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Paying for HIV care

Paying for everyday needs and health care is hard for many people, including those living with HIV/AIDS. HIV/AIDS drugs are expensive, and many people find it hard to buy the medicines they need. Some people with HIV/AIDS are not able to work. Other people may have problems getting the housing they need. Studies show that people with HIV/AIDS are better able to take care of their health when all their basic needs, like housing, are met. Services are available to help people with HIV/AIDS pay for health care, medicine, housing, and other basic needs.

Getting and keeping health insurance

Many people who are infected with HIV are able to live full lives with no signs of their infection for a long time. The main way these people will be paying for HIV care is with health insurance. Even when you seem to be doing fine with HIV, you will have expenses. At first you may need screenings and doctor visits, but eventually you will need expensive medicine and other care.

Today, most Americans living with HIV get their insurance from Medicaid or Medicare. These are government-run insurance programs. Medicare is for people over 65 and people with disabilities. Medicaid is for people with low incomes and people with disabilities. Some people get health insurance through their employer. There are also people who have to buy plans on their own. This might include people working for small businesses that don't offer insurance. Getting coverage has been difficult for people living with HIV/AIDS. Nearly 30 percent of people with HIV don't have any insurance at all. People with HIV can also get assistance from the AIDS Drug Assistance Program (PDF, 93 KB). This program helps people who cannot afford to pay for their HIV medications.

In addition to Medicare and Medicaid, other health insurance is changing because of health care reform. Learn more about how to get the health insurance you need at HealthCare.gov.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) helps people with HIV/AIDS keep their health insurance. Part of the law protects people when they lose or change jobs by offering insurance "portability" to qualifying people. The law also sets guidelines to keep people's medical information private.

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Disability benefits for people who cannot work

If you have HIV/AIDS and cannot work, you may qualify for help from the Social Security Administration. The money you get can help you pay for basic needs, such as food, clothing, and shelter. Benefits are paid under two programs:

  • The Social Security Disability Insurance Program is for people who have worked and paid Social Security taxes. The amount of money you get each month depends on how much you earned while you were working. You also will qualify for Medicare after you have been getting disability benefits for 24 months. Medicare is a federal health insurance program. It helps pay for medical care, HIV drugs, and other services.
  • The Supplemental Security Income (SSI) program is for people who have little income and few resources. If you get SSI, you most likely will be able to get food stamps and Medicaid, too.

If your Social Security benefits are very low and you have limited other income and resources, you may qualify for both programs.

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Medicare and Medicaid for working people with disabilities

Special rules make it possible for people with disabilities receiving Social Security benefits or Supplemental Security Income (SSI) to work and still receive monthly payments and Medicare or Medicaid. Social Security calls these rules work incentives. Contact your state Social Security office to find out if you can make use of these programs.

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Medicaid is a federally-sponsored health program for people with low income. Each state runs its own Medicaid program. Medicaid does not pay money to you; instead, it sends payments directly to your doctors. You must qualify to get Medicaid. Most adults with HIV who qualify for Medicaid:

  • Are disabled
  • Have low income
  • Have limited assets
  • Have families with dependent children and meet certain income and resource standards

Medicaid was expanded under health care reform. So if you haven't qualified before, you might now. You apply to Medicaid in the state where you live. Each state has different rules as to whether you qualify. You can get an application at your local Medicaid office. You can also call your local Social Security office. Learn more from the Centers for Medicare and Medicaid Services.

  • Financial support during pregnancy – If you are pregnant, Medicaid may pay for your prenatal care. If you are pregnant and HIV-positive, Medicaid might pay for counseling, medicine to lower the risk of passing HIV to your baby, and treatment for HIV. You can stay on Medicaid for about 90 days after you deliver your baby. It may continue for one year after you deliver your baby. This depends on the rules in your state. Each state makes its own Medicaid rules. If you don't think you qualify for Medicaid, check again. You may be able to get it while pregnant because the income limits are raised for pregnant women to provide prenatal care and HIV treatment.
  • Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) – The Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) service is Medicaid's preventive child health program for children under 21. EPSDT offers access to Medicaid services and screenings that may be important for a child with HIV but are not covered for the rest of the Medicaid population.

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Ryan White HIV/AIDS Program

This federal program helps people with HIV/AIDS who have nowhere else to turn for the care they need. It pays for doctor visits, HIV/AIDS drugs, and supportive services for people with HIV/AIDS. In some cases, family members can receive services through a Ryan White program for women, infants, children, and youth, even though they are not diagnosed with HIV. Call your state's HIV/AIDS hotline to ask about care or medicines through Ryan White or other programs.

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Programs that help pay for HIV/AIDS medicines

You can get help paying for HIV/AIDS drug treatment:

  • Ryan White AIDS Drug Assistance Program (ADAP) gives HIV drugs to people with HIV/AIDS who don't have health insurance that pays for HIV drugs. For example, it covers people with low incomes who may not be disabled and can't get public health insurance, like Medicaid. This drug program is run by your state and may have different rules than other states. Call your state's HIV/AIDS hotline to ask about the ADAP program in your state.
  • Patient assistance programs are offered by some drug companies to give medicines at a lower cost or for free to people who can't afford them. Ask your doctor to contact the program for you.
  • Clinical trials offer people with HIV a way to try new HIV medicines that aren't yet available to the public. AIDS clinical trials are research studies in which new treatments for AIDS and HIV infection are tested in humans. These studies help determine if the drugs are useful and safe in treating HIV/AIDS. These HIV drugs are free for the person in the trial.

Medicare Part D prescription drug coverage

If you get your medications through Medicare Part D coverage, health care reform may make drugs more affordable for you. People whose HIV drugs are paid for with Medicare Part D may fall into the "donut hole" in drug coverage. This means that the costs are high enough that Medicare stops paying for them, and you pay the rest. When your drug costs increase much more in the same year, a type of emergency coverage kicks in, and Medicare pays for your drugs again. For people paying for all of their drugs while in this "donut hole," health care reform now gives them a 50 percent discount on brand-name drugs. More discounts will go into effect in coming years.

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Housing Opportunities for Persons With AIDS (HOPWA)

Resources under one roof

You can get help with health services, legal assistance, and housing at HousingWorks.org.

The U.S. Department of Housing and Urban Development (HUD), Office of HIV/AIDS Housing runs the Housing Opportunities for Persons With AIDS (HOPWA) program. Their programs provide HIV/AIDS housing that includes short- and long-term rental assistance, live-in medical facilities, and housing sites developed just for people living with AIDS.

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More information on paying for HIV care

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Content last updated July 1, 2011.

Resources last updated July 1, 2011.

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