Once you receive a diagnosis of HIV, the most important next step is to get into medical care. Getting into medical care and staying on treatment will help you manage your HIV effectively and make decisions that can keep you healthy for many years.
Pay attention to your mental health. Receiving a diagnosis of HIV can be a life-changing event. People can feel many emotions -- sadness, hopelessness, and even anger. But having HIV is by no means a death sentence. Allied health care providers and social service providers, often available at your health care provider's office, will have the tools to help you work through the early stages of your diagnosis and begin to manage your HIV.
Talking to others who have HIV may also be helpful. Find a local HIV support group. Learning about how other people living with HIV have handled their diagnosis may be helpful. You can also view stories and testimonials of how people are living well with HIV on this website and on the website for CDC's Act Against AIDS Campaign Let's Stop HIV Together website.
What Should I Do If I'm Newly Diagnosed With HIV?
If you received your diagnosis in a health care provider's office or a non-clinical setting (health fair, community organization, or testing event), you have probably received a lot of information about HIV, its treatment, and how to stay healthy. Give yourself time to absorb the information and get into care and on treatment right away. If you do not have much information, this website is a good place to begin to familiarize yourself with HIV.
If you received a diagnosis by taking an HIV test at home, it is important that you have confirmation to make sure you really do have HIV. The manufacturers of the two FDA-approved HIV home tests can help you with the next steps. Both manufacturers provide confidential counseling and, depending on the test you used, will give you either a referral to get a follow-up test or will perform a follow-up test on the blood sample that you submitted.
How Do I Find and Locate HIV Care and Treatment?
If you have a primary health care provider (someone who manages your regular medical care and annual tests), that person may have the medical knowledge to treat your HIV. If not, he or she can refer you to a health care provider who is a specialist in providing HIV care and treatment.
It is important that you start medical care and begin HIV treatment as soon as you are diagnosed with HIV. Antiretroviral therapy (ART) is recommended for all people with HIV, regardless of how long they've had the virus or how healthy they are. Starting ART slows the progression of HIV and helps protect your immune system. ART can keep you healthy for many years, and greatly reduces your chance of transmitting HIV to sex partners if medicines are taken consistently and correctly.
Many people living with HIV who do not seek medical care eventually receive an AIDS diagnosis. This happens because, if left untreated, HIV will attack the immune system and allow different types of life-threatening infections and cancers to develop. A cure for HIV does not yet exist, but ART can dramatically prolong the lives of many people living with HIV and lower their chance of infecting others.
Who Should Be on My Health Care Team?
Finding a health care team that is knowledgeable about HIV care is an important step in managing your care and treatment. Your HIV health care provider should lead your health care team. That person will help you determine which HIV medicines are best for you, prescribe antiretroviral therapy (ART), monitor your progress, and partner with you in managing your health. He or she can also help put you in touch with other types of providers who can address your needs. Your primary HIV health care provider may be a medical doctor (MD or DO), nurse practitioner (NP), or a physician assistant (PA).
In addition to your HIV health care provider, your health care team may include other health care providers, allied health care professionals, and social service providers who are experts in taking care of people living with HIV. These professionals include:
Health care providers:
- Medical doctors (MD or DO): Health care professionals who are licensed to practice medicine.
- Nurse practitioners (NP): Registered nurses, with specialized graduate education, who can diagnose and treat illnesses independently or as part of a health care team.
- Physician assistants (PA): Health care professionals who are trained to examine patients, diagnose injuries and illnesses, and provide treatment to patients under the supervision of physicians and surgeons.
Allied health care professionals:
- Nurses: Health care professionals who provide and coordinate patient care as part of a health care team.
- Mental health providers: Professionals, such as a counselor, psychologist, or psychiatrist, who provide mental health care in the form of counseling or other types of therapy.
- Pharmacists: Health care professionals who provide prescription medicines to patients and offer expertise in the safe use of prescriptions. Pharmacists may also provide advice on how to lead a healthy life; conduct health and wellness screenings; provide immunizations; and oversee medicines given to patients.
- Nutritionists/dietitians: Experts in food and nutrition who advise people on what to eat in order to lead a healthy lifestyle or achieve a specific health-related goal.
- Dentists: Health care professionals who diagnose and treat problems with a person's teeth, gums, and related parts of the mouth. Dentists also provide advice and instruction on taking care of teeth and gums and on diet choices that affect oral health.
Social service providers:
- Social workers: Professionals who help people solve and cope with problems in their everyday lives.
- Case managers: Professionals who help people find the support and services they need, develop a services plan, and follow up to make sure that services are provided.
- Substance use/abuse specialists: Counselors who provide advice, treatment, and support to people who have problems with substance use.
- Patient navigators: There are a number of different types of navigators who are trained and culturally sensitive workers who provide support and guidance to people by helping them "navigate" through the health care system. For example, navigators could be health care workers, social workers, those who work for community-based organizations, or peers.
How Can I Work With My Health Care Team to Protect My Health?
HIV treatment is most successful when you actively take part in your medical care. That means taking your HIV medications every time, at the right time, and in the right way; keeping your medical appointments; and communicating honestly with your health care provider. This can be achieved when you:
- Keep all of your medical appointments. There are many tools you can use to help you remember and prepare for your appointments. You can:
- Use a calendar to mark your appointment days,
- Set reminders on your phone,
- Download a free app from the Internet to your computer or smartphone that can help remind you of your medical appointments. Search for "reminder apps" and you will find many choices,
- Keep your appointment card reminder in a place where you will see it often, such as on a mirror, or on your refrigerator, and
- Ask a family member or friend to help you remember your appointment.
- Be prepared for your medical appointments. Before an appointment, write down questions or concerns you want to discuss with your health care provider. Be prepared to write down the answers you receive during your visit.
- If you can't keep a scheduled appointment, contact your provider to let them know, and make a new appointment as soon as possible.
- Communicate openly and honestly with your health care providers. Your health care provider needs to have the most accurate information to manage your care and treatment.
- Keep track of your medical services. You may have multiple health care providers working on your health care team. Keep records of your lab results, medical visits, appointment dates and times, medicines and medicine schedules, and care and treatment plans.
- Update your contact information. Make sure your health care providers have your correct contact information (telephone number, address, and e-mail address) and let them know if any contact information changes.
You can also view stories and testimonials on this website of how people living with HIV are working with their health care team to stay in care and on treatment.
[Note from TheBody.com: This article was originally published by the Centers for Disease Control and Prevention on June 20, 2018. We have cross-posted it with their permission.]