MORE ON CHOOSING AND TALKING WITH YOUR HIV PROVIDER

There is much more to your relationship with your HIV specialist than medical appointments, discussing lab results, and medication prescriptions. Your partnership with your provider is your #1 "weapon" in your fight with HIV. In order to remain healthy, you will need to have trust and confidence in your provider. The decisions that you make about your care are very important ones.

Approach your initial meeting with the provider as if you are "interviewing" him or her for the position. Ask questions about his or her background, experience, and approach to treatment (conservative, "canned" approach vs. willingness to make a "custom" treatment plan with you). You should feel that the provider is non-judgemental and willing to listen to and discuss your treatment ideas and goals with you. The provider's role is to educate you so that together you can make informed and knowledgeable decisions, and he or she should be flexible enough to listen to and adjust to your needs. If your questions are met with resistance or hostility, this is a sign that you need to be wary and seriously consider if you will be able to establish a trusting, therapeutic relationship with this person.

Be honest with the provider. In HIV care, the provider needs to really know you as a person. All aspects of your lifestyle are important to your care. Be honest about sexual practices, the use of alcohol and recreational drugs, daily habits, your support system (family, friends, domestic partners), how you feel about having HIV and taking medications, and about any other treatments that you are using or are considering (such as vitamins, herbs, supplements, acupuncture, massage, etc.). If you feel that the provider is judgemental and that you have to hold back certain information or "tell them what they want to hear", then you need to continue searching for the right provider. You need to be totally honest with your provider and be comfortable asking him or her questions, even if they are personal and embarrassing to you.

Consider a situation where you might be having trouble taking your HIV medications (maybe you are having side effects, have a new work schedule, or are dealing with stressful events in your life). You need to be able to openly and honestly discuss these issues with your provider, instead of saying what you think they want to hear. In reality, a good HIV specialist wants to hear what is really going on with you so that they can help you to stick to your treatment plan or develop a new plan, remain health, and prevent complications.

Do not be afraid to ask questions and take notes. Before your appointments, write down your questions and concerns, and take notes so that you can remember what you are told. It is OK to ask for clarification of unclear or confusing explanations or medical terms - Keep asking until you understand. The same thing goes for a provider who speaks with an accent; ask for clarification until you understand what is being said. The provider should be willing and able to explain things so that you can understand them. If you have questions about something that you have heard from a friend, read, seen on the Internet or TV, ask your provider about them. It may also help you to bring a friend, family member, or partner with you to your appointments to help you remember what was discussed.

In my own practice with HIV positive patients, I have had many, many patients approach the first several visits as a "trial". I do not consider this to be threatening or insulting in any way. In fact, it is to be commended, because it shows that the patient is very willing to be an active part of his healthcare. I feel that my willingness to spend extra time with patients and really get to know them as people, and get to know what is going on in their lives, has helped me to provide better care to them. I remember one young man who was moving to my city from the west coast. He came in with his mother and sister for a "tour" of the office. It was clear from the beginning that he was considering 3 different sites for his HIV care, and that he was "interviewing" me. The meeting lasted for over an hour, and he asked most of the questions that I have brought up in this post. My willingness to listen to him and to discuss what was important to him is what won him over, and he initiated and continued his care with me. It turns out that he had a bad experience with a provider in the past regarding starting HIV medications. His CD4 cell count (T-Cells) had been in the 190-250 range for several years, and his provider was insisting that he must start medications. The patient tried to express his concerns, and was pretty much told what he "had to to". The provider did not listen to the patient... My approach was different. I discussed the progression of HIV disease with him, the current Department of Health and Human Services, and gave him the information that he needed to make an informed decision. He discussed his feelings and opinions with me. He felt well, led an active life (work, volunteer activities, social life), was in a monogamous, stable relationship with his domestic partner, ate right, exercised regularly, got plenty of sleep, and did not smoke, drink alcohol, or use recreational drugs. He was very knowledgeable about the side effects and long-term toxicities of the medications, and did not want to take them. We agreed that he was making a reasonable, informed choice, and that we would briefly discuss the issue on every visit, and that he would consider taking medications only if he became symptomatic of HIV disease (began not to feel well). This approach encouraged total honesty from the patient, and it helped me to provide the best care for him. The bottom line is that you and your HIV provider must work together as a team to fight your HIV. You need to be comfortable with each other and with each other's approach
to dealing with your treatment. This is a decision that you are making for life - so make it a good one!