Yet Another Doctor

I'm not sure what has changed, but I cannot seem to retain an HIV doctor for over two years, no matter how hard I try. Ever since moving to Florida, six years ago, I have had no less than 4 HIV doctors and now I am in the process of reacquiring my previous HIV doctor as I just fired my current one. Before moving, I suppose I was spoiled in relation to health care. Since my diagnosis in 85 I had been going to the Henry Ford Hospital complex in Detroit. It was a huge hospital, with a clinic for everything and had been built by the fortunes of the Ford Motor Company family. It was state-of-the-art and the hospital staff was especially qualified and compassionate.

Whatever you needed was just a short walk away at one of the dozens of clinics or labs that occupied each building. Their infectious disease clinic was second to none and they had two doctors who had been pioneers in HIV research, treatment and clinical trials. When I first tested I had a female doctor who nurtured me though my first years and held my hand when I though I was going to die. Evelyn pushed me hard and had little patience for whining. This is not to say that she lacked compassion, but she was very skilled at using it as both a carrot and a stick, to ensure you had the best care possible. She was everything I needed at that time in my life and is one of primary reasons that I have survived for so long with HIV. She helped to lay a solid medical foundation for me, which I have continued to build upon. But then she got an offer, to head her own HIV clinic on the East Coast and after a tearful farewell, I became her associate's patient.

Norm was also a pioneer in HIV treatment and research and he put me through more trials than I ever even knew existed. He believed that we both had a duty to beat this disease and that I had to become one of the soldiers in the battle. To that end, he also challenged me to learn everything about HIV and together we managed every aspect of my health. We talked about my therapy and the options to consider before selecting one. I brought in articles for him to read or he would refer me to some work to gain an understanding about a new procedure or clinical trial. We really worked as a team and I felt equal ownership in my health care and trusted him implicitly with my health.

We also argued and often disagreed about many things, but our goal was always the same. Norm was an exceptional man. He was the kind of doctor who would discuss his patients weekend plans to keep them safe. He wanted you to tell him if you were going to do any drugs, so he could warn of any interactions with your meds or conditions. He freely discussed very intimate details in describing safer sex and would listen patiently and re-explain concepts until you understood. He was also very effective in getting you to agree with his position, but he did it through the sharing of information and persuasion, never through threats or intimidation.

So it broke my heart when he told me to move from Michigan. By 98 my health was in the dumpster and the frozen winters of Detroit were slowly killing me. During the winter I would become a prisoner in my own home and my only respite was an occasional trip to Arizona to see an old friend. So after my fourth bout with PCP I decided that he was right and started to plan my move. Unfortunately, due to my fathers failing mental health, I had to wait until my father was placed into an Alzheimer's unit in early 99, because by then, I knew I had waited, maybe too long.

Welcome to the Sunshine State of Florida, where I don't know a soul and I had just moved with my drug-addled abusive partner. But first things first, so I attended a support group and got the name of a respected HIV specialist and became his patient. Unfortunately I was soon to learn that health care in Florida was very different. This office was run like a well-oiled machine and that was the problem. It wasn't a machine but a health clinic for human beings. They pushed patients in one end and spit them back out just as quickly. My first visit was not with the doctor as I spoke with a physician's assistant. I never saw the doctor, Ralph until my 2nd visit and that was for five minutes tops. This doctor lasted for 4 months because his father died and he went home to run the family business, a wood mill, I believe. I was really floored, because I was just beginning to adjust to him and his staff and poof, he's out the door. But he did have this Adonis of a partner who then became my doctor.

Peter was wonderful, because he was bright, beautiful, gay and pos. I mean, what more could a gay man want in their HIV doctor? We really connected, because we were close in age and he understood my issues as a gay pos male. Unfortunately I was doing better in responding to my treatment that he was in responding to his. It was really hard to review my lab results, only to have him lament on his lack of progress. Like somehow it was unfair that I was improving, when he was still having drugs fail him. I never questioned his ability and we worked well together but test reviews were becoming somewhat troublesome. But before any of that could truly become an issue, he gets hit with a Medicare Reversal decision that demands he repay them $850,000 for overpayments from the past three years for administering IVIG. Suffice it to say, he lost the appeals and his only way out was through Bankruptcy, but not before he passed me onto his new associate, another hot looking HIV specialist, who also happens to be gay.

Moving onto doctor number three, in less that two years, seemed to be overkill. I was tiring of the search for a doctor, because I had no continuity of care hopping from one doctor to another. But I committed to working with Jim and over the next two years we began to develop a really good relationship. I thought I had found a permanent HIV doctor and settled in for the long haul. Unfortunately his partner had other ideas. It seems that there was bad blood developing between them and she eventually forced him out of the practice. And to add insult to injury, he had signed a non-competition agreement and could not practice medicine within 25 miles of her existing practice. I was beginning to wonder if anyone here had ever even heard of the concept of continuity of care.

So I then became the patient of Marah, as Jim had stopped practicing and I really had few options at that time. I was a little leery at first at being back with a female doctor and while our start was a little bumpy, we eventually fell into our groove. She was pretty good at giving me time to discuss issues, but she was under the added burden of caring for both her and Jim's patients. But I've been doctoring myself for two decades now, so I did not have a lot of needs and since my health remained fairly stable, we were both content to just monitor my health for the next year. That's why what happened two weeks ago, remains such a mystery to me.

Stephen has been seeing the same doctor as I was. He sometimes has issues with anxiety attacks and has used Lorazepam for years, to treat the problem and the doctor had no issues in prescribing this drug for him. Yet, when I saw her two weeks ago and requested the same drug for the same problem, I received a very different reaction. She went into this tirade about how she hated this particular drug; how it should be banned due to its addictive nature and how she was not going to prescribe it and that if I had problems with anxiety that I should see a therapist. All I could think was "No, she did not just say that".

I went onto explain that I have had more therapy than Carter ever had pills and I needed the drug for when my anxiety was just too great, which might be once or twice every month or so. It did not matter, I was not getting the drug and when I quizzed her on why Stephen got the same drug for the same problem, she refused to discuss the subject any further. I just sat there dumbfounded at what I had just heard. I thought she was allowing her prejudice to cloud her judgment and she was dismissing my needs because of that prejudice.

She had broken our partnership by making a unilateral decision without explaining her reasons or even taking my feelings into account. Granted she was my doctor, but she did not know my full history or apparently me. I felt like she was accusing me of abusing drugs, just because I asked for mild sedative. But no matter what her reasons, the damage had been done. She lost my trust and in doing so she has lost me as a patient. I deserve to be treat fairly and honestly and not to be told, "Because I said so". I did not survive the past 21 years by accepting such nonsense from my doctor and I have no intention of starting now.

So the cycle continues and I am returning to my previous HIV specialist Jim, as he has just joined another practice. Yes it will be a drive, but good care is hard to come by and I am excited about returning to him, because I have treatment issues that I want to address. I look forward to seeing him again as I really like him as a person, and I trust his ability as a doctor. I like the fact, that even in the money-driven health industry that he still takes the time to share information and I'm dying to know where he and his partner have been, since I last saw him. But I also know that his practice will change, just like the others have and as he churns through more patients, I will get less time with him at each visit. Even so, I just hope I can keep him longer than the last time.

The reason I shared this rather convoluted tale is that I am becoming increasingly concerned about the quality of HIV care in the US. Or more importantly, the impact of medical economics on how health care is administered. Florida has the 3rd largest HIV population in the US, but our HIV doctors are being run off. Malpractice insurance rates are triple what they were just 3 years ago and my doctor pays $150,000 a year for such insurance. How he is expected to pay this becomes exceedingly difficult, as reimbursement rates have steadily declined during the same period. So he needs to see more patients in less time. The factory concept expanded. And more patients in less time, equal less time with each patient, which comes at a time when HIV therapy is becoming even more complex.

It's become necessary for us, as patients, to monitor our health and treatment, even more closely than before. Not only do you need to keep up with the latest drugs and treatments, you also need to become very adept at navigating an increasingly confusing, complex maze of treatment options. This also concerns me, because while I might be adept at navigating this maze, what about those people who's health does not allow them to keep current on HIV news, or worse yet, lack the ability to access the care they so desperately need? Gone also, are the days when I could get "one-stop" health care and instead I must gallivant across my county to get this test here or that screening there. I have no less than 4 doctors and even have to use two pharmacies to get my meds. One for the drugs provided through Ryan White and the second for everything that Ryan White does not cover. It seems that accessing health care has become a gauntlet and few of the people, with the ability to alter the system, seem concerned enough to affect change.

If you need care for HIV in the new millennium, you better be up on your medical knowledge, as well as knowing how to work the system. That is why case mangers are so important to our care, because they can navigate the system with you. But cuts in funding for case management force many agencies to limit their caseloads and so more and more pos people are being left to fend for themselves. Surely you remember how together you were when you were first diagnosed, so how can they expect the newly diagnosed to even begin to identify, let alone navigate this gauntlet of health care? As if becoming positive is not traumatic enough, many are now thrown to the wolves to fend for their own care. Sadly, I don't see any end to this decreasing level of health care.

HIV budgets at both the state and federal levels have been level-funded for years. Although the number of infections continues to increase, the money is just not there for their treatment and so more and more patients are going without adequate care. And given this new reality, it becomes paramount that each of us become our own best advocate. Not only do you need to keep up on the latest treatments, you might also need to make some noise to get them.

Gone are the days of the community clinics, where you felt part of a family, had as much time with your doctor as you needed and even became close friends with the care givers. Medicine in the new Millennium, while breath taking in scope and ability has been reduced to almost commodity status. Just to survive, the clinics, doctors and hospitals are forced to process as many patients as possible, just to keep their doors open. The humanity of medicine seems to be draining away, because the hands of economics have gained a stranglehold on the medical profession and there seems to be little chance of that changing.