Dr. Mark Brennan-Ing is the Director of Research and Evaluation at the Brookdale Center for Healthy Aging at Hunter College, City University of New York. They conduct psychosocial research on how vulnerable older adults cope and adapt to chronic conditions. Their work focuses especially on people with HIV and sexual and gender minorities.
Q: Your work has focused on aging populations with chronic conditions, especially older adults living with HIV. What drew you to this line of research?
I had an opportunity to take a position at Lighthouse International, which was a big vision rehabilitation agency that had a research institute. They had just done a large survey on aging and vision loss. I was interested in that survey and working there because my grandfather had become visually impaired because of a stroke. I was familiar with the challenges that older adults dealing with vision loss faced. After that study, I became interested in the chronic disease line of work.
In 2007 my mentor, Marjorie Cantor, was working as a scholar in residence at a community-based research and education organization focused on HIV and doing a lot of work on aging with HIV, called ACRIA. This gave me the opportunity to work there as well. HIV has had a large impact on my life since I came of age during the epidemic in the 1980s, but I had not really considered older people with HIV. However, the late Stephen Karpiak, who was the research director there, was one of the few researchers focused on the elder population. I knew Karpiak from our previous research together and began working with him to research the older population living with HIV/AIDS.
Q: Your recent paper in Gerontology discusses how, due to the availability of anti-retroviral therapy (ART), those living with HIV are aging and that as a result, older adults living with HIV face several health equity challenges. What are some of these challenges?
Many of the challenges of being older with HIV are due to ageism in our society. Especially in the United States, the populations that are most affected by HIV are non-Hispanic Blacks, Hispanics, and low-income communities. As this population ages with HIV, there is an exacerbation of the health inequities that they faced earlier in life that are now compounded by being older.
We know that these populations have lower levels of care engagement and significant barriers to accessing healthcare. The epidemic is still unfortunately growing in the Southern United States where there are fewer people who are eligible for Medicaid. In addition, older people with HIV have an onset of multimorbidity at an earlier age than people without HIV.
My colleagues and I have suggested that geriatric care models would be useful for this population because geriatricians are familiar with dealing with people who have multiple comorbidities. When treating comorbidities, treatment for one condition can worsen another condition. For example, treatments for congestive heart failure often result in damage to the kidney.
Incorporating principles of geriatric care into primary care and HIV care settings would create person-centered care models. Involving family and other significant others into the care plan and having the patient themselves involved in the care planning would help the older person meet their goals for function and wellness. Taking a more holistic approach to patient care is more effective than having individual specialists who are not coordinating care. Another important part of geriatric care is addressing a patient’s psychosocial needs in addition to their healthcare needs, something that is particularly relevant to people living with HIV.
Q: Your paper mentions that “ageism, namely, discrimination and stereotyping directed at people as they age, has a profound impact on prevention, treatment, and care related to HIV.” Can you walk us through how ageism and age-related stigma impact HIV-related outcomes?
Even as a growing proportion of people living with HIV become older in high income countries where access to antiretroviral therapy is readily available, there is still a pervasive idea that HIV is a young person’s disease.
For example, at the International AIDS Conference, most of the programming there is focused on younger people, such as women of reproductive age. Although that is important, older people with HIV are still largely invisible in that space. With a lack of attention in advocacy, there is also not the same attention to treatment prevention policy and programs that are needed for older people with HIV.
The UNAIDS “95, 95, 95” goals are to get 95% of people with HIV diagnosed, 95% engaged in care and 95% on antiretroviral treatment and adherence. To get to those goals, there has been a lot of focus on prevention initiatives. These are largely focused on younger people and leave older people out. In the United States, almost 20% of new infections are occurring in people over the age of 50. However, since we do not think of older people as being at risk for HIV, there is a lack of prevention programs aimed at the older population.
If an older person does develop HIV, their healthcare provider may not think that HIV is causing the symptoms that they are presenting with at the clinic, as those symptoms could be associated with a lot of other illnesses. There is a much higher proportion of older people receiving a dual diagnosis of HIV and AIDS compared to younger populations due to late diagnoses of older people.
In terms of prevention, it is very rare for healthcare providers to have conversations about sexual health with their older patients, which means older people may not know that they are at risk for HIV and are not taking precautions. When I talk to older adults about being sexually active and their sexual risk for HIV and other STIs, they are shocked because they think that HIV is a disease of younger people.
Q: You conclude that “The public health response to the HIV epidemic must realign itself with the aging of the epidemic and pay more attention to the needs of older adults.” What sorts of policy and programmatic efforts could help improve health equity among aging populations?
UNAIDS is not paying attention to the older population. For example, in sub-Saharan Africa, older people with HIV make up 10% of the population living with HIV. That is close to 4 million adults, which is larger than the entire HIV epidemic in the United States. The last UNAIDS report that addressed older adults came out 10 years ago, and they have since done very little policy or programmatic work around older people.
The national HIV and AIDS strategy specifically addresses older adults and the issues that they face in terms of dealing with multimorbidity. They set specific targets and treatment goals for the older population and address the geographic disparities in terms of southern states and rural populations. We have seen some progress there. It was not that way 10 years ago. I am optimistic that we can take this policy and advocacy around older people with HIV to the global level.
There are a lot of challenges for older people with HIV that also affect the general population of older people. We have an aging population that do not get enough resources in general.
Ruth Finkelstein (Executive Director of the Brookdale Center for Healthy Aging), Gregg Gonsalves, (Co-Director of the Global Health Justice Partnership at Yale University), and I have discussed developing a new framework of advocacy where we emphasize and demand human rights at all levels of government and root that in the global work of AIDS activists. We want to form a new social contract around policies addressing HIV as well as other circumstances that affect older adults, developing resources for programs that are rooted in human equity, and making older adults visible.
Q: September 18 is National HIV/AIDS and Aging Awareness Day, a day to bring attention to the growing number of people living long and full lives with HIV and to their health and social needs. What message do you have for the community on this day?
We need to celebrate people aging with HIV. This is a success story and a story of survivorship. We often focus on the problems that people aging with HIV have and do not recognize their strength, resilience, and ability to survive with this disease, which for a long time had no effective treatments. They managed to survive and many of them thrive and have very active, healthy, happy, and productive lives that should be celebrated.
I would really urge this community, like they did back in the 1980s, to organize and forcefully advocate for the kinds of programming, care, and support they need as they grow older. People like me can publish papers and talk to elected officials, but until the community becomes visible and vocal, I do not think we are going to see a lot of change. I think some of the positive changes around HIV and aging that we have seen in the U.S. have been the result of organizing at the grassroots level. Community organizations like the Reunion Project, the Well Project, and a group called Let’s Kick ASS, are what caused change on this issue in the past and can cause change again.
I would encourage everyone to get re-energized around this issue on September 18th so that we can better support this community. Linda Fried, who was the dean of the School of Public Health at Columbia, said back in 2010, that if we can figure out how to meet the care and support needs for older people living with HIV, then we have solved the problem for all older adults.