hi i'm tom callahan and welcome to only seniors thirty years ago if you were diagnosed with hiv or aids you were guarantee the death sentence but just the dancers have drug and health care people with h aids are living much longer in fact september eighteenth is the national in child b and aids awareness day my guests today are terri clark from action aids and mark printing the director of research and to the growing recognition that the population with hiv is growing older and largely for the reasons you outlined most of these folks are long term survivors who have been living with hiv for twenty years or more there are a small proportion of people who are newly infected because people over the age of fifty or are still sexually active but the c d o see us to me it's that this year half of the people living with hiv in the united states are over the people are concerned that our government community agencies health care providers aren't really prepared for the screwing influx of older adults with h i v and it's not just happening here you look at that western europe other countries like brazil that have long and easy access to the hiv medications and you see a very similar aging of the population and even in sub saharan africa where adults to over fifty only make up ten percent of the thirty million or so people who are infected with hiv that's still three million people in sub saharan africa who are aging with the virus yeah it really is due in fact to the advancements in treatments and trying to get people tested so that's the only way that you know if you're hiv positive is to get tested and with our folks who are already living with hiv you know there are the goal there is to keep them engaged in care and on medications but for folks over fifty who have never been tested who are still in behaviors are exposing them to h risk testing is really important and one of the goals of this campaign is to increase awareness amongst health care providers who work with older adults and then older adults themselves to access testing services and if they are positive to engage in treatment and care ok let's start with the big question what are some of the big issues facing somebody with hiv and aids as they age well this is you know a success story because of the medications but there are a lot of challenge the success and one thing we see as a phenomenon that's some people call excel rated aging some people call it science weighted aging the jury is still kind of out but it seems the more recent things i've been reading seems to be pointing to an accelerated aging at the cellular level what that translates into is that people with hiv in their fifty's and sixty's tend to have a lot of co morbid conditions or other health problems in addition a hiv so typically we see three co morbid conditions in addition to hiv and you usually don't see that in older adults until they're starting to get into usually their seventy's and their eight so they're dealing with a hyper than of illness and unfortunately because of their age chronologically you know they're most of these older adults are between the ages of fifty and sixty i think the median age now is approaching fifty nine but that's below the threshold to get access to a lot of programs that are designed for older people which tends to be age sixty or sixty five so for example one of the things that we talk about is we already know how to care for older adults there's this whole area of geriatric medicine that edition addresses these issues of multiple co morbid conditions and then medication issues pol pharmacy that can result from dealing with all these many conditions but we have a shortage of geriatricians in this country anyway and then you know the issue is how do you infuse principles of geriatric care into the care of the older adult with h i v it doesn't really make sense for hiv physicians and health providers to suddenly become experts on aging since we have geriatricians insurance colleges and all these people who are very knowledgeable in the syria how do we mainstream older adults with hiv into these services yeah and one of the other challenges with the long term survivors of the hiv aids stigma and stigma is still very much alive and it has changed its face over the last thirty years but it still prevent prevents people from disclosure disclosure of their status to their partners to family members to potential caregivers stigma facts people's ability to want to get tested to follow up in the medical care talk to their providers about their sexual behaviors in terms of prevention you know folks we talk about primary prevention and secondary prevention so primary prevention helping someone not get hiv is secondary prevention is helping people who are already positive prevent reinfection with a different strain of hiv related infection or co infection with sexually transmitted infections so it's still important to talk to folks for each of the positive about safer sex and using condoms and risk reduction messaging and then also transmission helping folks who are hiv positive prevent transmission so there's still all that work that needs to be done even though folks are already living with the virus  on a couple shows back i had a guest talking about energy bt ageing and one of the things that came up was the fact that people are going back into the closet so is that something that we're seeing also with people who are hiv positive that they you mentioned you know not disclosing are they going into facility based care were seeking care and then not disclosing their conditions when the research we've done on the finds the disclosure to health care providers is probably the highest level of disclosure so in the study we had done in new york city we found that about ninety percent had disclosed to at least one of their health care providers and that kind of makes sense in that setting the you're going for health care that's one of condition th providers usually ask about when they're taking a medical history or doing any kind of screening but to having a hiv can have an impact on what course of treatment might be prescribed for you depending on you know what the medical condition is where we see not as much disclosure is to family and friends where are approximately i think two thirds of disclose to family and friends so the issue there is that you know for most older adults we turn to family and friends for caregiving support as we get older to help us live independently in the community and you know take care of things usually you know those instrumental activities of daily living things like that and so we don't see the disclosure there so if their family and friends don't know they have a problem they may not be you know as attentive to their needs or realize that the person an older person with h l v needs help the other issue though when you're looking at the social supports the systems is that older adults with hiv regardless of their sexual orientation or gender identity to have tend to have these very truncated front center social networks much like we see in the old g b t community and when we ask them who's going to take care of you when you get older and you might need caregiving most of the time though they will say their friends but over half of these friends they report also have hiv so are those friends really going to be in a position to provide that kind of care giving support when it's needed and then there's all the other complications of not having a biological relationship to a care recipient when legal issues come up health care proxies that kind of thing so we're really concerned about the ability of people aging with a view to access these informal social care resources and at the same time we see because of that a very high utilization of government and community based services in this group hiv services aside and i think it's very important to bring up that the fact that this isn't just these people who had been diagnosed years ago and not disclosing what are we saying well i haven't broken that down but in the study i'm talking about the average length of time living with hiv had been thirteen years so there were of relatively small proportion of people who were newly diagnosed the problem or the question around disclosure is it doesn't always make sense to disclose to everybody often you know we asked people reasons why they didn't disclose and these reasons range from concerns about what people would think about them that they were a drug user or that they were gay or premiss you with or you know was describing all kinds of moral judgments to them because they became infected with hiv but you know to physical violence some stuff some reported they didn't want to disclose because they feel physical violence even to the extent that someone might kill them now would that be physical violence from the community they're living in facility caregivers this would be from their informal network or whoever you know whatever that no you happen to be but you know are there is i don't have a lot of data on it but anecdotally i know of a case it was a retired university professor in kentucky he had been married had children but later came out as a gay man had  hiv they admitted him to this long term care facility and all was going fine until they found out he had h i v and pretty much packed up his bags and shoved him out the door and this was a person you know of pretty good economic means pretty pretty well educated you know he had a lot more resources than a lot of people growing older with hiv who were poor people of color who live in intercity neighborhoods who don't have those kinds of personal resources you bring up something very interesting in there  the fact that a facility kicked the gentleman out i once was working with a facility the the head of the nursing center for the facility said we will never take anybody with h i v because we just don't know how to handle it and i thought that was a very poor representation of and iching elder care facility especially in light of what we're discussing today so yes you know this is not the reason for a facility trying to push you out unless they kick really push you out the door well and the groups that i've been working with in in philadelphia i've had folks in long term care services call me up and say we're now you know have someone living with hiv can you come in and do a staff training you know how do we you know prevent transmission and it really boils down to universal precautions but again a lot of when we talk about hiv there's such a strong stigma attached to that that people are afraid  you know just there or there they've got prejudgments over folks who are living with hiv but that person supposed to look like what they're supposed to how they're supposed to act so really a need for training and education and i just wanted to come in and one of the programs that actually it's our first to our community we're pennsylvania's largest case management agency for people living with hiv and we have a buddy program that spanned x actually how actually it was founded nearly thirty years ago was that folks were coming together to really see their their friends and lovers died and that by the program has now evolved into over two hundred volunteers who are the social supports to our clients they go to movies together or they make regular phone contact they have a cup of coffee but that's one of the ways in which our agency is helping to support folks living with hiv and specially older adults who mark talked about how their social circles are  shrinking and that you know we can provide that service as part of our case management in our in our services to folks in unity you bring up two good points i want to address also in there the fact that they're even though thirty years later and we have these treatments now that are extending life there's still that stigma from thirty years ago you would think we as a society would have moved past that and we should move past that it's about time the other thing was great here is that there's training that you can go in and do for staff or absolutely it's very important because not only is there cultural comps the training for addressing different backgrounds of staff of residence in facility based care but now we need to add this training as  well just because you admit somebody to a long term care facility doesn't necessarily mean that the staff has all the training so if you have a loved one who's in a facility please reach out to the management of that facility ask them if they've had these trainings and if not we're going to give you the contact information for terri afterwards some a little bit more about the barriers to care what else is preventing people from going out there to seek what they need to  cost of medication can be a barrier for some folks not everyone has access to resources i mean living in a place like philadelphia new york city some of the more metropolitan areas of new jersey can make access to medical care easier for folks who are living out in rural parts of our states that can be a difficult access and we i mean i can speak from the work that i do throughout pennsylvania people are living with hiv across the state so it's not just you know i'll be live in new york or you live in philadelphia live in san francisco or we're all over the states so i think some of that's the challenge in transportation and centers of care so each of the specialist providers who know how to treat someone we do a lot of trainings both locally and nationally on h l v in aging we're in our ninth year now of funding through the new york city council to run h b in aging programs in new york city and we're supported by the fun to do the work nationally and it's very interesting we find not surprisingly senior oriented providers tend not to be so knowledgeable about hiv but when you go to hiv providers they service organizations different community based they're very knowledgeable about hiv but know very little about h o b an aging and their service sector tends to be very youth focused and for good reason because when you look at rates of infection they tend to be higher in  younger individuals but we really feel that that eighty s o's and other c e o s addressing a hiv i need to look beyond prevention now we need to start looking at caring keeping people engaged in care this whole movement towards treatment as prevention is premised on the idea that you get people tested for hiv when they test positive you get them linked to care when they're willing to care you get the money into anti retroviral medications and it he to those which will get their viral load down to undetectible at that point their chance of infecting somebody else becomes very very minute and so if we can move enough in that direction the epidemic should collapse but when we look at what these so called treatment cascade for hiv and aids of the one point two million people in this country who are infected with hiv only about eighty percent of those have been tested and know their status and the proportions then who are engaged in care were engaged in care receiving treatment just keep going down we find only about twenty five percent of those who are hiv positive are engaged in care it here are two medications and haven't detectable viral loads so even in this country we have a long long way to go with that and the whole treatment as prevention paradigm has really replaced a lot of the community based and that the c d c was promoting for many many years now the problem goes back and this is something terry had mentioned before testing rates among older adults are very very low and what we find is that with the older you are when you test the more likely you are to receive a conqueror an hiv and aids diagnosis which is that that means either that your immune system has collapsed technically speaking your c d four count is below two hundred at which point your body isn't functioning well physically or the presence of some kind of opportunistic infection associated with hiv so when we look at the very younger group say young adults  adolescents conquer the aids diagnosis or about a third you're looking at adults fifty and older it's closer to half which means they're being tested later after infection and that the diseases had a chance to progress so so that so that's bad to begin with but then when you start looking out in terms of care and treatment issues the earlier you get put on a hiv medications after infection the better your long term prognosis is going to be the more likely you are that you're going to avoid those other co morbid conditions and that's very contrary to in the old days when there wasn't a large supply of the inner retroviral they were saying oh wait your cd four count gets down to five hundred or three hundred or below two hundred now we know the sooner you get on the medications the better your your long term outcome is going to be you know a lot of you know encouraging older adults to get tested is an important but then also working with health care providers who are serving older adults to talk about sexual health and we can't talk about hiv without talking about sex and that will put older adults in the mix you know and we have a whole lot of you know mum's the word in there many many missed opportunities for education for testing for care for treatment so in in condom use among older adults is a very low too and a lot of that circles back to sexual functioning and how our bodies change and how they work as we age and male body persons are not you know willing to put a condom on in their reaction and that's very real for for many people so how can we educate older adults and their partners about options right options to using condoms or how to use a condom and still maintain an erection and providers are comfortable with those conversations by mark and i'll have them call so i got you got some  tricks it's funny people think you know they don't want to talk about seniors in sex but guess what folks they're having sex lives trust me they are having sex they are but interesting lee very few people talk to their physicians about their sexual activity over the age of fifty study that was done by stacy lindo out of the university of chicago that that's now some are eight years old found that about thirty eight percent of her national sample had ever talked to a physician about sex after the age of fifty and there was a sharp gender difference there and it was more men than women i think the proportion of women was only around twenty percent probably because they were period or post menopausal for men we think the proportion is higher because they want the erectile  dysfunction medication so they're going to bring with so much but then they don't talk about condoms when they talk about erectile dysfunction medication so it's we're we're providing band with the drug to get an erection but we're not talking about condoms however you or she could be spreading something and that's that's the major point that people forget they think ok we're safe nobody's going to get pregnant we're good right and it's not it's all if there is disease out there we're seeing it we're seeing facilities senior care senior living communities facing a very high proportion of s t d's well i know i did a lot of older adults don't have the information they need one of the things that i'm doing in in philadelphia is working with aging services and doing a sex s full aging program so educating older adults about the importance of intimacy talking about intimacy sexuality sexual health and in order to  successfully we need to have sex us for aging so kind of trying to tie in those two things and an older adult love and they want to talk about it they have questions there they need validation and it's usually the pushback from staff we don't the older adults don't want to talk about this members don't want to talk about this now trust me they are all they was like about it that people don't want to talk about as a step they're like we need to talk about it national each id an aging awareness day september eighteenth tell us more about that what's going on what are some of the programs where can people find information about this this was organized by the aids institute down until florida and they have a whole state steering committee and a website so i think if the viewers google nationally hiv in aging awareness day it will come up pretty quickly sorry i don't have the the website with me i think actually is it the aid stock of is it that when they might they might be able to information there but if they just google the awareness day nationally each of you needs awareness they they they should come up and there's a whole website devoted to the stay with a list of activities and various regions  some of them are things you can go to there is weapon ours all kinds of events associated with that so i'm sure there are things happening in the syria i know we're doing three weapon nurse that week so if you go to w school p c a philadelphia corporation for aging and carrie which is the center for advocacy for the rights and interests of the elderly and we're working together to do a week long programming at jefferson medical school targeting their medical students around the importance of talking about hiv being aging so philadelphia based folks that press will be out in the coming days probably because terri how can somebody get in touch with you to find out more that would be terr clarks t clark at action aids dot org well terry and mark thank you both for being on my show and for bringing this very important subject to the forefront just because  doesn't mean that you're safe from disease and again people with hiv and aids are living longer and there's still a life to be led i'm tom callahan thank you for joining me on on the seniors