Returning to Care

What Should You Do If You’ve Stopped Going to HIV Care?

If you’ve stopped seeing your health care provider regularly for HIV care or have stopped taking your medication, it’s important to return to care, even if you have to start seeing a new provider.

HIV is a serious health condition. If you stop taking your HIV medication or haven’t seen a health care provider recently for a test to know if your medication is working, you are giving HIV the chance to multiply quickly. This could damage your immune system and you could become very sick and develop opportunistic infections. You could also develop resistance to your HIV medications and they will no longer be as effective.

Managing a chronic condition like HIV may be difficult at times, however your health care provider will work with you to make sure you are on track to optimal health. Some people with HIV who stop seeing their health care provider worry about going back and how their provider will react. But providers are usually concerned when their patients stop coming to appointments and are happy to see them return to care.

Talk openly and honestly with your provider. Discuss the reasons why you haven’t kept up with your appointments and/or have stopped taking your HIV medications so that he or she can help you find ways to address those reasons in the future.

And if you don’t like your health care provider, find a new one. Your new provider can help you ask for your health records to be transferred over from your previous provider.

Remember: Being in care and taking your HIV medication is the key to staying healthy. You can manage your HIV and live a long, healthy life with regular medical care and HIV treatment.

Where Can You Find Help to Return to Care?

You may want to begin by contacting the office of your previous HIV health care provider. They will likely be glad to hear from you and will set up an appointment for you to reengage in care.

Or you can reach out to a local HIV/AIDS service organization. They have lots of experience helping people who have left HIV care and want to return.

Many HIV/AIDS service organizations have peer navigators or linkage-to-care coordinators. These are individuals from the community who are trained to guide you through the medical and social services you may need and provide support to help you stick to your HIV treatment plan. Many are people with HIV themselves and have learned a lot about how to make it easier to take medication and remain in care. They can relate to your experience and work with you to develop solutions to many problems you may encounter.

Many organizations also have case managers or benefits counselors who can help you determine what programs and services you may qualify for and help you find a counselor or support groups.

To find local HIV/AIDS services near you, use the HIV Testing and Care Services Locator.

Why Do Some People Stop Going to HIV Care?

There are many reasons why some people stop seeing their health care provider regularly or stop taking their HIV medication. These include medication side effects that are difficult to manage, changes in health care coverage, moving to different city or state, or other issues such as substance abuse or mental health disorders.

In addition, racism, discrimination, HIV stigma, homophobia, and transphobia can make it hard for some people to seek and receive high-quality health care. Poverty, lower educational levels, access to transportation, and language barriers play a role too. Some people may not stay in HIV care due to a general mistrust of the health care system or fear of disclosing their immigration status.

Talk to a health care provider about any challenges you are experiencing, and they will work with you to develop a plan to address them. You can also read about some of these challenges and how you might overcome them on our page, Tips for Taking Your HIV Medications Every Day.

Need inspiration to return to care? View the personal stories of people with HIV who are living healthy with HIV. Visit PositiveSpin.HIV.gov.