Help HIV Patients Advocate For Their Health
Tools are in place today to end the HIV epidemic in the United States. With the ongoing development of safe and effective antiretroviral therapy (ART) options, a once unknown and uncontrollable virus has been transformed into a manageable, chronic health condition.1 Early and continued adherence to ART protects one’s individual health and virtually eliminates the risk of sexual transmission to others.1 Routine HIV screening, access to pre- and post-exposure prophylaxis, harm reduction services, and comprehensive insurance coverage are additional measures that can be implemented to help prevent the nearly 38,000 new US cases that are still being diagnosed each year.2,3
Yet, HIV/AIDS diagnoses and deaths continue to affect some groups more than others, especially communities of color, LGBTQ individuals, and populations in the US South.2,3 In order to end the HIV epidemic, ART and other methods for prevention and intervention must be applied less disproportionately, in a manner that addresses social and structural HIV health disparities and ensures equitable access to treatment and care. Coordinated efforts are needed from federal, state, and local governments, community-based organizations (CBOs), healthcare and other professionals working in HIV, and last but certainly not least, people living with HIV.
Ending the HIV Epidemic in the United States: A Roadmap For Federal Action by AIDS United encourages the “meaningful involvement” of people living with HIV to help guide the work being done and progress being made.2 The declaration aims to elevate diverse voices of the epidemic, those who consistently confront stigma, transphobia, homophobia, unemployment, economic and food insecurity, homelessness, lack of healthcare, violence, discrimination, criminalization, and racism—and who, as a result, may struggle with self-determination.
Healthcare professionals have the opportunity to encourage patients to advocate for their health by learning to make positive choices to take care of their physical and mental well being, actively participating in their medical care and treatment, and even staying connected to the larger HIV community. Check out the following list of reasons and resources to help HIV patients continue to explore and make connections online.
Resources to help patients expand their knowledge base:
(available in English and Spanish)
CDC.gov/HIV
A good starting place for topics ranging from understanding treatment and care, living healthy, protecting others, and addressing stigma and mental health
TheBody.com
Comprehensive community resources and news, along with information about living with and learning about HIV
How It’s Viewed
Immersive experience that lets patients experience a world without stigma, coupled with a podcast, patient stories, and more
Learning about HIV may better equip patients to:
Talk about their experience
Know what questions to ask
Learn how to take care of and advocate for their health
Resources to help patients understand their legal rights:
The Center for HIV Law & Policy
Web-based resource bank that provides high-quality legal and policy materials and links to experts and advocates
United States Department of Health and Human Services
Information on civil rights and health information privacy rights for people living with HIV
Understanding legal rights for people living with HIV may help patients avoid4-6:
Discrimination and/or exclusion from public spaces
Workplace bias in hiring and firing or denial of accommodations for medical conditions
Denial of healthcare or other social services and benefits
Resources to help patients with sharing their status:
CDC: Telling Others
Overview and resource links to help patients with disclosure
CDC: Conversation Starters
Conversational tips and starters to help patients broach various topics about HIV status
CDC=Centers for Disease Control and Prevention.
Sharing one’s status with healthcare providers, sexual partners, friends and family, and the community may help patients7-8:
Connect to medical care and ancillary services
Protect the health of sexual partners
Build an emotional and practical support network
Correct misconceptions and combat HIV stigma
Resources to help patients advocate for their HIV experience:
HIV.gov/blog
Digital blog that covers HIV basics, federal response, digital tools, and events
AIDS United
Blog and resources on policy, advocacy, organizing and more
Patients who actively engage in their health and their community may be able to1,2:
Make informed treatment decisions and stay adherent to long-term treatment and care
Help mobilize and empower the communities in which they participate and serve
References:
1. Panel on Antiretroviral Guidelines for Adults and Adolescents. Guidelines for the use of antiretroviral agents in adults and adolescents with HIV. Department of Health and Human Services. https://clinicalinfo.hiv.gov/sites/default/files/inline-files/AdultandAdolescentGL.pdf. Accessed November 12, 2020.
2. Ending the HIV epidemic in the United States: a roadmap for federal action. AIDS United website. https://www.aidsunited.org/resources/ending-the-hiv-epidemic-in-the-us. Accessed November 12, 2020.
3. Basic statistics. Centers for Disease Control and Prevention website. https://www.cdc.gov/hiv/basics/statistics.html. Reviewed October 22, 2020. Accessed November 12, 2020.
4. Laws protect people living with HIV and AIDS. HIV.gov website. https://www.hiv.gov/hiv-basics/living-well-with-hiv/your-legal-rights/civil-rights. Accessed November 12, 2020.
5. Employment. The Center for HIV Law and Policy website. http://www.hivlawandpolicy.org/issues/employment. Accessed November 12, 2020.
6. Know the rights that protect individuals with HIV and AIDS. US Department of Health and Human Services website. https://www.hhs.gov/sites/default/files/ocr/civilrights/resources/factsheets/hivaids.pdf. Accessed November 12, 2020.
7. Telling others. Centers for Disease Control and Prevention website. https://www.cdc.gov/hiv/basics/livingwithhiv/telling-others.html. Accessed November 12, 2020.
8. HIV stigma and discrimination. Centers for Disease Control and Prevention website. https://www.cdc.gov/hiv/basics/hiv-stigma/index.html. Accessed November 12, 2020.
HVUWCNT200020 January 2021
