Growing older with HIV

On this World AIDS Day, the IAS calls on the HIV response to put communities first. This episode of HIV unmuted, the award-winning IAS podcast, puts the spotlight on a specific community that is often overlooked: people growing older with HIV. 

Remarkable strides in medicine and science have transformed the HIV response since the impact of AIDS-related illnesses in the 1980s, which claimed many lives prematurely. 

Thanks to access to life-saving treatments and proper care, it is now possible for people living with HIV to live into old age – something that was inconceivable 40 years ago. 

Globally, UNAIDS estimates a significant increase in people aged 50 years or older living with HIV – from 5.6 million in 2015 to 9.4 million in 2022. This generation now faces unprecedented and unique HIV-related health issues.  

In this special episode, we hear from people who have been living with HIV for more than 20 years, unravel the scientific dimensions of ageing, and discover how we can put communities first in the HIV response to address the challenges of growing older with HIV. 

On this World AIDS Day, we will never forget those we have lost in the HIV response, and we will never truly address the issues of growing older with HIV until we put communities first.  For more information, go to the IAS World AIDS Day webpage www.iasociety.org/WAD2023

Meet our guests: 

• Jules Levin, Founder of the National AIDS Treatment Advocacy Project, offers a first-hand perspective on navigating four decades living with HIV. 
• Reena Rajasuriar, Associate Professor at the University of Malaya and principal investigator for the Centre of Excellence for Research in AIDS at the University of Malaya, unpacks the scientific complexities of the ageing process for people living with HIV. 
• Lillian Mworeko, Executive Director at the International Community of Women living with HIV Eastern Africa and advocate from Uganda who has been living with HIV for 25 years, shares insights on prioritizing communities. 

Transcript

Welcome to HIV unmuted, the IAS – International AIDS Society’s podcast. I'm your host, Femi Oke. As we mark this World AIDS Day, HIV unmuted puts the spotlight on a topic that is often overlooked: growing older with HIV. Thanks to the advances of medicine and science, we've come a long way since the ’80s when AIDS-related illnesses took too many lives too soon. With access to life-saving treatment and the right care, people living with HIV can now live to old age. This was unthinkable only 40 years ago. 

Yesterday, for the first time, I just passed 30 years since my diagnosis for the first time, and I'll probably get emotional. I'm making a five-year plan. 

As people now grow older with HIV, it's becoming clear that they're facing a number of unique associated health issues globally. UNAIDS estimates that the number of people aged 50 years or older living with HIV increased from 5.6 million in 2015 to 9.4 million in 2022. With this number expected to rise significantly, we are in uncharted territory. Never before have we seen this number of people living with HIV for over 20, 30 or 40 years. Also to consider are the reported increases in people over the age of 50 who are newly acquiring HIV. Can the healthcare system really meet the needs of people growing older with HIV? Our guest, Reena Rajasuriar, an expert in ageing with HIV, helps us answer this question and more later in the episode. Lillian Mworeko, who has been living with HIV for over 20 years, tells us how we can put communities first to address this issue. But first, we talk to Jules Levin, a 74 year old who has been living with HIV for over 40 years. He's the founder and Executive Director of the National AIDS Treatment Advocacy Project. He tells us about being diagnosed with HIV and hepatitis C. 

I've had HIV for almost 40 years and I can tell you it's been quite a journey. I think nobody expected us to be where we are today in terms of ageing. I got HIV through IV drug use. When I found out I had HIV, I realized that I might have hepatitis C as well. And so, I got tested and found I had hepatitis C and I immediately started looking into treatment. 

Thank you for sharing your story with us, Jules. Can you help us understand why growing older with HIV is such a challenge? 

People with HIV suffer immune depletion and it gets resurrected a little bit when you start your ART regimen, your HIV drug regimen, but it never goes back to normal. There's always some dysfunction, especially for people who started with lower CD4 and you never fully recover. And this appears to cause a problem with people as they get past 50 and past 60 where people with HIV get a double hit from getting older and from HIV. And it seems to result in this accelerated or premature ageing where many of us are getting earlier onset co-morbidities. I had a fracture and osteoporosis at 52. It's quite a burden for me. People say, oh, you sound fine, but it's not really true. I suffer with a little bit of depression, but some physical impairment and mental or cognitive impairment too. 

Right? Mental health is one of the issues that is so often overlooked. So, based on your experience, do you think that the healthcare system is ready for people growing older with HIV 

In the United States, our HIV healthcare system is not prepared and they're not providing the care for people who are currently older and have these problems, and they're certainly not prepared for what's coming in the near future. And it's the same thing globally. The healthcare system is just too constricted, designed with a bottom-line interest simply. And it's becoming worse and worse 

If the healthcare system is not ready, what can people growing older with HIV do? 

I would advise them to be cognizant of these potential outcomes. Engage in a discussion with your doctor about co-morbidities like bone disease, heart disease, mental function, physical function, diabetes and kidney disease. And make sure that you have an ongoing discussion with your doctor who does lab work with you all the time and try and understand all your lab work so you can follow yourself over the years. The one thing we know is that physical exercise and good diet can be preventative in all these co-morbidities. And so, you have to take a mode of prevention, educating yourself and following your own condition through the years, and engage with your doctors about this. 

Thanks, Jules. Now we speak with Dr Reena Rajasuriar, who leads the programme on translational immunology and HIV and ageing at the Centre of Excellence for Research in AIDS at the University of Malaya. Reena, how does HIV influence the ageing process? 

There are a number of specific factors which contribute to the process of ageing. People living with HIV continue to experience this low level of immune activation or inflammation even while they're in treatment. And this tends to be higher in individuals who have prolonged periods of detectable virus or those who start treatment late. Second is our lifestyles, which may not favour the process of ageing, like increased smoking, alcohol intake and recreational drug use, which significantly contribute to a decline in health. Third is the HIV medication side effects that increase the risk of conditions like diabetes, high cholesterol and kidney disease. One last factor which we often overlook is the environment. HIV disproportionately affects individuals who are marginalized and who may have limited access to basic housing, food and healthcare. They also experience increased stigma and discrimination, which impacts social engagement and participation. All of these factors contribute to and influence how we age and our trajectory of ageing. 

Earlier, Jules Levin shared with us his own complex health journey. How do these health conditions impact people growing older with HIV? 

As people grow older with HIV, they are more susceptible to developing these co-morbidities and acquiring infections and this leads to them requiring more complex healthcare needs. And this may entail increased clinic visits to different medical specialities and the need to take multiple medications, something which we call polypharmacy. And polypharmacy can lead to increased side effects and potential harm from drug interactions. This also takes a toll on an individual's biological reserves or what we call frailty. So, frailty is a health state that involves the deterioration of multiple organ systems and this makes a person vulnerable to poor health outcomes. Someone who is frail will likely take a longer time to recover from even a relatively minor health problem like a urinary tract infection. And this is the reason why our HIV programmes need to evolve so we can address these issues early. 

The healthcare systems are not ready for the growing number of people living with HIV who reach older age. So, what should our healthcare systems be doing to prepare? 

Our health systems are not ready and, in many settings, especially those in low- and middle-income countries, HIV programmes will struggle to deal with the increased complexities of care in a growing number of older people with HIV. This requires additional medical specialities and resources to coordinate across multiple care providers. Now, HIV policy planning and programme execution have tended to be siloed. So, discussions on how to integrate additional services as part of routine HIV care need to happen now with primary care providers, with mental health specialists, allied health specialists and geriatricians as well. The care needs of older people with HIV become more complex and their support network will need to extend beyond the hospital system into the community. Now, in many settings, palliative and assisted living facilities are not part of the formal health system, and these centres may not have policies or regulations in place to adequately deal with the sensitivities and the needs of people with HIV. So, policy makers also need to look at strengthening community care infrastructure for older people so they can age in place with dignity. 

We've talked about the people living with HIV for many decades and the challenges they face, but I also wanted to speak to you about the increasing number of people over the age of 50 who are newly acquiring HIV. What is going on there? 

So, there are reports which have noted a steady increase in the number of HIV acquisition among individuals 50 years and older. But what is perhaps more concerning is that these individuals tend to present late to care. Now, there are a number of reasons which have contributed perhaps to this increase. Worldwide, life expectancy in the general population has increased and older adults are sexually active. However, condom use tends to be inconsistent in older adults. And this has been attributed to issues like erectile dysfunction and people being beyond childbearing age. In the Malaysian setting, we have found very poor HIV-related knowledge in older adults, and many of those who acquired HIV at an older age did not even consider themselves to be at risk. HIV testing also tends to be lowest in older adults even when they present with symptoms because these symptoms tend to be attributed to age-related conditions. 

It sounds like there are a lot of interconnected drivers. What can be done to prevent HIV and other sexually transmitted infections in older people? 

Most of our campaigns on sexual health and HIV prevention are targeted at younger men who have sex with men and other key populations. And the language and medium of communication used often do not resonate with older adults. Now, we probably need a multi-pronged approach. Interventions must specifically target older adults. HIV self-testing also offers more anonymity compared to facilities-based testing, which may be less desirable for older adults due to the perceived stigma and cultural conservativeness. So, campaigns which promote HIV self-testing need to be optimized in the older population. And finally, HIV healthcare providers need to continue to engage with older adults about their sexual health and promote PrEP and other HIV prevention services among those at risk. 

On a more personal note, Reena, was a moment that made you decide to specifically focus on ageing with HIV. 

Actually, there was at a conference, I presented the data on the burden of ageing, and someone from the community came up to the mic and said, Reena, what are you going to do about this? And that is the point where it hit me that it's not just about research. I guess that for me was the defining point where I realized that I needed to get out of the lab and start working in new areas, which I perhaps wasn't very trained in. But if I was going to make a difference, I had to do that. 

Reena and Jules are not the only ones who wanted to make a difference for people growing older with HIV. Our next guest, Lillian Mworeko, is a passionate advocate who's been living with HIV for 25 years. Lillian, tell us about yourself and your journey with HIV. 

My name is Lillian Mworeko, living in Uganda. I'm a mother. I'm a grandmother. I'm a housewife. I'm an advocate. I'm an activist and Executive Director of the International Community of Women living with HIV. I'm a woman living with HIV, now about 24, 25 years. I've been living with HIV and it has been a journey. And now finally, we are here. We have access to universal treatment. We are talking about ending AIDS by 2030, but for us who've been there, it's been a journey … all that we are seeing now wasn't there. We just struggled for every piece of everything that we are seeing now. And you can talk about treatment. You can talk about counselling and ending stigma and discrimination. You can talk about access to funding. All these we fought for as people living with HIV as communities, as advocates and as activists. It is a journey that has been full of ups and downs, lots of struggles, but most importantly, lots of commitment by the communities to say: we must see another day. We must make sure that everybody has access. 

You talk about communities. What about communities of women living with HIV? Tell us about the specific issues women face when it comes to growing older with HIV. 

One of the key things that I think is also coming out as we talk about this is that there's menopause for women living with HIV resulting from treatment. It affects their confidence; it affects their relationship. And then the second issue for women living with HIV is isolation. We are also hearing that women are losing their libido, which is low as a result of treatment. 

So, what can be done to address these challenges that women growing older with HIV face? 

One of the things that we need is to review our policies to make sure that we integrate key areas that concern people ageing with HIV. Because most of the policies that we currently have are specifically focusing on people within the reproductive age. We know that cervical cancer is affecting many women living with HIV. But if we are looking at only those who are within the reproductive age, we will leave out a critical mass of women living with HIV who cannot get the service and yet they need it. We need to be helping this category of people to make sure that they're sexually productive and that health rights continue to be fully accessible and enjoyable as a way of contributing to prevention. 

And what about more broadly? What do you think needs to change in general, not just for women ageing with HIV, but for all people growing older with HIV? 

We need to look at integration of services and make sure that if people living with HIV get into the facility, they're able to have a full range of services, including for non-communicable diseases, and counselling. Last but not least, there's a lot that we are going to probably experience in terms of mental health, dementia, disability. And therefore, we need to be looking at a policy that looks at all these integrated areas. 

All of our guests on this episode have talked about the importance of mental health and isolation among older people living with HIV. How do we tackle this issue? 

I think that one of the major key recommendations that we need to look at for this group of people that is ageing is, because of where they live and how we perceive older people, they may need to be attended to by their peers. So, we may now be thinking of creating peer support groups for older people living with HIV. 

Clearly there is still a long way to go before we meet the needs of people growing older with HIV, Lillian. What is your message for the HIV response on this World AIDS Day? 

As we come to celebrate yet another World AIDS Day as people, as communities, as nations, we need to remember that everybody matters. Every life matters. My call to action is: let's place communities at the centre. The communities should be telling us what needs to be done, how we are going to do it in terms of designing policies, programmes and implementation, and that we should be listening to the communities. Communities must be enabled to play their role. But as we speak right now, key populations are being criminalized and yet we are saying, communities are leading. So how can communities be leading when they are discriminated against, when their human rights are violated, when they're criminalized, and when they're not able to access the services. So, for me, communities leading means that whatever programmes, whatever policies, whatever laws we come up with must take into consideration the needs and priorities of communities. Short of that, it becomes just a statement. 

How do we move from statements to action on this World AIDS Day? The answer is clear: put communities first. We have heard in this episode about the complex needs of people growing older with HIV, and as more and more people are ageing with HIV, we need to act urgently on this World AIDS Day. We will never forget those we have lost in the HIV response, and it is now our collective responsibility to prevent the neglect of people who are growing older with HIV, who will never truly address the issues of growing older with HIV until we put communities first. As Lillian said, let's place communities at the centre. There's nobody who's going to end AIDS. Let communities place themselves at the centre. 

This World AIDS Day episode was made possible by the support of Gilead Sciences. Gilead has not participated in the development of the content of this episode. We thank Gilead Sciences for their support. I'm Femi Oke for the IAS – International AIDS Society's podcast, HIV unmuted, and you can’t keep us quiet.