What You Need to Know When You First Find Out You Have HIV

You just found out you are HIV-positive. You have a lot of questions, and the biggest one is “What do I do next?” Here’s your guide to getting through the first days and weeks after learning your status.

Breathe. Freaking out is a normal response after learning you’re living with HIV. But take a moment to breathe because the news is not as bad as you think. Having HIV is not what it used to be. Things have changed tremendously even in the past couple of years. HIV is a manageable chronic illness, similar to diabetes. You will keep living, you will keep loving, you will still have a long happy life. So breathe. Be positive. Very little about your future needs to change.

Don’t wait too long. You want time to process, to grieve the healthy life you think you’ve lost. That’s OK. But while you’re doing that, make an appointment, go to it, fill your prescription, and start taking your meds right away. This is really important because it may affect the rest of your life. Studies show that getting on treatment early can improve your long-term health outlook significantly.

Start treatment, today. Ideally you should begin treatment the day you get your positive result. Some cities or counties offer care navigators who immediately connect you with all the wrap-around services you may need (and be entitled to) as someone living with HIV. Not every jurisdiction offers immediate care upon receiving a positive test result, but you should make a clinic or doctor’s appointment as soon as you can. The sooner you’re on treatment, the sooner you can lower your viral load and reach undetectable levels so it becomes functionally impossible for you to transmit HIV to someone else.

Find a care provider. There are resources that can help you find the appropriate providers, including:

˜ State HIV/AIDS Hotlines: The Health Resources and Services Administration maintains a list of HIV/AIDS hotlines for all 50 states, the District of Columbia, the U.S. Virgin Islands, and Puerto Rico. (Bit.ly/HIVHotlines)

˜ Ryan White HIV/AIDS Medical Care Provider List: The federal Ryan White HIV/AIDS Program provides HIV treatment services to those who are under-insured or uninsured. HRSA offers a searchable online directory of medical providers in your area who are part of the Ryan White program. 

˜ HIV Care Services Locator: Another search tool for providers in your area includes medical centers participating in the Ryan White program as well as local mental health services, housing assistance programs, and substance abuse treatment facilities. Learn more HERE. 

Find help paying for care. Sure, if you have good insurance it will probably cover most of your care, but there are also options for those who don’t, and additional financial assistance for those who need it. For example, the Ryan White program also provides fiscal support, and you may qualify for Medicare or Medicaid. The state hotlines listed above should direct you to assistance. You’ll also find resources at HIV.gov, including links for special programs for veterans, children, and Native Americans.

Undergo a baseline evaluation. Your first appointment will likely involve what is known as an HIV baseline evaluation, a review of your health and medical history, a physical exam, and lab tests. Your blood work will reveal your initial CD4 count, viral load, and potential drug resistance. The CD4 count is the number of disease-fighting white blood cells you have in your body, and your viral load is the number of copies of HIV in your blood. You want your CD4 count to go up and your viral load to go down. Antiretroviral medications make this possible, and your goal is to suppress your viral load to undetectable levels.

Review treatment options. There are about a half-dozen classes of HIV medications, each of which fights the virus in a different manner. (Our next issue features Plus magazine’s annual Treatment Guide, but in the meantime you can find last year’s guide to medications HERE) Because HIV mutates quickly and is hard to kill, doctors use a combination of several medications to treat it. Typically, those just diagnosed with HIV will be started on combination treatment, with the most common being two nucleoside reverse transcriptase inhibitors plus one drug from another class. But your doctor will consider a number of factors (including your kidney health and lifestyle) in regard to the specific medication they prescribe. One lab test they order in the baseline evaluation helps determine whether the specific strain of HIV you have is resistant to any medications. Around 10 to 20 percent of those newly diagnosed with HIV have a strain resistant to some drugs. Whether you have one or not will help determine which medication(s) your doctor recommends.

Get your meds. Fill your prescription right away and start taking your medication religiously. Study after study shows that starting treatment quickly and adhering to your treatment plan is the best way to ensure your health won’t be compromised, now or in years to come. Sticking to your plan not only means taking the medication every day (at least until long-lasting medications become available in the next few years) but also following the manufacturer directions. That’s because some HIV drugs need to be taken with food, or at specific times of day in order to be the most effective.

Find help paying for your prescriptions. HIV meds can be notoriously expensive, but that should never be a reason not to take them — and there are a bunch of resources that can help you cover prescription costs, including:

˜ ADAP Directory: State AIDS Drug Assistance Programs (ADAPs) can help you pay for HIV medicines and other services if you need financial assistance or don’t have sufficient health insurance. The ADAP Directory (ADAP.directory) has more information and includes eligibility requirements (each state has its own), formulary (i.e. which drugs are covered), links, and contact info for all 50 states, the District of Columbia, and several U.S. territories.

˜ NASTAD Membership Directory:The National Alliance of State and Territorial AIDS Directors’ directory can help you find health care specialists involved with the ADAP in your state.

˜ Drug Companies: Most of the pharmaceutical companies that make HIV medications offer patient assistance programs that will help cover the costs of your prescription. Find the info on each company’s website. We also have links or phone numbers for most of them online.

Get More Help. If all of this feels overwhelming, you are not alone. Most people need help navigating this new experience and getting their bearings in a new HIV-positive world they’re now a part of. The amazing thing is there are tons of organizations and peer support groups out there ready to give you the assistance you need. They can help you with each of the steps above, especially if you need extra help because you’re disabled, a non-native English speaker, experiencing homelessness, or you have mental health or substance abuse issues. Visit ProjectInform.org/hotlines for state-by-state helplines or check out amfAR’s list of additional resources.

Get Educated. Eventually you are going to want to tell some of your friends and family you are living with HIV, and when you do you'll want to be armed with the latest information. There’s still a lot of stigma and fear around HIV, so you want to be ready to debunk myths and answer questions. For example, your family needn’t fear sharing silverware with you—they can’t contract HIV that way. They’ll also want to know what this means for your health and your love life, so do the research ahead of time.

Learn about U=U. Undetectable equals untransmittable is the government-backed consensus that says if your viral load is undetectable, you can no longer transmit HIV to someone else. Read information from reliable sources, such as the Centers for Disease Control and Prevention, the U.S. Department of Health and Human Services, magazines like Plus, HIV specialists, and material put together by HIV organizations.

Tell someone. Coming out about your HIV status can still be difficult, even though it should be no different than telling someone about another chronic condition like diabetes. You may be afraid of how the person you are telling is going to react. Will your friends still be there when they find out you’re poz? Will your parents be disappointed? Will the guy you’re seeing break things off? Not knowing how the important people in your life are going to react can be scary. For the most part, people will probably surprise you. Those who care about you don’t stop just because you’re HIV-positive. They want to know you’re going to be OK. And you will be. Meet with those people in person, take your time, and be prepared for it to get emotional. It may be easier to start by telling someone who doesn’t need to ask questions, or whose opinion doesn’t matter to you. Know someone who is poz? Tell them. Or call a hotline and tell them. Talking about living with HIV does get easier the more you do it.

Find a support group. There’s strength in numbers. And sometimes you need to talk to someone who is going through the same thing you are. While talking to someone who has been poz for 10 years has its own rewards, they haven’t experienced what you’re going through for a long time—or possibly ever. What it means to live with HIV has changed dramatically in the past decade. You should also talk with someone else who is at the same place in this journey — another person who was just diagnosed. You’ll find them in local (or online) support groups.

End bad habits. Using street drugs or abusing prescription ones can be bad for your health. Whether they may have played a role in your becoming HIV-positive or not, studies show that they negatively impact your health outcomes going forward. The Journal of Acquired Immune Deficiency Syndromes recently reported that even “light cocaine use” is associated with medication adherence issues. Cigarettes, while not as problematic, are still deadly. In fact, a 2017 study showed that poz smokers are up to 13 times more likely to die from lung cancer than AIDS. And even smoking cannabis may raise HIV-positive people’s risks of developing lung disease, according to a new study in EClinicalMedicine. So get help breaking your addictions and bad habits to help make sure you live healthily with HIV.

Get Healthy. As many studies (including the cannabis study mentioned above) have shown, people living with HIV are more susceptible to other health concerns than people who are HIV-negative. Earlier this year, The Lancet HIV revealed that high cholesterol levels and high blood pressure are common among people with HIV, and if left untreated can become more deadly than the virus. You’ll also be healthier and happier if you watch your diet (studies continue to rank the Mediterranean diet the best), exercise regularly, and consider taking up meditation.

Get on with your life (including your love life). HIV doesn’t have to define you or change your goals and plans for the future. Finding out you’re HIV-positive isn’t a reason to give up on love or to stop dating. You are as sexy, smart, unique, and amazing as you were the day before your diagnosis. If anyone tries to tell you otherwise, kick them to the curb. Living with HIV today is like living with asthma or diabetes. Sure there are new limitations you may discover, and new challenges that HIV will place in your way, but those are things you can overcome and adapt to. There really is no reason to be negative about being poz.