is delicious to me could be like pond scum to you
Being Alive Newsletter; Being Alive/Los Angeles - September 93
Jennifer Jensen, RD
What a concept!! If you need to add weight, the correct way to do it is to eat more calories for more energy, and do strengthening exercises to fortify existing muscle mass. So there are both nutritional and exercise programs to develop in preventing wasting. From the nutritional perspective, the following ideas will b
Being Alive Newsletter; Being Alive/Los Angeles - September 93
Jennifer Jensen, RD
People often ask me how to gain weight. The HIV community is getting pretty savvy about wasting. In fact, the wasting syndrome, as it has come to be known, is not only visible to anyone looking, but is classified as an AIDS-defining condition. (Since 1987 the CDC has classified wasting as such.) The best remedy for was
Being Alive Newsletter; Being Alive/Los Angeles - September 93
M.M. Van Benschoten, OMD
In 1988, Dr. R.S. Chang from UC Davis and Dr. H.W. Yeung from the Chinese University of Hong Kong published their findings on anti-HIV effects of Chinese herbs. Twelve different species of plants were found to completely stop replication of the virus. All of these herbs are non-toxic and have been in continuous use for
Being Alive Newsletter; Beling Alive/Los Angeles - September 93
Mark Katz MD and reported by Jim Stoecker
CMV is one of the opportunistic infections for which no effective prophylaxis is yet available. Now a trial of oral ganciclovir as CMV prophylaxis is getting underway. Ganciclovir has been used successfully as treatment for CMV. The drug, however, has to be taken intravenously, and this has made its use as prophylaxi
Being Alive Newsletter; Beling Alive/Los Angeles - September 93
Mark Katz MD and reported by Jim Stoecker
Those of us who grew up in the 50s remember thalidomide as the drug that caused widespread birth defects in Europe, before being banned. Now we see reports in the popular press about thalidomide s use in fighting the effects of HIV. More reliable than the media, however, is a report in the proceedings of the National A
Being Alive Newsletter; Beling Alive/Los Angeles - September 93
Mark Katz MD and reported by Jim Stoecker
USC Medical Center is conducting a number of clinical trials. Researchers there hold an open meeting the first Tuesday of each month at 6:30 pm. Meetings are held at the Rand Schrader Clinic (5P21) at LAC/USC Hospital and all are invited. USC is currently studying a number of KS treatments, a new herpes antiviral and
Being Alive Newsletter; Beling Alive/Los Angeles - September 93
Mark Katz MD and reported by Jim Stoecker
We are always on the lookout for new ways of fighting HIV. Now we hear about using the spice curcumin, an ingredient in turmeric. Turmeric, as you might know, is the spice used to make curry yellow. Researchers at Harvard have identified curcumin as one of three possible HIV inhibitors shown to be effective in the test
Being Alive Newsletter; Beling Alive/Los Angeles - September 93
Mark Katz MD and reported by Jim Stoecker
The concept of antisense drugs has been around for several years now. These work at the stage of the HIV life cycle at which the virus is making new virus. The drug would introduce something that would bind to the virus so that it could no longer make new viral RNA. By rendering HIV incapable of reproducing, its furthe
Being Alive Newsletter; Beling Alive/Los Angeles - September 93
Mark Katz MD and reported by Jim Stoecker
Last year s front page news heralding the results of in vitro tests of combination AZT / ddI /Neviropine was premature and indicated the danger of publishing scientific results by press release. The resulting hoopla and demand for large scale trials obscured the facts that research was sloppily
Being Alive Newsletter; Beling Alive/Los Angeles - September 93
Mark Katz MD and reported by Jim Stoecker
We have been talking about tat inhibitors for the past few years. This was to be part of the next generation of antivirals that would attack the virus at a point in its life cycle different from AZT / ddI / ddC . The hope was that this approach would be more f
Being Alive Newsletter; Beling Alive/Los Angeles - September 93
Mark Katz MD and reported by Jim Stoecker
As mentioned in last month s update, COMBAT (213.469.5888) is sponsoring a local Phase III trial of the reverse transcriptase inhibitor 3TC . Trial NUCA 3001 will test 3TC vs. AZT vs. the two in combination among subjects in the 200-500 CD4 range with no prior AZT us
Being Alive Newsletter; Beling Alive/Los Angeles - September 93
Mark Katz MD and reported by Jim Stoecker
Exactly one year after releasing results of the study in Amsterdam, the publication of the European-Australian Collaborative Study has finally occurred. This study looked at the effect of early antiviral intervention and will require further examination to integrate the results with those of the Concorde study and ACTG
Being Alive Newsletter; Beling Alive/Los Angeles - September 93
Mark Katz MD and reported by Jim Stoecker
There has been a great deal of controversy on the role of cigarette smoking in the progression of HIV disease. Of course, we know that smoking is, in general, detrimental to one s health. Up to now, we did not have evidence of smoking as a cofactor in AIDS progression. Now we have a study conducted in London on the eff
Being Alive Newsletter; Beling Alive/Los Angeles - September 93
Mark Katz MD and reported by Jim Stoecker
One of the questions that researchers are always asking themselves is why some people with HIV progress more rapidly to serious disease than do others. More and more, they are looking at the role of CD8 cells. Many believe that CD8 includes some factor that plays an important role in stemming HIV replication. Researche
Being Alive Newsletter, Being Alive/Los Angeles - August 1993
The Anarchist AIDS Medical Formulary, written by Charles Caulfield and Billi Goldberg, is now available. This collection of essays, most of which originally appeared in the San Francisco Sentinel, is intended to offer the reader a broad introduction into a new way of thinking about AIDS. It offers a radical departure f
Being Alive Newsletter, Being Alive/Los Angeles - August 1993
Eric S. Daar, MD
Primary or acute HIV infection refers to the earliest symptoms associated with HIV disease. This syndrome classically presents as a constellation of symptoms including fever, headache, sore throat, rash, muscle and joint aches, diarrhea and occasionally thrush at the time of seroconversion (developing antibodies) to HI
Being Alive Newsletter, Being Alive/Los Angeles - August 1993
Jennifer Jensen, RD
In last month s Newsletter, I discussed nutritional supplementation in dealing with HIV/AIDS and focused on vitamin supplements. This month I d like to continue the topic of supplementing your diet with an emphasis on the role of antixoxidants, and a look at suggested mineral supplements. WHAT ABOUT ANTIOXIDANTS, AND W
Being Alive Newsletter, Being Alive/Los Angeles - August 1993
Ken Goldin
If you ve already had one AIDS disease and you re doing well, congratulations! Plan on being a long term survivor and be here for the cure. But now s the time to be alert for the later AIDS diseases. Some can be prevented. Others can be treated successfully, if diagnosed promptly and correctly. MAC
Being Alive Newsletter, Being Alive/Los Angeles - August 1993
Henry E. Chang
During the last few years, considerable progress has been made in the development of antiviral treatments for HIV infection. To date, available antiviral medications such as AZT , ddI , and ddC seem to slow down HIV replication in infected persons, but side
Being Alive Newsletter, Being Alive/Los Angeles - August 1993
Mark Katz, MD and reported by Jim Stoecker
Cryptosporidiosis and microsporidiosis are two of the causes of chronic diarrhea in people with AIDS. To date, we have had no really successful treatment available for either condition. Now the AIDS Clinical Trials Group is developing two treatment studies. ACTG 192 will study paromomycin (brand name Humatin) as treat
Being Alive Newsletter, Being Alive/Los Angeles - August 1993
Mark Katz, MD and reported by Jim Stoecker
Last December, the FDA approved Rifabutin as a prophylactic drug for MAC . At the time of approval, we noted that this drug does not function as Bactrim/Septra does for PCP . Rifabutin does not reduce MAC incidence to near zero. Rather, studies indicated that use of Rifabutin could potentially halve the
Being Alive Newsletter, Being Alive/Los Angeles - August 1993
Mark Katz, MD and reported by Jim Stoecker
OPC-8212 is a drug that has been manufactured and marketed in Japan for three years. It has been used as treatment for congestive heart failure and the FDA may soon approve OPC-8212 for that purpose in this country. In studying the drug in Japan, researchers noted some anti-HIV effects. Now the drug will be studied sp
Being Alive Newsletter, Being Alive/Los Angeles - August 1993
Mark Katz, MD and reported by Jim Stoecker
D4T and 3TC are two more reverse transcriptase inhibitor antivirals that are currently being tested. D4T studies have not yet yielded efficacy data, but the side effects profile has been published. As we have seen in other drugs, peripheral neuropathy is the major side effect. The incidence, however, is somewhat lowe
Being Alive Newsletter, Being Alive/Los Angeles - August 1993
Mark Katz, MD and reported by Jim Stoecker
By the end of 1992, there were only 33 documented cases in the US in which health care workers had been infected on the job. Of these cases, most were nurses or laboratory technicians. Only four physicians had occupationally-acquired HIV. In addition to the 33 documented cases, another 69 cases among health care worker
Being Alive Newsletter, Being Alive/Los Angeles - August 1993
Mark Katz, MD and reported by Jim Stoecker
When the CDC changed its definition of AIDS to include anyone whose CD4 fell below 200, experts predicted that more women than men would be affected. When looking at the AIDS statistics in Los Angeles County for the first five months of this year, we see this prediction borne out. Among men, about 12% of the new AIDS d
Being Alive Newsletter, Being Alive/Los Angeles - August 1993
Sandy Jacoby Klein and reported by Michael Kalla
As more people die as a result of AIDS, the emotional aspects of grief and loss become more complicated. Multiple losses occur in many communities and, when they occur, cause increasing rejection, depression, anxiety, isolation, abandonment and anger. This can lead to self-destructive behavior and increased morbidity a
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Satindar Dua, MS, RD, CDE
Summer time invites you to move outdoors and travel. It is exhilarating and relaxing to be with friends and family. However, eating defensively should still be the primary concern. Make sure that the place where you are going has safe foods and drinks available for your needs. Not all places have the high standards of
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Jennifer Jensen, RD
I don t know anyone who loves taking pills. They sometimes return on you (that s science-speak for `burp-up ), they catch in your throat, they smell awful but if you want to maximize your health potential, and if you think nutrition is important to meet that goal, then you are well advised to strongly consider suppleme
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Jennifer Jensen, RD
People usually want to know how much of which supplement to take. So far, I ve not given absolute directives, and I don t intend to start now. But when knowledge of appropriate ranges is provided, you can be assured of safety. Curiously, the symptoms of vitamin overdose are strikingly similar to those of deficiency. Fo
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Jennifer Jensen, RD
Since deficiencies of vitamin B12 are routinely diagnosed along with HIV, a close look at B12 will help make my point. The fact is that normally, our bodies maintain tissue stores of vitamin B12 adequate for 3 to 7 years. It s important to note that laboratory standards for nutrient adequacy have been established, like
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Jennifer Jensen, RD
RDA stands for Recommended Dietary Allowance issued by consensus of the Food and Nutrition Board, National Academy of Sciences National Research Council. RDAs are designed for the maintenance of good nutrition of practically all healthy people in the United States . The RDAs were last revised in 1989 by a committee of
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Jennifer Jensen, RD
Nutritionally speaking, conventional wisdom has always maintained that we should eat from a wide variety of foods in moderation (the variety and moderation rule). In the late 1980s, nutritionists began adding another component: small frequent meals, the scientific term for nibbling. The idea is to keep the digestive sy
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Sean Kinney
Lately I have been re-acquainted with the ignorance in silence. Once I respected people s right to choose whether or not to disclose. Today I have no patience for those who lie in their silence. Our truth is only told when we each speak the words, I have AIDS, I am HIV+. Silence promotes fear and anxiety from those who
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
John A. Johnson
The IXth Annual AIDS Conference was held at Berlin s ICC, an immense structure resembling a streamline moderne ocean liner gone aground; it seemed from what I heard that AIDS research may also have gone aground. The three drug combination treatment out of Harvard involving AZT ,
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Ferd Eggan
The news from the Ninth International AIDS Conference was not good. The Concorde study, a French-British study that followed a very large cohort of HIV+ individuals who either (a) started AZT regardless of the state of their health or (b) waited until the onset of serious symptoms and then started AZT, seems to show th
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Walt Senterfitt
The National Institutes of Health (NIH) convened its second State of the Art Conference on antiretroviral drug therapy in Bethesda, Maryland, June 23 and 24. The panel of 20, including three HIV+ community representatives (Charles Nelson of Atlanta, Robert Vasquez of New York and Rebecca Denison of Oakland), issued pre
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Ben Cheng
We need new approaches to stop HIV proliferation inside infected cells. The nucleoside analog drugs that inhibit reverse transcriptase (RT) have shown limited usefulness, and there is a lack of other effective anti HIV therapies. Reverse transcriptase and protease are both enzymes, or proteins which act at each step of
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Mark Katz, MD and reported by Jim Stoecker
Active immunotherapy includes the vaccines that we have reported on for the last few years. The news on these is about the same. Some efficacy is noted and studies go forward. We still do not know, of course, whether making more viral antibodies actually slows disease progression. In the area of passive immunotherapy,
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Mark Katz, MD and reported by Jim Stoecker
Compound Q continues to be studied in San Francisco. Study participants are using a much higher dose than what was common a few years back. People appear to be tolerating this high dosage and dose escalation studies are going forward. For the study group, CD4 levels have remained stable for over two years. A German stu
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Mark Katz, MD and reported by Jim Stoecker
One way to get around the issue of which antiviral is the best is to use these antivirals in combination. Most progressive medical providers would agree that two or even three drugs are better than one. ACTG155 studied three groups of almost a thousand people with less than 300 T-cells. One group took
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Mark Katz, MD and reported by Jim Stoecker
Studies are still looking at whether AZT , ddC or ddI is the superior antiviral. A San Francisco study presented at the conference was the first to directly compare ddC to ddI. Two groups in late stage HIV disease were randomized to either ddI or ddC.
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Mark Katz, MD and reported by Jim Stoecker
There are a number of arguments for taking antivirals sooner rather than later in the course of HIV disease. Early intervention seems logical, since we know that HIV is a progressive disease. Why not attack HIV as quickly as possible? In addition, early use of antivirals may avoid the drug toxicities that are seen in l
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Mark Katz, MD and reported by Jim Stoecker
The tat and protease inhibitors work at a different point in the HIV life cycle than do all the antivirals mentioned above. After this year s conference, the hopes for tat inhibitors seem to be somewhat diminished, while the studies of protease inhibitors go forward. The Roche Company has been developing a tat inhi
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Mark Katz, MD and reported by Jim Stoecker
There were reports this year on the development of liposomal AZT . This is a new way of administering the drug; the antiviral is given coated with fat. This prevents the AZT from quickly dissolving in the blood stream and helps target the drug more effectively. With this approach, you can deliver higher concentrations
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Mark Katz, MD and reported by Jim Stoecker
We now have data on people who have been infected with HIV as long as 13.8 years. Of this San Francisco group of long term survivors, 68% have been diagnosed with AIDS, using the pre-1993 definition. This leaves 32%, or one-third, still undiagnosed. Many of these survivors are asymptomatic, with little drop in CD4 leve
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Mark Katz, MD and reported by Jim Stoecker
We have known for some time now the general course of HIV in the body. Right after infection, the virus builds up in the body. The body then mounts its immune response and the viral load goes down. The viral load may stay down for some time. At some point, however, the virus begins to build up as the immune response we
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Mark Katz, MD and reported by Jim Stoecker
There was little new information on transmission of HIV at this year s conference. What we have said in the past continues to hold up. The body fluid of someone infected with HIV (blood, semen or vaginal secretion) has to come in immediate and direct contact with a break in the skin or mucous membrane of another for in
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Mark Katz, MD and reported by Jim Stoecker
Since the last International AIDS Conference in Amsterdam, some half million people worldwide have become infected with HIV. Experts now estimate that there may be 15 million HIV+ people in the world. The fastest growing HIV+ population is in Southeast Asia; in Thailand , studies estimate a growth of some 350,000 cases
Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Mark Katz, MD and reported by Jim Stoecker
This year s International AIDS Conference was the largest yet held, with over 13,000 participants and some 2000 media representatives. Unfortunately, the conference in Berlin brought no breakthrough news. Yet our knowledge about HIV continues to grow. With some 800 lectures, and over 4500 posters and abstracts availabl
Being Alive Newsletter, Being Alive/Los Angeles - June 1993
Walt Senterfitt
Dr. Tony Fauci, a government laboratory scientist and chief of the government s AIDS research, reported in the March 25, 1993 issue of Nature his laboratory s work to date on AIDS pathogenesis. He has been investigating what happens to HIV during the period of clinical latency that sets the stage for the destruction of
Being Alive Newsletter, Being Alive/Los Angeles - June 1993
Mark Denzin
It is commonly assumed that peripheral neuropathy is frequent in late-stage HIV infection. This, however, is uncertain; many patients with late HIV infection show no signs of neuropathy. The most common symptom is severe, burning, aching pain in the feet and legs, which may prevent walking. The causes of this disea
Being Alive Newsletter, Being Alive/Los Angeles - June 1993
Mark Katz, MD and reported by Jim Stoecker
In the January update, reported in the March Newsletter, we discussed a study at Mount Sinai in New York that used intramuscular pentamidine as PCP prophylaxis. Apparently we did not make it clear that, at the present time, this is an experimental regimen only. It has not by any means become a standard of care. As we
Being Alive Newsletter, Being Alive/Los Angeles - June 1993
Mark Katz, MD and reported by Jim Stoecker
We have been reporting on protease inhibitors for over two years now. This drug holds great promise because it targets a specific step in the HIV life cycle and is able to work in chronically infected T-cells, i.e. cells where HIV has already copied itself into the nucleus. A number of large drug manufacturers are
Being Alive Newsletter, Being Alive/Los Angeles - June 1993
Mark Katz, MD and reported by Jim Stoecker
Researchers in the New England Journal of Medicine recently reported the case of a young man who soon after initial infection with HIV, had rapidly falling CD4, despite AZT therapy. They soon found that the virus from the initial infection was, in fact, resistant to AZT. When the man was switched to
Being Alive Newsletter, Being Alive/Los Angeles - June 1993
Mark Katz, MD and reported by Jim Stoecker
Studies on the effect of alcohol, cocaine and marijuana on the progression of HIV disease have reached contradictory conclusions. Some say there is no effect and others say there is. We do know that cocaine increases HIV replication in the test tube. Whether the drug has this effect in someone who is HIV+, however, has
Being Alive Newsletter, Being Alive/Los Angeles - June 1993
Mark Katz, MD and reported by Jim Stoecker
A recent article in the Journal of Infectious Diseases reported on a Stanford study of 36 HIV+ men. Researchers, using highly sophisticated testing techniques, detected HIV in 87% of the semen specimens provided by the men. This detection rate is higher than we have seen in previous studies. In addition, the Stanford s
Being Alive Newsletter, Being Alive/Los Angeles - June 1993
Mark Katz, MD and reported by Jim Stoecker
Medical researchers estimate that at least half of people who seroconvert experience a flu-like illness at the time of initial infection. Fever, headache, muscle aches and the like are common symptoms. In addition to the flu-related symptoms, there is often a skin rash. Researchers report that CD4 count can drop precip
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Charles R. Caulfield
Some HIV+ couples believe that safer sex practices have taken the joy and spontaneity out of their sexual relationship. Taking the recommended precautions serves as a reminder that the partners are HIV infected and may be facing future illness associated with the progression of the infection. In helping these couples,
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Charles R. Caulfield
What are the relative risks of various sexual practices? I classify sexual activity into three classes: those with no risk, those with minimal risk and those that are unsafe. The practices that carry no risk of transmission include: dry kissing, mutual masturbation, anilingus with a barrier for either the insertive or
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Charles R. Caulfield
I am often asked by monogamous HIV+ partners about the risks of practicing unprotected sex within the confines of their relationship. I respond by telling them that there has been no research to date that supports the belief that multiple or repeated exposures to HIV causes a more rapid progression to disease. However,
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Charles R. Caulfield
The increasing prevalence of HIV infection has prompted many to wonder if unprotected sex between two individuals who are known to be HIV+ presents any greater risks than if these individuals had practiced safer sex. Because of the reemergence of increasing rates of all sexually transmitted diseases and because any and
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Charles R. Caulfield
Nine years ago to the day of this writing I was on oxygen in the intensive care unit at the Medical Center of the University of California at San Diego with what was being called a respiratory infection of unknown origin. A young Latino doctor, an infectious disease resident, walked into my room. Rather than approachin
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
John Lewis
It is not just the breathing patterns that must be considered. After the dispersion studies, we did a second study which involved taking X-rays of the nebulizer. We found that a large amount of medication remained in the Y-piece after treatments called dead space medication. To make sure a maximum amount of mediation w
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
John Lewis
Volunteers who were HIV+ and had T4 counts of less than 100 were recruited for our study. Patients with active infection, a history of previous adverse reaction to AP or severe asthma were excluded. To study the effectiveness of this method, deposition scans were performed after our volunteers inhaled AP tagged with te
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
John Lewis
For better results, I suggest the use of the total lung capacity breathing technique (TLCT) which uses the following sequence: - Three normal breaths, - At the end of the third breath, the patient starts a rapid, deep inhalation and exhalation, - At the end of exhalation, the patient starts a slow and deep inhalation
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
John Lewis
There are several factors affecting delivery and deposition of AP. The success or failure of optimal delivery of the drug greatly impacts its effectiveness. I feel optimal delivery of AP to the lungs depends on both the inhalation technique and the pulmonary function of the recipient. These factors will determine the q
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
John Lewis
[An improved method of administering aerosolized pentamidine for Pneumocystis Carnii pneumonia prophylaxis was mentioned in April s Medical Update. This is an edited version of an article that will be published in PAAC Notes later this year. It explains both the breathing technique and Lewis reasons for recommending th
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Garance Franke-Ruta
Tobacco smoking is harmful not only to smokers but also to those who live or work with them, regardless of HIV status. It has been associated with a higher risk of HIV infection. There are conflicting data on the effects of smoking on HIV disease progression, and the effects of pre-existing smoker s leucocytosis do not
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Garance Franke-Ruta
People with HIV are at increased risk for developing anogenital cancers and pre-cancerous abnormalities due to their suppressed immunity and high incidence of infection with the human papilloma virus ( HPV ). HPV is thought to cause most genital warts, lesions, and cervical or anal cancers. However, the development of
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Garance Franke-Ruta
At the VIIIth International Conference on AIDS in Amsterdam last July, a few abstracts associated smoking with the development of certain opportunistic infections and poor outcomes. A group from California found that people diagnosed with cryptococcal meningitis were four times more likely to have smoked within the las
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Garance Franke-Ruta
Because of smoking s general effects on the immune system and the body, some researchers have hypothesized that smoking in early HIV disease may increase the risk of progression to AIDS by activating T4 cells, thus facilitating HIV replication. A study from the Food and Drug Administration ( FDA ) provides prelimi
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Garance Franke-Ruta
People who smoke tobacco are more likely to become HIV-infected or participate in high risk behaviors that facilitate HIV transmission than those who do not. This has been shown in groups as diverse as Haitian women, Californian gay men, and teenagers from Oregon. Often attributed to people ignoring prevention messages
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Brian A. Smith, DC
You may have heard the oft-repeated phrase that stress is detrimental to your health. Just what does this mean? Is there truth to this? Stress is necessary for life. Stress represents any changing environment. What we mean to say is negative stress will suppress your immune system. Stress can be of many types. The most
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Jennifer Jensen
We are at particular risk for food-borne infection while travelling. Observe all of the safety warnings you ve ever heard, plus as many other neurotic behaviors as you can imagine. For example, if you re flying, the food served on the airplane is probably sufficiently awful that not eating it should be no problem. But
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Jennifer Jensen
Like a visit to the Third World, says Dr. Waites, if you re not sure about any food, ask. If your food seems undercooked, send it back. You may have to wait 5 or 10 minutes, but you won t get sick because you didn t. Also, remember that both water and ice cubes served in restaurants may harbor microbial populations. A
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Jennifer Jensen
As tedious as it may be, adequate food safety even extends to defrosting frozen foods. Room temperature is the most pleasant environment for bacteria. Since frozen foods thaw unevenly, by the time the insides are defrosted, the outsides may be thriving with microbial growth. Safely defrost frozen food in the fridge or
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Jennifer Jensen
Former cutting-board advisories called for plastic (rather than wood) cutting boards, but on March 4, the LA Times warned that plastic can be worse than wood - it seems to hang onto bacteria more aggressively! Current advice is to use those very cheap paper plates as cutting surfaces. The plates are disposable, so you
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Jennifer Jensen
Refrigerate perishables as quickly as possible. Wash produce ASAP. Use a stiff brush and/or a teflon scrubbie. When possible, peel produce. You ll not only lose the germs, you ll also avoid the fiber from skins of veggies and fruits that usually make diarrhea worse. Dr. Larry Waites of San Francisco warned recently in
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Jennifer Jensen
Reports of germ-laden burgers and meats are enough to inspire vegetarianism, but if you still eat meat fish or poultry, remember that they drip! The juices exuded from flimsy meat wrappers require caution; adequate cooking can make the food safe, but any germs in the leaking juices could contaminate other foods which w
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Jennifer Jensen
Cryptosporidium may be one of the worst opportunistic infections associated with HIV disease, and possibly one of the most avoidable. While one may need to act a bit paranoid, warding off this particular OI warrants the extra effort. In the 1992 year-end issue of Searchlight, a cover story warned that Los Angeles area
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Jennifer Jensen
Cooked poultry should be very tender with no trace of pink in the white meat, and fish must be flaky no runny or mushy flesh. Of course, raw fish (including sushi, oysters, undercooked shrimp/lobster, raw clams) is always a risk. These facts were discussed in a Tuesday night nutrition group. One Friday night following
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Jennifer Jensen
Remember Jack-in-the-Box? Sizzler? Here, for your use and benefit, is the story of how they went wrong and how to keep yourself safe; what happened there could happen to you. ONCE UPON A PASTURE When animals are prepared for sale, external meat surfaces are exposed to intestinal contents (where the deadly E. coli bact
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Mark Katz MD and reported by Jim Stoecker
Intestinal microsporidiosis is one of the causes of chronic diarrhea in people with AIDS. This infection was unknown only a few years back. One problem in detecting this infection is that the organisms are so small that they can only be seen by an electron microscope. Another problem with detection is that the organis
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Mark Katz MD and reported by Jim Stoecker
We have reported in the past about the various anti-HIV vaccines that are being studied. These vaccines are seen as possible immune boosters for people already infected with HIV. This is because the vaccine raises HIV antibody levels, and researchers believe that higher antibody levels may forestall the advance of HIV
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Mark Katz MD and reported by Jim Stoecker
Interleukin 2 is the best immune booster that we currently have available. Studies from 1989 and 1990 showed IL-2 doubling the T-cell count of recipients. The problem with the drug, however, has been that, in order to get enough to be effective, the patient needed almost continuous infusion. Obviously, IL-2 needed to
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Mark Katz MD and reported by Jim Stoecker
The recent media splash in AIDS research was what we are calling convergent combination therapy . This was the three drugs, all acting at the same point in the viral life cycle, that stopped all HIV activity in the test tube. The theory behind this approach is based on the fact that for a virus to survive or outsmart
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Mark Katz MD and reported by Jim Stoecker
In the US, studies have generally concluded that the risk of an HIV+ woman transmitting the virus to her fetus is about 30% or 3 in 10. In Africa, the risk of transmission is considered to be a good deal higher and this may be due to a different strain of the virus. Studies of pregnant American women show that the risk
My own reactions are several. Though important questions remain and must be explored, it was a large and well-conducted study whose results are quite possibly valid as far as they go. They are also no great surprise. They fundamentally underscore the gross inadequacy, at best, of currently available antivirals. Monothe
The NIH, American researchers who did the 019 study, and many clinicians committed to early intervention with AZT and other antiretroviral drugs were quick to criticize the Concorde study and its announcement. They complained about (and, indeed, nearly everyone was frustrated by) the release of summary results in a sho
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Walt Senterfitt
The researchers published a summary and preliminary analysis of their three-year data as a letter in the April 3 issue of the top British medical journal The Lancet. The central finding reported was that after three years, there was no significant difference in survival or progression between the Immediate
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Walt Senterfitt
Enrollment was open to anyone who had not yet developed AIDS or symptoms and was willing to be randomized to receive, on a blinded placebo-controlled basis, either 1000mg/day of AZT immediately or a placebo which would be switched to the same dose of AZT only after symptoms developed. The two arms were called Immedi
Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Walt Senterfitt
The airwaves were flooded in early April with news and interpretations of preliminary results from a large European study of early vs. later use of AZT . The study, a British-French-Irish collaboration known as the Concorde, began in October 1988 and involved 1749 HIV+ individuals, 15% of them women.
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Ken Goldin
If you re still only HIV positive, congratulations! Stay that way! But during 1992, more than 46,000 Americans crossed the line from HIV positive to AIDS. And most of their diagnoses involved the big four of first AIDS diseases. If you do get an AIDS disease, the odds are high your first one will be one of these:
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
edited by Nancy MacNeil
The AIDS education motto, It s not who you are, it s what you do, is absolutely true in the most literal sense. Nonetheless, the now standard procedure of targeting certain population groups for education and services reflects an understanding that who you are may strongly influence what you do and in what context you
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
edited by Nancy MacNeil
Lesbian and bisexual women face discrimination in many drug and alcohol treatment programs. Lesbians and bisexual clients often face hostility form both staff and other clients and often do not receive counseling for their drug problems because attention is inappropriately focused on their sexual orientation. In such a
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
edited by Nancy MacNeil
Much of the research conducted to date is structured in a way that makes it impossible to glean information relevant to lesbian/bisexual IDUs from the data that have been collected. For example, researchers concerned with HIV risk often equate sex with intercourse (that is, activities that require penile penetration) a
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
edited by Nancy MacNeil
The Association for Women s AIDS Research and Education (AWARE), a San Francisco HIV research endeavor that has gathered information on both sexual identity and sexual behavior, concluded that self-identified lesbians were more likely to be seropositive than women identifying as either bisexual or heterosexual. Another
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
edited by Nancy MacNeil
This is an abridgement of Assessing Risk in the Absence of Information: HIV Risk Among Women Injection-Drug Users Who Have Sex with Women by: Rebecca M. Young, Gloria Weissman, and Judith B. Cohen. Published in AIDS & Public Policy Journal Volume 7, Number 3 from the Fall of 1992. Introduction: Lesbian/bisexual Inj
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Charles R. Caulfield
The National Research Council produced a document a few weeks ago entitled The Social Impact of AIDS, in which the AIDS epidemic is reduced to a minor sociological phenomenon limited largely to minority populations in specific urban areas. Council spokesman, Dr. Don C. Des Jarlais, made the statement, as reported by Gi
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Joshua Levy, M.D., Principal Investigator
Infusing hyperimmune antibodies against viral or bacterial infections has been utilized historically in a wide variety of applications. During the past century, hyperimmune plasma products have been successfully used in the treatment or prophylaxis of diseases such as polio, tetanus, Rh disease of the newborn, hepatiti
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Walt Senterfitt
Martin Delaney s town hall meeting report in this issue supplements my initial report in the March issue. It is particularly maddening that this information has been essentially available for nearly a year, but it took a misleading burst of media hype to jostle loose an accelerated plan for testing in people from the g
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Mark Katz, MD and reported by Jim Stoecker
Two dentists from Philadelphia, writing in the New England Journal of Medicine, are reporting great success in treating KS oral lesions. They use a type of interlesional therapy called Sclerotherapy. A solution is applied directly to the oral lesion; the patient experiences no pain. In a small study, the dentists found
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Mark Katz, MD and reported by Jim Stoecker
As regular readers of this medical update know, we have long held that Bactrim/Septra is superior to aerosolized pentamidine for PCP prophylaxis. A number of studies have shown this superiority. Now we have word from a few sources asking us to reconsider. Respiratory therapists suggest that the breathing technique used
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Mark Katz, MD and reported by Jim Stoecker
Passive immunotherapy has been around for some four years now. This approach is based on the same principle as active immunotherapy. The body s antibodies to the virus are increased in order to strengthen one s ability to fight HIV. This immunotherapy is termed passive because the patient makes use of the antibodies of
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Mark Katz, MD and reported by Jim Stoecker
UCLA will soon begin a Phase II study of the gp120 vaccine for people with over 600 T cells. This is an example of active immunotherapy. This approach involves using the body s own ability to make antibodies. In the case of gp120, a portion of the viral envelope is injected in order to stimulate increased production of
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Mark Katz, MD and reported by Jim Stoecker
We have talked about autologous CD8 expansion in the past. This is the process where CD8 cells are taken from an individual and subjected to a technique that grows the cells outside the body. The CD8 cells are then reinfused into the individual. This, of course, greatly increases the number of CD8 cells in a person s b
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Mark Katz, MD and reported by Jim Stoecker
The Journal of Infectious Diseases has published results of a Phase I trial of D4T. In reviewing side effects in the original 41 patients, researchers found that peripheral neuropathy was quite common once the dosage was raised to more than 4 mg per kg of body weight. In dose levels between .5 and 1 mg/kg, however, occ
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Mark Katz, MD and reported by Jim Stoecker
Many of you may have read the stories in the Los Angeles Times and elsewhere about the federally sponsored study that compared ddI to ddC . The newspapers touted a preliminary result that showed there were fewer deaths among the study subjects on ddC than there were among those on ddI. The implication was that ddC was
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Martin Delaney, with Warren Jones
I hope I ve been able to show you that there is a future possible. For a lot of people that future is already here. From the immune restoration process there are things possible, relatively doable things, that aren t being done now that could make an enormous difference in who survives this disease. Regardless of wheth
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Martin Delaney, with Warren Jones
On a side note, the researchers were amazed to discover that something already available was not already happening, and that is giving people with under 50 T-cells intravenous immune globulin, IVIG. No studies have been made of IVIG for people under 50 T-cells. Why? Because the government and the insurance companies ha
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Martin Delaney, with Warren Jones
It s like going to your uninfected neighbor and borrowing a cup of T-cells. Previous experiments tried to transfer the bone marrow from one uninfected identical twin to the other (infected) but it did not work. But what about transferring just the parts that you need? What about just transferring the lymphocytes, the T
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Martin Delaney, with Warren Jones
I use chemicals as a generic term here for things like IL-2 , THF, TP5, Thymacin Alpha 1, etc. The problem is that different drug companies own each of these chemicals and that each on is trying to prove that My thymic hormone is the right one. The others are all bogus. The reality is all of these are derived from the
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Martin Delaney, with Warren Jones
If you re trying to grow an immune system from what s left of your old immune system and you ve just got some little small broken pieces left it s pretty tough to do. It would be a lot easier at late-stage disease if you had, a little earlier on, when you were in better shape, stored some of the T-cells of your own imm
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Martin Delaney, with Warren Jones
For the second time, Project Inform invited the 30 top names in AIDS research around the world and we placed them in rooms, without the media, without the public, and literally forcing them to work on some very specific narrowly-defined problem The problem is this: Is it possible to rebuild the immune system in later-s
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Martin Delaney, with Warren Jones
The oldest figures that we ve got coming out of San Francisco trace people back to 1978. That s the first year in which they began collecting blood samples that we had stored up in freezers and could later retest for HIV. Out of that, they have a cohort of about 600 people who have been infected at least since 1978. So
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Martin Delaney, with Warren Jones
The confusion in interpreting recent studies comparing ddC to ddI or ddI to AZT as single-drug therapy in advanced infection is mostly beside the point.The current anti-virals that we have (AZT, ddC, ddI, etc.) are so weak, so poor and so ineffective, tha
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Martin Delaney, with Warren Jones
The big news item, last month, was the three-drug combination therapy . That story actually came out last year at Amsterdam. The data behind that wonderful breakthrough, is more than a year and a half old. The question that comes to mind is If it was so damn good, what have you been doing with it for the last year and
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Martin Delaney, with Warren Jones
There is no such thing as a dormancy period in this disease. There are periods in which the virus is replicating and it s active, but the immune system is effectively containing it. There is a war going on, but it s a war where there s sort of a checkmate for long periods. It s not a dormancy. Dormancy would mean that
Being Alive Newsletter, Being Alive/Los Angeles - April 1993
Martin Delaney, with Warren Jones
On March 8, Martin Delaney was the guest speaker of a Town Hall Meeting in West Hollywood. Thanks to Warren Jones, a complete transcript of this evening is available at the Being Alive office. A summary of his talk follows. EXPECTATIONS FROM THE CLINTON ADMINSTRATION We were all excited, back in November, to think that
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
William H. Koar
Recently, Daniel Wang and I conducted a study on the effect of Qi Gung/Ming Dao on HIV infection. Ming Dao is an ancient Chinese healing method used in the Far East to treat chronic diseases like cancer and tuberculosis . It involves meditation, movement, visualization, sound and breathing. Daniel wanted to know scient
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Satindar Dua
Stress is a pressure imposed on the body by changed situations in our daily living. It can block the full expression of our physical and mental energy. This results in fatigue produced through mental overworking (anxiety), inadequate rest, restlessness, sleeplessness, irritability and feeling of depression. All these h
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Robert S. Jenkins, M.D.
The Centers for Disease Control (CDC) recommend tuberculosis and syphilis testing of every HIV+ patient. The tests to detect these two diseases are simple to perform and important. Tuberculosis is making a resurgence in the United States and early detection and treatment is imperative for control of this disease.
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Robert S. Jenkins, M.D.
Vaccine recommendations for HIV+ individuals can be a much more complicated topic than this brief summary allows. Nevertheless, the following recommendations are generally accepted by physicians who treat HIV+ patients. Measles, Mumps And Rubella (MMR) are usually given during childhood. In fact, in the US they are req
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Studies conducted among people who are infected with HIV have shown that moderate exercise, appropriate diet and nutrition, and stress reduction may be important in maintaining immune function. Ask your doctor to recommend a program that would be suitable for you. (Provided as an educational service by Adria Laboratori
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Several drugs are being tested to determine if they can delay or prevent the onset of MAC by intervening before a person has positive blood cultures or clinical symptoms. Mycobutin was recently approved by the Food and Drug Administration as prophylaxis for MAC. See Mark Katz s Medical Update on page 4 for more complet
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Disseminated MAC infection may significantly contribute to wasting syndrome (severe weakness and weight loss) of a person with AIDS. In some cases, it has been considered the primary cause of death.
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Although there is currently no standard treatment universally accepted or approved for MAC infection, most physicians agree that usually 2-5 drugs must be used in combination to have any possibility of effectiveness. Some experimental drugs are currently being used in study protocols or on a compassionate release basis
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
A preliminary laboratory test called an acid-fast stain can be used to determine whether or not mycobacteria are present in a blood or tissue sample. Although results can be obtained usually within 24 hours, the acid-fast test does not identify specific types of mycobacteria. A doctor will usually be able to confirm th
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Approximately 20-25% of people with AIDS will be diagnosed with MAC disease within two to three years after their diagnosis of AIDS. Some studies have suggested higher rates of infection; in autopsy studies MAC organisms have been detected in approximately 50% of persons who die of an AIDS-related condition. As mention
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
It is possible for a physician to partially determine how well a person s immune system is functioning by performing a blood test called a T4 cell count. A person is at greatest risk for MAC when the T4 cell count is less than 100 (this means there are less than 100 T4 cells per cubic millimeter of blood). However, mos
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Persistent fever (with or without night sweats), chills, weight loss, weakness, and severe anemia are the most common symptoms of MAC infection. The term wasting syndrome is used to describe a condition of extreme weight loss and weakness often seen in MAC infection. Less common symptoms are chronic diarrhea and abdomi
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
MAC infection is not limited to people with AIDS; cases have been reported among the following: 1) severely malnourished people, 2) cancer or transplant patients on immuno-suppressive chemotherapy, 3) people with some types of chronic lung disease, and 4) (sometimes) seemingly healthy people. However, researchers hav
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
MAC organisms usually enter the body in food, water or inhaled dust or air containing water droplets. These organisms are difficult to avoid because they are commonly found throughout the world in water supplies, dust and soil. In an individual with a healthy immune system, MAC organisms are inhibited or destroyed by
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
No. The terms MAC and MAI are interchangeable. MAC (Mycobacterium avium complex) and MAI (Mycobacterium avium-intracellulare) both include the same two specific organisms: Mycobacterium avium and Mycobacterium intracellulare.
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
MAC is an opportunistic infection caused by two similar types of bacteria named Mycobacterium avium and Mycobacterium intracellulare. Because these bacteria are so similar, they are referred to together as MAC, which stands for Mycobacterium avium complex (the disease or infection they cause is also commonly referred
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Microorganisms that do not usually cause disease in healthy individuals may be responsible for serious illness in a person whose immune system is weakened. These microorganisms are called opportunistic because they produce illness only when they infect a person whose immune system is not functioning properly. The immun
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Jennifer Jensen, RD
Shit happens! That is, if you re lucky. Otherwise, you may have massive, intractable, watery, secretory diarrhea, as your doctor might put on your medical chart. Probably, all people living with HIV have diarrhea at various stages of infection. There are a lot of opportunistic infections that can cause diarrhea, and a
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Henry L. Poscher, M.D.
The dust borne disease known as Valley Fever has increased to epidemic proportions in Kern County, with over 400 people infected in the last year. Increasing numbers of cases have been reported in Orange and Ventura Counties as well as the desert areas. The disease is caused by the fungus coccidioidiomyces immitis, a s
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Mark Katz, M.D. and reported by Jim Stoecker
Mount Sinai Hospital in New York has reported on its study of intramuscular pentamidine as PCP prophylaxis. Ninety-six patients were included in the protocol, and researchers report a statistically significant lowering of PCP occurrence among those in the study. Use of aerosolized pentamidine has caused some problems w
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Mark Katz, M.D. and reported by Jim Stoecker
Mycobutin (generic name: rifabutin) has now received FDA approval as a drug to help prevent MAC . This is a significant step forward. We now have a second opportunistic infection ( PCP is the other) for which approved prophylaxis exists. Disseminated MAC is a late-stage infection that is usually only seen
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Mark Katz, M.D. and reported by Jim Stoecker
In November, the FDA approved BW566C80 as treatment for PCP . The drug, developed and marketed by Burroughs Wellcome, carries the brand name Mepron and the generic name atovaquone. Mepron is approved for treating PCP when a patient has failed on or is intolerant of Bactrim/Septra. Thus, it is a second line drug and rep
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Mark Katz, M.D. and reported by Jim Stoecker
While the controversy continues on whether AZT , ddI or ddC is the superior antiviral, the preliminary studies of what we have termed the next generation of antivirals go forward. These new antivirals intervene at a point in the HIV life cycle different fr
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Mark Katz, M.D. and reported by Jim Stoecker
We have reported in the past on the results of the ACTG 116B and 117 studies. In these studies, all subjects had to have been on AZT therapy for at least 16 weeks prior to the start of the study. Three study groups were formed; one was on 750 mg of ddI a day, the second
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Mark Katz, M.D. and reported by Jim Stoecker
The National Commission on AIDS has asked drug manufacturers to include warning labels on their over-the-counter products for vaginal candidiasis . Preparations such as Monistat-7, Gyne-lotrimin and FemCare have become available without prescription over the last year. Right now, the labels caution women to consult a p
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Mark Katz, M.D. and reported by Jim Stoecker
For a serodifferent couple, where the man is positive and the woman negative, pregnancy has been a problematic issue. Medical counselors have cautioned against conception because of the danger of infection for both the woman and the baby. We now have a report out of Milan on the use of artificial insemination for such
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Mark Katz, M.D. and reported by Jim Stoecker
Whenever there is a discussion about safer sex, there is almost always a question about pre-ejaculate (or pre-cum ). Can this be a source for transmitting HIV? We know that the pre-ejaculatory fluid contains white blood cells and thus, in an HIV+ man, could contain infected T-lymphocytes. Until recently, however, there
Being Alive Newsletter, Being Alive/Los Angeles - March 1993
Walt Senterfitt
In the last few days before we go to press, newspapers and especially television have been trumpeting the results of experiments at the Massachusetts General Hospital and Harvard Medical School published in the British journal Nature. A medical and graduate student at Harvard, Yung-Kang Chow, conducted experiments desi
Being Alive Newsletter, Being Alive/Los Angeles - February 1993
Mary Lucey
AIDS awareness is common in this day and age. We know now that HIV/AIDS knows no boundaries. However, in the health care profession, there is still an abundance of ignorance. Mainstream physicians still, in 1993, tell women that they don t have to worry about AIDS. Even women who have other sexually transmitted disease
Being Alive Newsletter, Being Alive/Los Angeles - February 1993
Nancy MacNeil
The Centers for Disease Control and Prevention have expanded the surveillance definition of the Acquired Immune Deficiency Syndrome (AIDS). Any person who is infected with HIV and has a count of fewer than 200 CD4 cells per cubic millimeter of blood is now classified as having AIDS. The new definition also includes rec
Being Alive Newsletter, Being Alive/Los Angeles - February 1993
John Alan Cohan
A jury recently awarded a Northern California plaintiff $400,000 for mental distress and related damages in connection with an AIDS blood test that an insurance company ordered when processing the man s life insurance application. While an applicant for life insurance (but not health insurance) can be asked to take an
Being Alive Newsletter, Being Alive/Los Angeles - February 1993
Jim Stoecker
A recent article in Newsweek reported that surveys of young gay men indicate that an alarming number are ignoring safer sex guidelines. One study concludes that some 40% of San Francisco s gay men between the ages of 20 and 24 are HIV+. And experts estimate that some 40,000 gay men can still be expected to seroconvert
Being Alive Newsletter, Being Alive/Los Angeles - February 1993
Walt Senterfitt
Retinitis is an inflammation that damages the retina, the thin, light-sensitive tissue at the back of the eye. One cause of retinitis is infection with cytomegalovirus ( CMV ), a virus in the same family as herpes virus. Most people have CMV infection at some time in their lives, with nothing more than a mild, flu-like
Being Alive Newsletter, Being Alive/Los Angeles - February 1993
Walt Senterfitt
Researchers and clinicians will be analyzing the full reports and discussing the implications in clinical practice. Early thinking is that the 116A results will confirm AZT as the first choice nucleoside drug for monotherapy in new patients. Those for whom AZT does not seem to be working or who have major adverse react
Being Alive Newsletter, Being Alive/Los Angeles - February 1993
Walt Senterfitt
On January 22, results of a study comparing ddC to ddI were announced. This study was conducted the CPCRA (Community Programs for Clinical Research on AIDS), a community-based rather than university-based network. The reported trial enrolled 467 participants, about one-third of them non-white, one-quarter current or fo
Being Alive Newsletter, Being Alive/Los Angeles - February 1993
Walt Senterfitt
While waiting (endlessly, it seems) for something better, we continue to amass bits and pieces of new information about the nucleoside-analogue antiviral drugs ( AZT , ddI , ddC and the soon-to-come second generation
Being Alive Newsletter, Being Alive/Los Angeles - February 1993
Walt Senterfitt
HIV Disease Nutrition Guidelines, a pamphlet prepared by the Physicians Association for AIDS Care, 1992. A clearly written overview of strategies for successful nutrition, with written and telephone resources for more information. Available free from Being Alive or PAAC, 101 West Grand Avenue, Suite 200, Chicago, Illin
Being Alive Newsletter, Being Alive/Los Angeles - February 1993
Walt Senterfitt
The take home message was perhaps most important for providers, to take nutrition and malnutrition seriously as a major and discrete part of HIV/AIDS care if they haven t already. At that general level, the same goes for those of us living with HIV in our bodies. The general awareness may be sufficient to goad each of
Being Alive Newsletter, Being Alive/Los Angeles - February 1993
Walt Senterfitt
Even when hypermetabolism is clearly present, not everyone loses weight. Some respond to nutritional supplementation and others don t; some responders gain lean body mass and some gain only fat. Scientists and physicians simply do not understand the metabolic alterations associated with HIV and AIDS well enough. A numb
Being Alive Newsletter, Being Alive/Los Angeles - February 1993
Walt Senterfitt
A simple analogy to starvation (prolonged inadequate nutrient intake to meet energy needs) is not sufficient to understand malnutrition in HIV/AIDS. While much remains to be explained, there are at least three categories of causes which are quite likely to overlap: altered food intake, malabsorption, and alterations in
Being Alive Newsletter, Being Alive/Los Angeles - February 1993
Walt Senterfitt
The life-threatening impact of severe malnutrition and wasting comes from the apparent biologic fact that there is a minimum percentage of ideal body mass or weight below which life is not sustainable. From studies of various wasting-associated diseases (like cancer and advanced tuberculosis ) as well as AIDS, this
Being Alive Newsletter, Being Alive/Los Angeles - February 1993
Walt Senterfitt
The central premise of the symposium was that medical care providers tend to overlook or minimize the role of nutrition and malnutrition in the length and quality of life with HIV/AIDS. Reasons for this serious omission range from the long-standing inattention to nutrition in medical school curricula, to providers bein
- Terry McGovern files a class action suit against the FDA on behalf of women with HIV/AIDS. The law suit will address women s concerns about being excluded from AIDS drug trials. - As more trials begin to open up to women, the challenge will be to get women to participate. It is becoming increasingly clear that in ord
- The Centers for Disease Control expanded the AIDS surveillance definition, adding invasive cervical cancer, the first women s specific manifestation of HIV, to the official list of opportunistic infections. - The Public Health Services in Culver City announced that recurrent, hard to treat vaginal yeast
Dr. Enilda Abreu, PhD and reported by Nancy MacNeil
There are still many problems in recruiting and retaining women in AIDS clinical trials and these require prompt attention to advance research. Women have special needs because they are burdened with child bearing. It is still extremely difficult for HIV+ women to get into protocols because trials are not designed for
The fact that someone has an infection that is communicable, not yet curable and potentially fatal, reflects upon that person s most basic sense of identity and security, and it is difficult to imagine information more confidential than being infected with HIV. In a world where personal information is routinely leaked,
The use of acupuncture and Chinese herbal medications has become one of the most commonly used alternative therapies for AIDS. Its use has become so widely accepted, that two Chinese Medicine Clinics in San Francisco have been awarded contracts through the SF Health Department s AIDS Office to provide Chinese Medical t
The recent changes in SSI demand fundamental clarification. This was NOT an SSI cut, as the State of California has repeatedly called it. The state decided to reduce the amount it already had been paying in conjunction with Social Security for the SSI check. When something you already have is taken from you, it is not
One of the more promising immune-based therapies under investigation involves the removal of CD8(+) or T-8 white blood cells from the bloodstream of an HIV+ person in order to vastly expand the number of these cells in a laboratory and then reinfuse them back into the same person. The rationale for this therapy is base
In January 1991, the UCLA/UCSF AIDS Caregiver Study began interviewing people who are caring for a partner, friend, or relative with AIDS. A number of Being Alive members have participated. Caregivers (many of whom are themselves HIV+) who are enrolled in the study are interviewed three times, every six months, and are
On December 7, Burroughs Wellcome announced that it will cap the price of acyclovir ( Zovirax ) for patients who pay for the drug themselves. Those who use more than 730 grams (for which Burroughs Wellcome charges wholesalers about $2500) in a single calendar year will receive up to 730 grams additional at no cost for
presented by Mark Katz MD and reported by Jim Stoecker
In a random retrospective study of HIV+ patients over a five year period, researchers found that 23% of those HIV+ had reported some form of herpes simplex infection. Among those diagnosed with AIDS, 53% reported herpes simplex infection at some point. With herpes simplex so common, the question becomes how to prevent
presented by Mark Katz MD and reported by Jim Stoecker
CMV retinitis threatens the vision of many in late stage HIV disease. To date, we have used two main drugs to threat this condition. Both ganciclovir and foscarnet can forestall and to some extent reverse visual impairment brought on by CMV retinitis. Both these drugs, however, have serious side effects at the dosage
presented by Mark Katz MD and reported by Jim Stoecker
TNP-470 (formerly called AGM-1470) is an angiogenesis inhibitor, i.e. it prevents new blood vessels from growing. KS is a tumor of the lining of the blood vessels. The theory is that if we can prevent new blood vessels from being made, we can slow down the spread of KS. Thus, the interest in TNP-470 as a KS treatment.
presented by Mark Katz MD and reported by Jim Stoecker
We first discussed passive immunotherapy back in January of 1989. The theory behind this treatment is that people in early stage HIV disease produce antibodies to the virus, whereas people in late stage HIV disease lack antibodies. The hope is that by taking antibody-rich plasma from the asymptomatics, killing the viru
presented by Mark Katz MD and reported by Jim Stoecker
Tat inhibitors are part of what we have termed the new generation of antivirals. These drugs work at a point in the HIV life cycle other than the reverse transcriptase step where ddI / ddC / AZT are effective. Tat inhibitors disarm the tat gene that allows
presented by Mark Katz MD and reported by Jim Stoecker
3TC or Lamivudine is yet another antiviral that is beginning clinical trials. We do not know exactly how it works, but so far it appears to be well tolerated. The big plus for this drug is its long half-life. This means that 3TC only needs to be taken twice a day.
presented by Mark Katz MD and reported by Jim Stoecker
The vaccines that we have reported on in the past (gp120 and gp160 are examples) have worked by increasing HIV antibodies. With retroviral infections, however, antibodies do not appear to be enough to completely contain the infection. At last summer s AIDS conference in Amsterdam, Dr. Jonas Salk, world renowned develop
Finding an effective prophylaxis against symptomatic CMV infection is one of the most urgent priorities of drug research. Two approaches are now in clinical trials and both are recruiting in the LA area. ACTG 204 is based on a Burroughs-Wellcome drug related to acyclovir.
Once again, new difficulties have apparently arisen in the testing of one of the most eagerly awaited drugs, the tat inhibitor developed by the Hoffman LaRoche company. The Phase I safety and pharmacokinetics trials at Johns Hopkins University in Baltimore had to be extended and partially repeated because of an unexpec
The proposal made by a national coalition of activists (including Being Alive, as reported in the December 1992 Newsletter) about a large-scale trial of candidate therapeutic vaccines has been finally adopted by the advisors to NIH chief Dr. Bernadine Healey. Rather than allow the MicroGeneSys company to get away with
presented by Mark Katz MD and reported by Jim Stoecker
We have been talking about the CDC redefinition of AIDS for well over a year. This redefinition finally becomes effective on January 1. Basically, any HIV+ person whose CD4 count falls below 200 is considered to have AIDS, whether they have symptoms or not. Some history may help to put this redefinition in perspective.
As the total number of reported US AIDS cases approaches a quarter of a million and County cases near 20,000, the twelfth year of the epidemic gives time to reflect on the major issues and strides of 1992. 1. DEMOCRATIC ELECTION VICTORY I rank this first because the upcoming Clinton administration promises to be not ju
Judith G. Rabkin, Ph.D., MPH and George Gewirtz, M.D.
The term depression is used to describe various conditions, including transient moods, mild but persistent sadness, and clinical illness. Clinical depression is defined as a cluster of symptoms that occur together daily for a certain period of time. The main forms of depressive disorder are major depression, which is o
presented by Mark Katz MD and reported by Jim Stoecker
Shark cartilage contains a greater amount of a substance that stops the growth of blood vessels than does human cartilage. For this reason, some have suggested its use as a natural treatment for KS. Search Alliance recently did a study of ten patients and found no significant improvement among the participants. Michael
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