Every patient I treat is an individual. I try to remember that your previous experiences with the medical profession may have been minimal to non-existent. When you come through the Center's doors, you arrive with a unique set of experiences with health care (the good and the bad): varying degrees of knowledge about HIV infection and the treatments you may already be taking, and your own approach to dealing (or, sometimes, not dealing) with your health issues.
HIV is unlike any other disease treated today. Social stigma against people living with HIV still exists in many communities, and many patients have almost no knowledge of treatment advances. This includes both the "good" advances (highly effective therapies that have moved HIV infection into a chronic care model) and the "not so good" advances (daily pill taking, regular blood draws and medical visits, side effects, etc.).
It is important to remember that you, as the patient, are the leader of your individualized healthcare team that includes the medical practitioner, nurse, case manager, and other support staff. The staff assesses your medical and psychosocial status and, based upon their knowledge and experience, makes recommendations for treatment. However, you always make the final decision on any treatment course. This is especially important if you feel that HIV has taken control of your life -- understand that you are still in charge.
Also, during this visit, I explain the basic blood tests that we will monitor together and encourage questions. At our clinic, every patient receives a packet of information, including brochures on the Center's services and information on HIV infection, blood testing, and others. ACRIA has some excellent patient information booklets we use that provide simple but complete information on HIV care issues -- visit their website or call them.
We all have trouble remembering every question we want to ask our healthcare practitioner, so I encourage patients to go through the information in the packet at their leisure and to write down their questions so that they can ask them at their first clinical visit. If you cannot bring materials home because your family or housemates may not yet know of your diagnosis, I suggest reading the materials while you are in the clinic. Most clinics have HIV information booklets and magazines available in the patient waiting areas (POZ, HIV Plus, etc.) for everyone to read. For those patients that have literacy issues, I refer them to support groups and/or individual sessions with support staff.
At our clinic, patients are also given a Pocket Health Journal. This combination datebook and treatment guide provides more information on care issues as well as a place to keep a medication list and to track T-cell and viral load measurements. Tracking of T-cells and viral load is an excellent way for you to keep an active role in your medical treatment.
I want to hear what you think about your treatment plan and your quality of life. Also, I never underestimate the value of other care team members in providing you with information. Visits to nurses, case managers, and social workers are all part of the care process where you can get information. Some staff might have a closer relationship with you or perhaps can speak your language more fluently, and they can help you get more informed.
Finally, our responsibility as medical practitioners is to encourage open communication with you and to have a genuine interest and regard for your well-being. It is important for you to know that you are more than the "sum of your laboratory values and physical assessment." Demonstrating that I care for my patients as individuals goes a long way toward making every visit an educational opportunity.
Remember, ask questions and continue to educate yourself about HIV. You are in control.
In addition to his work at the Ryan Center, Paul Stabile, P.A.-C. is a member of the New York State Department of Health, HIV Quality of Care Advisory Committee and a former member of the New York City HIV Health & Human Services Planning Council (Ryan White Title I).