Subject: Being Alive '92 #3 Date: Mar 1992 (1336 lines) &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& B E I N G A L I V E -- L. A. People With HIV/AIDS Coalition Newsletter &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& People With HIV/AIDS Action Coalition Newsletter March, 1992 CONTENTS: [items are separated by "*****" for this display] Medical Update -- 24 February 1992 Survey In This Issue: We Want To Hear From You! From The Executive Director Remembering Michael Lewis Hiv And Injecting Drug Users CIGNA Opens HIV Unit Tax Help, Renter's Assistance, Working Conditions And HIV HIV In The Age Of Enlightenment ddC, Buyers' Clubs, And Hoffman-Laroche To The Editors: Hey, Wait A Minute, We're On Your Side! Awards Of Excellence Avances Medicos Enero 27 De 1992 La Guerra Contra El VIH An Ode To Me Meds ***** MEDICAL UPDATE -- 24 FEBRUARY 1992 presented by Mark Katz MD and reported by Jim Stoecker AZT: CONTROVERSY CONTINUES Last month, two studies on AZT made front page news. The first to be released was the VA Cooperative Study. This study looked at two groups over a period of 3-4 years. The first group, called the early treatment group, began to take AZT when their CD4 counts were in the 200-500 range. The other was the late treatment group and they began AZT therapy when their CD4 counts dropped below 200. The finding that made the newspapers concerned the survival rates of the two groups. Researchers compared the three year survival rates of the early and late treatment groups and found no statistical difference. Twenty-three of the 170 in the early group had died, while 20 of the 168 in the late group were dead. Researchers did note that the early treatment group was slower in progressing to AIDS than the late treatment group. Once the early group did get AIDS, however, they seemed to have a more virulent bout, a more stormy, downhill course. Hot on the heels of the VA study came a study out of Europe, sponsored, it should be noted, by Burroughs-Wellcome, the manufacturers of AZT. (There just might be more than coincidence in the timing of the study release.) This study looked at groups with CD4 counts in the 400-500 range and in the 500-750 range. Researchers found a slower progression of HIV disease in those taking AZT than those not on an antiviral. Progression was defined as either the development of AIDS-defining symptoms or a drop in CD4 count to below 350. Of the over 400 people in the study, 18% of those not on AZT progressed, while only 9% of those on AZT progressed. This study found for the first time that AZT might be beneficially used even earlier than previously thought. A similar study is now going on in the US and the American data should be released later this year. What does one conclude from these studies? Clearly, the issue of when to begin antiviral therapy is not yet a closed one. We still do not know the long term effects of AZT use. What we do know is that HIV is an ongoing infection that tends to progress over time. Why not intervene when the viral burden is lower and do our best to contain the virus at that point? On the other hand, AZT does do things to the cells other than inhibit the reverse transcriptase phase of HIV in CD4. The drug has significant toxicities and could possibly have a long term deleterious effect. Why risk these side effects for what may be limited efficacy? The final word is not in. Meanwhile, however, I support earlier, more aggressive antiviral therapy. It appears at this time that a majority of HIV+ people are helped by AZT and that the benefits outweigh the risks. AZT/DDC COMBINATION STUDY The results of the earliest major study of combination antiviral therapy, ACTG 106, have now been published in the Annals of Internal Medicine. As we have reported in the past, this study showed that daily combined doses of 300-600 mg of AZT and 1-2 mg of ddC resulted in a higher rise in T-cells and a more prolonged rise than that from daily AZT alone. No significant toxicities were reported. This study was very small; only 56 patients were included. Now a much larger study is underway. There seems little doubt that combination antiviral therapy is an idea whose time has come. HIGH RISK OF HIV INFECTION FOR FIRST-BORN TWINS We know that approximately 30% of the babies born to HIV+ mothers become infected with the virus. We do not know, however, when the baby actually becomes infected. Now, a study of twins born to HIV+ women suggests that infection may occur at the time of birth from contact with the maternal blood and membranes. This study, conducted in the US and published in Lancet, looked at some 100 sets of twins whose mothers were seropositive at the time of giving birth. All the babies were delivered vaginally. Researchers found that the rate of infection for first-born twins was over twice that for second-born. 50% of the first-born were seropositive, while only 19% of the second-born were found to be HIV+. The researchers postulate that first-born twins tend to have more time in contact with the maternal membranes at the time of delivery than the second-borns do, and that this may account for the disparity in infection rates. It may be that HIV+ women should opt for caesarean delivery in an effort to protect their baby's health. HIV DIVERSITY AND THE PROGRESSION TO AIDS As we discussed last month, a major cofactor in the progression to AIDS may be the strain of HIV that the person carries. We now recognize that there is a diversity of HIV. A person may harbor several different strains, and these may change over time. A study in Science, out of Oxford University in England, looked at a number of HIV+ people over time. The research subjects ranged from asymptomatic to people with late stage AIDS. Researchers found a steady increase in the more virulent strains of HIV as a person progressed to AIDS. This is not surprising. But what the researchers concluded is that this predominance of virulent HIV strains is the cause of progression, not the result of it. It may be that the more virulent strains arise over time and propel HIV infection. More research is needed to understand how these strains arise and how they affect the progression of HIV disease. IL-2 UPDATE For a while now, IL-2 has appeared to be our best hope for an effective immune boosting drug. Unlike antivirals, immune boosters do not directly attack HIV. Rather, these drugs build up the body's immune function and keep it able to fend off infections. To effectively fight HIV long term, we need both antivirals and immune boosters. To date, we still have no effective, FDA-approved immune boosting therapy. IL-2 has been undergoing trials at two northern California sites. At Stanford, the drug is infused intravenously. In the San Francisco study, the drug is injected under the skin. The first round of tests is now completed. Preliminary results show a consistent rise in CD4 counts for those who begin therapy with counts over 200. For those who begin with counts below 200, however, there has been no increase. Both studies now go on to a second round of trials with higher doses of IL-2 than that used in the first round. STUDY OF PASSIVE IMMUNOTHERAPY We have discussed passive immunotherapy a number of times in the past. Locally, the HemaCare study is ongoing, with no results yet available. A recent Journal of Infectious Diseases included the results of a study of passive immunotherapy conducted in Paris. This small study compared nine on the therapy to nine only on AZT. During the course of the study, two of those on passive immunotherapy came down with an opportunistic infection. In contrast, eight in the control group developed an opportunistic infection. The French researchers found, however, that when the infusions were halted, the patients seemed to get sicker more often than any in the control group. When the transfusions began again, symptoms seemed to recede. It appears that once one starts passive immunotherapy, one may need to stay on it indefinitely. CIMETIDINE: A POSSIBLE IMMUNE STIMULATOR Cimetidine (brand name Tagamet) was a very popular drug some ten years ago and was first licensed in 1977 to treat ulcers. Cimetidine is one of a class of drugs that works on the stomach directly to suppress acid secretion and is thus a good treatment for ulcers. Over the years, physicians discovered that the drug might increase immune system function. Cimetidine has been used to treat various rashes, candida and herpes simplex in non-HIV infected people. A few years ago, researchers gave cimetidine to 33 symptomatic HIV+ patients whose CD4 counts were below 300. They found that the average CD4 count of the study group had doubled after three months of daily doses of 1200 mg. They also observed various signs that the patients' immune systems were functioning better overall. In the rush of events, however, this preliminary research was not followed up. Now we need to look again at cimetidine and its potential as an immune booster. Rapid, widespread testing is needed. This is a readily available, FDA- approved drug that just might prove to be an effective immune stimulator that we so desperately need to fight HIV. FLUCONAZOLE AS PRIMARY TREATMENT FOR CRYPTOCOCCAL MENINGITIS Fluconazole was approved by the FDA a couple of years ago and has been used as maintenance therapy for cryptococcal meningitis. For the initial treatment of this opportunistic infection, physicians have used Amphotericin B, a toxic drug that many find difficult to take. Now researchers are asking whether oral fluconazole can be used as initial treatment. Can crypto be treated without the use of IV Amphotericin B? A report in a recent New England Journal of Medicine says that fluconazole may be a reasonable alternative for initial treatment in patients who are not critically ill. ***** SURVEY IN THIS ISSUE: WE WANT TO HEAR FROM YOU! Being Alive and its Newsletter have grown enormously. Our programs touch the lives of thousands in Southern California and beyond. We want your feedback so we can do it better. We need to know more about you, our readers, to help raise donations and grants, to keep going and expand. The questionnaire in the center of this issue will only take a few minutes to complete. When you're finished, fold it in half as indicated, close it with tape (no staples please), and drop it in the mail. We pay the postage. What could be simplier? And extra comments are welcome. You may or may not like to be counted in surveys. Remember, this one is designed by and for people living with HIV/AIDS, to help us help ourselves better. Please DO IT! ***** FROM THE EXECUTIVE DIRECTOR The Grand Opening on March 20 coincides with the sixth anniversary of Being Alive. This organization was founded in the spring of 1986 by a handful of PWAs. Although many institutions have grown to address the needs of PWAs, we who deal personally with HIV disease are the innovators and the sole reason for the existence of AIDS service agencies. The vision of the founders of Being Alive encompassed practical help for individuals in coping with AIDS and also a powerful call to fight this epidemic. The Grand Opening here at 3626 Sunset is a demonstration of what People with HIV/AIDS can do for ourselves. Together, we are making a difference. Please join us in inaugurating this center and in honoring all those who donated their money and their time to make this new space possible. THANKS AGAIN Last month, our list of people who helped make the Holiday Party a success omitted some of the most important people: John Babington, who secured the Santa Monica Carousel for us, and Lori Levine who, along with Colley Gibson and John Pingree, persuaded caterers to donate the food. I apologize for this omission. ***** REMEMBERING MICHAEL LEWIS by Jim Slaten Michael Lewis has died. He was warm, gentle, yet fierce, and brightened every life he touched. His death, at the age of 42, is a huge loss. Michael had energy, love, laughter, and lust lust for accomplishment, for caring, for getting things done. Mike's suffering and pain appeared only to strengthen his commitment, which became more obvious as his health declined. After watching him for many months, his insistence on getting the job done, or at least underway, his functioning, his helping people; I realized that Michael Lewis lived in a different time frame from your average person with AIDS. One day I remarked that he seemed to function on "Urgent Time." He laughed and said that long, long ago, before AIDS, he had owned a business he had named Urgent Times. It seems that congenitally Michael had a motto that he leaves me and so many others: DO IT NOW. This may sound pushy, it may irritate a few, but it works. Michael's life was a testimony to what one man can accomplish if he will just do it now. If I may indulge myself in a few memories of Michael in life: The many times at Newsletter foldings when his laughter, hearty welcome and mischievous sense of fun made the task into a party...The Candlelight Memorial this last year where Michael, determined to have it on film, as he was with all Being Alive events, stood cold and shivering, already much too thin, but smiling...The hospital visit where I quite sincerely asked, "What can I do for you, Michael?" "Wear tight levis." he smiled. The last words Michael said to me were, "I'm sorry I'm not better company, today." You were some of the best company I've ever known, Michael. I love you. I miss you. Michael Lewis was a man who cared, and loved and did a great deal to help. Can any of us do more? Michael died as we were preparing the Valentine's Day Party. He would have liked that his presence at EVERY Being Alive function and social event testified to his love of a party. Michael lingered horribly these last weeks and heard over and over, "it will be any time now." I went to see him at the hospital, hoping to share those last few moments, only to find Michael sitting erect, issuing orders and attempting to get something done. He held on for six weeks suffering and struggling. I can't help but wonder if there weren't something he really wanted to tell us, something that we really ought to do. Describing Michael in heroic, seemingly larger than life terms, in this case actually reflects life. In Michael we find a noble spirit, and nobility is something we seldom openly attribute to a friend. It seems there are things too intimate to talk about, and praise so often is left unsaid; it rather overwhelms me now that it is safe to voice. I never saw Michael angry, only VERY concerned. He didn't have enemies, at least not around Being Alive. In some circles such a statement would draw sneers of disbelief or seem insipid, but Michael only expressed love to people; no matter what the misunderstanding, again and again he would win people back. Michael loved you, and you knew it. Michael moved happily through the world these last two years with a huge lesion on his nose. Even strangers remembered and admired him, if only in passing. I fear I'm making Michael out to be some kind of saint and may discredit the truth about a friend who was truly special. Special, yes, because Michael lived on some outer edge of kindness and love. Special, but not better, because mostly what Michael's example shows is the height to which the human spirit soars. In his life we find heroism, courage, integrity, the positive hunger for good, stamina, God-given energy, and love; most amazingly, these traits are all too common these difficult days. And even in Michael Lewis's passing, have we something to celebrate? We knew him, and we're here. And oh, lest I forget. We can DO IT NOW. A native of upstate New York, Michael was an army brat who was born in Florida and lived in many military installations. At seven months, he was selected as one of the Gerber Babies. He was a graduate of the University of San Fransisco and moved to Los Angeles in 1983. Before AIDS, he was a successful restauranteur, owning Something Wonderful, Sweet Baby Jane's and the Toy Tiger. After his diagnosis in 1988,he became a Being Alive office volunteer, and later was Secretary of the Board of Directors, Chairman of the Advocacy Committee, and Liaison to the Board for Volunteers. A major interest of Michael's was being archivist to the gay and AIDS communities and much of his time was devoted to filming events as they occurred and compiling photographic histories. The Memorial Book which contains the names of those who have died,to whom each Being Alive Board Meeting is dedicated, was instituted and kept by Michael. He participated of two marches on Washington, DC, demonstrating for compassionate release of drugs for PWAs. He is survived by his parents, five brothers and his Companion for Life, Adam Castillo, MD, medical counselor to Being Alive, and his lifelong friend Buck Taylor There will be a memorial service for Michael on Saturday, 14 March at 2 pm at the Being Alive Sunset Blvd. office. ***** HIV AND INJECTING DRUG USERS (Nancy MacNeil compiled the original version of this report for ACT UP/LA's Treatment and Data Committee. She was reporting on information, presented at ACTG meetings, about IDUs in AIDS clinical drug trials.) DIFFERENT CLINICAL PICTURE The clinical picture of HIV in drug using populations is significantly different from HIV in other populations.For example, there are almost no cases of Kaposi's Sarcoma in male IDUs who are also HIV+, but there is a five-fold risk of bacterial infection morbidity in HIV+ drug users vs. HIV+ non- drug users. IDUs are dying of bacterial pneumonia as a result of HIV infection, and yet do not meet the criteria for the CDC's definition of AIDS. An epidemiology data base was established to look at this population and its particular manifestations of HIV. Many of the diseases found to be most common are not included in the CDC's AIDS definition: bacterial infections, pulmonary tuberculosis, sexually transmitted diseases, malignancies other than KS and lymphomas, HTLV I and II, and hepatitis. Clinicians and technicians must look beyond this limiting definition at the whole spectrum of diseases which drug users with HIV infection get. When IDUs develop pneumonia, it is more often bacterial pneumonia or TB-related, not PCP. (Bacterial pneumonia cannot be treated with bactrim or pentamidine.) Certain malignancies, not considered AIDS-defining but definitely life-threatening, are occurring, mostly in male IDUs. These include lung cancer and cancers of the GI tract. In HIV+ women, cervical diseases and superimposed HPV infection are important clinical phenomena that must not be underestimated, whether the woman is a drug user or not. The diseases that women are presenting are likewise not encompassed by the CDC definition of AIDS. CO-INFECTION IN HIV Co-infection in HIV+ people may confuse the outcome of some clinical trials. Although hepatitis, delta-hepatitis (which can accompany hepatitis-B) and hepatitis-C show serologic abnormalities in the presence of HIV, they do not become clinically more active or more severe in people with HIV infection. However, HIV+ drug users are more likely to carry the hepatitis infection longer and thus remain infectious for a longer period of time. 40% OF METHADONE POPULATION HIV POSITIVE There is a 40% HIV seroprevalence in the entire methadone- taking population. In a study of HIV+ asymptomatics in this group, it was found that a large proportion presented initially with clinical diseases such as bacterial pneumonia, endocarditis/sepsis, herpes zoster, and pulmonary TB. Of these, only herpes zoster is typically viewed as an early physical manifestation of immune decline. The study also showed that using CD4 counts is probably not the best way to determine whether or not these diseases will occur in this population. Another surrogate marker of HIV progression, beta-2 microglobulin levels in the blood, is also not useful in HIV+ drug users, because beta-2 levels are high in all drug users. CLINICAL TRIALS Many study participants use primary care services for medical complications caused by a mixture of substance abuse and HIV infection itself. Therefore, the ability to provide an array of social services, along with comprehensive medical care, including pediatric care, is a crucial, inseparable component in successful recruitment and retention of patients in clinical trials. This is a population that has been disenfranchised and marginalized, and is without access to health care of any kind. HIV comes with overall neglected health in these individuals. The single most crucial element in clinical trials is the inclusion of primary care services on site one-stop health care. Providing social services, as well as transportation back and forth for study visits, and a warm and non-judgmental research team are also key. There has also been a suggestion that incentive payments to participants be incorporated into the study protocol. If researchers want to enroll IDUs in trials, they must first accept their life style, which for most IDUs is not abstinence. Whether individuals are using drugs intravenously or not, they can still participate in clinical trials. To get vital information on AIDS therapy in this population, as well as to ensure some equity of access to care, exclusion criteria should be carefully constructed so as not to rule out people on the basis of "active use" or any other aspect of life style. UNDERSTANDING ADDICTION Tolerance and dependence are two specific characteristics of drug addiction. Addiction occurs when a substance is required to maintain basic functioning. The compulsive, habitual, repeated use of a substance is continued in spite of harmful consequences, which the person involved recognizes fully. In other words, addicts know they're doing something which is self-destructive. Researchers must realize that addiction is something that the addicted individual cannot simply stop. The drug users' awareness of doing something destructive, and their perception of their ability to stop, are clearly clouded by denial and avoidance. The notion of repetitive, continued self destructive behavior, even in the face of adverse consequences, is important to the understanding of the phenomenon of addiction. Drug addiction itself, and the pathophysiology of how drugs affect the central nervous system, drive people to do unsafe things, such as use contaminated needles. There is vast documentation of people able, in a sense, to stand outside their addiction and tell you that they have destroyed their families and their lives, and yet they can't stop. It is not a simple question of morality or failure or lack of character. Drug addiction and abuse should be viewed as clinical phenomena. DRUG WITHDRAWAL Drug withdrawal in itself creates symptomatic nervous disorders, and a person's functioning is normalized when the drug is re-introduced. So it is not surprising that most addicts return to using drugs, even after significant periods of abstinence. However, there are individuals who are able to overcome addiction and take charge of their lives, and certainly those people deserve respect. To overcome addiction and to share experiences with others is an enormous and heroic endeavor. The notion of "Just Say `NO'" is naive and over-simplified. Twelve step programs, detox, residential programs, and sometimes methadone, are effective for addicts who want to get better. But first, the pain of continuing to do what they're doing has to be greater than the pain of giving it up. URINE TOXICOLOGY Observation of the arms for tracks, awareness of attitude problems, financial difficulties and perhaps frequent unexplained accidents are indications of substance abuse. Urine toxicology testing, though not standard practice, is used to determine if someone is a substance abuser, and perhaps it should be as routine as CT scans and other emergency room tests.Increasingly, researchers are faced with the compounding factor of cocaine or crack use. They are finding these drugs in their study participants through urine toxicology tests in both "on methadone" and "not on methadone" patients, and are interested in the interaction of AZT with methadone, of crack with AZT, and crack and methadone with AZT. Obviously, doctors can't prescribe or administer crack, and they don't routinely screen for cocaine because laws require that doctors report findings of illicit drug use to the Health Department. Screening urine to confirm drug use would be helpful in trial studies, and most researchers and clinicians admit that they have no intention of reporting cocaine or crack in the urine of study participants. OVERLAPPING SYMPTOMS Many of the medical problems that care providers see in drug users are due to the substances themselves, and some are due to HIV infection. There definitely is an overlapping of symptoms; the clinical manifestations of HIV infection can be combined with, masked by, or mimicked by the effects of drugs and alcohol. Certainly fever, infection and diarrhea are quite common in drug users. The bacterial infections they get are more severe when HIV is present. Constitutional symptoms of HIV such as weight loss, diarrhea, and fever may be caused either by drug use or withdrawal. Often so-called behavioral problems are misdiagnosed disorders associated with brain lesions or central and peripheral nervous system toxicities. (Often addicts will be labeled A. S. P. anti-social personality). It is absolutely imperative that clinicians look beyond stereotypes and prejudices that some people have, when treating drug addicts and recognize co- existent, parallel pathophysiology that may be occurring. DRUG INTERACTION In a study, scientists suggest starting drug users on 60mg to 65mg of methadone and steadily increasing the dose every one or two weeks, to a stabilized opiate dosage (which usually takes six weeks with an average dose of 90mg of methadone, and a maximum dose of 120mg). Medications and methadone exhibit interesting drug interaction. When prescribing rifampin (used to treat TB), one must double the dose of methadone within two or three days because there is an increase in the metabolism of methadone (due to the induction of certain enzymes) which can cause serious, immediate opiate withdrawal. Rifampin not only increases the metabolism of methadone, it also decreases the half life, so it is important to not only double the dose of methadone, but also to divide it. One should give two-thirds dose in the morning and one-third at night, because a person may experience the symptoms of withdrawal before the end of the usual 24 hour period. Another very important thing to be aware of when using rifampin is that drug users are very aware of the effects that drugs and medications have on their bodies, and when they realize that rifampin is causing withdrawal, they stop taking it. Prescribing rifampin alone is a set-up for drug resistant TB. Furthermore, the use of dilantin or phenobarbital with AZT can cause opiate withdrawal but at a slower rate. With dilantin, then, methadone dosages should be increased but not necessarily doubled. Studies of AZT/methadone interaction have had mixed, if not conflicting, results. A higher level of AZT has been detected in patients on methadone receiving the same dose of AZT as patients not on methadone. AZT does not absorb methadone or cause opiate withdrawal, though the side effects of AZT mimic opiate withdrawal symptoms. Increasing methadone dosages does not make the side effects of AZT less severe. Also there does not appear to be any increased toxicity with comparable doses of AZT in drug users taking methadone or another opiate compared to those who are not. Although people on methadone tend to retain more AZT in their systems, researchers do not attribute this phenomenon to pharmacokinetic interactions of the two drugs. Some researchers think that there is absolutely no interaction between AZT and methadone, that the two medications work independently, without interfering with one another. PAIN MEDICATIONS When prescribing pain medications, one must keep in mind that a narcotics addict having pain needs more narcotic, not less. Dosages that may be considered dangerous for other people, may be required for IDUs, because of their astounding capacity and tolerance for narcotics. Methadone has absolutely no analgesic effect. It does not kill pain. For example, one should continue the same methadone dose but give higher, more frequent dosages of Demerol. There is a valid fear among HIV+ drug users that when they are in pain, they will not be medicated. Many in the medical community are of the opinion that if a patient is already on an opiate, they do not need pain medication; but nothing is further from the truth. When a person is on methadone maintenance, more methadone will not kill their pain. It is best to administer pain medication around the clock when a person is in the hospital. (When taking a patient off of medication, taper off gradually, not abruptly.) Often a struggle ensues between patient and care provider if the patient has to ask for pain-relieving medications. A street practice of buying and selling antibiotics, that existed even before the AIDS pandemic, is relevant to clinical trials. In our culture there is a lot of self-medication, with illicit drugs as well as prescription drugs such as antibiotics. A drug addict can get any drug on the street, including penicillin, ampicillin, etc. (In some locations AZT is referred to as "Horse Pills" on the streets because of the Burroughs Wellcome unicorn logo.) So when clinicians ask if patients are taking "any other drugs," they should ask specifically about antibiotics and the use of AIDS-related therapies as well as marijuana or LSD and other so-called recreational drugs. In summary: If you give dope fiends their juice, they will participate in clinical trials and if you pay them $20 they will return for their appointments. If researchers get over being judgmental, they might learn something from drug users. And totally disregard the CDC's definition of AIDS when treating OI's in this population. ***** CIGNA OPENS HIV UNIT by Jacques Chambers, CLU CIGNA Healthplans Inc., one of southern California's largest health maintenance organizations, has opened an HIV Unit in its facility at 1711 W. Temple St. in Echo Park. Dr. Patricia Samuels, an Infectious Disease Specialist, joins CIGNA after six years in private practice, to head up the unit. She is initially assisted by Michael Menchaca, Nurse Practitioner, and Gayle Love, Licensed Clinical Social Worker, and there are plans to enlarge the Unit as demand grows. In addition to seeing patients, the Unit will consult with primary care physicians who will continue to see CIGNA members with HIV, especially those who are asymptomatic. Dr. Samuels stresses, however, that the HIV Unit is available to HIV+ members of CIGNA who wish to be seen there. Initially, member should obtain a referral to the HIV Unit from their primary pare physicians. Dr. Samuels indicates that such referrals are very easy to obtain and says that the HIV Unit will assist any member who has difficulty getting one. CIGNA coverage is offered through many of the area's large employers including the Los Angeles Unified School District and the City of Los Angeles. CIGNA also offers coverage to persons on Medical who do not have a Share of Cost. Anyone who has questions should contact CIGNA Members Services or APLA's Insurance Unit at 213.962.1600 ext. 156. (Jacques Chambers is Program Manager of APLA's Insurance Unit and is available without charge to assist with HIV related insurance questions.) ***** TAX HELP, RENTER'S ASSISTANCE, WORKING CONDITIONS and HIV by Fran Mc Donald, Social Services Editor The Assistance League of Southern California has sent word that free preparation of 1991 income taxes will be available for low income seniors and the disabled by the Hollywood Senior Multipurpose Center. This service is by appointment only; call 213.957.3900. Take with you to your appointment copies of your 1990 tax return, the 1991 forms, and booklets you have received, W2, W2P and 1099 forms, yellow Social Security forms showing total 1991 income or SSI statement showing total income. RENTER'S ASSISTANCE Renter's assistance for 1991 was extended and you can still claim it by calling 800.852.5711 and requesting Form 900R. Remember, this is different from renter's credit. The form for Renter's Assistance 1992 will be available in May, but in the meantime request 1991, if you haven't already. HIV AND OFFICE POLLUTION Many of you who are HIV+ know that it is important that your surroundings be as free as possible from elements that might compromise your health. If you are working in an office, it is especially important that you be alert to the environmental dangers found in many offices. Elle magazine last September had an excellent article on this subject, citing many aspects of the "sick office syndrome." For example, inadequate or no ventilation, absence of fresh air from outside, toxic materials used in construction, toxins given off by office equipment such as photocopiers and mimeograph machines, even typewriter correction fluids are among the problems. Be firm, stand your ground and see that any problems are satisfactorily resolved -- not always easy, but worth the fight. An example of the problem and a model for office workers to follow is the case of the Los Angeles County IHSS office in Hollywood, where all but a few employees signed a petition requesting that the photocopy machine be moved to a location away from employees so as to minimize any harmful effects from the machines chemical exhaust. In this case, management refused. The employees pursued the matter through the County's own Health and Safety Department and won their point. Office management STILL refused to comply with a direct order to move the machine. The employees are now seeking redress and punitive action through appropriate state and federal agencies. Also in management's refusal to comply, it has left the door open to possible civil suits for damages from employees who can claim adverse physical reaction to the pollutants given off by the photocopy machine. Want the Elle article or have questions about procedures and which agencies to contact? Just call me. READ YOUR POLICY My thanks to Rob Habekost, co-chair of the Home Health Care Caucus of the LA County AIDS Regional Board, who asked me to attend the Caucus's initial meeting. I'm looking forward to the next one! One of the points raised at the meeting was how often patients seem to have no idea what their insurance covers and fail to keep track of which benefits have been used and to what extent. I know that I often find myself telling people that the answers to their questions lie in their policies, so please be sure to read your policies and if you need help in understanding them, there are experts happy to help (for example Jacques Chambers at APLA). Also, routinely tally the service you use. Don't run the risk of receiving a bill you're expected to pay in full because you have inadvertently exhausted the total alowed for a particular service in your policy. So, for your own sake, also for those nice people at the Caucus, please read and know your policy. LEGAL RESOURCES The AIDS Coordination Committee of Washington, DC, an adjunct of the American Bar Association, has prepared a "Directory of Legal Resources for People With AIDS and HIV" that offers information on which organizations in a given area offer legal assistance via direct referral to an attorney or to a pro bono panel (pro bono that is, forgoing the customary fee). As Barry Sullivan, the committee's chair says in his forward, the purpose of the directory is to "advance the fight against HIV and AIDS by putting together those who need help with those who are willing to help." The directory has legal referrals for most states. If you would like the name and address of the organization nearest you, please call or write me. If you wish to contact the AIDS Coordination Committee, it is at 1800 M Street NW, Washington, DC 20036, phone 202.331.2248. CHILDREN AND AIDS A couple years ago, I mentioned a brochure by SIECUS entitled "How To Talk To Kids About AIDS" and I was gratified by the response. The brochure has been revised and I still feel that everyone should read it. If you don't have children, read it yourself and then give it to your friends and relatives who do have children. If as a result of your effort, even one child knows how to protect him- or herself from AIDS, you'll have ample reason to be one proud human being. For a copy, please call me. GOOD ADVICE Two friends of this column called to pass on good advice about two items that recently appeared here. First, when travelling with plans to have blood work done, be sure to take a prescription or a note on your doctor's letterhead to that effect. Apparently, some labs are reluctant to do blood work at the request of a non-health care professional. Second, if you have a living will and durable power of attorney for health care, be sure these are always readily available and known by any nurse or attendant (and their employers) in your home so that your directions can be honored. Consider this matter carefully, especially with the possibility at some time of, say, 911 being called. (Fran McDonald has been in Social Services for 21 years and welcomes your calls at 213.664.4772.) ***** HIV IN THE AGE OF ENLIGHTENMENT by Lori Levine Living with HIV has become easier in the last few years due to advances in technology, yet it remains the same in the most important way. HIV has almost become the "hip" disease of the decade. Even the rich (Aileen Getty) and famous (Magic Johnson) are getting "it" and are not afraid to tell the world. More mothers are beginning to accept their gay sons and their sons' lovers. But I don't find anything hip in a situation where young people are being robbed of their lives, in their prime...and we are still dying. Way back when I found out my serostatus, Ryan White was being chased out of his home town, the Glasers were suffering in silence, and AIDS was a taboo subject among heterosexuals. "It was only a gay disease." People couldn't confide in their own families and friends about having this virus, let alone neighbors and co-workers, (especially if they were "healthy carriers," as we were called back then). It was the "dark secret" we carried around -- I always compared it to being like Lestat's vampire! Today, my employers not only know, but a condition of my accepting employment was that I use my own discretion about when I couldn't work, or needed time off for appointments. Dentists and GYNs aren't turning us away anymore and there are so many "HIV Specialists" in everything: Neurology, Psychology, Dermatology, Pharmacology, Gastroenterology, Gynecology. There are HIV Homeopaths, Osteopaths, Holistic Doctors, Oriental Medicine Doctors, and HIV Herbalists, Chiropractors, Spiritualists...There are herbs, vitamins, adjustments, acupuncture, massage, yoga, meditations, medications, teas, crystals, enemas, alternative treatments, and remedies for every HIV symptom imaginable. There are extremely busy Psychics who are booked months in advance to contact and communicate with the souls of our dearly departed. Business has increased for them in the last 10 years and their clientele is far younger than before...and we are still dying. Years ago, the religious leaders shunned HIV+ people. We were made to feel we had sinned and we were getting what we deserved. We were turned away from our churches and synagogues, and other houses of worship. Today, an HIV+ individual can find spiritual and/or religious guidance and congregations for almost any religion that exists, and even some that don't! There are even combination religions for HIV+ people. There are Jewish Ministers (like Marianne Williamson) and Gay and Lesbian Priests and Rabbis who offer guidance and companionship, shelter, food and transportation...and we are still dying. There are even dating services to help us meet others in the same situation so that we too can experience the joys and rewards of companionship. We aren't lepers anymore! There are so many more AIDS service organizations, and so many grants to support them (but all competing for the same funds). They provide permanent housing and temporary shelter, and food and insurance specialists, free legal advice, encounter groups, support groups, seminars, medical updates, and counseling, and small emergency donations of money and clothing, and social events, and advocacy...and we are still dying. Years ago, the hospital facilities for AIDS patients were minimal and dismal at best. Today, they are like hotels. There are retreats where you can spend a week boosting your immune system to prolong your life, and when that doesn't work, you can attend seminars to help guide you into the transition from this world (otherwise known as death). Public awareness and acceptance of HIV+ people has changed dramatically. Today, if you are in a hospice, you may even expect a visit from Princess Di. Or if you are a baby, Barbara Bush may even pick you up (if George is hot on the campaign trail). After Rock Hudson's death, his very famous and socially acceptable friend, Elizabeth Taylor, helped to increase public awareness of the disease, by vowing to make a difference -- taking many of her celebrity friends with her on the road to fund raising. She helped make having this virus acceptable -- and for this we thank her. There isn't a celebrity in town who won't attend a fund raiser and pitch in to help "those less fortunate than themselves"...and we are still dying. President Bush has agreed to allocate more funds for research -- hallelujah! What took him so long? I guess he hasn't been personally affected by this plague. He hasn't lost any loved ones yet. I wonder why -- I've lost too many! Opportunistic infections are becoming more treatable, but treatments have become too expensive, especially for a person who is living on SSI or SDI. Let's face it -- it is called an opportunistic infection because the body has been so debilitated that it gives the infection the opportunity to take advantage. Most of the previously fatal OI's can now be treated so that we can live longer, only to be weakened by newer and stronger OI's...and we are still dying. All we can really do is hang in there and wait for the miracle cure to come along and, in the meantime, help ourselves and help each other get through this. This article is dedicated to five friends who died within the last two months: Russell Goodman, David Roller, Paul Holt, Tina Chow and Mike Lewis. I, and many others, will miss you all. ***** DDC, BUYERS' CLUBS, AND HOFFMAN-LAROCHE Many readers are curious about the "real story" behind press reports of FDA investigation of underground ddC sold through buyers' clubs. Investigators reportedly found considerable variation in the amount of ddC in each capsule in recent batches. The network which arranged for the manufacture and distribution of the unofficial ddC acknowledged the variation, recalled the involved batches, and explained how it happened. The clubs suspended sale of ddC, at least temporarily. John James just published in AIDS Treatment News, a thorough review of the episode and the issues it raises. Rather than repeat the story, we highly recommend James's report and a companion background article on ddC to interested readers: "ddC: Buyers' Clubs Discontinue Sales After Potency Variations Found," and "ddC Background," ATN issue No. 145, 21 February 1992. (Write ATN at P. O. Box 411256, San Francisco, CA 94141 or call the Being Alive office for a copy.) Everyone involved believes that the best solution to the problems raised is for ddC to be rapidly approved by the FDA or, second best, that a comprehensive expanded access program be put in place by the manufacturer. Hoffman-LaRoche just announced that two new expanded access programs would provide ddC for combination use, in these words: "In order to make HIVID [ddC] available in the most efficient way possible, a simplified open-label program will be implemented within the next two weeks. Rapid enrollment will be enhanced through the use of streamlined entry criteria and limited data collection. Symptomatic HIV infected individuals with CD4 counts [T-helper cell counts] of 300 or less or asymptomatic individuals with CD4 cell counts of 200 or less who cannot participate in controlled clinical trials will be eligible to receive HIVID for combination use.... Physicians should call the ddC Coordinating Center at 800.332.2144 between 9 am and 8 pm (EST) for enrollment information. Like all Roche investigational drug programs, HIVID will be provided free... "In the second program, to be designed with input from the AIDS community and the government, Roche will provide HIVID for combination therapy in healthier HIV infected individuals those with CD4 cell counts up to 500. This will be the first time that a so-called Large Simple Trial will be implemented in the study of an experimental AIDS drug. Roche will work with several community research consortia to initiate a trial that could potentially involve thousands of patients." ***** TO THE EDITORS: HEY, WAIT A MINUTE, WE'RE ON YOUR SIDE! I'd like to comment on the lead "News Bits" article in the January issue. It chided the MACS for waiting so long to study long-term survivors. It gives the impression that we are neglectful, or reluctant, or have to be pressured into doing something we should have done long ago! However, it is not possible to study long-term survivors until you have some long-term survivors to study! To participate in the MACS, the major criterion was that the person was without an AIDS diagnosis. This criterion probably selected out some of the people who developed AIDS most rapidly. Therefore, the seropositive group that joined the study might have been biased toward long-term survivors. Also, not knowing the approximate time of infection, we can not determine the length of time someone in this group had been infected. We have stated many times in the last seven years that a major question we could answer is "Why do some HIV positive people get sick and others stay well?" The most appropriate group to study is made up of people who came into the study HIV negative and subsequently became positive. The approximate date of seroconversion is established and the full course of infection can be documented. Of course, enough time has to elapse before one can be considered a "long- term survivor." Two hundred MACS participants seroconverted before 1986; so, you are right, it is almost about time to study those whose immune systems have withstood the ravages of infection. Please be kinder and gentler to us. There isn't one person attached to the LA Men's Study who considers that what they do in only a job. The study staff is dedicated to collecting, analyzing, and disseminating the information that is so badly needed. We need your understanding and moral support. Jan Dudley, Project Director LAMS ***** AWARDS OF EXCELLENCE by Jim Slaten The Being Alive Board of Directors used the festive occasion of the Valentine's Day party to present awards of excellence to three dedicated volunteers. The three recipents of this very special award were Emily de Rham, James Foster, and John Johnson. EMILY DE RHAM Since Emily is soon to leave Being Alive to live on Martha's Vineyard, this award was very timely. For the past three years, Emily has been an integral part of the Newsletter committee and has ensured the continued high level of excellence of the Newsletter, following the example set by its founding editor, Fred Clark. This work involves Emily two to three weekends a month and countless hours in preparation. Her own personal perfectionism is exhibited monthly between the covers of the Being Alive Newsletter. JAMES FOSTER James is a extraordinary volunteer who has put in three afternoons a week for the past eighteen months, thus providing invaluable continuity and organization to the office. Most of our present volunteers have been trained by him, and all have learned from his patience, kindness, and sense of humor. In particular, James's skills as a peer counselor have helped many people dealing with HIV through their most difficult moments, while his boundless sense of fun has saved many co-workers from office tedium. JOHN JOHNSON John is among the longest survivors and most senior volunteers at Being Alive. He has served in numerous capacities, as board member, Newsletter staff member, Newsletter circulation manager, and chairman of many committees. John fulfills a function at Being Alive that is perhaps not always welcome, that of being Devil's Advocate and Doubting Thomas. John has chosen the role of keeping the organization honest through direct confrontation and criticism. He functions as the conscience of Being Alive, sticking to his unique vision with enormous integrity. It is with love and appreciation that the Board of Directors acknowledges these outstanding volunteers for their continuing contributions to Being Alive. Together, we are making a difference. ***** AVANCES MEDICOS ENERO 27 DE 1992 por Mark Katz, MD y traducido por Jorge Correa DIVERSIDAD DEL VIH Cinco anos atras asumimos que todo seropositivo tenia el mismo virus, la misma infeccion. Hemos venido a reconocer en los ultimos anos de que hay diferentes subtipos y linajes de VIH. Hasta ahora se han identificado cinco subtipos con sus correspondientes linajes. Todo seropositivo tiene varios de estos linajes. No sabemos exactamente el numero en cada persona, pero van desde un punado hasta varias docenas. Si hoy observamos los linajes en una persona y un ano mas tarde los observamos de nuevo, notaremos que habra habido una mutacion muy significante. Cada persona alberga linajes diferentes y estos pueden cambiar con el paso del tiempo. Esta variacion puede ser otro cofactor importante en la progesion de la infeccion del VIH a SIDA. La diferencia entre los linajes podria explicar el hecho de que algunas personas permanezcan con un numero estable de celulas T por muchos anos y otras personas parecen tener una progresion mas rapida. En el transcurso del proximo ano podriamos ver respuestas a preguntas tales como: Cuales son los linajes mas virulentos ? Es posible crear una prueba de laboratorio para determinar el tipo de linaje en personas seropositivas? Seria beneficioso para el individuo y sus medicos saber cuantos linajes diferentes tiene? Seria beneficioso saber que tan grande es la variacion que hay en una persona de mes a mes o de ano a ano? MAS SOBRE LA NEUROPATIA ASOCIADA CON EL DDI Y COMO EVITARLA. El DIARIO DEL SIDA de el mes de enero presento un articulo examinando en detalle las experiencias de 10 (de un total de 44) participantes en la primera fase de la prueba original de DDI, quienes desarrollaron neuropatia periferal. Como ustedes saben DDI fue aprobado por la FDA en octubre de 1992 como el segundo agente retroviral. Su aprobacion fue sorprendente dado que el 44% de aquellos que tomaron DDI en varios de los estudios desarrollaron neuropatia periferal percibida como un estremecimiento doloroso o sensacion de estar siendo incado con agujas. Usualmente ocurre primero en los pies en personas que han estado tomando DDI cierto periodo de tiempo. Si se suspende el medicamento la neuropatia desaparece. Sabemos que DDC puede tambien causar neuropatia pero con mucha menos frecuencia, probablemente en menor porcentaje. El VIH por si solo, sin terapia antiviral, puede causar neuropatia con las mismas manifestaciones. Nosotros como clinicos y ustedes como pacientes tenemos algunas veces, cierta incertidumbre debido a la aparicion de la neuropateia. Suspendemos la medicina? Aumentamos la dosis de AZT para deshacernos de ella? Los autores del estudio observaron las de este estudio observaron las similitudes entre las personas que recibian DDI y que tenian neuropatia. Observaron que el comienzo de los sintomas es gradual hasta que empeora dramaticamente en un periodo de 1 o 2 semanas. Cada persona describio una sensacion de dolor especialmente en las plantas de los pies. En el 70% de ellos el dolor era mas intenso cuando caminaban y tambien durante las noches. Solamente un pequeno numero manifesto mejora al recibir tratamiento con analgesicos como Ibuprofren o un antideprimente como Elavil (aveces efectivo para combatir el dolor). Desafortunadamente el 25% de la gente que desarrollo neuropatia empeoro despues de suspender DDI pero eventualmente la mayoria mejoro. El 20% aun tenian sintomas despues de 2 a 6 meses. Lo mas importante del estudio es que no hubo neuropatia periferal en pacientes que recibian dosis de menos de 10 miligramos por kilogramo de su peso. Esto es de 500 a 700 miligramos al dia en personas que pesan entre 110 y 160 libras. Cuando DDI se encontraba disponible atravez de Bristol Myers en un amplio estudio los limites eran de 375 miligramos dos veces al dia o 750 miligramos diarios. Desde que la FDA aprobo el DDI, la dosis ha sido reformulada con un aditivo especial. La nueva dosis es de 300 miligramos por dia. Esperamos que con esta pequena dosis, en los promedios de peso ya antes mencionados, encontremos mucho menos este doloroso efecto secundario que DDI provoca. No he visto datos substanciales sobre la frecuencia de neuropatia con DDC, pero los estudios realizados hasta ahora implican una muy baja incidencia. IMPORTANTE ANUNCIO SOBRE EL DDC En los primeros dias de enero la compania Hoffman-LaRoche anuncio que detendria un estudio de laboratorio que comparaba DDC versus AZT por si solos. La aprobacion del DDC, por la FDA, se espera en el transcurso del ano. Ha estado disponible localmente por medio de los "Buyers Clubs", y mucha gente lo ha estado usando como terapia de combinacion. DDC ha estado disponible tambien en un amplio programa de acceso dirigido por la compania, para aquellos que no toleran AZT o DDI o para aquellos que no se beneficiaron de ninguna de las drogas. Uno de estos protocolos, ACTG 114, ha registrado personas que no han hecho uso previo de AZT u otra terapia antiretroviral, quienes tienen un conteo de celulas T menores de 200 y estan clasificados con SIDA o en una avanzada etapa de ARC. Comparando DDC (solo) con AZT (solo). La mitad de la gente fue escogida al azar para AZT ,al igual que la otra mitad para DDC. El consejo monitor del estudio observo los resultados despues de un ano de terapia y observaron que habian habido 59 muertes de entre las 320 personas que se encontraban tomando DDC comparado con 33 muertes de entre 315 que se encontraban en AZT. Esta diferencia fue estadisticamente importante, por lo que se hizo eticamente imposible continuar con el estudio, de alli que surgiera el ofrecimiento a las personas que se encontraban en DDC de cambiar a AZT. Creo que muchos de nosotros creia hasta hace unos pocos meses que DDC tenia un perfil menos toxico y que ademas podria ser superior a la eficacia de AZT o DDI. Este estudio, si es confirmado por mas estudios en diferentes poblaciones, nos diria que DDC solo no trabaja tan bien como el AZT. ***** LA GUERRA CONTRA EL VIH por Carlos Morales-Angeles, LCSW Saludos a todos esperando estemos todos bien, mejor o recuperados conforme de al caso. El grupo de apoyo en espanol de Being Alive continua reuniendose los dias martes a las 6p.m. Nos gustaria seguir creciendo. Vengan a dar y recibir qpoyo! El dia 10 de Marzo sera la segunda conferencia co-auspiciada por Being Alive y Bienestar para la comunidad Hispana de Los Angeles. Personal de Los Angeles-USC County Medical Center presentaran informacion sobre estudios clinicos que se estan realizando actualmente. El personal de Bienestar se encargo de hacer los arreglos con Los Angeles-USC Medical Center. La conferencia se realizara en los salones de Being Alive, 3626 Sunset Blvd. el 10 de Marzo a las 6:30 p. m. Los esperamos! Estoy seguro que ya todos saben de la importancia de mantener comunicacion continua con nuestros medicos especialmente si se va a empezar algun tratamiento experimental no aprobado por la Administracion de Drogas y Alimentos. Me parece que debemos tambien tomar en cuenta y escuchar los consejos de quienes juran que tratamientos alternativos son beneficiosos. La nutricion, el reposo, medicinas tradicionales todas muy importantes. Algo que todavia no ha sido suficientemente remarcado es el hecho de que la risa y los ejercicios aerobicos son de gran beneficio para las personas que estan delicadas de salud. La Risa Remedio Infalible, ese espacio de Selecciones que a muchos de nosotros nos hace pasar un buen rato debe pues ahora ser lectura obligatoria. Comedias, videos de comicos de vuestro gusto incrementaran sus T4. Los ejercicios aerobicos no tienen que ser de alto impacto, pueden inclusive hacerse sentados en una silla o de bajo impacto. El objetivo es de incrementar el volumen de oxigeno que circula en nuestro cuerpo y tambien de reforzar y ejercitar nuestra circulacion y el corazon. Han habido varios articulos sobre este topico en revistas medicas, se ha estudiado y comprobado. Ha hacer ejercicios!!!!! Tambien recuerden que acupuntura, yoga, meditacion, relajamiento son todas alternativas saludables para toda clase de enfermedades no solamente para la seropositividad. Un saludo fraterno a todos los hermanos y hermanas en todo el mundo que estan luchando para combatir esta pandemia. Un saludo muy especial a mi gente de Lima, Madrid, Granada, Barcelona, Wuppertal, Dusseldorf con el agradecimiento genuino de uno que admira y agradece todo lo que estan haciendo. ***** AN ODE TO ME MEDS by Larry Long Roses may be red, But Zovirax is blue. Herpes is no fun, So always take two. Life can be lovely, Even divine. So long as I remember My Prozac at nine! Valium is nice, But Vicodin is quicker. Take it with food Or it'll make you much sicker. AZT is so pretty and tiny, And looks so benign, But the price will bankrupt you In hardly no time. Uppers and downers, And in-betweeners galore. But each doctor's visit, I get a few more. ddI in packages so tidy, Makes a liquid you pour, But be careful of dosage Or your feet will get sore. Bactrim contains sulfa And ain't much fun, Remember to stay Out of bright sun. Boxes that buzz, and play little tunes To help us keep our pace. They've even got one, I hear That plays "Amazing Grace." Diarrhea is painful, It tries the soul. So don't stray too far From a room with a bowl. Pills abound To keep you regular, Don't even matter If you're professional or secular. Zantac and Xanax, I get so confused. Was one for the stomach? Which did I use? Did I take the yellow, Or was it the green? Will it make me happy Or a little mean? Dalmane, oh, so gentle Sends me off to deep sleep, If I don't wake in the morning, Dear Lord, my soul, please keep. And let's not forget the vitamins, From "A" to Zinc. Lined up like little soldiers Beside the kitchen sink. All shapes and all sizes, The big and the small, How will I feel, After taking them all? There are gels and caplets, And names and initials. I begin to wonder, "Is all this beneficial?" One thing I can tell you, As I stand in awe. However does my stomach Know where to send it all? &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& End of display