A journalist by training, Meline Toumani shocked friends and family by moving to Turkey and embarking on a journey to understand a people and a country she'd been taught were the enemy. The result is "There Was and There Was Not," part political history, part deeply personal memoir.
According to some measures, more than half of the people living with HIV in the United States will soon be older than 50. These older patients are entering the phases of their lives when other chronic conditions, like heart disease and and diabetes, become more common. Kojo explores the public health challenges presented by the “graying” generation of HIV patients and what they may mean for the American health system as a whole.
- Donald Blanchon Chief Executive Officer, Whitman-Walker Health
MR. KOJO NNAMDIFrom WAMU 88.5 at American University in Washington, welcome to "The Kojo Nnamdi Show," connecting your neighborhood with the world. Later in the broadcast, "Love in Afghanistan," a play about navigating romance in a war-torn country. We'll talk with playwright Charles Randolph Wright. But first, aging with AIDS. It's been more than 30 years since the first reported case of HIV/AIDS.
MR. KOJO NNAMDIThroughout the 1980s, diagnosis of HIV/AIDS was a frightening and all but sure death sentence for anyone involved. But new advancements in medicine have made HIV/AIDS survivable. Many people infected with the disease who feared the worst now live into their 50s, 60s, and 70s. The Center for Disease Control estimates that by the year 2015, 50 percent of the HIV/AIDS population will be over the age of 50.
MR. KOJO NNAMDIBut aging with AIDS is something that presents an entirely new dilemma for our healthcare system. Joining us to explore these evolving challenges is Donald Blanchon. He is chief executive officer at Whitman-Walker Health. Donald Blanchon, good to see you again.
MR. DONALD BLANCHONGreat to see you as always, Kojo.
NNAMDIPeople have attached certain stereotypes to this diagnosis since it became part of the public conscience. One of those stereotypes has been that it's a young person's disease. But more and more people with HIV are living past 50, many of them getting to the age where they're eligible for Medicare. How do the profiles of those who seek treatment at a place like Whitman-Walker now compare to so many of those stereotypes people associate with this disease?
BLANCHONYeah, you know, it's one of those things where real life doesn't follow, you know, conventional or community wisdom. And the practical reality of it is, in Washington, D.C., for example, older cohorts, particularly older gay men, have a higher viral load or a higher concentration of the virus whereas younger gay men who tend to, you know, spend time and have sex with one another in cohorts don't have as much virus in that community.
BLANCHONAnd so you have this issue of, well, it's younger people who are sexually active. And then we forget most adult beings, regardless of our age, are sexually active. And we have this kind of misnomer in healthcare where we don't ask older people about their sex life. And yet we absolutely ask younger adults about it when we're treating them.
BLANCHONAnd I can tell you that firsthand from our experience at Whitman-Walker. So some of this is really a function of we make assumptions about people all the time, and we size them up by the way they look and the way they dress and how they talk. And we do the same thing around HIV.
NNAMDIBefore we go any farther, can you remind us what the role of Whitman-Walker Health is?
BLANCHONOh, absolutely. We're 40 years now of community service. We are a primary healthcare center with a specialty in HIV/AIDS care and LGBT health. We serve about 15,000 patients each year. At least 3,000 of them are getting direct primary medical care from us. About half our patients are members of the LGBT community. And about seven in 10 patients are people of color.
NNAMDIWhat, today, are the current demographics of the AIDS population in the District of Columbia?
BLANCHONIt's a great question. In 2011, in the most recent city stats, just over 15,000 people confirmed living with HIV/AIDS. Again, you know, the vast majority of them are people of color. The average age of an individual living with HIV is over 40. It's either 44 or 45, so that stems nicely with the notion of we've got an older cohort to deal with.
BLANCHONAnd then probably the thing we struggle with the most, day in and day out, still too many new infections. We had just over 718 new infections in 2011. Great progress -- we've halved that rate since 2007, but, you know, one new infection's too many in our community.
NNAMDIHave the demographics significantly changed over the past decade or two?
BLANCHONIt's actually remained pretty constant. And the one place where we're seeing -- there are kind of two places where we've seen a spike up. And the one that's gotten the most coverage is with African-American women in the city. And their incidence rates have gone up. And that has been a concern. And there's been a great community response to that from a whole bunch of different organizations, faith-based groups, the city, places like our organization and others.
BLANCHONThen the second group is the group that's 55 or older who, for whatever reason -- they may have lived through the AIDS epidemic. They know absolutely about people they've lost to HIV, and yet they don't see themselves at risk from a health perspective. And if they do get the virus, they know there's treatment, and they know there's a way to kind of live and continue to have a productive life. And it's that second group that we've really puzzled around because...
NNAMDIYeah, because I see where The Washington Post says nearly 11 percent of the 50,000 new infections each year are in people 50 or older.
BLANCHONYeah, it's striking. And this goes back to, you know, your opening remark about, oh, it's a young person's issue. And I'm like, it's not. I mean, we have, you know, seniors who are sexually active. We have older adults who are sexually active. And the greater challenge is is we have medication particularly for men, you know, whether it's a Cialis or Viagra.
BLANCHONAnd so you actually have these dynamics where we're promoting, you know, active sex lives for older folks. Then on the other side of this we're really not telling them about HIV and STIs, particularly in the District where we do -- unfortunately, for HIV, we have an epidemic.
NNAMDIWe're talking with Donald Blanchon. He is chief executive officer at Whitman-Walker Health. You can call us at 800-433-8850. What do you feel is not being discussed about HIV/AIDS that needs to be talked about? Tell us your thoughts at 800-433-8850. You can send email to firstname.lastname@example.org or send us a tweet, @kojoshow. What type of resources do older HIV/AIDS populations need that younger ones might not?
BLANCHONSo, you know, this is -- this goes to the heart of how we take care of older individuals in our community, which is you look at a cohort of people who have been living with HIV for 20 or more years, who lost many of their friends, their family, their social network. They have much greater risk for isolation in their home, in their apartment, in their condo, wherever they call home in D.C.
BLANCHONAnd so we really worry about people getting overly isolated because their support network is weaker and then dropping out of care. The worst thing that we can have happen to somebody who's HIV-positive is that they don't take their medicines and they don't stay in care.
NNAMDIA recent New York Times article says that -- and I'm quoting here -- "many people with HIV will not go to senior centers for fear of discrimination. As older gay men with HIV, they feel shut out from AIDS service organizations that are geared to younger or newly-infected men." Are there any measures in the District to treat that kind of isolation, the kind of depression that might be associated with having HIV/AIDS at an older age?
BLANCHONYeah. This is one of the places where, you know, the emerging trend for us at Whitman-Walker and other community groups is, you know, what's the service model? How are we going to reach people in home? And so I think places like ours are going to have to be more responsive to the needs of seniors in their home. You know, I suspect over the years we're going to develop a home visitation program both from a clinical -- a medical and a nonmedical perspective.
BLANCHONWe already do some peer support work with individuals. I think how we look at mental health issues, as well as physical health issues and where we're going to be able to find people and meet them where they are, this -- the issue raised up front in this question about the kind of traditional institutions or seniors, whether it's an assisted living or retirement community, what have you, those organizations aren't typically an affirming place.
BLANCHONThey are not always a progressive place. So individuals, particularly marginalized individuals, particularly gay individuals, believe that those aren't going to be accepting and welcoming places. And they're not going to turn to service. They're going to turn to a place that they trust, which means places like Whitman-Walker who has been in this fight a long time has to be responsive to that.
NNAMDI800-433-8850. Are you familiar with what it's like to grow older with AIDS? What difficulties do you face that the government and nonprofits should consider? 800-433-8850. You can send email to email@example.com. You can shoot us a tweet, @kojoshow. Don, for a long time, one of the biggest challenges people have talked about has been getting people tested, making people aware of their status. Where are we seeing improvement on this front? And where are we still coming up short?
BLANCHONSo the two places in the city where we've had tremendous improvement is is we've made it a routine part of healthcare, which means you don't necessarily have to come to a place like Whitman-Walker solely to get a test. You can ask your physician. And so that notion of getting it into a routine physical, the routine annual exam that you might take, that's number one.
BLANCHONNumber two, you know, you got to tip your cap to the District government who has accelerated testing over the last five years. We're doing more than 120,000 tests annually in the city, and that's a great effort to kind of destigmatize, demystify, and really make this something that, you know, you're an adult in your district, and you should know your status.
NNAMDII'm glad you asked that because my next question was about how would you grade the District government at this point in terms of its focus on the HIV/AIDS population? And in addition to testing, what else do you think it should be doing?
BLANCHONSo, you know, always a great question, and I always answer these things with both the joy and the caution that comes with being a community partner to the District government. You know, on a practical side, the District, you know, it's a solid B-plus, if not A-minus right now. And we've got really good things in play. You obviously have spent time covering on this show the needle exchange and the impact that that's had.
BLANCHONThat's been a huge success. We just mentioned the testing. That's a huge success. The third component is what call treatment on demand. And that means somebody is newly diagnosed, and they're immediately brought into care, within 24 hours. One of the biggest reasons we had high infection rates and high numbers over the last 10 years is people were getting tested. And they would test positive somewhere, and then we didn't link them to care right away.
BLANCHONThey left the site that they tested. And the District and the tester didn't know where they went for care. So you got a diagnosis, and yet we didn't know if you ever got back into care. Our own stats at Whitman-Walker showed we have about half the population not return for care. That's how you're going to contribute to, you know, having bad stats.
NNAMDIAnd talking -- speaking of bad stats, is the District still seeing the incidents of HIV/AIDS in epidemic proportions in most wards in the city?
BLANCHONYeah, it is. It's still -- you know, citywide, it's 2.5 percent. There's pluses and minuses. Most of the wards, I think with the exception of Ward 3, are all at 2-plus percent of higher. You know, the reality of this is -- and this should be seen as a good thing. You would expect that prevalence rate over time, if we diagnose and test and treat people right away, that that number is going to stay at that number and potentially creep up.
BLANCHONAnd that's because we're keeping people alive longer, and that should be seen as a good thing. The place where we need to redouble efforts is with those 718 new infections last year. What did we miss? Was it an education issue? Was it they didn't have a condom? Was it they knew the person they were having sex with was HIV-positive, and then they didn't seek treatment right away after it? I mean, things like that, we've got to get to the root cause of this last group that seems to be getting infected.
NNAMDIDonald Blanchon is chief executive officer at Whitman-Walker Health. He joins us in studio. You can join the conversation, 800-433-8850. Has your perspective about HIV changed over time? Do you still see it as a young person's disease over -- even though many people infected now live well into their time as seniors?
NNAMDIWe got an email from Jen who says, "I assume getting those kinds of treatments that extend life with HIV cannot be cheap, that people like Magic Johnson can afford them easily, but lots of other folks might not. Has treatment become significantly less expensive?"
BLANCHONYou know, from the initial days when medications came online, you know, the answer is yes. For the last 10 years or so, the price, the annual cost of the antiretrovirals, depending on what an individual's taking, is probably somewhere between twelve and $15,000. The bulk of the cost for HIV/AIDS meds are paid for largely either through Medicaid, you know, whether it's in the city or in other jurisdictions, as well as something called the AIDS Drug Assistance program, which almost every state in the country has.
BLANCHONSo there are programs available to help individuals obviously deal with the costs. These meds aren't cheap.
NNAMDIThat email, by the way, was from Richard. And the city just rolled out its own healthcare exchanges in response to the Affordable Care Act. Do recent implementations of the Affordable Care Act impact the older AIDS community in this region?
BLANCHONSo, you know, that's a great question. And we have an interesting economy, and particularly in our neighborhood and the Logan Circle area. We have a lot of individuals who are over 50 that work for themselves or work in small businesses and that they don't have access to coverage. And yet they still need treatment for HIV. And some of those individuals are on ADAP or on some other program.
BLANCHONWhat's really good about this is those individuals are going to be able to shop online at D.C. health link and they should be able to find some coverage that will be able to obviously cover the cost of their med, but also keep them in basic medical care. The biggest issue we have with a senior who's living with HIV is hypertension, diabetes, liver failure, all of the issues of aging that come from the fact that HIV is going to cause chronic inflammation. And that's actually the big challenge with treating people.
NNAMDIGot another email. "Could you ask your guest to discuss HIV Associated Neurodegenerative Disease HAND and its effects on the aging HIV population? That email came from Richard.
BLANCHONIt's a great email and I never pretend to be a clinician. And I know a little bit about this and so I'll give kind of a lay person's response to this. HIV has the effect of being not just a chronic condition, but it is an inflammation condition where your immune system is always on at some base level. And that ultimately causes some level of inflammation. That type of inflammation day after day, month after month, year after year will lead to degenerative conditions. And so, you know, the caller or the texter or the emailer in this case is spot on.
BLANCHONThere are neurodegenerative conditions that happen because quite frankly the body, the immune system is under siege the whole time that you're living with HIV.
NNAMDIThe 27th AIDS Walk is scheduled to take place in Washington this weekend. So many of these kinds of events are about raising awareness of a particular cause. When it comes to AIDS, where do you feel there are the biggest gaps in public awareness right now?
BLANCHONSo, you know, for me there's two things. And you touched on the first one which is it's a young person's issue, which we just continue to scratch our head about that. Probably once a week we diagnose somebody over the age of 50 living with HIV at Whitman-Walker. So that's a myth. And the second is, there's this issue that goes along that it's some other group's problem. And we're really good in Washington, D.C. at kind of dividing people up into groups by, you know, socioeconomic or demographic or some other, you know, variable.
BLANCHONThe practical side of it is that if, you know, you're sexually active in the district you should be worried about HIV. You should know about it, you should practice safe sex and you should get tested at least once a year. And I think people think it's, you know, oh it's for, you know, young gay men or, you know, older black men in a certain community or this or that. And what they do is they kind of rationalize the risk. And the reality of it is is there's risk pretty much in every community.
NNAMDIWhat would you like to see come out of the walk this weekend?
BLANCHONYou know, with us the walk is about two things. It's obviously clearly about awareness and getting people reenergized in fighting HIV and what it means. And we talk about it from a community level but I always come back to, you know, individual responsibility and individuals taking control of their health and wanting to live, you know, a longer and a healthier and a happier life. And so that's clearly a big element.
BLANCHONThe other is, you know, we oftentimes mark the legacy of the epidemic and we mark loss. You know, we want to see people mark hope and optimism. There's a lot more science, there's a lot more medication. There's a lot more tools for prevention. And I'm hoping, Kojo, you’re going to invite me here in a few years and I'm going to be able to tell you we had zero new infections in Washington, D.C. and we don't have to do AIDS Walk anymore.
NNAMDIDonald Blanchon. He is chief executive officer at Whitman-Walker Health. The 27th annual AIDS Walk is going to be held this Saturday, October 26 at Freedom Plaza. The activities begin at 7:00 pm. There's a 5K timed run that begins at 9:15 with the walk stepping off at 9:20. You can find out more information at AIDSWalkWashington.org. Don Blanchon, thank you so much for joining us.
BLANCHONAlways a pleasure, Kojo.
NNAMDIWe're going to take a short break. When we come back, "Love in Afghanistan," a play about navigating romance in a war-torn country. We'll be talking with playwright Charles Randolph Wright. I'm Kojo Nnamdi.
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