How to Select the Right HIV Specialist

Finding a healthcare provider is the first and most important step you will take after being diagnosed with HIV. Despite ever simpler drug regimens, HIV remains a dynamic disease that requires specially trained medical professionals able to deliver the high levels of care specific to an individual's health needs.

So what are the qualities of a good HIV specialist? Are there ways to ascertain this or tools one can use to narrow the search?

Questions to Ask

When meeting with a healthcare provider for the time, you should take the opportunity to ask all the questions that need to be asked. Among them:

• How large is your HIV practice?
• Does HIV represent the focus of the work you do?
• What services does your clinic offer?
• How do you like working with patients? Do you welcome input and discussion?
• How far in advance do I need to make an appointment?
• Will I see you every visit, even routine follow-ups? Or just an assistant?
• How do I get my routine blood results? Do I call or do you call me?
• What is your experience working with patients of my identity or cultural background?
• If I need to call you for a genuine medical emergency, what are the procedures?
• Do you accept Medicaid or Medicare?

You could—and should—follow up by checking up on the practitioner's credentials and medical history. A number of online services can help, including Docinfo (a website managed by the Federation of State Medical Boards).

Your Rights as an HIV Patient

Selecting the best healthcare provider requires you to understand what rights you are entitled to as a patient. It starts by knowing the HIV Patient Bill of Rights, which outlines in 17 steps the kind of care and treatment you should receive as a person living with HIV.

HIV Patient Bill of Rights

The person with HIV has the right to considerate and respectful care regardless of race, ethnicity, national origin, religion, age, sexual orientation, gender or payment source.

1. The person with HIV has the right to, and is encouraged to, obtain current and understandable information concerning diagnosis, treatment, and prognosis.
2. The person with HIV has the right to know the identities of the healthcare providers involved in their care, including those who are students, residents, or other trainees.
3. The person with HIV has the right to work with healthcare providers in establishing their plan of care, including the refusal of a recommended treatment, without the fear of reprisal or discrimination.
4. The person living with HIV has the right to privacy.
5. The person living with HIV has the right to expect that all records and communication are treated as confidential except in the case of abuse.
6. The person living with HIV has the right to review their own medical records and request copies of them.
7. The person living with HIV has the right to expect that an advance directive (such as a living will or healthcare power of attorney) will be honored by the medical staff.
8. The person living with HIV has the right to receive timely notice and explanation of changes in fees or billing practices.
9. The person living with HIV has the right to expect an appropriate amount of time during their medical visit to discuss their concerns and questions.
10. The person living with HIV has the right to expect that their medical caregivers will follow universal precautions.
11. The person living with HIV has the right to voice their concerns, complaints, and questions about care and expect a timely response.
12. The person living with HIV has the right to expect that the medical caregivers will give the necessary health services to the best of their ability. If a transfer of care is recommended, they should be informed of the benefits and alternatives.
13. The person living with HIV has the right to know the relationships their medical caregivers have with outside parties (such as healthcare providers or insurers) that may influence treatment and care.
14. The person living with HIV has the right to be told of realistic care alternatives when the current treatment is no longer working.
15. The person living with HIV has the right to expect reasonable assistance to overcome language (including limited English proficiency), cultural, physical, or communication barriers.
16. The person living with HIV has the right to avoid lengthy delays in seeing medical providers; when delays occur, they should expect an explanation of why they occurred and, if appropriate, an apology.

Experts agree that in order to get the best HIV care, people living with the virus should get their medical care from an HIV specialist. 

What Makes an HIV Specialist?

There are guidelines and requirements that have to be met in order to be considered an HIV specialist. The American Academy of HIV Medicine (AAHIVM) defines the HIV specialist as meeting these standard criteria for HIV knowledge measurement:

1. Experience—The specialist must maintain state licensure and provide direct, on-going, continuous care for at least 20 HIV patients over the past two years. 
2. Education—The specialist must complete at least 45 credits of HIV-related continuing medical education (CME) every two years or must have completed an HIV-related or fellowship in the last two years.
3. External validation—A specialist must be recognized by an external credentialing entity, such as the AAHIVM. This is accomplished by passing an HIV Medicine Credentialing Exam.
4. Licensure—A specialist must maintain a current state MD or DO medical license.

When looking for an HIV specialist, make sure they meet these criteria. If so, your healthcare provider can be considered an HIV specialist. 

Benefits of an HIV Specialist

There are distinct benefits to getting your HIV care from an HIV specialist. These include:

• Knowledge & experience—These go together. HIV specialists who treat dozens or hundreds of HIV-positive people have much more experience recognizing symptoms, addressing complications, and developing treatment regimens than a general practitioner taking care of a few HIV patients each year.
• Communication & understanding—Since HIV impacts the whole person, both physical and emotional, those who care for HIV-positive people need to be able to communicate with their patients and understand the way HIV impacts their lives. HIV specialists are adept at both because of the number of HIV patients they treat and the experience they have gained by taking care of them.
• The cutting edge of HIV medicine—To be an HIV specialist, a healthcare provider must keep current with the rapid changes in HIV science. Through continuing education, journals, and conferences, HIV specialists are continuously learning how to best treat HIV. For instance, treatment modalities thought to be helpful may in the future be no longer recommended. HIV specialists would know this immediately, whereas a general practitioner may not hear about such treatment changes until later.

Finding an HIV Specialist

HIV specialists can be found in most large cities. And HIV specialists often serve rural communities as well. Here are some ways that will help you find one:

• Contact large hospitals in your area, especially ones that are affiliated with a university. HIV specialists can usually be found in the infectious disease departments of those hospitals. Please note that not all infectious disease specialists are necessarily HIV specialists. When making the call, make sure you request an HIV specialist.
• Speak with the local HIV/AIDS service agencies in your area. They will have a list of local HIV specialists and, in most cases, will help you get connected with one of them.
• Word of mouth is a good source when looking for an HIV specialist. Listen to others who are living with HIV. They may be able to recommend a specialist.