The good news is that people with HIV are living much longer than they used to; it’s estimated that by 2020, 70 percent of people living with HIV in the United States will be age 50 and older, compared to 10 percent during the first 20 years of the epidemic. The bad news? With this longevity come challenges that our healthcare system isn’t prepared to address. “When I began my career as a nurse in the late 1980s, HIV was pretty much a death sentence,” says Michael Relf, a professor of nursing and global health. “People living with HIV were told, ‘We’ll keep you as healthy as possible, but you need to get your affairs in order.’” But when combination antiretroviral therapy (ART) was introduced in the mid-1990s, the outlook for these individuals went from bleak to bright. And over time, as ART has become increasingly effective with fewer harmful side effects, the odds of longer survival continue to improve, necessitating a new focus on healthy aging for people living with HIV.
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For me, it is more about the long term effects that these medications have and combined with issues around aging. Many of us long term survivors feel like we are aging faster than our non positive counterparts. I would like to see more compassion for those of us who have lived through such difficult times and real issues, medically and emotionally that need tending to. I really do not want to hear one more person say: “well, at least you lived”. Yes, I did and I am grateful. But, that does not mean that I am not having a difficult time now. I have gone the majority of my diagnosis, with the exception of when I was first diagnosed, with very few problems. And now…I am experiencing a lot. It is important that while we seek support from our networks that the medical community remember that we are still here and it is not enough to just BE here.
As the population gets older, I think it will be a necessity to teach people living with HIV/AIDS how to live period. Many of our older brothers and sisters living with HIV/AIDS have lost a large amount of family members and friends, and they never expected to see today, let alone having planned for their future. It would be in everyone’s interest to focus on socialization skills and how to interact with others. Many of our aging brothers and sisters need to be redirected, I believe that there should be a bigger mental health component because people are dealing with issues they do not understand and do not know how to ask for assistance. I know there are changes coming soon as far as how the medications are administered; for instance the injections that are in the trial stages. I think that more information about PrEP should be available as well and targeted to the demographics that need it the most. I think moving forward the treatment should include overall wellness so that mind, body, and soul are all included and seen as one. One goal is to ensure that people are getting everything that they need to stay healthy and to have a strong immune system. I also would like to see more nutrition classes to provide a healthy choice for those that are interested, as well as how to grocery shop so that the food can last throughout the month. It would also be awesome if the transportation was adjusted to help older people get around with minimal barriers. The easier we make it for people to get to and from appointments the more that they will be inclined to go, as well as to run their errands which could be hectic for older people.
I believe there are two major problems the HIV community faces now since we are expected to live longer: HIV related illnesses, like cancer, are more common the longer we live; and the long-term side effects from the medications can be drastic, like kidney failure. So now the focus on HIV/AIDS needs to change. There needs to be research invested into these late stage HIV related illnesses: dementia, cancer and osteoporosis to name a few. With enough research there could be effective treatments and ways to prevent them. The medications that are saving our lives are also causing problems for us down the line. We need to invest in refining these medications and eliminating any possible long-term side effects and hopefully get rid of the short term side effects as well. By doing both of these the life expectancy of the HIV community would increase even more.
I am a 66 year old African American Lady and in the past ten years the decline of help financially and support have been denied to people ages 50 and up, heterosexual women and men including housing especially in southern states. In the past we had social dances, trips and boat rides, hotlines and support groups. As a widow, it is very important for me to meet and have a companion who understands what I am going through. I am not prejudiced towards transgender people, MSM, MWM, LBGTQ communities but I have noticed grants, money, support, pharmaceutical advertisements are all catering to young MSM.
As people are getting older with HIV I am not even sure if changes will be made besides the one pill a day. It would be great to see one pill possibly a week. Like all medication there will always be side effects because it is long term. It will be interesting to see what is next for treatment. Especially since I hear the possibility of going once a month for treatment with a shot which I personally would not do.
Just to keep encouraging our elders to also know their status. That they are not exempt. Recently, I had an older man approach my table at an event. Once I explained the campaign. He declined any information thinking that he was untouchable because of his age. I had to inform him that no matter his age. It can STILL happen to him. It has no age limit.
I think more studies on the long-term effects of an HIV regimen should be done. Even though I may live longer I often wonder what will my quality of life be especially taking all of these medications. We definitely need more skilled physicians who have experience with treating geriatric patients living with HIV. I am hopeful that with the proper research the long active Drug treatment will prove most beneficial towards living a longer healthier life.
Being a long-time Survivor with HIV and being on medication for the last 25 years, I think it is very important for physicians and the medical field in general to treat not only the ailments that come along with getting older but also the effects that being on medication for a long period of time has on the body itself. Not to get the two confused, but just getting older has its downfalls, the body gets weary and tired. But there is a great need for the study of the effects that medications have on the body, causing different ailments, as well as memory loss, mental, and emotional damage to the human body.
It is well known that with old age comes different changes to the body. A person’s appetite may change, there can be mood swings, and illnesses associated with aging. For me it would be maybe creating a space that brings more light and empowerment to older generations who are HIV positive. There are ways that time affects health that we can work on with specific doctors, but aside from working on more and more treatments at that age, I think helping to create more social support will bring a different sense of healing. I feel that at a particular age and after having dealt with doctors for so long, it would be nice to just have a place that continues to create that kind of social community without feeling like a Salvation Army or senior citizen place.
As we live longer with HIV, I feel the only progress we can make in treatment is a cure. Trials are already underway for a once a month shot. Maybe an annual/semi-annual shot could help the population.
We must be realistic when it comes to this population, willing to identify social deterrents that keep them out of treatment, also conducting or looking into studies that show the effects of HIV treatments on the body. We must also continue to teach sexual education, outreach, and promote testing in vulnerable communities.
Now that people are living longer with HIV, there is a ground breaking change. I feel like more outreach, including PSAs and events that promote awareness and continue to educate, remove stigma, and help people keep a positive outlook on life will be very important.
I think as people age with HIV our treatments plans will become somewhat different than when we were younger. I believe it is important to have a primary care doctor and specialists working together with our HIV doctor because long term HIV causes accelerated aging and comorbidities. Age related factors can complicate HIV treatment in older adults and our immune systems may not recover as well or quickly. Since we all want to stay as healthy as possible while aging it is important to stay on top of not just our t-cell count and viral load detection but to also be aware of and monitor other health conditions we may have such as diabetes, high blood pressure, arthritis, osteoporosis, heart disease, dementia and other ailments and illnesses that come with aging. I see other doctors for non-related HIV conditions all the time now. I do not know how much time I have left, no one does, but I am trying my best to make sure I am doing everything I can to stay healthy so I will be able to thrive and live well while aging with HIV.