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Access and Cost of HIV Treatment

Access to HIV treatment and the cost of treatment are both critically important issues to consider when it comes to HIV care. An individual who cannot access (or who has inconsistent access to) HIV treatment may have a harder time starting on and adhering to their medications. An individual who is unable to remain under a provider’s care long-term for their HIV will have worse outcomes when compared to those who are adherent to a treatment plan and who are involved in longer-term care.1-4

Issues with access to HIV medications and care

Access issues can be physical, emotional, mental, or financial, and can greatly impact an individual’s ability to get the care they need and deserve. Physical barriers to treatment or care include things like transportation issues or living in an area in which there isn’t a healthcare facility nearby (such as in a rural area). Barriers like these make it challenging for an individual to physically get to a healthcare facility and receive the medications and testing they need.

Mental and emotional barriers to care

Mental and emotional barriers to care are also important and may include denial, fear, or feelings of low self-esteem or low self-worth (such as feeling as though an individual doesn’t deserve care). These feelings may also be related to (or made worse by) an underlying mental health condition, such as depression or anxiety.

Additionally, fear may be due to an individual’s HIV diagnosis and the uncertainty the condition may bring. Others may be fearful of outing themselves to a healthcare provider or team if a part of their identity that hasn’t previously been shared will need to be discussed, such as sexual preferences, drug abuse, or trading sex for money or other goods.

Stigma

Stigma can dramatically impact an individual’s desire or ability to seek and maintain care. Receiving and living with an HIV diagnosis often brings along with it real or perceived stigma, which can impact HIV-related health outcomes. Several studies have found that perceived stigma in clinical settings has been linked to delays in treatment, poor follow-up care, worse adherence to medications, and less access to preventative measures such as HIV testing or condoms.1-4 All of these factors can lead to worse outcomes, making stigma an important thing for both individuals with HIV and their healthcare providers to consider in order to increase access to care and improve long-term health.

Although seeing a healthcare provider in person is often needed to help plan new treatment regimens or complete follow-up testing, there are some aspects of care that can be moved outside of the traditional healthcare setting for individuals worried about stigma. For example, many pharmacies offer mail order services for HIV medications, so that HIV-positive individuals don’t need to visit a pharmacy regularly to get the treatment they need.

Your healthcare provider can help you determine whether or not you qualify for a service like this and what pharmacies in your area are able to safely give out medications in the mail. This option may also be helpful for individuals having issues physically getting to their pharmacy to pick up their medications on a regular basis as well.

Financial issues

HIV care, including treatments, testing, monitoring, and healthcare appointments can all add up financially and may be hard for some individuals to manage. Struggling to pay for care can present its own barriers to treatment, even when everything else is being managed well. There are many other issues that can impact access to HIV care, including personal responsibilities, work obligations, health literacy (an individual’s knowledge of their health and healthcare, or their ability to learn about these topics and follow instructions), and more.

Many clinics will have social workers, caseworkers, and/or financial counselors associated with them who can work with you to navigate these issues and create a comprehensive plan that is best suited for you so you can get the care you need.

No matter what kind of healthcare facility you receive your care at, it is never a bad idea to ask if they have a social worker or other counselors at their office who may be able to help. If they don’t have someone on staff who can help with these issues, they should be able to point you in the direction of someone who can. These professionals can often help with issues related to housing, transportation, finances, insurance, benefits, and more.

Financial assistance for HIV treatment

As mentioned, financial issues may be a barrier to HIV care, but there are options for assistance. While many insurance companies may help cover the cost of treatment, not everyone has insurance. If you do not have insurance, you may be able to enroll in Medicaid or Medicare. These are governmental health insurance programs that can help pay for treatment if you qualify. A caseworker, social worker, or financial counselor at your healthcare facility may be able to help determine if you are eligible for one of these programs and start you on the path to getting covered.

Additionally, there are national organizations dedicated to providing financial support to those in need, like the Ryan White HIV/AIDS Program. If you are a veteran, the Veterans Administration (VA) may be able to provide support, and the Children’s Health Insurance Program (CHIP) may be able to provide assistance to children in need of HIV care.

Further, community health centers are clinics that are designed to serve individuals with lower incomes or issues with access to care as well. When it comes to treatment itself, some pharmaceutical companies have patient assistance programs that are designed to provide low- or no-cost treatment to those who qualify. Your healthcare provider or clinic may be able to help you figure out the process of applying for one of these programs.

Navigating all of these options and determining what might be beneficial for you may seem like an overwhelming task. Fortunately, there are resources available to help you sort through it all. Each state has a toll-free HIV/AIDS hotline that you can call for assistance, or find facilities in your area that are trained to help. Additionally, HIV.gov (created by the U.S. Department of Health and Human Services) has an online tool that can be used to locate clinics in your area if you’d rather search online instead of calling a hotline.5

Written by: Casey Hribar | Last reviewed: September 2019
  1. Giordano TP, Giffor AL, et al. Retention in care: A challenge to survival with HIV infection. Clinical Infectious Diseases. June 2007; 44(11), 1493-9. Available from: https://academic.oup.com/cid/article/44/11/1493/477758. Accessed July 30, 2019.
  2. Access Challenges for HIV Treatment: Among People Living with HIV and Key Populations in Middle-Income Countries. Policy Recommendations. Partnership of Global Network of People Living with HIV, Global Network of Sex Work Project, International Network of People Who Use Drugs, Global Forum on MSM and HIV, and International Treatment Preparedness Coalition. https://msmgf.org/wp-content/uploads/2015/09/Access_Challenges_for_HIV_treatment_KAPs.pdf. Published 2013. Accessed July 30, 2019.
  3. Kinsler JJ, Wong MD, et al. The effect of perceived stigma from a health care provider on access to care among a low-income HIV-positive population. AIDS Patient Care and STDs. 21 Aug 2007; 21(8), 584-92.
  4. Sayles JN, Wong MD, et al. The association of stigma with self-reported access to medical care and antiretroviral therapy adherence in persons living with HIV/AIDS. Journal of General Internal Medicine. Oct 2009; 24, 1101-8. Available from: https://link.springer.com/article/10.1007/s11606-009-1068-8. Accessed July 30, 2019.
  5. Paying for HIV Care. U.S. Department of Health and Human Services, HIV.gov. https://www.hiv.gov/hiv-basics/staying-in-hiv-care/hiv-treatment/paying-for-hiv-care-and-treatment. Published February 15, 2019. Accessed July 30, 2019.