Moving beyond your diagnosis—finding a provider, knowing your rights, and more

HIV treatment

It’s recommended that everyone with HIV be on antiviral therapy. It’s been shown that with early treatment, people living with HIV will live a near-normal lifespan. Treatment also prevents transmission of the virus.

Find an HIV specialist

It’s good to find a medical provider who treats other people with HIV, or is knowledgable about treating HIV; look for an HIV specialist. The American Academy of HIV Medicine and the HIV Medicine Association each have a provider finder. Go to hivma.org and aahivm.org. In addition, your local AIDS service organization knows the HIV specialists in your area, and can help point you in the right direction.

Medical care

Ideally, people with HIV should have a CD4+ T cell count and HIV viral load measured every three to four months following suppression of HIV viral load with the use of effective antiretroviral therapy (ART). Testing every six months and even annually may be acceptable once your virus is undetectable for an extended period of time and you are in general good health.

  • The T-cell count is a measure of immune function.
  • Viral load is a measure of how much virus is in your blood.
  • Generally, the viral load test result is given greater weight.

Baseline

At diagnosis or soon thereafter and before starting treatment, your clinic should check you for:

  • Other STIs
  • HIV drug resistance
  • Hepatitis B and C

Insurance

Just because you have health insurance doesn’t mean that treatment is free. There are co-pays and other costs for medical care. (See the cost-sharing and medication assistance charts.) For those without insurance, check with your state’s AIDS Drug Assistance Program (ADAP), or go to healthcare.gov, or call (800) 318-2596.

HIV and the ADA

How are people with HIV protected by the nation’s disability law? Read the section on HIV from the Americans with Disabilities Act at ada.gov/archive/hivqanda.txt.

HIV anti-discrimination law

The National Center for HIV Law and Policy advocates for the rights of people living with HIV and covers several areas of concern (such as employment, housing, and immigration). Its website includes a link to organizations, by state, that can provide legal information to people living with HIV. Write the center: 65 Broadway, Suite 832, New York, NY 10006. Call (212) 430-6733. Go to hivlawandpolicy.org.

HIV prevention

When you are on effective antiretroviral treatment (ART) and your virus is undetectable (less than 200 copies) for at least six months, it also means you can’t transmit HIV to your partner (Undetectable equals Untransmittable, or U=U). This is also called “treatment as prevention,” or TasP.

Pre-exposure prophylaxis (PrEP) is when people vulnerable to HIV take medicine to lower their chance of acquiring HIV. Currently Truvada is the only drug approved for PrEP. Daily PrEP reduces the risk of acquiring HIV from sex by nearly 100%. Among people who inject drugs, it reduces the risk by more than 70%.

PEP (post-exposure prophylaxis) means taking antiretroviral medicines (ART) after being potentially exposed to HIV to prevent acquiring HIV. PEP should be used only in emergency situations and must be started within 72 hours after a recent possible exposure to HIV. If you think you’ve recently been exposed to HIV during sex, or through sharing needles and works to prepare drugs, or if you’ve been sexually assaulted, talk to your health care provider or an emergency room medical provider about PEP right away.

Sexually transmitted diseases (STIs) are infections that spread from person to person through sexual contact, including anal, vaginal, or oral sex. HIV is an STI, but TasP, PrEP, and PEP do not prevent transmission of other STIs such as gonorrhea or syphilis.

Having HIV and another STI may increase the risk of HIV transmission. Condoms and other methods can help prevent or lower your risk for STIs. People with HIV should get tested for STIs at least once every year if they are sexually active, and more often depending on individual risk factors or symptoms.

Newly Diagnosed With HIV: Now What?

See this excellent article on TheBody.com for down-to-earth tips on mental health, medical care, and practical steps from a person who's been there.