An HIV diagnosis can be life-changing. Living with the virus means you have a lot to juggle to take care of your health: doctor’s appointments, prescription refills, tests, and medical bills. You may feel overwhelmed, confused, or not know where to turn for help. A variety of health professionals can help you work through your questions and concerns.
A primary care doctor with experience in treating HIV may be able to help you manage your care. If you need more help, an HIV case manager can help you get the support you need to live a stable life, so you can take care of your health and stay on treatment. Case managers make the process of getting health care and any social services you need much smoother.
Your HIV case manager can be your:
- Health advocate, speaking up for your needs and concerns, and coordinating your care with social service agencies
- Counselor, helping you manage your life and challenges with HIV
- Problem solver, helping you find solutions to financial or practical barriers to care
Case managers may work through your local or state health department, nonprofit HIV organizations, or community hospitals.
You’ll meet with an HIV case manager at least two times a year to talk about your goals and the support you need to achieve them. They’ll help you build the right skills to manage your life with HIV and learn how to speak up when you need care or support.
How Are Case Management Programs Funded?
Case management services in every U.S. state are funded by federal grants from the Ryan White HIV/AIDS Program of the U.S. Health Resources and Services Administration (HRSA). This program was named for Ryan White, an Indiana teenager who advocated for the needs and rights of people with HIV.
The Ryan White HIV/AIDS Program offers case management and other services to people who are:
- Diagnosed with HIV or AIDS
- Low income, based on their local or state financial criteria
- Have no health insurance or have insurance that doesn’t pay for all the care they need
More than half of all Americans who have HIV get some type of service, such as case management, through the Ryan White HIV/AIDS Program each year. Nearly 90% of the program’s clients reach viral suppression.
Why Would I Need an HIV Case Manager?
As soon as you’re diagnosed with HIV, you should see a doctor to start antiretroviral therapy (ART). These are HIV medications that lower levels of the virus in your blood, so you stay healthy and are far less likely to pass HIV to your partners through sex.
Your case manager can make sure you’re ready to take on the responsibility of daily HIV treatment and help you set up an appointment with a doctor who prescribes ART. They can counsel you about how to take your meds, stick to your treatment plan, and take care of your health.
Many people with HIV don’t start or stay in care to control their HIV. The most recent estimates show that in 2019, out of all people in the population who’ve been diagnosed with the virus, only:
- 66% connected with a doctor for care
- 50% stayed in care
- 57% reached viral suppression by taking their HIV meds on schedule
Why? Many people have challenges that make it hard to take medication consistently every day for the rest of their lives. But to avoid medication resistance and suppress the virus, people with HIV need to take medications every day. Some common challenges include:
- You may lack a steady job, stable housing, transportation, or money to pay for food, medicine, or health insurance.
- You may have substance abuse or mental health conditions like depression, or need child care when you need to go to the HIV clinic for appointments.
- You may have other serious health conditions, such as diabetes, migraine, Crohn’s disease, or cancer. Treatments may have put you in debt or made you wary about seeing a doctor.
If you work with a case manager, you’re more likely to stay on ART and have better health, including a stronger immune system to keep HIV in check.
How Can a Case Manager Help Me Overcome Barriers to Care?
Case managers connect you to a range of social services for people living with HIV. They’ll meet with you to talk about your health and any specific challenges you have that keep you from getting care. Your case manager will assess what specific services you need and help you access those services.
Your HIV case manager can help you:
- Set up appointments with doctors and a dentist, and help you keep those appointments
- Find affordable health insurance or government insurance, like Medicaid or Medicare
- Apply for financial aid to help you cover living expenses, such as Social Security or Temporary Assistance to Needy Families (TANF)
- Help you apply for safe housing, and even help you find an apartment and pay your first month’s rent
- Get short-term help to pay for your utilities or cell phone minutes
- Find free rides to clinic appointments, or bus/transit passes
- Get free groceries at your local food bank
- Get counseling for mental health conditions or treatment for substance abuse
- Find out if you qualify for free HIV medications through the AIDS Drug Assistance Program (ADAP), and if you do, help you apply
- Manage your pregnancy, prenatal care, delivery, and infant care
- Find HIV support groups
- Get a referral to a lawyer if you need help with a legal matter
Your case manager can help you fill out all the forms to apply for these benefits, so you don’t need to understand the questions and jargon on your own. They’ll also help you figure out if you’ll have to pay for any of the costs of services you use.
Who Typically Works With HIV Case Managers?
While anyone with HIV may work with a case manager, uninsured or underinsured people with HIV are most likely to work with one. Many may not have a steady job and regular income. Their clients are more likely to be women and people of racial and/or ethnic minority groups.
You may work with an HIV case manager if you’re newly diagnosed or if you’ve lived with the virus for years.
What Training Do Case Managers Have?
Case managers are often clinical social workers or nurses. They often have special training in communication skills, record keeping, the latest HIV/AIDS medical care, and local, state, and national programs that offer benefits to people with HIV.
Each state sets standards for its HIV case managers, such as additional training and annual limits on how many people with HIV they can work with at one time.
Case Management: Five Steps
HIV case management follows a few basic steps:
- Intake. Your case manager will ask you for your documents to prove your HIV status, residency, and income. They’ll ask you a few questions to gauge what services you may need, explain how you’ll work with your case manager, and enroll you in the program.
- Assessment. They’ll ask you questions about your health, your living situation, and your current medical care and needs. Be open and honest. Your case manager wants to figure out what services or help you may need. They may also visit you at home and talk with social service providers who work with you now.
- Individualized Service Plan. Based on your assessment, your case manager will create a written individualized service plan (ISP) that lists the HIV services you need. It outlines your priorities and goals, and how you’ll try to achieve them. Your ISP may include both short-term and long-term needs and goals, as well as social services that your children or other people living in your household need. If you don’t understand anything in your ISP, be sure to speak up and ask.
- Referrals. Your case manager will refer you to social service agencies and providers based on your specific needs as outlined in your ISP. They’ll help you start medical care and get any support you need to stay on treatment. For example, they may set up your doctor’s appointments and help you apply for social services.
- Evaluation. Your case manager will follow up with you and your service providers to make sure you’re getting the support you need. They’ll review your ISP as often as every 3-6 months to see if you need to change or add any services. To stay in the program, you may need to show your case manager proof that you attend your regular doctor’s appointments, and that your income and state residency haven’t changed.
If you have any emergencies or problems in between appointments with your case manager that keep you from seeing your doctor, contact them right away so they can help you.
Do I Have to Pay to Work With a Case Manager?
HIV case management services are typically free of charge to you if you’re low income based on your state’s criteria, or if you have no health insurance or your plan doesn’t cover all the HIV care you need.
When you meet with your case manager, they’ll ask you for a copy of your positive HIV test, proof of residency in your state, and proof that you are low income (based on your state’s definition) to qualify for free services.
You may need to show a photo ID, even if it’s expired or from another state. If you don’t have one, your case manager may ask you for other documents. These could be things like an old bank statement, marriage license, or check stubs that show your legal name.
What If I Need Insurance or Help Affording My Meds?
If you don’t have health insurance, your case manager can help you find coverage to help you afford your HIV medical care and medications. They can review Medicaid, Medicare, ACA marketplace, and private health plans available in your area. They’ll go over any costs, like premiums or drug copays, with you.
Your case manager can also tell you about how to find discounts on your HIV medications through patient assistant programs (PAPs).
How Do I Find an HIV Case Manager?
You can find HIV case managers in your area by visiting the Ryan White HIV/AIDS Program website at https://findhivcare.hrsa.gov/ and typing in your zip code.
Or, call one of these toll-free numbers to find local HIV case management programs:
- CDC: 1-800-CDC-INFO (1-800-232-4636)
- National Institutes of Health: 1-800-448-0440