The quality of the relationship with your doctor—including the amount of information shared and how well he or she hears you—is critical to long and healthy living with HIV.
After conquering the task of finding an HIV specialist, the next step is to develop a strong relationship with your health care provider. Like any other relationship, this requires a bit of TLC on both of your parts and should be based on openness and good communication. “There needs to be a certain level of comfort and trust in order for the patient to get quality medical care,” says Jennifer Herman-Benalt, LMSW, program coordinator for the Women’s Project at Beth Israel Medical Center in New York City.
Communication with health care providers is very much a two-way street. Just as your care provider will have expectations of you, you should also be honest with your provider about questions or concerns you have about your care. “Patients need to be their own advocates,” Herman-Benalt says.
What’s Your Story? It’s crucial for your health care provider to know your medical history, such as previous surgeries or hospitalizations, history of mental illness, other illnesses you have or medications you’re using. “We now deal not only with opportunistic infections and the management of HIV, but also the broad effects of the virus and medications on many parts of the body,” says M. Keith Rawlings, MD, medical director of AIDS Arms Inc./Peabody Health Center in Dallas. A complete medical history, Rawlings explains, will allow your health care provider to make the best HIV treatment and care decisions based on any other challenges you might face.
In addition, tell your care provider about your family’s medical history—such as relatives with heart disease, diabetes and other health problems—that can raise your own chances of certain diseases, especially those that can be exacerbated by HIV and its treatment. “Physicians want to be able to take all these things into account when making recommendations,” Rawlings says.
Of course, this can be a lot of information to recall during an all-too-brief meeting with your provider, so write down as much information as you can before your first or next appointment and bring it with you.
The Whole Truth The subjects that you feel most uncomfortable talking about might end up being the very factors that affect your HIV care the most—issues like drug use, cigarette smoking, depression and sexual behaviors, to name a few. It’s essential that your health care provider know about these so that he or she can monitor certain aspects of your health more closely and make treatment decisions tailored to your needs.
“If you tell me one thing and something else is the case,” Rawlings says, “it will be hard for me to accurately intervene or make assessments.” At the same time, you shouldn’t feel judged by your health care provider. If you do, remind him or her that it’s difficult being honest if you’re being made to feel ashamed.
It’s About Trust You must be willing to trust your doctor’s medical suggestions and opinions. As Rawlings points out, “Coming in with a piece of paper that you got from your cousin’s brother’s friend off the Internet to explain why you’re going to supersede what your health care provider tells you, is probably not one of the better ways to establish the kind of relationship you want to have with your provider.”
However, you’re not a silent partner in these decisions—if you have questions, concerns or thoughts of your own when it comes to your care and treatment, don’t hesitate to speak up.
It Takes a Team In the event your primary care provider isn’t available to answer questions or explain something, don’t hesitate to contact other members of your health care team. “For example,” Rawlings says, “side effects of a new medication may be more appropriately discussed with your pharmacist because the pharmacist may have comprehensive information.” Other professionals to turn to include a nurse in your clinic or doctor’s office or your social worker.
No Two Patients Are Alike People living with HIV are a diverse group, each with different histories and medical needs. In turn, there’s really no one way to monitor your health or treat your HIV infection.
For example, while a once-a-day treatment regimen might be good for some people with HIV, twice-daily treatment might be necessary for others. “While people like to have convenience,” Rawlings says, “it doesn’t necessarily mean that the easiest-possible drug regimen is the most appropriate thing for them.” Working closely with your health care provider is the surest way for you both to make decisions that are best for you.
What Makes a Good Patient Great? Erika Schwartz, MD, a hormone expert in New York City who sees patients from all over the world, explains her views on what people living with HIV should do to help foster an excellent provider-patient relationship.
Educate Yourself “It’s very important to be aware of what’s going on inside your body and be able to explain it,” Schwartz says. “Don’t get carried away with fear and self-diagnosis; your providers can help if you tell them your health concerns.”
Be a Good Reporter Bring a list of health issues that you’ve experienced to your next doctor’s appointment. “Don’t do it last minute, as you’re running to the doctor’s office,” she advises. “Do it at the end of the day, in a notebook or your iPhone.” Your health care provider can’t work up a diagnosis or offer treatment if he or she doesn’t know what’s bothering you.
Call In “If you and your doctor work together as a team, and you trust each other, you can do a lot more stuff like telephone and online consultations,” Schwartz says. While these might be good communication alternatives for basic questions, don’t hesitate to make an appointment to discuss new symptoms, side effects or big changes in your life.
You’re Fired! If you’re not communicating effectively with your provider and neither of you seems to respect the other, don’t be afraid to cut the cord and find another HIV specialist. Schwartz says, “People are afraid to fire their doctors, and they get killed, literally, because they don’t.”
What Makes a Good Doctor Great? HIV-positive Richard Cordova III, a health educator at the Center of Halsted in Chicago, shares the qualities he looks for in a health care provider.
In for the Long Haul “Being HIV positive is not a death sentence anymore. It is a chronic illness that has to be managed,” Cordova says. “How you manage it requires a good ongoing relationship between you and your provider.”
Don’t Hold Back When it comes to your HIV and overall health, your provider shouldn’t beat around the bush. Cordova admires a doctor “who is in my face and doesn’t let things fly under the radar.”
Provide Answers “I’ve always gotten an answer [to my questions],” Cordova says. And if you don’t get an answer or explanation you understand, don’t be afraid to ask again.
Empathy While it’s good to have a provider who speaks his or her mind, there’s much to be said for compassion as well. “I get that they went to school for a long time, but I want someone who understands that I’m a human, that this is a lifelong illness and it can be challenging at times.”
A Team Player You’re every bit a part of your health care team as your provider. “My doctors definitely let me be involved in the process,” Cordova says. “At the end of the day, you can always refuse treatment, but certain things like a pneumonia vaccine or seasonal flu vaccine—you need to get those. Other things are definitely open to what I want as well.”
TALKING POINTS One of the greatest provider-patient communication obstacles is unfamiliarity with the terms used in HIV care. Here’s a quick review of the words you’ll be hearing a lot—and should know about as you begin chatting with an HIV specialist.
Acquired Immune Deficiency Syndrome (AIDS) Caused by HIV, AIDS means that the immune system has been damaged to the point that usually harmless infections can cause life-threatening diseases. Fortunately, an AIDS diagnosis is often avoidable or reversible with modern-day HIV medications.
Adherence This means following medical advice, notably taking your medications exactly as prescribed. The more doses you miss, the less adherent you are—and the more likely it is your HIV meds will stop working against HIV (see: Drug Resistance).
Antiretrovirals (ARVs) The term for any medication used to treat the virus. About two dozen ARVs, belonging to several different classes of drugs, are currently available. Turn to page 14 to learn more about ARVs and HIV treatment.
Drug Resistance Some people are infected with a strain of HIV that has genetic changes allowing it to resist the effects of certain ARVs. Other people have HIV that develops these changes, or mutations, while they’re on ARV treatment and may need to switch to newer drugs. Poor adherence is a leading—and totally avoidable—cause of drug resistance.
Human Immunodeficiency Virus (HIV) This virus causes AIDS and is a driving force behind a number of non-AIDS diseases. There are actually two types of HIV: HIV-1 and HIV-2. HIV-1 accounts for the vast majority of HIV cases in the United States. HIV-2 is more common in West Africa.
Lab Tests Every three to six months, you’ll have blood drawn for laboratory testing. The results of these tests will help you and your provider determine when to start treatment, how well your meds are working and if you’re experiencing side effects or other problems.