Bay Area Reporter - May 18, 2001
Matt Sharp, Survive AIDS Writers Pool

Today, most care providers who treat a larger percentage of persons with HIV have become specialists of sorts due to the overwhelming and constantly changing treatment paradigm. These are specialists not even recognized by medical boards, government institutions, and the insurance industry. Having said that, knowing and understanding how to treat the disease has even become debatable by the experts who have tried to standardize guidelines for the treatment and care of people with HIV.

Those specialists cannot even agree on standardization but only recommend certain treatment requirements for stages of the disease. The field of HIV medicine is so complex because we know now how individual HIV treatment is and understand that it is in constant fluctuation. Even with the guidelines, doctors with years of experience and their own knowledge in the field are at a loss. The best doctors will realize the individuality of HIV treatment.

I asked around and was referred to three different doctors, each with their own qualities and perspectives. Most of them had HIV experience but approached care differently. One was a research doctor at a local university. Another had a private practice with more of a "bedside manner," and a third doctor was very current with treatment trends and treated aggressively, while the other physician treated based on his own experience in his HIV practice. The combination of the three of them would make a great doctor, but unfortunately my insurance would only cover the cost of one primary care physician. I had to make a choice.

Patients today are mostly knowledgeable in HIV, not only because of advocacy efforts over the years, but as a necessity due to the ongoing changes and discoveries in AIDS research. We've had to keep up with the current trends in order to stay alive. Sometimes that meant overseeing how our doctors prescribe medicine. But every patient is different and reacts differently to their care. As people with HIV are living longer and treatment of the disease becomes more complicated, it is especially important that the relationship, communication, and dialogue between the patient and the doctor be on par with each other. Long-term AIDS survivors know this better than most patients since they have had relationships with their doctors for several years. They have a broader understanding of their disease because they have dealt with it for years. They have educated themselves about their disease and have demanded the utmost care and appreciation.

Most patients place physicians on a pedestal and hold everything they say to be the bottom line without questions or interference.

Patients who receive the best care, however, are those that take an active role in their treatment, questioning and learning as much as they can about their disease. They use a "team" approach involving the physician, their staff, case managers, and other practitioners of alternative and holistic medicine. And they keep up as best they can with the barrage of HIV treatment information in AIDS newsletters, support groups, the Internet, and hotlines.

There are a few helpful hints that may help people with their doctors, and guide them to overall better care. As with everything in life you mostly have the right to choose your own doctor at any point of your illness. Where you reside or what insurance plan you have may, however, limit your options.

Remember that doctors work for you and are only human and do make mistakes. That is why it is so important to have a team approach to your care, where several people become involved and may catch mistakes or problems unnoticed by the primary physician. It is also important to be as aware as possible to what is happening in terms of diagnosis, blood values, prescriptions, and a plan for the future.

Does your doctor communicate well? Does he/she have good eye contact with you? Is it easy to reach your doctor when you have a question? Do they return your calls and messages in a timely manner? Do they spend the appropriate amount of time with you per visit? It is true that doctors are burdened with a staggering amount of paperwork these days but with managed care dictating the length of doctor visits, patients should leave the office feeling they have had their questions answered.

Do you ever actually see your doctor, or is it always the physician's assistant or nurse practitioner or intern that checks blood pressure, pulse, and temperature? Unless your health plan states otherwise, see the provider you are paying to see.

Do you have access to your medical records and blood test results? If you do, do you know how to interpret them?

Does your doctor have good "bedside manner"? Does he or she have a sense of humor? Do they give you a little hug at the end of the visit? (You may not want to hug them or vice versa!) Are they current with the literature and the available clinical trials you may be eligible for? Are they good strategists? Do they follow up well with test results and questions they promise to answer?

For me it was important to have a well-educated, current doctor who communicated well and made me feel as comfortable as possible upon every visit. A good doctor-patient relationship may be one of the most important in the life of a person with HIV. Even though there are difficulties in accessing the best doctors and the field is ever changing, as the patient, you are ultimately responsible for the quality of your care. It requires follow up and maintenance but you have to demand it.
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