gilbert@tce.com (Gilbert Cornilliet) (02/19/91)
============================================================================== CHANGING IDEAS ON PCP PROPHYLAXIS by Mark Katz, MD as reported by Jim Stoecker One of the few unarguable facts of the AIDS epidemic is that prophylaxis against PCP prolongs life for those infected with HIV. All agree that early, aggressive, well thought out intervention can buy an individual precious time. The open question is what prophylactic regimen is best. Since 1987, aerosolized pentamidine (AP) has been the approach of choice. Now it appears that Bactrim/Septra may be the best way to go. AP appealed to many because it offered a novel way of getting the drug into the lung where we most wanted to prevent PCP. Further, a new drug such as pentamidine was preferred to a standard antibiotic. Community activism that sought to make AP available for all, focused attention on this particular prophylactic approach. Lastly, one cannot discount the profit motive. One drug company holds the patent on pentamidine and its method of administration adds a whole level of overhead where profit can be made. Two major studies looked at aerosolized pentamidine as PCP prophylaxis. A San Francisco study, published in Lancet, followed 102 HIV symptomatics for six months. Eleven of the study group (10.8%) got "breakthrough" PCP during this time. A 1988 study of AP administered at the current standard of 300 mg/month reported a 13% breakthrough rate after one year. In contrast, early studies of Bactrim showed no breakthrough PCP at all. A 1987 New England Journal of Medicine study followed 166 leukemic children who were at high risk for PCP. After one year on Bactrim, no PCP was reported. In 1988, Margaret Fischl published a study of sixty men with KS. The thirty who received Bactrim had no PCP cases, whereas the placebo group reported sixteen cases during the same period. It is a fact that Bactrim produces more side effects than AP. Fischl reported fifty-seven different side effects, though only four of these were sufficiently severe to force withdrawal from the drug. What we need now is a study that compares Bactrim to aerosolized pentamidine as PCP prophylaxis. Such a study is underway, though data is not yet available. Even without these study results, a shift to Bactrim as the standard PCP prophylaxis is occurring. We are becoming increasingly aware of the limitations of aerosolized pentamidine. Not only is the breakthrough rate higher, but the occurrence of extrapulmonary PCP where AP cannot reach is increasing. At the same time, we are dealing better with Bactrim's side effects. We are able to "treat through" rashes that develop and itching is well treated with Benadryl or a switch to a night time dosing. In addition, the advantages of Bactrim for its overall antibacterial efficacy are becoming evident. And Bactrim also holds potential as a prophylaxis for toxoplasmosis. The Atlanta ICAAC included two reports that may prove to be a major turning point in the Bactrim vs. AP discussion. The University of Iowa offered a cost benefit analysis of the two approaches. Their study pointed out that if all patients who have had pneumocystis went on Bactrim as secondary prophylaxis, 3834 annual deaths would be averted vs. 327 by use of AP. In addition, the savings in hospital costs is $430 million vs. $61 million. On a more personal level, the drug and the administration costs of aerosolized pentamidine can run as high as $2000-$3000 per year. Kaiser Hollywood researchers presented a detailed study of 116 patients who took double-strength Bactrim once a day, three times a week. They reported no PCP breakthroughs in the 18-24 months of the study. Only 28% of the patients experienced any side effects and only 9% were truly intolerant of the drug and had to withdraw. In sum, all those on aerosolized pentamidine should consult with their medical provider and carefully consider switching to Bactrim. Those facing going on PCP prophylaxis should look at all the facts and get the latest information. More and more, it appears that Bactrim is the effective, cost efficient way to go. ============================================================================== A PROPHYLAXIS PROTOCOL by Robert S. Jenkins, MD and Gary P. Jacobs, MD In general, prophylaxis is purely preventive medicine and not a treatment for HIV itself. We feel that effective prophylaxis for the major opportunistic infections is currently as important as trying to kill the virus itself, at least given our current capability to "kill" the virus. Keeping the opportunistic infections away is probably easier than treating them when they have surfaced and caused clinical problems. None of the suggestions are written in stone, and treatments, drugs and dosages seem to change by the month. Please note that this was written in December 1990. If it is over six months to a year old, it is probably outdated. In the end, please make your own decision. Notice that in this article we only make suggestions, not recommendations. This article is food for thought, not a prescription and patients need to consult their own physicians. PNEUMOCYSTIS PNEUMONIA PROPHYLAXIS Pneumocystis pneumonia prophylaxis is required for anyone with fewer than 250 T4 cells (or T4%<20%) and for HIV symptomatic patients with fewer than 300 T4 cells (or T4%<25%). HIV symptomatic means: thrush, tinea infections (skin fungus), severe impetigo, severe fatigue, persistent diarrhea, severe night sweats or daily fevers. We think the optimum prophylaxis is to be had with a combination of inhaled pentamidine and an oral medication. Our suggestions are: - Pentam 300 mg by hand held nebulizer every month and one of the following: - Dapsone 100 mg 3 times a week, Monday, Wednesday, and Friday; or, - Bactrim DS one pill a day, seven days a week. Our personal preference is the pentamidine and Dapsone, as Dapsone may very well prophylax for toxoplasmosis and the incidence of allergic reactions to Dapsone is far less than it is for Bactrim. HERPES PROPHYLAXIS Herpes prophylaxis is indicated for anyone who is HIV positive and has recurrent oral or genital herpes lesions. Use acyclovir (Zovirax) capsules 200 mg each. Take the smallest dose that seems to prevent an outbreak. Most people take about three a day when using it for herpes prophylaxis. There was a period of time when we were prescribing acyclovir with AZT and hoping that the acyclovir was working in synergism with the AZT. As it turns out, the patients that noticed any benefit on this regimen were the ones who had herpes problems to start with. We now recommend acyclovir only for the people who have problems with herpes outbreaks either oral or genital and we encourage patients to take the lowest dose that prevents an outbreak (typically, three a day). Acyclovir might also be useful for patients with hairy cell leukoplakia which is thought to be caused by an Epstein Barr virus (EBV) infection of the tongue; EBV is in the herpes family of viruses. The doses to treat hairy leukoplakia can range from 5 to 15 acyclovir (Zovirax) capsules per day. FUNGUS PROPHYLAXIS A select group of HIV patients has significant problems with fungus infections (recurrent thrush and tinea in particular). Tinea is a skin fungus: jock itch, athlete's foot, etc. Why certain patients lose their ability to fight fungal infections is not known. These patients should probably prophylax with an antifungal, such as fluconazole (Diflucan) 100 mg, three days a week. Fluconazole is overall a better antifungal than Nizoral (ketoconazole). Fluconazole might be less damaging to the liver than Nizoral, but is also more expensive. If cost is a definite problem, use Nizoral 200 mg three times a week. Anyone with fewer than 100 T4 cells (or T4%<10%) should prophylax against fungi (e.g., cryptococcal meningitis, pulmonary coccidioides, pulmonary histoplasmosis, and oral candidiasis), regardless of previous problems or lack thereof with fungi. Fluconazole 100 mg three days a week or Nizoral 200 mg three days a week are our suggestions. Fluconazole is the "stronger" antifungal, but about five times as expensive as Nizoral. TOXOPLASMOSIS PROPHYLAXIS When one has fewer than 100 T4 cells (or T4%<10%), the incidence of other opportunistic infections rises. Toxoplasmosis of the brain occurs with relative frequency at this T-cell range. Relatively "early on" one may want and probably needs to know whether one has been exposed to toxoplasmosis. There is a blood test to determine whether this is the case (the toxoplasmosis IgG and /or IgM antibody test). One of the problems with this blood test is that as HIV progresses, the body's ability to make antibodies can be lost and thus a negative test is no guarantee that one will not develop toxoplasmosis. Additional bad news is that one can be exposed to toxoplasmosis at any time and become infected after having the blood test done. In summary, our suggestion is to have the toxoplasmosis antibody test done as early as possible, and if it is positive, prophylax against toxoplasmosis from that time on. Effective treatment of active toxoplasmosis is best achieved with a combination of pyrimethamine, leukovorin and sulfadiazine. Pyrimethamine is a folate inhibitor and thus can cause decreases in one's acute white blood cell count, thus the leukovorin is required to "rescue" the white blood cells. Using pyrimethamine with leukovorin rescue is rather drastic "prophylaxis," but may have some merit. It is believed that Dapsone 100 mg three times a week will prophylax against toxoplasmosis, although this has not been proven. It is thought Bactrim might prophylax against toxoplasmosis. Also, Bactrim is a sulfa drug; Dapsone is a sulfone. Our suggestion is Dapsone three days a week. There is no definitive proof that this is better than Bactrim, although the incidence of allergic reactions to Dapsone is less than that for Bactrim. If one cannot take Bactrim or Dapsone and one is at definite risk for toxoplasmosis (i.e., a positive antibody test), consider pyrimethamine and leukovorin. Consult your physician about this; these are suggestions. CRYPTOSPORIDIUM PROPHYLAXIS When one has fewer than 50 T4 cells (or T4%<5%), the incidence of cryptosporidium colitis or enteritis, causing diarrhea, malabsorption and gallbladder disease goes up (do not confuse this with cryptococcal meningitis, which is a fungus). Unfortunately, there is not yet good treatment for cryptosporidium, but there are two marginal treatments. One is Humatin (paromycin), an oral aminoglycoside, that is not well absorbed by the gastrointestinal tract and thus, stays in the GI tract. It is an old anti-parasite drug that has resurfaced in the past six months. In our practice, about half of the people who tried it for cryptosporidium diarrhea had some benefit from the drug. The other drug is Diclazuril made by Jansenn Pharmaceuticals and now available in compassionate use studies. A veterinary form of the drug, Clinicox, is available in Mexico. Whether one should prophylax against cryptosporidium is very debatable. An argument for prophylaxis is that once cryptosporidium has infected the GI tract, it is almost impossible to eradicate as it will infect the gallbladder and bile ducts where the anti-crypto drugs have a hard time reaching. One will then constantly seed the small bowel and colon with the cryptosporidium hiding in the gallbladder. Also, cryptosporidium is a common cause of cholecystitis in PWA's. Arguing against taking prophylaxis for cryptosporidium is primarily that we have no idea how effective or ineffective the drugs used to treat cryptosporidium are. Humatin is an oral aminoglycoside; aminoglycosides when given intravenously can cause deafness and kidney damage. In general, Humatin is not well absorbed by the GI tract and thus should not cause the deafness or kidney damage. HIV patients may have a "less intact" GI tract and thus could possibly leak some Humatin across into their blood. This is mostly a theoretical consideration and quite frankly, we have not yet seen this happen. Diclazuril is available only on "compassionate use" from Jansenn Pharmaceuticals. The veterinary form of the drug, Clinicox, may be the best of the three options, but no one really knows. Clinicox is only available in the AIDS underground and dosage is not fully understood. Our suggestion for cryptosporidium prophylaxis is that if one has problems with diarrhea, weight loss, recent gallbladder problems or has previously diagnosed cryptosporidium, they may want to seriously consider cryptosporidium prophylaxis. Which drug to use is whichever is available to you. In our practice, Humatin has been as effective as Diclazuril and Humatin is available on prescription and FDA approved for intestinal parasites. Your choices for prophylaxis are: - Humatin 250 mg 2 capsules/day, or - Diclazuril 50 mg 2 capsules/day, or - Clinicox 2 capsules/day. Doses used for prophylaxing against cryptosporidium are different from the doses used to treat cryptosporidium. ADDED PROPHYLAXIS FOR PATIENTS WITH FEWER THAN 50 T4 CELLS With fewer than 50 T4 cells (or T4%<5%), one is susceptible to cytomegalovirus (CMV), Mycobacterium infections, bacterial infections of the sinuses (sinusitis) and overwhelming herpes infections. Prophylaxis for herpes has been discussed earlier. The episodes of sinusitis should be treated as they occur and as early as possible with whatever antibiotics your physician prescribes. Cytomegalovirus is difficult to treat; the only currently approved medication is DHPG (Cytovene). It is given by IV once a day and requires some sort of permanent IV line in the patient (e.g., a Hickman catheter). Prophylaxis for CMV using DHPG is rather cumbersome and is certainly expensive. There are antibody tests similar to the toxoplasmosis tests discussed earlier. The other drug available (on compassionate use only) is Foscarnet. It is an intravenous drug and is difficult to obtain unless the patient has clearly failed DHPG; thus, our options for CMV are limited at present. Another very expensive drug is HPMPC, but it is too early to be proposing it for prophylaxis. PROPHYLAXIS AGAINST MYCOBACTERIUM AVIUM INTRACELLULARE (MAI) The final topic is the most complicated and probably most controversial, prophylaxis for the mycobacterium, (MAI = Mycobacterium avium intracellulare, Mycobacterium kansii, Mycobacterium gordonae, etc.). This genus/species of opportunistic infections is ubiquitous in our environment, that is to say, it is found everywhere. In one series of autopsies, it was found in 50% of AIDS patients. What degree of discomfort it causes (morbidity) and how much it contributes to mortality, is debatable. All in all, having a mycobacterium species in one's body is probably not a good thing. It is often the cause of high fevers, chronic anemia, malabsorption, weight loss and diarrhea. In our opinion, if one has fewer than 50 helper cells (or T4%<5%), one should probably prophylax with an anti-Mycobacterium medication. Now the question is, which one or ones to use. To make a long story short, the traditional medications used to treat regular tuberculosis (Mycobacterium tuberculi) just do not work well against mycobacterium avium. Even altering the regimen to include Cipro, Lamprene, Rifampin, Ethambutal and Amikacin have shown marginal results at best. Recently a drug from Europe, clarithromycin, a derivative of erythromycin, has been used in this country with remarkably good results for treating active Mycobacterium avium. We have three patients alive today because of this drug, each of the patients failed all other Mycobacterium avium treatments. The drug is not FDA approved and has to be imported for individual/personal use. It comes in 250 mg tablets and costs about $3 to $4 per tablet. For prophylaxis we would suggest one 250 mg tablet a day and do this every day. We feel that taking clarithromycin in that low dose is not harmful and probably very helpful. The issue of the mycobacterium becoming resistant to the clarithromycin is a theoretical concern. We have not seen that happen over the past six months. If resistance does occur, there is another erythromycin derivative, azithromycin, that could be tried, also available in Europe. Remember that these two drugs are not FDA approved and have to be brought in for your personal use in order to be in compliance with federal law. Your insurance, Medicare or MediCal will not pay for them, but the reality is that they work and if you are serious about prophylaxis for MAI, you should strongly consider clarithromycin as single drug prophylaxis, 250 mg a day, seven days a week. If cost is unbearable, Clofazamine 100 mg a day is FDA approved and insurance will cover, but the reality is, it is not thought to be especially effective. The doses of clarithromycin for treatment of "active" MAI are much higher, 4 to 6 tablets a day. Please do not get the treatment dose confused with the prophylaxis dose. Remember that this use of clarithromycin is controversial, avant-garde and not proven with any controlled trials. There is another drug, Rifabutin, being used in a study in this city; the results are pending. ============================================================================== AIDS REGIONAL BOARD, HOUSING FOR PWAS Being Alive has already taught me a great deal about what AIDS means to the City and County of Los Angeles. We have been active participants in the new process to develop a genuine community consortium to plan AIDS services, through the creation of the AIDS Regional Board. This County covers over 4,000 square miles, with 10,000 diagnosed AIDS cases and an estimated 112,000 who are HIV+. In the 90s, the majority of new people with AIDS will be Latino/a, Black, Asian/Pacific men and women. This means that lip service to "minorities" never enough, but now more obviously inadequate will have to change to real participation by all affected communities in the planning and distribution of AIDS services. To that end, coalitions have consolidated to form a Regional Board to implement the mandates of the Federal CARE Bill and to develop the coordinated continuum of care that will be required as numbers skyrocket in this decade. The Los Angeles County AIDS Care Network will consist of all community-based agencies, activist groups and government entities involved in AIDS. Each member of this large Network is to work in one of nine Task Forces, including groups for Health Care, Direct Services, Prevention/Education, Mental Health, Homeless & Housing Services, Substance Abuse, and Youth. Being Alive is actively involved in the ninth task force, Persons with HIV and their Advocates. Ultimately, each task force is to select three representatives for the Regional AIDS Board, at least two of which must be people of color, at least one female, and at least one lesbian or gay man. This Regional Board will be responsible for overall funding and coordination of the system of care. The LA County Board of Supervisors, which is of course the largest AIDS service provider and the recipient of most of the funds that have been spent up to this time, will be an important component in any AIDS planning and spending decisions. The position of the Department of Human Services of LA County is that the Supervisors will appoint 18 members of the Regional Board, most members of the existing AIDS Commission. Five other representatives will be from governmental entities including the City of LA and State of California. At this time, the community based AIDS organizations will send 14 representatives from the Task Forces. The whole AIDS Regional Board, 37 members, will be an amalgamation of all these different powers. The community organizations hope that the LA AIDS Care Network will be a truly democratic forum for AIDS planning, where agencies will no longer be forced to compete for scarce public funds. No longer will agencies in communities of color compete against larger, predominantly white agencies with access to private money; no longer will women, children and adolescents be left out. No longer will social workers speak for us; we will speak for ourselves. All the community-based Task Forces have begun their work. The Persons with HIV Task Force intends to be a real voice for all the different populations living with HIV. We intend to visit and talk to as many communities as possible and bring their wishes to the AIDS Regional Board. The need for AIDS services is growing every day while resources are becoming scarcer. We hope this AIDS Regional Board will help solve the problems of duplication of efforts, divisive competition for funds, gaps in services and scattered community response. One area that I hope will receive immediate attention is housing. As a new resident of LA, I have been surprised that our community does not have the capacity to find housing for PWAs. Every day people come into our offices in Silverlake and West Hollywood and pore over our roommate referral lists. The generous people who offer to share their homes are to be commended, but we have a serious problem in LA with the fact that there is no housing for people who cannot afford a deposit, perhaps because they are receiving or waiting for disability or other public benefits (the term is used advisedly). In Chicago, there are three large apartment buildings that operate under the name Chicago House, providing three levels of housing: independent living, extended home care and hospice care. Of course there are many fewer cases of AIDS in Chicago, and the need is consequently smaller, but surely in a city and county with such incredible resources and dedicated AIDS service providers, there might be some agencies or individuals who could pool investment money and provide apartments for PWAs who are active and wish to live independently. T., who was here in our office every day for a month looking at roommate offerings, now has a place to live. But what did he do in the meantime? D. was able to rent an apartment and then had no way to buy a bed or a table because she spent her whole check. E. checks the listings every day but because he is Black and poor, he hasn't been accepted in some homes. An example of how bad things are is the controversy over the West Hollywood Community Housing Corporation, that is developing a 22 unit building to be occupied by people with AIDS. The project was approved by the West Hollywood Planning Commission, but some community members are trying to stop the construction. WHCHC explains that they are sensitive to the objections of people in the area, but that the need is urgent. Too many PWAs are sleeping on friends' couches or in cars. What can we do? I leave it to you readers to suggest some real solutions. In the meantime, there will be a public hearing on the West Hollywood Community Housing Corporation's proposal before the City Council, on Tuesday, January 22, 7:00 pm at West Hollywood Park, 647 N. San Vicente Boulevard. Let's show our support. ============================================================================== AN ANALYSIS OF THE MAJOR RISK MEDICAL INSURANCE PROGRAM by Gunther Freehill The Major Risk Medical Insurance Program (MRMIP) is a newly created mechanism to provide indigent people with health care in California. The program is intended to provide medical care for individuals who are now falling through the cracks of the health care system in this state, and is being heralded as the salvation for people with AIDS. It seems, at least in the short term, the best chance of a lot of people to get life-sustaining health care. But, at the risk of sounding like the Grinch that stole health care, I think that all of us should be screaming bloody murder about it. HOW MRMIP WORKS The MRMIP (called "Mr. Mip") mandates that people who are uninsurable under current insurance industry practices be allowed to buy insurance at a fixed rate. In exchange for providing insurance coverage, insurance companies are protected by the state against loss. MRMIP will include about ten thousand individuals and is designed for people who have been refused insurance within the last year, who have been dropped by an insurer within the past year or whose current insurance premium exceeds the premium for those on the program. The program is designed to benefit those with chronic or major illness, but does not require proof of such an illness. No special exclusion of benefits is allowed in these policies. Some of the insurance providers are likely to provide a few benefits not mandated by the program. It is likely that the health care provider will not know which people are insured under MRMIP, and which people are insured the old-fashioned way. The premium is determined by rating the client on the client's age and geographic location. The expected average premium is $240 per month, and is paid by the client directly to the insurance company. The company is guaranteed an administrative fee of 11.5%. The remainder ($212.40 per month per person) is used to pay for the health care costs of those insured. In the event that health care costs exceed those funds, the insurance companies can draw from a state provided reserve of $30 million dollars, garnered from Proposition 99 monies, the "sin tax" on cigarettes. The $30 million pool is guaranteed for one year; the increase in the premium from year to year is mandated to be the standard average increase. As long as people keep smoking, the Proposition 99 monies should keep on rolling. WHAT MRMIP DOES We are fooling ourselves if we believe that MRMIP is about keeping Californians healthy. The program is about keeping insurance companies healthy. It's not a safety net for people in need of health care, it's a safety valve for the insurance industry, a way for the righteously outraged to blow off steam. The way insurance is supposed to work is this: premiums are paid by clients and pooled into a fund. When a client needs health care, the insurance company pays for it from that pool. Because of the profit-driven, competitive way in which insurance works in this country, insurance companies have to keep people who are sick from buying their insurance. If people who have insurance get sick, insurance companies have to remove them from their client base. MRMIP helps them do this. It gives insurance companies another way of getting off the hook. It lets them renege on commitments they have made to people who are sick and often incapable or disinclined to fight back. It's no more than a band-aid on a hemorrhaging system of health care. WHAT MRMIP DOESN'T DO The program is not designed to serve the people most in need of help. Although by some standards a premium of $240 per month is not high, it is well beyond the means of many people. The policies will effectively not be available to low income people, or people whose health care costs have already depleted their financial resources. There are about six million people in California without health insurance. There are about three hundred thousand who will qualify for this program, a program designed to serve ten thousand. The numbers of policies may be expanded over time, but the pace of that expansion is murderously slow. The pool of funds to pay for this health care is unrealistically small. The entire pool is an average of $212.40 per person per month, plus the $30 million from the state, a grand total of about $55.5 million. It seems like a lot of money, until you realize that for the ten thousand people in the program, it is an average of only $5,548 per person per year. Remember that each of these ten thousand people have a major or chronic illness. Remember that AZT can cost as much as $8,000 per year. Remember that dialysis costs thousands of dollars more than that. With health care costs soaring, I'm not convinced that adequate funds are available. Given the fiscal realities of state politics, there is no real guarantee that the funds will be there from year to year. If the funds are depleted, the state may be in default of its contractual obligations with the insurance companies and those insured. In that case, the state may be forced to divert funds from other health care programs and services serving the indigent, adversely affecting those who are not on the program. MRMIP keeps intact the odious practice of charging different rates for different people. Rather than creating a single risk pool for clients in the program, the state accedes to the insurance industry's routine of singling out individuals most at risk for need of health care, and requires of those people higher premiums. The program contains no penalties for the insurance industry. It fails to address the gross unfairness of individuals who have paid premiums in good faith for years who have been dropped by a bloodsucking insurance industry. MRMIP does alleviate some of the damage caused by corporate greed and irresponsibility, but it is not a major advance towards a solution. Worst of all, the program is limited to ten thousand slots. These slots will be filled on a first come/first served basis. We know that in the real world, this means that people who are aware and activated have a better chance of getting on this program than others. I don't for one minute begrudge anybody all the health care they can buy, beg, borrow or steal. But it is unprincipled not to address the issues of inclusion and privilege. MRMIP is an attempt to buy off the people most likely to organize and channel their anger into changing the system, leaving others disempowered and without care. It does nothing more than add another tier to the system of medical apartheid that we have now. The first come/first served distribution means that people who are already most marginalized by this society will be left out in the cold again. Who are those people? In a health care system historically unresponsive to the needs of low income people, people of color, immigrants and women, the answer is as plain as it is unacceptable. In sum, the MRMIP is no solution to the disintegrating health care system. Whatever its intent, its effect is to collude with a corrupt and uncompassionate cabal of private insurance providers to continue their profits and their stranglehold on the health care of Californians. Even as we avail ourselves of its advantages, we must redouble our demands for effective, radical, bold and immediate change. We still need to cure the system. We still need universal health care. We still need it now. ============================================================================== LONG TERM SURVIVAL by Rick Schwartz December 3, 1986 was the worst day of my life. On that day I was told by my doctor that I had Pneumocystis carinii pneumonia. He told me the good news was that I was eligible for AZT; the bad news was that I had AIDS. I did not see any good news. Indeed, on December 3, 1986, I saw my life ending, my career ending and my relationships destroyed. I required medication to relax and sleep while doing IV pentamidine in the hospital and later while continuing the therapy at home. Prior to late November 1986 I had been in excellent health; I had had no signs or symptoms of HIV infection and did not consider myself a high risk person since I had been in a monogamous relationship for years. Because of this I was totally unprepared for the shock of an AIDS diagnosis, and it took me a month to determine that there were things I could do to take control of the mental and physical problems caused by HIV. The first thing I was determined to do was get as much information as possible about AIDS because I had not previously read anything other than minor news accounts. I spent several days at UCLA's Medical School Library reading periodicals and gathering information. I even decided to subscribe to several publications including Lancet, Science, New England Journal of Medicine, Annals of Internal Medicine, etc. This was long before I discovered Being Alive Newsletter, Project Inform Perspective, AIDS Treatment News, Beta, Amfar and Treatment News which have provided me with more timely and important information than any medical journal. I started AZT on December 31, 1986. I was compulsive about taking the two pills every 4 hours (I still wake up automatically at 2:00 A.M. most nights) and if I was off by a few minutes I then thought something terrible would happen to me. Medical science and I now realize that two pills every four hours is not necessary and that the anxiety I experienced when I missed a dose was not justified. AZT did not produce any immediate side effects other than that I had to snack more often or I would feel faint and I felt light headed for the first couple of weeks. However, the first shock I experienced was in mid-February 1987 when my doctor told me I should think about having a blood transfusion. At that time I thought transfusions were "a last resort" thing, hated the sight of blood and needles and was extremely scared about the entire concept. All this changed when I passed out, hitting my head, on February 21st as I got up to go to the bathroom. I called my doctor the next day and was advised to go to the hospital emergency room to have blood taken and have it typed and crossed for a transfusion the following Monday. I must have looked pale because shortly after arriving at the hospital and having my blood drawn, I was asked to remain there until the results were in. The staff felt it was unsafe for me to drive, even though I had driven there. My hemoglobin came in at a very anemic 6.9 (normal male results are about 14-17) and I had two units of packed red cells transfused that evening and three more the next Wednesday. Between February 22, 1987 and March 1989 I had over 37 transfusions of 3 units each of packed red blood cells due to the anemia caused by AZT. However, I would do it again (if DDI and DDC were not available) because I believe that the use of AZT is one major reason I am alive and functional four years after my diagnosis. In December 1986 when I was diagnosed with PCP, the average lifespan of PCP patients was 48 weeks (KS patient's lifespans were and are generally much longer); my doctor told me I might live as long as 18 months with AZT. This, of course, was before any type of prophylaxis for PCP was known. I started areosolized pentamidine in June 1987 and have been doing 300 mg every four weeks ever since. My insurance company paid for a $595 Bunn air pump so I could do it at home (the pump paid for itself in two months compared to what was being charged by my doctor!). I buy the nebulizers at $10.95 each from Bay Area Medical and the pentamidine (for $129 each) from a pharmacy. I had a minor upper lobe recurrence in November 1988 before the standard practice became to lie down on one side, then the other to maximize the deposition of the drug on upper lung surfaces. After attending this year's AIDS Conference in San Francisco, I decided to double prophylax and now take one 100 mg Dapsone pill on Sundays and Thursdays. Some people say I am lucky to be alive and as functional as I am (I've lost 40 pounds, but walk, drive and take care of myself well). I think my determination to survive, my mental attitude of avoiding depression (without drugs), and positive thinking, as well as my activities in helping others and being active in Being Alive, have done more to prolong my life and its quality than anything else. Of course, I do take appropriate drugs for specific physical problems as soon as those problems become apparent. For instance, I was diagnosed with cryptosporidiosis in October 1989 after losing 14 pounds and massive amounts of body fluids in 5 days. My gastroenterologist at the time had insisted that it did not sound like crypto, but I insisted on a stool sample test. Two days later the news came that indeed I did have crypto. I have taken 4 pills of Rovamycine 500 (spiramycin) daily since November 1989 and have been lucky that it seems to be working for me. In May 1990 MAI was cultured in my blood. I determined that MAI was a reason for my newly acquired extreme fatigue, occasional night sweats and fever spikes. In consultation with my physician I started on a course of therapy consisting of the standard MAI pills. In late November an endoscopy with biopsy revealed massive amounts of MAI in my small intestines, which probably accounts for the substantial weight loss I have experienced during the last 6 months. I read with great interest Jim Corti's article in the December 1990 issue of Being Alive's Newsletter and have been doing clarithromycin (Klacid) ever since with what I would describe as miraculous results. After 5 days on the drug (2 pills every 8 hours) my fatigue totally vanished and I have more energy now than I have had in over a year. I hope that the drug will work as well for others with MAI problems and strongly recommend it. In March 1989, Jules Parnes advised me that an underground source in Florida had available genuine DDI at $950 for an ounce, which was thought to be about a month's supply. I decided to stop AZT (I was down to three pills a day and still required regular transfusions) and try the DDI. In six weeks my hemoglobin returned to a normal 15.2 and my T-4 cells even rose from 10 to 30. I did everything possible to publicize the beneficial effects of DDI including carrying a sign "SAVE LIVES-LEGALIZE DDI" in the June 1989 parade and wrote an article for the Being Alive Newsletter. Unfortunately, the Florida source could not keep up with demand, but DDI was made available for compassionate use later that year, and many others have experienced the beneficial effects. I am now on compassionate use DDC because of two episodes of pancreatitis which my doctors have determined was due to Zantac, not DDI! If you are using Zantac, you should be aware that in "rare" instances it can cause pancreatitis (which is an extremely painful inflamation of the pancreas requiring hospitalization). During the last four years I had some "dry holes" (i.e. no beneficial results). Egg lecithin, dextran sulfate, oral alpha interferon and the viradex (produced by Dr. Stephen Herman of Villa Park) had no measurable effect on me or others with whom I shared the drugs. They probably did produce a positive mental result because I was doing something; however, I do not recommend them. I remain determined to "fight on" and "buy time" because I believe that medical science will find a cure. I recommend the following for anyone wishing to fight on: 1 Read and gather reliable information from dependable sources and be willing to experiment. If it doesn't help or if it causes problems, you can always stop a medication, reduce the dose or otherwise modify the treatment; 2 Reduce stress and avoid depression (Do not give up!); 3 Intervene as early as possible with appropriate drugs to prevent more serious problems later. Fear of treatment and procrastination can kill you; 4 Get involved in volunteer or other activities that make you feel better about yourself, contribute to your will to live and allow you to think positive. ============================================================================== End of Being Alive Newsletter (January 1991 part 2/2)