Managing the cost of HIV care

Shelly Gigante

By Shelly Gigante
Shelly Gigante specializes in personal finance issues. Her work has appeared in a variety of publications and news websites.
Posted on May 28, 2020

For those living with HIV, proper medical care is essential to enjoying a long and healthy life. But the treatment needed to do so does not come cheap.

The brand-name antiretroviral therapy (ART) drugs most often recommended by doctors can cost anywhere from $250 to $4,300 per prescription, while the generic equivalents (which are not always available) cost from $10 to $1,700 per prescription, according to Healthline.com, which reviewed pricing information from multiple sources, including the U.S. Department of Health and Human Services and GoodRx.That does not include the cost of inpatient, outpatient, and emergency medical care, lab tests, and non-ART prescriptions.

“There is great fear [among newly diagnosed HIV patients] that the burden of cost will be greater than what they earn,” said Vince Crisostomo, program manager of the Elizabeth Taylor 50-Plus Network at the San Francisco AIDS Foundation, noting that resources abound to help patients get the care they need at a price they can afford.

For many, public or private health insurance will pick up most of the tab. Indeed, HIV.gov notes that under the Affordable Care Act, most job-based and individual plans are required to offer new benefits and protections, and they cannot drop you or deny coverage due to preexisting health conditions, such as HIV.

Others may benefit from government assistance or discounts available through pharmaceutical manufacturers.

HIV in the U.S.

An estimated 1.1 million Americans are living with HIV today, with an estimated 40,000 new HIV infections still occurring in the U.S. each year, according to HIV.gov.2

HIV, the human immunodeficiency virus that causes AIDS attacks the infection-fighting cells of the immune system, making it difficult for the body to fight off infections and certain cancers, according to the National Institutes of Health.Left untreated, HIV can gradually destroy the immune system and advance to the later-stage disease called AIDS, or acquired immunodeficiency syndrome.3

There is no cure for HIV, but daily medications can help slow progression of the virus and reduce the risk of HIV transmission to others. Early diagnosis and treatment is key.

State hotlines offer support

If you are newly diagnosed or struggling to cover the cost of treatment, you can contact your state’s HIV/AIDS toll-free hotline, which helps to connect patients with programs and services for which they may be eligible.

In addition to researching financial assistance programs, Crisostomo also urges those living with HIV to find social outlets to help them stay connected in their communities. His group, for example, the Elizabeth Taylor 50-Plus Network for gay, bisexual, and transgender men age 50 and older, welcomes members who are both HIV-negative and living with HIV. For some, it has become a vital outlet for building friendships and encouraging emotional wellness.

“In rural areas of the country, in particular, people with HIV tend to be isolated,” said Crisostomo. “We think it’s important for them to find some kind of social support and sense of community where they feel like they belong.”

Health Center Program

Patients of any income level can also access programs and health care providers through the federal Health Center Program. Its one-stop HIV Testing Sites & Care Services locator tool makes it easy to find service providers near them who are able to assist with medical testing and treatment, mental health and substance abuse, and housing assistance. The tool provides a comprehensive list of resources available through the Centers for Disease Control and Prevention, Substance Abuse and Mental Health Services Administration, the Health Resources & Services Administration, and other federal agencies including the Department of Housing and Urban.

Ryan White HIV/AIDS Program

Low-income individuals with HIV who are uninsured or underinsured can access primary medical care, medications, case managers, and essential support services through the Ryan White HIV/AIDS Program of the Health Resources & Services Administration.

“HRSA’s Ryan White HIV/AIDS Program provides a comprehensive system of care for low-income people with HIV who are uninsured and underserved,” an HRSA spokesperson said in an interview, noting the program provides support to more than 500,000 people with HIV each year.

The program also provides funding for the AIDS Drug Assistance Program (ADAP), a state and territory-administered program that provides medications approved by the Food and Drug Administration to low-income people living with HIV who have limited or no health coverage from private insurance, Medicaid, or Medicare. According to HRSA, ADAP funds may also be used to purchase health insurance for eligible clients and for services that enhance access to, adherence to, and monitoring of drug treatments.

Medicare

Medicare, the federal health insurance program for people who are 65 and older, younger people with certain disabilities, and people of all ages with end-stage renal disease, may also help to cover the costs of HIV treatment for those who are eligible. Medicare provides coverage for outpatient care, prescription drugs, and inpatient hospital care.

Veterans Administration

According to HIV.gov, the Department of Veterans Affairs is the single largest provider of medical care to people living with HIV in the U.S., supporting more than 24,000 veterans living with HIV. The Veterans Administration offers an online tool to help veterans learn more about their benefits.

Medicaid

For low-income individuals who qualify, Medicaid may also help cover the bills. The federal and state health insurance program “is a critical source of coverage for many people living with HIV/AIDs,” according to HIV.gov.

Under the ACA, states have the option to expand Medicaid eligibility to include people below certain income levels, including low-income childless adults who were previously not generally eligible for Medicaid.

“As a result, in states that opt for Medicaid expansion, people living with HIV who meet the income threshold no longer have to wait for an AIDS diagnosis in order to become eligible for Medicaid,” HIV.gov reports on its website.

HIV.gov encourages HIV patients to apply for Medicaid even if their state has not expanded its coverage to see if they qualify for benefits.

Low-income women and children

Low-income women and children may also be eligible for the Children’s Health Insurance Program (CHIP), which provides free or low-cost health insurance coverage for children up to age 19. HIV.gov notes that each state has its own unique eligibility rules. To find out more, visit www.InsureKidsNow.gov or call 877-KIDS-NOW (877-543-7669).

Similarly, low-income women, children, and youth (including children with special needs) with limited access to health care may be eligible for the Maternal and Child Health Services Block Grant Program .

American Indians and Alaska Natives

There is also a federal health program to assist American Indian and Alaska Native tribes available through the Indian Health Service.

Drug manufacturer discounts

HIV patients with limited means may also qualify for free or reduced-cost antiretroviral medication through a Patient Assistance Program, administered by pharmaceutical companies. The companies may offer discounts to low-income individuals with HIV who are either uninsured or underinsured and do not otherwise qualify for Medicaid, Medicare, or ADAP.

Eligibility criteria differ for each company. Patients may apply for assistance using a common patient assistance program application (CPAPA) and companion document .

The therapies used to treat people living with HIV have become highly effective. Thanks to ongoing advancements in modern medicine, many individuals with HIV can now expect to live a long and healthy life. But they still must navigate the system carefully to minimize the cost of care.

Experts on the front lines of the fight to improve the health and well-being of HIV patients encourage them to take advantage of the many financial and emotional support resources that exist.

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Healthline.com, “The Cost of HIV Treatment,” March 4, 2019.

HIV.gov, “U.S. Statistics,” 2018.

National Institutes of Health, “HIV/AIDS: The Basics,” July 3, 2019.

The information provided is not written or intended as specific tax, medical, or legal advice. MassMutual and its subsidiaries, employees, and representatives are not authorized to give tax or legal advice. You are encouraged to seek advice from your own tax or legal counsel or healthcare provider. Opinions expressed by those interviewed are their own and do not necessarily represent the views of MassMutual.