I haven't had much experience in my life using health care services. The working class ethos under which I grew up dictated that folks take care of their own problems to the extent that they could: one needed to be really sick before a visit to a doctor or the emergency room was in order, and the idea of seeking professional help for mental health issues ("getting one's head shrunk") was even more outrageous, self-indulgent, and bourgeois. So, I never had a "family physician" or any kind of doctor I saw on a regular basis. Suffering stoically--but remaining in control of one's own body--was my family's modus operandi, one that prepared me well for my later life as a junky.

This past year, I made up for all those years I never saw a doctor. In August 1996, two days after returning from a six-week consulting trip to Eastern Europe, I found myself in the emergency room of a New York hospital, extremely weak and breathing only with tremendous difficulty. I was admitted, and, after a broncoscopy, diagnosed as having a life-threatening case of pneumocystis carinii pneumonia (PCP). Although I'd suspected for some time that I was HIV+, I'd never taken an antibody test. I was told that I had advanced AIDS (it turned out I had a whopping 15 T-cells) before I'd ever had the chance to grapple with what being HIV+ meant.

As someone who was closely involved in the original (illegal) efforts to establish needle exchange in New York City and having worked in one position or another as an advocate for the health needs of illicit drugs users for the past ten years, I was intimately aware of the incredible stigma, discrimination, and outright hostility and disgust injection drug users routinely face when attempting to seek health care services of any kind. Suddenly, I was my own client, and all of those years I'd spent advocating for other drug users, while giving me insight into some of the systems I would now have to negotiate for myself, did not prepare me for the treatment I would also receive as a heroin injector with AIDS.

While I had no unfounded expectations that things would be different or better for me than they'd been for so many of my former clients--why should they be?--nothing could've prepared me for the humiliation and emotional trauma I would experience over the next year as I tried simultaneously to deal with the fact that I had advanced AIDS, cope with a body that was quickly deteriorating (I've been hospitalized six times since the beginning of 1997), and, after years of hiding my own heroin use from colleagues, acquaintances, and even my closest friends, end my life of duplicity and begin the process of coming out as a junky both in the public context of my job and the harm reduction movement and in my private world composed of those to whom I looked to and relied on for support in my personal life. The journey I've taken this past year as I tried to find appropriate health care--now literally a life-and-death necessity for me--has been a textbook case of how not to effectively engage illicit drug users in health care services. I share my story in the hopes that it will illuminate why harm reduction is so critical to reaching the population of which I now find myself a member.

When I landed in the hospital with PCP I had no physician of my own and, since I was working as a consultant, no health insurance of any kind. A doctor at the hospital where I was admitted luckily (I thought) agreed to take me on as a patient during my stay. I was maintained on methadone tablets (Dolophine) and pumped continuously with intravenous antibiotics for the treatment of the pneumonia. Although all the toxic drugs made me incredibly sick, I was relieved that I had connected with a doctor willing to care for me. My relief soon dissipated, however, when he stopped coming to see me and began to refuse my telephone calls (I would call his office and hear him in the background tell his secretary to say he wasn't in). After several days of unsuccessful attempts to simply get him on the phone, I was infuriated at being ignored, removed my I.V., and checked out AMA (against medical advice) under the hostile glare of several residents and nurses. My doctor was furious when I showed up at his office in order to get prescriptions to continue to treat my pneumonia (I learned later that my case was apparently serious enough that I should have been in the hospital for several more weeks of intravenous therapy). The explanation I received was that he was concerned I would engage in "drug-seeking behavior" if he let me out of the hospital (he actually used those words!); his treatment strategy was to keep me chained to a hospital bed until the PCP was completely cured.

After he wrote me prescriptions for Bactrim, prednisone, aclyclovir, and the other pharmaceuticals I needed, I began to ask, "Would you give me a prescription forŠ" but before I could finish my sentence he shot back, his voice brimming with hostility, "I can't give you methadone. You'll have to go Beth Israel for that.." He was convinced that the only reasonI'd come to his office at all was not to get the PCP treatments I needed but to scam him for a methadone script.

The clinical decisions he made about my care were clearly influenced by his personal beliefs about what junkies supposedly do, even though I had been a model patient interested only in recovering from the PCP and frankly too sick to be running around looking for drugs. His condescending, infantilizing treatment of me was unbearable, but I was the one who looked like a non-compliant, "drug-seeking" dope fiend when I checked out of the hospital because I wouldn't stand for it.

."You smoke?", the emergency room intake nurse wants to know. After answering a barrage of questions about one's health status and history in the ER, the same questions are again put to patients by another intake nurse once one gets to the floor, and then again by the admitting physician or resident. "No, never have," I say. "Wouldn't dream of poisoning my body that way."

"Drink?" "I used to drink heavily but don't anymore. Haven't really touched alcohol for the past year." I'm starting to look like a goody-two-shoes, completely pure in body.

I can tell the nurse asks the next question only because she's required to and not because, given my answers to the previous ones, she expects there to much in the way of illicit drug use going on with me.

"Well, uh, I, uh, shoot um, inject, you know, dope, uh, heroin." Despite the fact that I long ago mastered proper injection technique, I've always bruised profusely, and it seems, permanently. Track marks squirrel up and down the veins on both of my arms, upper and lower, like pictures from an anatomy textbook or tattoos. If I decided to lie about shooting dope, I'd be caught the instant someone went to take my blood pressure or plant an I.V.; besides, I have to let the hospital staff know that I'll need methadone if I'm going to be admitted. In the complicated calculus a junky employs when deciding how to answer each of these questions--a calculus used to try and determine what answer will bring the least amount of reprisal, discomfort, and shame--I figure it's better to be branded a plain old junky than a junky who lies.

I've been fortunate, I suppose, in that I've always felt pretty much in control of my drug habit. After a lifetime of depression, and long bouts of self-medicating with alcohol, cocaine, and whatever else was available, heroin was a godsend. In fact, I can truly say that junk is one of the best things that's ever happened to me. People are always telling me--including my doctor--that anti-depressants would work just as effectively and I wouldn't have to shoot up or involve myself in an illegal economy. All I know is that dope has worked and continues to work for me: it helps me wake up in the morning and go to sleep at night; have an appetite and digest my food properly (not an insignificant thing for a PWA); get through a day without feeling crushing depression; enable me to get to work and be productive in a very challenging job; control the horrible diarrhea I get as a result of taking toxic medications; manage the diffuse pains I experience that I'm told are caused by HIV attacking my muscles and joints; and, contrary to the stereotypical images of junkies nodding out in doorways, junk gives me huge amounts of physical energy and the motivation to get things done. This is not to say that my heroin career has always been easy or problem-free. Believe me, I know the dread of waiting for withdrawal to set in after you've shot your last bag and are out of money. I know what it's like chasing down dope in the dead of winter (that blizzard we had in '95 was a bitch!); buying drugs from asshole dealers; and spending one's last $20 on two beat bags. Using is not a complete bed of roses for anyone, and I am no exception, but the positives still outweigh the negatives for me, and always have.

My heroin use has always played a very functional role in my life, primarily as a means for coping with depression, and perhaps it is this conscious awareness of why I use that's enabled me to never really be scared of junk or afraid that my habit would become so out of control thatI'd end up, literally, in the gutter. My passionate belief in the efficacy of harm reduction--borne out again and again by my personal experience--has allowed me to use successfully and confidently, for the most part, and in ways that are beneficial to me instead of harmful. I do not buy into the idea that eventually I will hit some "bottom" and finally come to my senses. Using does not have to entail despair, misery, and heartache

There have been times when admittedly my habit's gotten out-of-hand with miserable results (including just recently), but largely I've been able to slow down or stop using when I've needed to. While detox and withdrawal are never easy or enjoyable, a gradually-decreased, three-to-five day course of Dolophine (which my new doctor used to prescribe for me) would usually get me through if I needed to take a break or travel for work. At other times,I'd shoot coke for three or four days to get through a jones (something I refrain from doing these days because of my health) or just go cold-turkey and suffer through it.

Earlier this year I learned that detoxing is much harder to do with 15 T-cells and virtually impossible when you're on rifampin for tuberculosis treatment and the anti-seizure medication Dilantin, both of which cause the liver to metabolize methadone at outrageous rates.1 The longer I was on rifampin, the more efficient it became at clearing methadone from my body until at one point, 90 milligrams was lasting me only about 12 hours. My TB meningitis infection caused me to have seizures whenever I went into withdrawal, and the diarrhea and sweating that are part of detox were now much more dangerous to me as a person with advanced HIV-disease than they had been previously. For the first time in my life, I felt I had very little control over my ability to stop using heroin if I wanted to. Here's really where my ordeal begins.

After months of getting health care however and wherever I could, in the fall of 1996 I finally had health insurance and a doctor who agreed to work with me. This physician seemed truly intent on providing me with health care for my HIV-disease without unnecessarily problematizing my drug use. He made it clear that he felt it would be better if I wasn't using, but I didn't feel judged or belittled. After several weeks of seeing him, he offered me--without my asking--a Dolophine prescription that I found to be incredibly helpful as a drug management tool. He said it would always be available and all I needed to do was ask. (Since doctors can't prescribe methadone for maintenance, he prescribed it for "pain management.") I thought I had died and gone to heaven. For the next several months, having access to legal methadone without being on a clinic was extraordinarily helpful in letting me lead a stable life and still get high when I wanted or needed to. I could travel for work without having to make ridiculously complicated and risky arrangements, and my finances were more often in the black than the red. Unfortunately, my doctor came to believe that he was probably over-prescribing for me as far as the DEA was concerned, and since neither of us wanted him to get in trouble, I agreed to taper off the methadone when my doctor asked me to. What he hadn't told me, however, was that he'd already decided that the last prescription he'd written for me was the final one he would write. Because the rifampin ate away at the methadone I took, I found it impossible to successfully detox off this prescription, and wrongly assumed that he'd write me another until, within reason, of course, I could successfully detox. I felt extremely betrayed when, with absolutely no forewarning, I was told I couldn't get even one more script. I was out, and would have to find some dope that afternoon in order not to be sick. Although I understood and could sympathize with my doctor's very justified fears about the DEA, I couldn't get over the fact that he gave me no time to make some alternative plans. In what other circumstance would it be perfectly acceptable for a doctor to simply cut a patient off of medicine that was working perfectly?

My doctor was surprised and somewhat dismayed when I told him I'd rather shoot dope than go onto a methadone program.

My health problems were becoming increasingly severe. I was hospitalized twice in January 1997 for TB meningitis, and then twice more I would find myself admitted to--and checking out AMA from--the hospital. The 40 milligrams of methadone a day I was given was no match for the rifampin; after the humiliation of begging for more methadone,I'd sometimes be given 40 more milligrams which, because by this timeI'd been in complete withdrawal for several hours, had absolutely no effect on alleviating my withdrawal. BecauseI'd been given 80 milligrams of methadone--no matter that it was dispensed to me in a way that was completely ineffective--hospital staff and even my own doctor became annoyed when I complained that I was still in withdrawal. Drenched in sweat, wracked by stomach cramps and diarrhea, unable to eat or barely swallow my medications, and seizing like crazy, I was apparently supposed to be satisfied with the treatment I was receiving.

In both of these instances, I was in much worse shape after being in the hospital for two days than before I went in. Continual seizing made me confused for days, and caused me to have great difficulty speaking and thinking clearly. No amount of explaining to the doctors would convince them that the seizures I was having were being caused by the fact that they were forcing my body to go into withdrawal every several hours. In fact, on these two occasions my health was actually jeopardized because no one would or could properly medicate me. At one point there was talk about putting me in intensive care when a higher dose of methadone would have done the job. What was so wrong about providing me with proper opiate maintenance? I was again forced to be the non-compliant junky patient and, much to my doctor's chagrin, and with great difficulty on my part due to my weakened and traumatized body, checked out of the hospital AMA, vowing never to return unless I had within my own control the means to self- medicate my own body.

After these two traumatic hospital visits my heroin use admittedly was out of control and my depression was incredibly severe. Although I sworeI'd never do it, at my doctor's urging but against all of my better instincts, I finally enrolled in a methadone program. The notion of surrendering my daily ability to function to a program where the staff made no bones about their opinion that I was a dysfunctional fuck-up was repugnant and utterly disempowering to me. It was unbelievably depressing to sit in waiting room after waiting room with a bunch of other junkies who thought they were being "saved"; I could only feel like a complete failure. I went armed with documentation from my doctor about the fact that I was taking rifampin and Dilantin and had next to no T-cells, but despite a showdown with the clinic doctor on my first day, I was toldI'd be given only 40 milligrams of methadone and raised 10 milligrams a day until an "appropriate" dose was reached. (Apparently, I was lucky: most patients are started off at 30 milligrams and raised by increments of 5 milligrams a day.) Never mind that I had TB infection of the brain that caused me to seize when I experienced withdrawal and thatI'd been shooting 10 bags of dope a day:I'd have to be content with 40 milligrams of methadone. Now in "drug treatment," I was nonetheless forced to continue to shoot dope on top of the methadone I was getting from the clinic or buying street methadone to supplement my dose. I soon had a double habit--dope and methadone--and found that several weeks later when I was finally receiving 90 milligrams of methadone at the clinic that even this dose, above which the clinic said it absolutely would not prescribe, was inadequate because of the effects of the rifampin.

I'd be at the clinic at 7:30 am sharp each morning, sick as a dog, to get my methadone. Because I was in withdrawal, it would take nearly an hour for the methadone to make me feel even slightly human. After spending the entire day feeling like I was constantly on the verge of withdrawal,I'd wake up each morning around 1:00 or 2:00 am, drenched in sweat and unable to sleep, again in complete withdrawal.I'd get up and, in intense pain, have to wait until 6:30 am to get dressed and travel half the length of Manhattan to the clinic, again drenched in sweat and freezing by the time I got there, to receive a non-therapeutic dose of methadone. I maintained this maddening schedule for nearly two weeks, going into methadone withdrawal every single day --something that was physically very traumatic for my body and emotionally devastating--while trying not to supplement my dose so as to give the methadone a chance to work. The clinic continued to refuse to increase my dose, and every time I tried to explain to them that I was taking rifampin, the staff would look at me like I was simply trying to scam them for more methadone. What I actually needed--and what I am convinced anyone on rifampin and methadone needs--was not necessarily a higher dose of methadone but rather two doses of methadone a day. Even a regimen where I took half of the 90 milligrams in the morning and half later in the day would have worked better than what I was offered, but I was told that such an arrangement was impossible.

I was so physically and emotionally beaten down after several weeks of this routine, so tired of being sick every day, absolutely exhausted from a lack of sleep and the trauma of continuous withdrawal, and so infuriated thatI'd humbled myself and asked for help only to be kicked in the teeth, that I was willing to do just about anything to get out of the cycle of daily withdrawal I was in that was so dangerous to my already debilitated body and quite literally driving me to suicide. AlthoughI'd watched one of my former needle exchange clients die a gruesome death from tuberculosis, and althoughI'd been a health educator for years and knew very well the consequences of interrupting tuberculosis treatment, I stopped taking my daily rifampin dose in the hopes that my body would reach some point of homeostasis and the methadone would begin to work. (I was on three other TB medications, and hoped that if I became resistant to the rifampin the others would take up the slack.)

If my experience was at all typical, I am convinced that methadone programs--because of their unwillingness to properly medicate people taking rifampin for tuberculosis treatment--are responsible at least in part for the resurgence of drug-resistant and multi-drug-resistant TB New York City experienced in the 1980s and early 1990s. The program I was on at Beth Israel Medical Center in New York, in any case, was completely unwilling to accommodate even the serious, life-threatening health needs of the kind I was experiencing. Nothing, I was told, could be done about my dose or dosing schedule. Eventually I became too debilitated to travel to the clinic every day in order to receive my non-therapeutic dose of methadone. I ended up kicking the 90 milligrams I was on cold-turkey at home, a process that no doubt severely endangered my health and which caused me unbearable and completely unnecessary suffering, and a process which again landed me in the hospital for another two weeks because my body was so shot. In trying to make sense of my ordeal trying to access appropriate and humane health care, several themes come up again and again. Everywhere I went--from my private physician to the hospital to the methadone clinic--certain assumptions guided the care I received and what the providers would or would not do for me.

"Drugs are your real problem." Every provider I saw assumed that one of the most serious, if not the most serious, issue I was facing was my opiate dependency, despite the fact that this was not something I defined as problematic in-and-of-itself. (Of course, for harboring this attitude I was constantly accused of being "in denial.") Among the things that I was experiencing that I considered to be my most serious problems were: the TB meningitis infection I had and the seizures that it constantly caused; the fact that I had only 15 T-cells and a three-and-a-half million viral load, a condition that kept my body on the constant verge of collapse; the persistent, recurrent herpes zoster infection on my face and head, treatment for which entailed going to my doctor's office every day, including weekends, to receive an intravenous infusion of an extremely toxic drug; the fact that I was undoubtedly experiencing crazy drug interactions as a result of being on no fewer than 14 different pharmaceuticals; the deep depression I was feeling as a result of trying to deal with such huge life changes by myself; and the challenge of trying to earn a living, pay the rent, and continue to perform my job successfully in the midst of this other shit. All of these issues would apparently resolve themselves if only I stopped shooting dope.

Like many other opiate-dependent individuals, I was fine when I was using. It was when I ran out of drugs that the difficulties began. Withdrawal was my real enemy during this whole ordeal and because of the effects of the rifampin, being under-medicated at the hospital and the methadone clinic, and being forced to switch back and forth between dope, street methadone, and the methadone I received through the clinic, I experienced more withdrawal while I was in "drug treatment" than I ever did while I was using. The constant withdrawal I was forced to undergo was so dangerous for my body and so hurtful to me psychologically, yet everywhere I went my use, and not the withdrawal, was perceived to be my problem.

"Opiates are ruining your health." There is a widespread belief among health care professionals that the "non-medical" use of opiates (at least heroin), apparently because it is illegal, is infinitely bad for the body. That was a risk I willing to take. In my estimation, however, the daily intravenous infusions of ganciclovir (Cytovene®) I was receiving for the treatment of herpes zoster were much more damaging to my body than the heroin I was shooting. One of the side effects of ganciclovir treatment is a severe depletion of the body's white blood cells (which to me doesn't seem like the greatest thing for a severely immunocompromised individual to undergo), and several times my white blood count reached such low levels that I had to be given Neupogen injections to stimulate their production. This artificial lowering and raising of my white blood cells can't have been very good for my body, but it was part of a medical treatment regimen and so apparently constituted an acceptable risk. I was also taking isoniazid (INH) for the treatment of tuberculosis, a drug which can cause iatrogenic hepatitis; Dilantin, which made my brain feel crazy all the time; and, as I mentioned, a host of other toxic pharmaceuticals that must have been causing drug interactions of all kinds. For a while I was taking the protease inhibitor nelfinavir (Viracept®), an extremely powerful substance that was tested in clinical trials of a mere several hundred individuals (none of whom were likely self-identified heroin or methadone users) for a period of less than a year. On the other hand, people have been shooting dope in the United States for more than a century now. I would not be surprised at all to learn that the Viracept and the two nucleoside analogues I was taking each day were much more dangerous to my health than the dope I was shooting. Certainly they were more toxic.

"Methadone programs are there to help you." My brief stint on methadone was one of the most humiliating experiences of my life. Everyone with whom I came into contact--from the intake counselors to the woman who drew my blood to the physicians' assistant who examined me to the dispensing nurse--treated me like shit simply because they knew they could. If I wanted to be medicated in a timely fashion or at all, I had to do exactly as they required, without protest or qualification. I could not get over the outright hostility with which even the most routine interaction with staff took place. Because they had control over you and knew it, no one hid the fact that they believed you to be completely dysfunctional, pathetic, and no doubt morally bankrupt. Knowing absolutely nothing about my life or circumstances, every staff member I dealt with harbored fucked-up assumptions about who I was and why I was at the clinic. At a time in my life when I needed some support, I was met with rejection, disgust, and hostility. The clinic's refusal to help me feel comfortable despite the fact that I was on rifampin was nothing short of criminal, and the role of methadone clinics in the drug-resistant TB epidemic--if my case was at all typical--must be exposed.

I am completely on my own when it comes to my opiate use. I've always managed my habit on my own, problems and all, and enrolled in a methadone program (and gave up that control) only because my health problems were becoming so serious. I had to re-learn what I already knew very well: that I must remain in control of my ability to function, and never surrender this to any individual or agency ever again. My physician remains steadfastly unwilling to acknowledge that the extent to which I'm able to successfully and sanely manage my drug use has a direct impact upon my ability to manage my HIV-disease. He insists on treating only half of me--the part he feels comfortable dealing with--despite the fact that it is impossible to separate the issue of my opiate use from my overall health care needs. When I ask him why he refuses to write me a prescription for a few days' worth of Darvon or Dolophine to help me get through a detox, I receive a vague answer that he's "not comfortable" doing it.

It does bother me that I can't rely on my doctor to offer even moral support, and I have no idea if I had to go to the hospital tomorrow whether or not he would prescribe methadone for me during my stay. That I should be forced to purchase a supply of drugs or methadone to take with me to the hospital is insane, but I have no other choice. That I may have to put off checking into the hospital at some point in the future because I'm unable to get the money or the drugs together is criminal.

I'm sure there are people who'll read this and whose only response will be that I'm pretty fucking good at finding ways to rationalize my continued drug use. I have tried--and succeeded several times, for short periods--to stop using drugs during the past six months while I was experiencing the events I describe. Every time I encounter a health care professional, a social worker, or sometimes even a friend who counsels me to stop using, I listen and I struggle with what they have to say, yet I always ask, "Why? Why is it so crucial for me, someone with a life-threatening illness who finds in heroin terrific comfort and few adverse health effects (even health benefits) to stop using and subject myself to a disruptive, major life change?" I'm able to perform a challenging job successfully, have so far been able to continue paying the rent (albeit sometimes late), but most importantly, am willing to suffer the inconveniences and take the risks that are involved in using illicit drugs. That is a choice I'm willing to live with, and I'm so alone in believing that it is a choice that can be consistent with a happy and successful life. That is the hardest part about being a user: not internalizing the belief that I am a piece of shit and trying to live a life of satisfaction and dignity that everyone tells me is impossible

The author lives and works in New York City.

1. See American Thoracic Society, "Treatment of Tuberculosis and Tuberculosis Infection in Adults and Children" (a joint statement of the American Thoracic Society and the Centers for Disease Control, adopted March 1986). Reprints are available from your local Lung Association.