Choosing a Healthcare Provider for HIV Treatment
If you are newly diagnosed with HIV infection, this may be a very difficult time for you. Many newly diagnosed HIV patients have severe bouts of depression and anxiety. They simply don't know where to turn or what they should do. This may lead to denial, procrastination, and avoidance. If you feel like this and have not taken steps to seek treatment, this understandable, but unfortunate behavior may be not only detrimental to your health and well being, but also may deny others the opportunity to be tested and treated or may lead to further spread of HIV through continuation of unsafe sex practices or needle sharing.
There are several decisions you have to make in order to be sure that you are doing what you can to:
- prevent the spread of HIV
- prevent the progression of your HIV disease to AIDS
- avoid getting sick or perhaps even dying
If you are engaging in high-risk behaviors, the first decision you need to make is to stop engaging in these behaviors, as they may endanger others and cause them to become infected. This means that you must not have unprotected sex (a condom or dental dam are required at all times to prevent direct contact) and, if you use intravenous drugs, you must not share needles with other people. The people with whom you have had sex or shared needles in the past may or may not already be infected. You should consider informing them yourself of their exposure to HIV, but if you are unable to do so, you should contact your doctor or the health department so that the people with whom you have had sex or shared needles can be informed anonymously and then get tested. If you have children, they may also need to be tested, but you can discuss this with your doctor as well.
Choosing a Healthcare Provider
This decision involves first assessing your healthcare options, gathering some information about providers, making a choice, and scheduling an appointment. Keep in mind that your contact with the healthcare provider you choose will be confidential and that your provider will not release information about you unless you tell him or her that it is all right. Remember, just because you visit one healthcare provider doesn't mean you have to stay with him or her. If you don't feel comfortable with that provider or you don't like him or her, then you should continue your search and go see another provider. If you are a part of an HMO, you may need to pick a doctor from the list of providers in your HMO or you may be referred to an HIV specialist by a primary-care doctor. Someone at your health plan should be able to provide you with information about how to find an HIV specialist so that you are able to have several choices.
The medical qualifications
Healthcare providers include physicians, physician's assistants, and nurse practitioners. Physicians have been to medical school, followed by a residency in internal medicine or family medicine, and in some cases, a fellowship in a subspecialty such as infectious disease. Nurse practitioners and physician's assistants have not been to medical school nor have they done a residency or fellowship, but they have received a substantial amount of education and training and in some states, they are allowed to treat patients without physician supervision.
Some people feel more comfortable with a doctor, while others feel more comfortable with a nurse practitioner or physician's assistant. You can receive excellent care from any of these healthcare providers so long as he or she is well versed in treating HIV disease and has adequate experience. This is an important attribute to remember, as several studies have shown that physician experience plays a major role in how well a person with HIV disease does, including whether they get sick and how well they take their medications.
Also, it is important to keep in mind that when you choose a healthcare provider you are also choosing that person's support staff and system. Since there are a number of social issues and questions associated with HIV disease, you want to make sure that the doctor has someone on staff or someone to whom he or she can easily refer you who can help you take care of insurance and billing issues, drug or alcohol problems, disclosure issues, and other concerns that patients with HIV disease frequently must confront. These issues are complex and frequently require expert assistance from a very knowledgeable person. You are going to have enough to deal with. You should not have to be constantly struggling to get the benefits and help that you need.
Getting the provider you want
Since you are unlikely to know many healthcare providers, one of the biggest questions you might have is, "How do I find the healthcare provider that I want?" You can start by asking relatives and friends, especially those who are HIV infection. If your family and friends do not yet know about your HIV infection, before approaching them, you should consider whether or not you want them to know. If you don't, there are other ways to find a doctor. You can call a local medical society or a local patient advocacy/support group. For example, you could call a Gay Men's Health Crisis center in your area or a methadone maintenance clinic. You could also call a local hospital. They may be able to provide you with a list of the experienced healthcare providers in your area. Additionally, you could ask your current healthcare provider to refer you to an HIV specialist (i.e., someone who treats a significant number of HIV-infected patients).
If you cannot find a provider with adequate experience in your city, consider contacting services in larger cities that may be nearby. Some of my patients travel quite a distance to see me because they could not find anyone locally with whom they were happy and our center provides not only excellent healthcare, but also provides them with access to new treatment studies and the support services HIV patients need.
Once you have identified a potential healthcare provider, consider calling their office and getting information about:
- the number of patients they treat
- the number of years they've been involved with HIV
- their educational and training background
- any support staff they can provide for you (e.g., social worker, psychiatrist, nutritionist)
Scheduling an appointment
If you are satisfied with the preliminary information, then schedule an appointment for an initial visit. If not, keep looking. I can assure you that with a little effort you will be able to find an excellent provider who will be able to meet your needs.
The Initial Visit
The initial visit can be frightening and intimidating, but you should keep in mind that the entire purpose of the visit is to provide you with the medical and other help you need to control HIV infection. You may not feel very comfortable during this visit and a lot of things will be happening, but you should try to assess whether you will eventually be comfortable in this setting, receive the support and services you need, and have confidence and trust in your healthcare provider.
Your healthcare provider and his or her staff will guide you through the steps involved in the initial visit. This generally starts with a lot of paperwork, with which the staff can help you. This process will be smoother if you bring any insurance information or past healthcare records you might have with you. It will also help if you are on time or even a little early so that you have plenty of time and do not feel pressured or rushed.
Meeting with the healthcare provider
Usually, after the initial paperwork is completed you will meet your healthcare provider. He or she will often begin the meeting by obtaining a thorough medical history and doing a physical examination. This might include having blood drawn and sent to a laboratory for testing. He or she will provide you with a basic education and information regarding HIV disease, including the basic disease process and treatment options that are available. It is important that you tell your provider about any medical problems you have had in the past and if you are allergic to any medications.
Making a custom-fit treatment plan
You should use this time to discuss your treatment objectives with the provider. Every patient has different goals and ideas about their treatment. You should talk about these with your doctor and make sure that he or she feels comfortable with them and is not using a "cookie-cutter" approach, where every patient must do the same thing (for example, take antiretrovirals). Your doctor should show flexibility and adjust to your needs, while at the same time providing you with the education you need to make informed and knowledgeable decisions.
If you have not previously had a CD4+ lymphocyte and HIV viral load performed, the provider may not be able to provide any specific treatment details at this point, as he or she does not know how the virus has affected your body. Still, the provider should lay out the general approach that will be taken to control your HIV disease and to prevent opportunistic infections. You should feel free to ask questions and, if possible, to get written materials you can take home to read. If you already have strong feeling or beliefs about certain treatment options, you should specifically discuss these with your provider.
During this visit you should feel free to ask the provider any questions you may have about his or her medical background, and if these questions are met with hostility, you should be wary of this doctor. Your relationship with your healthcare provider must be based on trust. You will need to develop a rapport with your provider that allows you to feel confident about his or her medical advice, and feel confident making the important decisions about your own care.
The provider may also take this opportunity to discuss disclosure issues (e.g., telling family members, telling others who might be at risk) and the need for you to seek additional help regarding depression, substance abuse, or other issues which may affect your health and healthcare. Again, this is a chance for you to share, with complete confidentiality, the concerns you have and problems you are experiencing. To have a trusting and supportive relationship with your provider is essential to maintaining your good health and you should take advantage of this rare opportunity to get things off your chest and get the help you need.
Choosing a healthcare provider to help you treat your HIV disease can be an overwhelming decision. However, it is also a very important one. Take the time to research and find the right provider and support staff for you. It will help you as you learn to manage your HIV disease and keep you healthy.
Brian Boyle, MD, JD, is an Attending Physician at the New York Presbyterian Hospital-Weill Cornell Medical Center and Assistant Professor of Medicine in the Department of International Medicine and Infectious Diseases at Weill Medical College of Cornell University.