An important issue raised was the gap between the beginning age for accessing aging services, which is 60, and the 50+ HIV-positive population -- a ten year service gap. So even if we educate aging service providers and encourage older people with HIV to use aging services, those aged 50 to 60 are unable to.
Also, aging service providers are not asking about sexual orientation and gender identity, and though they ask about every other health issue under the sun in case management services, they do not ask about HIV.
-- Tom Weber, SAGE Advisory Group Member
Maybe you didn't know.
Maybe you were listening but didn't really hear an important but often overlooked fact about the HIV epidemic.
Half of all people with HIV in New York State are over 50 years old. That's also the case nationally.
And it's estimated that number will rise to 70% by 2020. In addition, one in every six new HIV diagnoses in New York occurs in older adults.
There's another important fact about people over 50: the older they get the less likely they are to be offered an HIV test. And older adults are more often likely to be diagnosed with AIDS at the same time they first find out they have HIV. This "concurrent diagnosis" highlights the lack of testing efforts targeting older adults, since people often take ten years or more to develop AIDS once they have HIV.
Unfortunately, studies also show that condom use drops significantly in people over 50, while sexual activity (and HIV and STD risk) continues into their 80s and beyond. Still, most doctors don't talk to their older adult patients about their sex lives. One reason is discomfort with the subject, and another is the myth that older adults just don't have sex.
The needs of older adults should have been an important part of New York State's Plan to End the Epidemic (ETE) by 2020. But if you look at the "Blueprint to End the Epidemic" -- a document of 30 recommendations the ETE Task Force created in 2015 -- you won't find a single reference to older adults. In the original 44 Blueprint recommendations (distilled from over 300 community recommendations) older adults were mentioned four times, but the final document included only 30 of those recommendations, and all mention of older adults disappeared. If there's one thing we know about advocating for scarce funding it's that if you aren't named you don't get the resources.
Addressing the Needs of Older Adults
During the six months after the Blueprint was accepted by Governor Cuomo in April 2015, ACRIA and other community-based organizations that focus on HIV and aging got to work to change this. The NYS Department of Health AIDS Institute responded to concerns about the impact of the epidemic on older adults. In December, they helped ACRIA establish an "Older Adults and HIV Advisory Group", to write a report on strategies that would make the Blueprint relevant to older adults. It was essential that their needs not be forgotten in the ETE planning and implementation process. Older adults would be named!
The Advisory Group started as a handful of organizations led by ACRIA, including SAGE, LiveOnNY, AARP NYS, NYS Office of the Aging, Housing Works, the NYC Department of Health, and the AIDS Institute, but quickly grew to over 70 people representing HIV, aging, faith, and community-based organizations, along with community members from across the state.
The group was divided into Core and Full groups, with Core members agreeing to do the majority of the work, to meet monthly in Albany and NYC, and to write a report within six months. The Core group made decisions by consensus, and brought in outside experts to address knowledge gaps in areas like the Delivery System Reform Incentive Program, how to work with current and former inmates, and how to address the needs of older transgender adults.
Their report, Older Adult Implementation Strategies, was presented to the NYS AIDS Advisory Council ETE Subcommittee on August 12, and was approved by the full Council on October 7.
The Report is broken down into 67 strategies specifically for older adults. Let's look at four areas where these strategies have already begun:
The report included a number of strategies to offer providers training on older adult issues such as:
- Sexual health
- Initial HIV infection
- HIV treatment and prevention
- Chronic disease self-management
- PEP and PrEP
- Use of multiple medications
- Transgender issues
Training HIV providers about aging issues, and training aging providers about HIV issues, is also key since one often doesn't know much about the other's issues. Other service providers who have been left out of the HIV and aging loop also need to be targeted for training: correctional facilities and re-entry programs, long-term care facilities, care coordination programs, senior centers, faith-based and community based organizations, and "Health Homes" providers.
ACRIA has provided HIV and aging education, training, technical assistance, and capacity building to NYC HIV and aging providers for the last nine years, with funding from the NYC Council. The programs help organizations through HIV treatment and prevention education, along with social media campaigns, such as the "Age Is Not a Condom" campaign, in high-risk neighborhoods. ACRIA also provides direct services to older adults through HIV testing and education.
In 2008, AARP sponsored the SAGE National Conference on LGBT Aging to send a message to the LGBT community and to show that AARP was paying attention. Since then, AARP and SAGE have worked to deepen this partnership. SAGE is providing online training to AARP State Offices on subjects including:
- Introduction to LGBT Aging
- Embracing LGBT Older Adults of Color
- Transgender Aging: What Service Providers Need (and Don't Need!) to Know
- Respected and Whole: Preventing Anti-LGBT Bias Between Constituents, Staff, and Across Aging Services
- Asking Demographic Questions about Sexual Orientation and Gender Identity
AARP publications such as AARP Bulletin and AARP The Magazine now include LGBT voices in their mix of 50+ people and stories, and their website features an LGBT section (aarp.org/pride).
Another strategy that has had success is testing and prevention tailored to the needs of older adults. SAGE currently offers case management, caregiver support, bereavement support, friendly visiting, and E-LINC, which provides comprehensive health services to LGBT individuals over 50.
Senior centers serve people age 60 and up, but the largest group of older adults with HIV are between the ages of 50 and 60. SAGE recognized this and arranged to have HIV testing in all five of its New York City centers, often through E-LINC or health fairs, offering testing in each site at least annually.
The newly revitalized SAGE Positive program coordinates all SAGE HIV-related services, including E-LINC, under one umbrella that mirrors the Governor's plan to end the AIDS epidemic. SAGE Positive relies on collaborating with community partners, including AARP, to provide its services.
In addition, the "End AIDS NY 2020 Community Coalition" has advocated for the State to change HIV testing law to address the needs of adults over age 64. After over a year of advocacy from this coalition of more than 65 organizations, New York State is finally in the process of lifting the age limits mandated for routine HIV testing, changing them from age 13 to 64, to 13 and up. The bill has been passed by both legislative houses and is currently waiting to be delivered to the Governor for his signature.
Data and Needs Assessment
A needs assessment tool is critical to create the evidence base of data to develop targeted interventions (such as getting people linked to care, on treatment, and virally suppressed) that older adults with HIV need. Recognizing this over a decade ago, ACRIA launched its seminal Research on Older Adults with HIV (ROAH) study in 2006. ROAH was the first, largest, and most comprehensive study of its kind and remains so to this day. Over a year ago, ACRIA began an update entitled ROAH 2.0. Its goal is to improve the services provided to older adults with HIV. The study directly coincides with the ETE plan and the Advisory Group's report.
ROAH 2.0 plans to study three groups in New York: 500 older adults with HIV from NYC whose responses will be paired with their clinical records from Weill Cornell Medical College; 500 older adults with HIV recruited from NYC community-based organizations; and an upstate/rural sample of 450 older adults with HIV. Given the lack of focus on upstate and rural areas, this last sample has significant importance.
ACRIA also plans to establish a longterm cohort with data collected every few years. This will enable the study to monitor participants as they age into their 70s and 80s. ACRIA has raised funds for the first two groups, and data collection has begun. Funding for the upstate/rural sample is still pending.
At present little emphasis is placed on offering PrEP to older adults. The Report's introduction states five reasons to change this:
- Half of men over 40 have erectile dysfunction, making condom use problematic.
- Research shows that few older men or women use condoms, and use decreases with age.
- Providers are not discussing sexual health with the majority of their older patients.
- Older women may have difficulty negotiating condom use, which could lead to abuse. PrEP allows older women to be empowered about their sexual health.
- HIV testing rates among adults over 50 are very low. Encouraging PrEP will increase HIV testing, since regular testing is an important part of PrEP.
The AIDS Institute ran a social marketing campaign titled "HIV Prevention Just Got Easier" in 2015 that did include older men. It targeted Black and Latino transwomen and men who have sex with men, and, significantly, two of its 13 models were older adults. These bus shelter and transit ads were also placed in Rochester, Albany, Buffalo, Hudson Valley, and Long Island -- targeting high prevalence counties outside of New York City.
We have to remember that older adults are not just one group, but many -- including LGBT older adults, Black and Latino older adults, and older adults in their 50s to 90s. Groups with specific and different needs, whose common ground is that they are aging with HIV.
-- Advisory Group Member
Where Do We Go From Here?
How will the Older Adults and HIV Advisory Group be used, and by whom? What will happen to the Group's members now that their initial task is completed?
The answers involve public health policy and the politics of advocating for scarce resources. The ultimate goal is that the report will be taken by the AIDS Institute and used as a template for ETE work with older adults throughout New York State and the U.S. From the beginning, ACRIA believed this would be an evolving process that extended into the future, and would include current and future members of the Advisory Group. ACRIA believes the Report should serve as a tool for advocacy and education, and should be distributed at conferences. It's essential that its recommendations lead to change and are not simply left on the shelf to gather dust.
Action needs to be taken to make sure there is follow-through -- to ensure that policy makers, providers, and leadership continue to listen and to hear the needs of older adults at risk for and living with HIV.
One action is the evolution of the Older Adults and HIV Advisory Group into a statewide Older Adults and HIV Coalition. This coalition could then advocate for both the implementation of the Report and the implementation of high-priority strategies.
Another strategy is to address areas outside of New York City with high HIV rates, such as Westchester, Dutchess, Nassau, Suffolk, Erie, Monroe, and Albany counties, where resources for older adults are limited.
We must also address depression and social isolation. Older adults with HIV report depressive symptoms at five times the rate of the larger community and HIV-positive older adults are often socially isolated due to stigma (homophobia, racism, AIDS-phobia, ageism, etc.). Over 70% live alone, and fewer than 20% have a spouse or partner, with many estranged from their families. Screening to identify these conditions and interventions to address them as the population continues to age is critical.
The second action -- and a priority task of the new coalition -- is sending the Report to HIV, aging, faith, and community-based organizations across the state and the U.S. This low-cost action will:
- Raise awareness of the needs of older adults at risk for and living with HIV.
- Educate them on strategies to address these needs.
- Develop collaborations in programs, advocacy, and applications for funding.
We must remember that more than 65,000 New Yorkers with HIV are over 50. We're optimistic that the steps discussed in this article will contribute to the ETE Blueprint goal of achieving fewer than 750 new infections per year by 2020. But we are also aware that much remains to be done. The needs of older adults aging with HIV are present in the here and now. They are dealing with issues of treatment and prevention, multiple illnesses, depression and isolation, too many pills, and a sometimes lower quality of life. Any plan to end the epidemic must include their concerns.
Leo Asen is AARP NYS president and a member of AARP Board's National Policy Council. Joe Lunievicz is deputy executive director for programs at ACRIA.