Since 1981 there has been an incredible transformation in the care of individuals diagnosed with Human Immunodeficiency Virus, or HIV. Gone are the days when a diagnosis meant imminent death.
Today, people living with HIV can expect to live an average lifespan of 73 years for males and 79 years for females. Thanks to decades of HIV-related activism and advocacy, along with the development of antiretroviral therapy in the mid-1990s, care and treatment have improved dramatically. People living with HIV not only survive but thrive, giving hope for a brighter future.
However, it’s important to note that even with medical advancements, a diagnosis of HIV still requires lifelong care and treatment. Today, many older adults living with HIV face the challenges of aging with the disease. Also, people ages 65 years and older living with HIV experience a higher risk of other health issues and physical limitations.
‘The initial response to this once-terminal medical condition was overwhelming fear, stigma and isolation.’
Culturally, the intersectional scourges of HIV-related stigma, discrimination and structural conditions—including racism, homophobia, sexism, transphobia, xenophobia, ableism and poverty—continue to create barriers to care, treatment and services for older adults living with HIV.
In this social context, The Denver Principles remain not only relevant, but also serve as an essential guide for planning the care, treatment and psychosocial services for older adults living with HIV. In this new era of hope, this document continues to guide our commitment to genuine, innovative, evidence-informed efforts to improve the health and quality of life of older adults living with HIV.
The Denver Principles as a Humanitarian and Patient Rights Document
Across the 40 years of this epidemic, people living with HIV helped American society reshape how drug research, clinical trials and patient care are understood and delivered. Continuing from the self-empowerment movements of the 1960s through the 1980s, the domestic HIV movement, as reflected in its foundational document, The Denver Principles, took root. This document articulates our responsibilities to engage one another, our communities and our representative institutions.
Although HIV is now considered a chronic health condition, the initial response to this once-terminal medical condition was overwhelming fear, stigma and isolation. It was under these conditions that a group of gay men living with HIV came together to articulate a radical new approach for healthcare providers to relate to the people they treat. Under the banner of The Denver Principles, advocacy for the rights of people with HIV or AIDS is not just a matter of medical ethics; it is a holistic approach to human dignity and social justice.
For example, the fifth recommendation listed is directed at healthcare professionals and states that psychosocial needs, as well as biophysical issues, should be addressed when treating people with HIV.
Other recommendations for healthcare professionals encourage providers to turn inward and examine their feelings about HIV and beliefs about the characteristics of people most vulnerable to HIV. The holistic approach sought by the recommendations’ authors emphasized that patients and providers should be understood as whole people with unique feelings, lived experiences, motives and goals.
The rights listed in the Rights section of The Denver Principles highlight the necessity for equitable access to quality healthcare and social services, unmarred by discrimination based on sexual orientation, gender, economic status or race. Moreover, these rights champion the principle of informed consent, allowing individuals to grasp the implications of medical procedures and treatments and make decisions about their care that are in their best interest. Informed consent includes the right to refuse participation in research without fear of compromising standard of care.
Further, by emphasizing dignity in life and death, these rights serve as a reminder of the inherent value of every individual, regardless of their health status. They call for a societal shift toward compassionate and respectful treatment of people living with HIV and AIDS, ensuring that they are not only seen through the lens of their diagnosis but as total participants in society, with rights and aspirations.
This perspective challenges stigma and discrimination, advocating for a supportive environment where individuals can make informed choices about their lives, with dignity. It underscores the importance of a comprehensive approach that goes beyond medical treatment to include social and emotional support by enriching the quality of life for people with HIV and AIDS and fostering a more inclusive and equitable society.
Specific Actions Needed to Support Older Adults Living with HIV
The Ribbon Organizing Center for HIV and Aging (ROC4Aging+) is a national technical assistance provider of Gilead Sciences, Inc., an HIV Age Positively initiative. Under this initiative, ROC4A+ provides education, training and resources to 23 national, regional and local organizations. In addition, ROC4Aging+ collaborates with a National Community Advisory board organized around three action groups: Program, Communications and Policy. The ROC4A+ Policy Action Group recommends the following actions:
We must support existing models for policy change and development for older adults living with HIV. Demanding Better: An HIV Federal Policy Agenda by People Living with HIV includes a few of these recommendations for Congress to improve the lives of people living with HIV. The recommendations in this policy agenda cover a range of issues that impact every aspect of the lives of people living with HIV, from housing to food and economic security.
‘Organizations must commit to ensuring that, at the very least, staff participates in training on aging with HIV, ageism and ableism.’
Furthermore, as emphasized in ROC4A+’s Congressional Briefing Paper on HIV and Aging, we must facilitate the drive to enact policies and implement services so that every older adult living with HIV can enjoy their later years with dignity. Some ideas include:
- Advocates must promote the importance of the “meaningful involvement of people with AIDS” (MIPA) for good decision-making that will further work to improve positive health outcomes and support well-being and quality of life.
- Organizations must commit to ensuring that, at the very least, staff participates in training on aging with HIV, ageism and ableism and become familiar with the vast array of general and community elder and gerontology services and programs to facilitate links and referrals for eligible older adults living with HIV.
- Providers cannot assume patients fully understand or can articulate the physical and cognitive changes and reduced qualities of life experienced. Instead, healthcare systems must make resources and information about aging easily accessible so they can discover what it means for them to age graciously with HIV.
- Providers must ensure that older adults living with HIV are aware of available support services to reduce loneliness and isolation, while addressing other psychosocial needs, including mental health diagnoses and post-traumatic stress disorder (PTSD).
- The Federal HIV Response must strengthen concrete commitments, strategies and structural interventions to improve the quality of life for people living with HIV and older adults living with HIV.
In closing, we must support The Denver Principles and prioritize the voices of people living with HIV in our efforts to end the domestic epidemic. By ensuring their meaningful participation in policy-making and practice, we can make significant progress toward eradicating this disease and treating individuals living with HIV with respect and dignity.
Vanessa Johnson, JD, is co-executive director of Ribbon in Largo, Md.; Joie Otting is project coordinator at TRX Development Solutions in New York; John Guidry, PhD, is founder, president and CEO of TRX Development Solutions; Shauna Cooper, MPH is the director of programs at Ribbon; and Linda H. Scruggs, MHS, is co-executive director at Ribbon.
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