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Retirement Planning While Living With HIV/AIDS

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For many people who lived through the HIV/AIDS crisis in the ‘80s and ‘90s, this current pandemic is feeling eerily similar — housing issues, financial hardships, friends and family passing away. With all this hardship, the importance of community and taking care of one another has been highlighted in both the current pandemic and the historical epidemic.

“All of those kinds of issues that people were suffering from with the AIDS epidemic was kind of reminiscent of, it was reincarnated with COVID-19,” said Paul Glass, a 72-year-old gay retiree living on Cape Cod in Massachusetts. He has been living with HIV for the last 35 years, since 1987.

Paul Glass

HIV (human immunodeficiency virus) is a life-threatening virus that impedes the immune system’s ability to fight infections. Left untreated, it can evolve into AIDS (acquired immunodeficiency syndrome), a more serious stage of HIV. HIV/AIDS was heavily prevalent in the gay community in the ‘80s and ‘90s. This period of time is now referred to as the HIV/AIDS epidemic or crisis. Even though it affected millions of people, it was known as “the gay disease.” By 2000, nearly 775,000 people had died from the virus. Globally, as of 2020, 36.3 million people had died from HIV/AIDS.

Many people, particularly gay men, like Glass, who were diagnosed with HIV were told that they had just a few years or even months to live. A diagnosis was essentially a death sentence. And this impacted all facets of people’s lives, including finances. Ronald Stall, a former professor at the University of Pittsburg and pioneer of AIDS research, said that many people took their retirement funds and Social Security benefits out after they had been diagnosed, thinking that they may as well take advantage of life while they still had it. Many maxed out their credit cards, did bucket-list items, sold their life insurance and assets for money, and ultimately didn’t prepare for their future because they didn’t think there was a future for which to prepare.

With the development of life-saving medications for HIV/AIDS, people who had initially thought they didn’t have a future suddenly did. In 1987, AZT (zidovudine) was developed, changing the narrative for HIV-positive people. This was further accelerated in 1995 when folks started using a combination of three or more antiviral medications, known as the “AIDS cocktail,” which was even more effective than AZT alone.

One 63-year-old gay AIDS survivor diagnosed in 1987, who asked not to be identified for privacy reasons, said he went to a class in which people learned how to come to terms with dying because of HIV. In the last class, the instructor said “I hesitate to bring this up, but there’s some new medications that seem to be working, and if that’s the case, everything’s going to change.” And things did change. As more and more medications came out, the disease became less of a death sentence — people could learn how to live with AIDS.

Much to his surprise, Glass became a long-term survivor and lived far beyond what his doctor had initially told him. He now reflects, “I never expected to get to be this age.” Although many, many people died from the virus, many survived, even if they didn’t think they were going to. The Multicenter AIDS Cohort Study reported that nearly half of the participants agreed with the statement: “Because of the HIV epidemic, I never thought I would live as long as I have.” Glass stated that folks diagnosed with the virus “felt that death would catch them first. So it was to their surprise, they lived and to come to grips with, alright, ‘So now what do I do?’”

Now thrown into a situation that would have been unthinkable at the time of diagnosis, many AIDS survivors found themselves unprepared for the future. Stuart Armstrong, a LGBTQ+ financial planner practicing in Needham, MA, who started his work during the height of the HIV/AIDS epidemic, said, “I certainly know of quite a number of situations where people put off saving or investing a lot because of a very uncertain timeline of their own survival.” Stall said that, unless a person had family resources (many of which who did not because they were disowned by their families for being gay) or won the lottery, they were likely to go into old age financially unstable. Although some of this lack of preparation can be attributed to spending money like there was no tomorrow, there are other reasons that more substantially contributed to this.

One of the biggest reasons that AIDS survivors were unprepared for their futures is simply because they were young. Many of the people who were diagnosed were only in their twenties and thirties, and when you’re in your twenties and thirties, chances are you’re not thinking about retirement. Glass mentioned that people who were diagnosed when they were younger tended to have a more difficult time preparing than those who were diagnosed when they were older.

And in a very real way, the physical aspect of living with a potentially lethal virus prevented people from having the means to earn and save money. The symptoms of the disease — including fatigue, extreme weight loss, fever, nausea, persistent infections, and Kaposi’s sarcoma which causes skin discoloration and is a clear indicator that the individual has HIV — can interfere with a person’s ability to function and perform everyday tasks needed to survive, like going to work or cooking meals. It also makes people more vulnerable to other infections, such as pneumonia.

John, a 74-year-old retiree from the Boston area who asked that his full name not be used, was diagnosed with HIV in 1988. John said that living with and managing the disease is so taxing that it is a “side job.” And although medication exists to treat the disease it, firstly, doesn’t cure it, and secondly, comes with health problems of its own. Glass points out that this life-saving medication, which costs a lot of money (although is covered by Medicare), still has side effects that may cause a person to have to miss work. He said that there are “days that just, out of nowhere, you start feeling ill.” And that there are long-term side effects that he has to endure every day, like loss of bone density.

Having to live with an illness that may cause you to miss work means that you will not be able to earn as much money. On top of that, Frank Summers, a financial planner practicing in Charlotte, NC, that specializes in helping LGBTQ+ people, notes that the virus itself costs money, too. People with HIV/AIDS often have high-deductible health plans and have expenses such as medication. So although, like John said, it is like a “side job,” it is a side job that takes money away rather than provides it.

The stigma that came along with HIV/AIDS was also very painful. Glass said, “If you were openly gay and if you weren’t HIV positive, you soon would be, or you probably were and nobody told you… it already had that sort of stigma, and you could lose your job, your house, all of those things were at risk.” This impacted people’s ability to get and retain employment. An HIV-positive gay man (who wishes to not include his name due to privacy reasons) joked, “It wasn’t really very cool to be HIV positive back in the Eighties.” He said that when his illness progressed to the point where it was “obvious” he was sick with HIV, it became difficult to work and he had to miss work.

Although there is no current cure for HIV/AIDS and it is impossible to change the past, that doesn’t mean that young people with AIDS can’t anticipate their futures. Armstrong, the LGBTQ+ financial planner practicing in Needham, MA, who started his work during the height of the HIV/AIDS epidemic, suggests that, if they have the means, folks start preparing for their futures. He suggests that they begin by focusing on the basics — things like monitoring their spending, setting aside money during their earning years, and having an emergency fund in place. It’s also important to invest in insurance, specifically life insurance and disability insurance. For those who are still working, Armstrong said to be aware of your employee benefits, like health insurance, and take advantage of them. Armstrong has had many clients with a positive diagnosis who were able to take disability insurance, allowing them to retire early.

Joey Stemmle, a financial advisor practicing in Midlothian, VA, who works with LGBTQ+ clients, advises starting to invest as early as possible. One of the crucial things that allowed Glass to retire early was investing in a house once he developed the hope that he would live to see his future. In 2000, he bought a house on Cape Cod that he rented out to people and later used as an asset to help him retire, as it was somewhere he could live and initially earn a little money off of. After 9/11, he decided to move out of New York and go to the house that he bought.

Ultimately, change beyond the individual is needed. Stall said, “When we’re old, we should be able to rely on having basic needs met.” This means access to adequate medical care, housing, and other basic needs. There are many HIV-positive folks in different situations that have found themselves struggling with finances and fulfilling needs — those who were diagnosed young when they weren’t thinking about retirement, those unable to work due to health or stigma, etc. — and they deserve access to community and care, just like everyone else. Glass points out that there need to be more agencies to help AIDS patients and survivors like Fenway Health, a community health center for LGBTQ+ people based in Boston.

Although there aren’t nearly enough health centers such as Fenway Health, there is care for HIV/AIDS nationally. The Ryan White HIV/AIDS Program is a national organization that provides services to low-income, uninsured (or without coverage for necessary care), HIV-positive folks. They fund everything from medication assistance to legal services to medical transportation. You can find a Ryan White provider near you with this tool.

You can also find HIV/AIDS care by calling your state’s HIV/AIDS hotline.

Beyond government organizations and health centers, the community has knowledge as well. There are also online support groups and spaces, such as POZ Community Forums, where HIV-positive folks and loved ones can share information and support. The Well Project connects women and girls globally living with HIV so that they can offer support and solidarity with one another.

The COVID-19 pandemic can serve as a reminder of the lessons learned in the HIV/AIDS epidemic. Stall points out that it highlights the importance of community. “It would be about building the resiliency and keeping track of the things that kept people well,” he said. “And so, you know, creating connection, creating people looking out for each other. Which people in their seventies and eighties need in general.” Just like people need care for COVID now, folks who are still living with HIV/AIDS today need care, support, and community as well. Let’s take care of each other.