Finding the right doctor and making the most out of your first appointment.
So you’ve just tested HIV positive. The singular most important thing you can do is get into treatment right away. Finding the right doctor and good communication with your doctor is vital to you obtaining optimal treatment and care.
So where do you start? If you do not know an HIV doctor, there are several ways you can begin your search for the right doctor:
• Ask a friend or people online (Facebook, Yahoo/Google Groups, forums on HIV websites) for suggestions in your area.
• If you belong to an HMO ask for a referral.
• If there is a large hospital nearby with a good reputation, call their infectious disease clinic.
• Ask for a recommendation at your local AIDS service organization.
• Ask your regular doctor for a referral.
You may have to interview a few doctors before you find the right one for you. Don’t be discouraged and settle for a doctor who is not the right fit. You should feel comfortable talking to your doctor, not feel judged answering his/her questions honestly and be able to ask questions without feeling rushed or as if you are annoying them.
Don’t expect to be able to remember everything you want to ask or discuss during your appointment. Write your questions down in a book as you think of them and bring the book with you. During your appointment use the same book to write down important instructions, definitions and advice the doctor gives you during the visit as well as the answers provided to your questions.
You can also use your book to write down how you feel daily and any problems or concerns you may be having. It will be a great resource in determining trends in your health.
Below are some important questions to ask your doctor. Print or write down questions from this list to ask your doctor in addition to others you may have.
• Are you an HIV Specialist?
• Will you be able to recommend nearby specialists for other health related problems I may have?
• How do you keep up with the latest HIV research?
• What is the average wait time for appointments? How long does it usually take for you to return phone calls?
• What are my T cells and viral load, what do they mean and how often should they be tested? Will you give me a genotype (drug resistance) test?
• Are there any vaccinations I should have?
• What ways should I change my day-to-day life and how can you help me with this?
• Do I need to be on HIV medication?
• What regimens would you recommend?
• What second and third regimens would you prescribe if I became resistant to the first one?
• What side effects can I expect from anti-HIV treatment? How can you help me deal with these side effects?
• Does this medication interact with any other medications I’m taking?
• Does it matter if it is taken with food, or on an empty stomach?
• Are you familiar with the issues that specifically effect women with HIV?
For additional information on these questions please continue reading.
Are you an HIV Specialist?
People living with HIV need to see a doctor who specializes in HIV. A general practitioner will not have the knowledge and experience he/she needs to provide you with the best care possible. HIV doctors are called ‘infectious disease (I.D.) doctors’. However not all I.D. doctors are HIV specialists. When calling to schedule your first appointment, ask the receptionist for an HIV specialist.
Will you be able to recommend nearby specialists for other health related problems I may have? What hospital are you affiliated with?
Although it is best to have a primary care physician as well as an HIV specialist, many people utilize their HIV doctor as their primary care physician. Over the course of time, your doctor will need to recommend various types of specialists to diagnosis and treat other illnesses. Make sure your physician is able to do this and is connected to a well respected hospital.
How do you keep up with the latest HIV research?
HIV research occurs constantly all over the world. It is important for doctors to keep up on the latest data, medications, clinical trials etc. Ask your doctor how they keep updated. Some physicians read medical journals, spend time researching on line, or attend important HIV conferences. Some physicians attend AIDS Education and Training Center (AETC) forums. Others may take continuing medical education (CME’s) courses on line. Many doctors do not like to be questioned but remember that you have a right as a patient to know if your doctor keeps updated on cutting edge information. Try to ask this question as nicely as possible none the less.
What is the average wait time for appointments?
How long does it usually take for you to return phone calls? It can take up to or over a month to secure an appointment with some doctors. If you are relatively healthy this may not be an issue for you. If you think there may be times when you will need to see your doctor earlier than scheduled, the length of time it takes to schedule an appointment could be an important factor. How long is the usual wait time once you arrive for your appointment? If you have a question or emergency will you be able to reach your doctor quickly via telephone or email?
What are my T cells and viral load, what do they mean and how often should they be tested? Will you give me a genotype (drug resistance) test?
CD4 and viral load tests are two of the gold standard ways of measuring how you are doing and what HIV is up to in your body. Whether a person has been on HIV treatment before or not, drug resistance testing is recommended. Some people may be infected with strains of HIV that are already resistant to certain drugs.
Are there any vaccinations I should have?
It is important to discuss with your doctor whether and when you should have shots such as the pneumonia vaccine, the flu shot, Hepatitis A and B vaccines and the human papillomavirus (HPV) vaccination.
In what ways should I change my day-to-day life and how can you help me with this? To be as healthy as possible many people need to make alterations to their lifestyle i.e. quitting smoking, quitting recreational drugs, drinking less alcohol, exercising more and eating healthier. Talk to your doctor about what changes you can make and if he/she or their office/clinic will provide you with assistance or referrals.
Do I need to be on HIV medication?
The large majority of people will need to go on HIV medication at some point. The possible exception to this may be elite controllers/HIV controllers who are able to suppress HIV without medication. Research is still ongoing to determine the best course of treatment for these individuals.
The National Institute of Health has issued specific guidelines on when to start treatment. It is strongly recommended that all people with a CD4 count below 350 begin HIV treatment immediately as well as those with 350 – 500 CD4 cells who are at risk of sexually transmitting HIV or transmitting HIV through other high risk behavior. It is moderately recommended that those with CD4 counts above 500 begin therapy. Immediate treatment is also strongly recommended for women who are pregnant, people with an AIDS defining illness, those who are co-infected with hepatitis B or have peripheral neuropathy. There is also mounting evidence that early treatment may have long term benefits. The most important factor in beginning therapy is that you are able and willing to take each medication as prescribed. If you don’t think you will be able to be consistently adherent, you will need to explain this to your doctor.
For more information on the NIH Treatment Guidelines: http://aidsinfo.nih.gov/guidelines#
Recommendations can vary from country to country. For Antiretroviral treatment, opportunistic infections and HIV testing guidelines for various countries please see: http://www.who.int/hiv/pub/national_guidelines/en/index.html
What drug regimen would you recommend?
After finding the right doctor, the second most important decision you will make is what HIV antiviral regimen to go on. Do research and write everything down. Try to read up on as many of the HIV medications as you can. Think about which side effects you could deal with if you had to and which ones are completely unacceptable.
What second and third regimens would you prescribe if I became resistant to the first one?
HIV mutates both naturally and from missing doses which can cause you to become resistant to the medications you are on. It is likely that you will eventually have to switch regimens one or more times throughout the coming years. Make sure your doctor has a full treatment plan in mind for you and knows what second and third regimens he would put you on in case you become resistant to your first regimen or the side effects are too much for you.
What side effects can I expect from anti-HIV treatment? How can you help me deal with these side effects? Many HIV medications have side effects which can range from moderate to severe. Know what to expect. Discuss all the possible reactions you may have to each regimen your doctor recommends. Some side effects are tolerable for some people and not for others. Know what to expect and be prepared. Ask your doctor if he will be willing and available to talk to you and dispense prescriptions and/or advice to help handle possible side effects as they occur. Also discuss how severe the side effects should be before calling your doctor.
Can you provide me with information on how to stay adherent to my drug regimen?
Taking your pills each time, on time, is vitally important to avoid drug resistance which could render your drug regimen ineffective. There has been much research on ways to help you stay adherent to your medication. Ask your doctor to provide you with information or refer you to someone who can show you strategies that will help.
Does this medication interact with any other medications I’m taking?
Some HIV medications can interact with other medications such as certain TB medications, methadone and some herbs. Make sure you provide your doctor with a list of medications you are on.
Does it matter if it is taken with food, or on an empty stomach?
Some HIV medications have strict requirements. Make sure that you fully understand and are able to adhere to the proper administration of your drug regimen.
Are you familiar with the issues that specifically effect women with HIV?
There are many specific conditions that HIV positive women are more susceptible to than HIV negative women such as cervical cancer, HPV, pelvic inflammatory disease (PID) and yeast infections. Make sure your doctor is familiar with the symptoms and can recommend you to a specialist when needed and will include yearly pelvic exams and pap smears in your treatment plan.