Achieve interviewed Dan O'Connell, Director of the NYS DOH AIDS Institute, and Corinda Crossdale, Director of the State Office for the Aging (SOFA), on New York State's response to the aging of the HIV epidemic.
Over half of all people with HIV in NYS are now over 50, and that number will rise to 70% by 2020. How has this changed the work your agencies do?
Dan: First of all, the aging of the epidemic is a sign of success. It's not that more people are getting infected at an older age; it's that the people who have HIV are growing older. If you look at where we are in terms of viral suppression, about 63% of people with HIV in NYS between 50 and 59 are virally suppressed, as are 68% of people over 60. That's far higher than the rates of viral suppression we have for people in younger age groups.
What are the reasons for those higher rates?
Dan: I think older folks are better at taking meds. I certainly take a lot of meds, so I know that being linked to regular health care improves adherence. With younger people, that's more of a challenge, because they're newer to the health care system. They don't always know how to use it, while older adults do. It may also be that things like substance use that can lead to poor adherence are not as common in older adults. I don't know for sure, so I think it's a good area for further study.
Corinda: One reason could be that our network of aging providers offers a support system for people with HIV. We work with DOH to provide training and education around HIV and self-management for chronic diseases. Older adults with HIV face the same problems as anyone who's getting older -- diabetes, heart disease, liver disease, cancer -- and we've educated seniors on those conditions for many years. We're building on what we learn as the number of older adults with HIV grows.
Dan: One of the problems we do still face is the assumption that older adults aren't at risk of acquiring HIV through sex or drug use. But older folks do get HIV, so we have to make sure that message is getting to medical providers. Unfortunately, they don't always do a great job of taking sexual histories in general. We need to make sure they're talking to older adults about their risks for HIV.
Have you encountered any resistance on the part of senior service providers in addressing this topic?
Corinda: The only apprehension we've received from the providers is, "How do we engage?" They want to, but they want to make sure that seniors are getting what they need. So the education piece is critical. How do you ask seniors about sex, and how do you build enough trust so you can draw that info out of them? We were pleasantly surprised about the receptiveness of senior service providers.
Do we need to work on having more open discussions about sexuality, including LGBT issues, so that seniors are comfortable talking about it with their care providers?
Corinda: We've begun that conversation and taken steps to start asking those questions and building that trust. Our questionnaire for services such as Personal Care Aide and home-delivered meals requires a comprehensive aging services assessment, known as our Compass. We've included questions about sexuality, including LGBT issues, in the Compass. We've had trainings by SAGE [Services & Advocacy for GLBT Elders], on how to ask those questions in a sensitive manner. We've had a training, in partnership with DOH, on HIV and hepatitis C. So it's a continuing effort -- not a "one-and-done". And a number of programs around the state focus specifically on LGBT issues. There's a senior center in NYC geared to LGBT people, and I believe one recently opened in Suffolk County as well.
What programs are effective in educating older adults about HIV prevention?
Dan: I haven't seen any evidence-based HIV prevention models that are targeted to older adults. The number of new HIV diagnoses among people over 60 is fairly low -- 5% of our total -- so if you go and talk to older people specifically about HIV, it may not resonate with them. Instead, we need to talk to them about sexual health in general. Certainly testing people for STDs, including HIV, makes a lot of sense. NYS recommends HIV testing for anyone up to age 64, and people who have risks -- say, those who have sex with multiple partners -- should be tested at any age. The real issue is getting providers to think about HIV in older adults, and for older adults not to think that somehow when they cross that 60-year mark they've become immune to STDs.
We've heard that there has been some resistance to routine HIV testing on the part of providers. Any thoughts on that?
Dan: Eliminating written consent was widely applauded by medical providers, so we're hoping that has an impact. But beyond hoping, we're doing reviews of the policies and procedures of all hospitals in the state. We're doing 5,000 medical chart reviews to determine how well the new law has been implemented. Overall, we get the sense that many hospitals and primary care providers are doing a good job, but certainly there is more work to be done. The Blueprint of the NYS Plan to End AIDS included a statement that we need to make routine testing truly routine. We're working to make sure that routine testing is being done, and we're having conversations with those who are not doing it.
Speaking of the Blueprint, it didn't have any specific recommendation on programs for older adults -- it just included them in a list that mentioned "young adults, adults, and older adults". Does it need more specific recommendations for older adults?
Dan: Well, if each recommendation said, "This is how it's going to work for Asian-Pacific Islanders" or "This is how it's going to work for older adults", the document would have been impossible to construct or to understand. So that section you mentioned listed older adults as being a specific concern. Two recommendations have language about older adults -- for example, that the HIV testing law should not stop at age 64. And the Blueprint is a living document. We have a committee in the AIDS Advisory Council for people to put new recommendations on the table. We're happy that the Blueprint generated so much support from the community and that people want to continue working with us on it. People are really invested in making this thing work.
How can SOFA and the AIDS Institute collaborate on HIV and aging issues?
Dan: More concentration on getting the issue out there. We don't need to create new systems -- we need to make sure the systems that are already in place do what they should be doing. We must make sure providers know that taking a sexual history is not just for people in certain age groups -- it's for people who have certain behaviors. The only way to know about their behavior is to ask, and to have an environment that is welcoming and safe. An older adult needs to feel comfortable bringing those issues up. And they may not do that if they get the sense that the provider thinks that sex is over for someone their age.
Corinda: I agree. You don't want to create whole new systems -- that becomes very confusing. Existing senior centers can include information in our education programs, and so can our settlement houses and our supportive services programs. They can all be used to educate older adults, and we can adjust our existing services to allow for the increase in the number of older adults with HIV.
GMHC just restarted its buddy program. Do you think that type of program might be able to give people more informal caregivers, rather than relying on formal networks?
Dan: I think it's is a perfect example of programs evolving to meet the needs of people coming through their doors. The buddy programs were first used when people were extremely sick and there was a lot of isolation. People were afraid to come into contact with somebody with HIV. That's not the situation we're facing now. We're looking at an aging population, so I think it's pretty smart to use buddy programs to limit social isolation and meet the needs of older adults with HIV.
There are programs that match up seniors with younger people. Could you see that as another way as enhancing support for adults with HIV?
Corinda: Absolutely, and I see it as a dual track. Not just matching up older and younger people, but also matching somebody who has had HIV for a long time with a younger person who is newly diagnosed. They could provide support for them, especially since we are seeing that older adults are better at adhering to medication. A mentorship model would be a great way to use their expertise to help younger people.
What's your vision for what NYS should do as the aging of the epidemic continues?
Dan: Addressing the aging of the epidemic is key if we are to reach the historic goal Governor Cuomo has set for the end of 2020. I'm confident that our HIV services will evolve to meet the ever-changing challenges this epidemic presents. The programs we had in the '80s, when HIV was very often a death sentence, were not the same as they were in the late '90s, when new medications began to significantly reduce deaths and disease progression. Since the early 2000s we've seen new diagnoses fall to levels we never dreamed of, and the changes made in our programs helped this happen. And we're still evolving. Program changes don't happen in a vacuum, but as a result of a dialogue among community members, service organizations, and government about people's needs and the best practices to address them. If there is something we can do better, it is to have the conversation about aging more explicitly and more immediately. We owe it to those who have lived so long with this disease to be ready with care and support services that are both welcoming and age-appropriate.