First Steps for HIV Care

Melanie Thompson, M.D. Apr 7, 2015
  • Getting an HIV diagnosis is the beginning of a journey that can feel overwhelming, and getting into medical care can feel doubly challenging. Many of us get our medical care by popping into urgent care or an emergency room when we are sick. But people with HIV need regular care to stay healthy. Did you know that you could live a normal life span with appropriate treatment? Here are some basics to smooth the path.

    Where Can I Find HIV Care? 

    In the U.S., where you receive care is largely determined by whether you qualify for the following benefits, or whether you have private insurance (and, specifically, which plan you have). Many AIDS Service Organizations (ASOs) provide care linkage assistance, and resources at the place where you got tested can help you link to care.

    • The Ryan White (RW) HIV/AIDS Program provides medical care and supportive services for low-income persons. Eligibility is mainly based upon income, city or county of residence, and eligibility for other sources of care. Usually RW serves people whose incomes are 300-400% of the Federal Poverty Guidelines. Eligibility limits differ locally. Find a RW clinic here.

    • Medicare provides care for persons age 65 or older or with a special disability. Medicaid eligibility differs by state, especially whether the state has expanded Medicaid to lower income adults as part of the Affordable Care Act (ACA; Obamacare). Contact your state Medicare office or Medicaid department to see if you qualify.

    • By the way, thanks to the ACA, you cannot be turned down or charged more for private insurance because of HIV or other illnesses. To obtain federal subsidies to help with premiums, you will need to purchase through the Healthcare.gov marketplace during the next open enrollment period, unless you qualify for a special enrollment period. Some states use RW funds to provide assistance with premiums, deductibles, and copays, even for non-ACA plans. Ask your state ADAP program.

    • If you are a veteran, contact the Veterans Affairs for help.

    How Do I Find an HIV Care Provider if I Have Insurance, Medicare or Medicaid? 

    If you already have a care provider, you will need to decide whether to stay with that person or look elsewhere. You cannot receive good medical care unless your doctor knows you have HIV, so you must see someone with whom you feel safe. Likewise, that person must have HIV expertise, or they should refer you to someone who does. An honest conversation is the best place to begin. If you are LGBTQ, you will want to find someone with whom you feel comfortable talking about your sexuality.

  • Check private insurance websites for docs on your plan (especially those who specialize in infectious diseases or internal medicine). Call the office to ask if the doctor frequently cares for people with HIV. If they waffle, move on. If you have Medicare or Medicaid, ask if they accept these programs. It’s OK to meet with several docs to determine who is right for you.

    If you need help buying insurance, find out how much your copay or coinsurance will be for HIV medicines. If you have a problem with insurance coverage for your HIV meds, report it here.

    What Should I Bring to My Appointment and What Should I Expect?

    You will definitely need personal identification (driver’s license or other picture ID) and your insurance or Medicare/Medicaid card. If you are going to a RW clinic, no citizenship or immigration documents are needed. Policies of other providers may vary, but you will primarily use immigration documents when applying for Medicaid or Medicare -- not on-site at the doctor's office.

    For RW providers, call to determine what else you need for eligibility. Usually, this includes proof of the following: 

    • HIV status.
    • Residency (utility bills are great).
    • Income: Federal Income Tax form 1040 or 1040EZ, or pay stubs.

    For your visit with the medical provider, bring these:

    • A copy of your HIV test and any other labs you have had done (T cells, viral load, STD testing, etc.). If you are re-establishing care, ask to have your old medical records transferred.
    • A list of your medical problems (past and present) and allergies.
    • A list of all medicines you take, prescription or otherwise (with doses).
    • A list of questions for your new care provider (write them down!).
      • How many HIV patients do you see?
      • What do I do in an emergency?
      • Do you admit to a hospital (which one)?
      • How do I get my meds refilled?
      • Do you have drug copay cards?
      • How often do you want to see me?

    Ask how long your visit with the care provider will be. If you have many issues, they will not all be addressed on the first visit. This is a marathon, not a sprint, so prioritize what is most important to you, and write those things down.

    Sadly, medical clinics do not run like bullet trains, so arrive at least 30 minutes before your first visit for paperwork, and then expect to wait. Most importantly, don’t give up! It gets easier once you are established, and you are building a valuable partnership that can last for many years.

    Melanie Thompson, M.D., is principal investigator of the AIDS Research Consortium of Atlanta, through which she has conducted over 400 studies of HIV, STDs and viral hepatitis. She is a member of the National Institutes of Health Office of AIDS Research Therapeutics Research Working Group and the Board of Directors of the HIV Medical Association. She chaired the Antiretroviral Guidelines Panel of the International Antiviral Society-USA (IAS-USA) from 2009 to 2013, and an international panel on Guidelines for Improving Entry Into and Retention in Care, and Antiretroviral Adherence for Persons With HIV in 2012.