Stories of Older Adults with HIV/AIDS

large_aids_day_GenLogo_RGB300-150x150This piece originally appeared on the NHCOA blog.

HIV can infect anyone, at any age, if given the chance. However, it does disproportionately impact certain populations. HIV/AIDS is a serious health concern for older adults; today adults 50 years of age and older account for 32.7% of HIV diagnoses in the U.S. Furthermore, the Centers for Disease Control and Prevention (CDC) estimates that this number will increase to 50% by 2015. The numbers don’t lie: HIV can, and often disproportionately, affects older adults, parents and grandparents.

Contrary to popular myths and stereotypes, some seniors engage in behaviors that put them at risk for HIV, including unprotected sex, sex with more than one partner and substance abuse (including injecting drugs). However, many older adults either don’t know they are at risk of infection or have HIV and don’t know it – HIV can remain silent for many years, and they are not aware of their status thus not receiving treatment and potentially infecting others.. Traditionally older adults have rarely been targeted in HIV/AIDS prevention and awareness campaigns. Subsequently, many do not realize that their behaviors can put them at risk for HIV infection.

In order to address this disconnect, the National Hispanic Council on Aging (NHCOA) joined the Act Against AIDS Leadership Initiative (AAALI) – a partnership between the Centers for Disease Control and Prevention and leading national organizations representing the populations hardest hit by HIV. NHCOA, Farmworker Justice and ASPIRA are the only AAALI partners that are dedicated to serving the Hispanic population. As AAALI partners, each organization promotes HIV/AIDS awareness in the communities they serve through three main messages: get the facts, get tested, and get involved.

Each year on September 18th organizations and community leaders across the country come together to raise awareness of the impact of HIV/AIDS on older adults by recognizing National HIV/AIDS and Aging Awareness Day (NHAAAD). NHAAAD is a powerful opportunity to highlight the complex issues related to HIV prevention, care and treatment for aging populations in the U.S. It’s important that we talk with the older adults in our lives about HIV/AIDS today and throughout the year in order to help them get the facts, make safe choices and get treatment after a positive diagnosis.

As with any other population, older adults are a diverse group from many walks of life and sexual orientations. Whether they work in the fields or in an office, are self-employed or retired, all older adults need to be informed about HIV/AIDS.  Below are stories that show the risks and decisions that some older adults face on a daily basis that lead to HIV/AIDS. While these stories are fictional, they are based on true experiences. NHCOA sends a special thanks to Farmerworker Jusice for contributing “Jorge’s” story.

Jorge
Jorge left Mexico when he was 25 years old to find work in the United States.  He left behind a wife and two young boys, but felt like he had little choice.  There was no work in the town where he lived and although he had found some work in the city nearby, it wasn’t enough to support his family.  He’d been here for almost forty years, working the fields.  Both his sons eventually joined him to do farm work and brought their wives from Mexico.  His wife stayed behind though, looking after their house and her parents and other relatives.  Jorge would have returned to Mexico before now, but the farm still gave him work and his children took care of him.

He’d been doing farm work for as long as he could remember.  The work was repetitive and demanding and the days were long and the years longer.  His body was bent and he moved slower than he used to.  On top of his normal aches and pains, he’d recently been feeling sick, with unexplained exhaustion, nausea, and some vomiting.  His son kept telling him to go to the doctor but the health center was far away, so he kept putting it off.

It was a Sunday afternoon, after church, that he first found out he was HIV-positive.  The church was putting on a health fair and they were offering a variety of screenings: cholesterol, vision, hearing, COPD, kidneys, and HIV.  He wasn’t planning on getting an HIV test that day; he had no reason to believe he was positive.  However, the woman at the booth convinced him to get it done.  When he returned 20 minutes later for the results, he was shocked when she said it was positive.

He didn’t say anything to anyone.  He was in his 60’s, too old to be diagnosed with HIV, in his opinion.  He’d always thought that HIV was for younger people in the 20’s and 30’s, not abuelos like himself.  When he finally went to the health department for the confirmation test, it was weeks later.  The health center worker who initially tested him had contacted him and offered to go with him to the health department.  When his results came back, they said he’d probably had HIV for years.  He would most likely need to start medication soon, but it would be a little more difficult to treat his HIV because he had waited so long to be tested.

When the health care worker asked him what he planned to do, now that he knew he was HIV-positive, he said he was going to go home.  And by home, he meant Mexico.  He was too ashamed to tell his sons about his diagnosis and he was just never comfortable seeing doctors in this country.  Although he’d spent more than half his life in the US, Mexico was still his home and where he wanted to finish out his life.  The doctor told him that with medications he could live a relatively normal and healthy life; however, he wasn’t sure what he was going to do when he got back to Mexico.  He didn’t want his wife to know he was HIV-positive and he knew that if he sought treatment in Mexico, people in his town could find out.   All he knew was that this was not what he had expected to deal with at his age.

Josefina
Josefina was born and raised in El Salvador, but has lived in the United States since she was 18 years old. She followed her high school sweetheart here in search of better opportunities after he asked her to marry him. It was a big adjustment to move to another country without knowing the language or the culture, but they were able to support each other and build a beautiful life together.

Josefina and her husband, Manuel, opened a restaurant, specializing in their families’ authentic Salvadorian recipes. The restaurant required long hours, but they enjoyed it and the support it provided for their family. Over the years they raised three children together, and later in life watched as their family expanded with the addition of spouses and grandchildren.

But one day, Josefina’s American dream came to an end when Manuel suffered a heart attack and did not survive. She did not think she would be able to cope with the grief of losing her husband of more than 40 years, but was able to heal thanks to the support of her family.

In the years since the loss of her husband, Josefina kept busy by working at the restaurant, taking care of her grandchildren and meeting friends for the occasional cup of coffee. While she was surrounded by people who loved her, she still felt lonely sometimes. When she mentioned this to Rogelia, her close friend, over coffee one day, her friend exclaimed, “Of course you feel lonely! It’s been nearly five years since Manuel passed away, and you haven’t dated anyone!” At first Josefina recoiled at the idea of dating someone. How could she date anyone after losing the love of her life? What would her kids think? What would people think of her having a boyfriend in her 60’s? However, Rogelia reassured her that Manuel would want her to be happy. She suggested that Josefina come to salsa night at the local senior center to meet some new people. Reluctantly, Josefina agreed.

Later that week, the women attended salsa night, where Josefina met a handsome widower named Juan Ignacio. She was surprised by how much fun they had dancing and talking that night– she hadn’t felt so lighthearted in years. So at the end of the night when he asked to take her out to dinner the following week she didn’t even think twice before accepting his invitation to dinner.

Soon after they first met, Josefina and Juan Ignacio started dating. While their relationship was short-lived, it made her happy while it lasted. A few months after their relationship ended she went to the doctor for an annual checkup. During the physical her doctor conducted routine tests, including an HIV test, which came back positive.

She was shocked and devastated by the diagnosis. Other than her husband, Juan Ignacio was the only man she’d ever been with – how could this be possible? Her doctor asked if they had used protection, which surprised her. She could no longer get pregnant, so she hadn’t thought to use protection. The doctor gently explained more about HIV/AIDS and who it affects. Josefina was surprised to learn that she was not alone – many older adults were living with HIV, and now she was one of them.

Carmen and Luis
Carmen is a Cuban-American who grew up in the Little Havana neighborhood of Miami. As a teenager she met Luis and got married right after she graduated high school. Family was very important to them both, so they decided to buy their first home in Little Havana in order to be close to both of their families. Luis was a construction manager and Carmen kept busy as a stay-at-home mom to their seven children. They had a humble life together, but were happy.

After nearly 50 years of marriage, Luis became very sick and had to be hospitalized. While running tests to determine his ailment, the doctors discovered that he had AIDS. The couple was shocked. Carmen had heard of AIDS, but never thought that it was a disease that would affect their family. Shortly after Luis was diagnosed, he passed away. Upon the suggestion of the doctors, Carmen got tested for HIV and the results came back positive.

She was devastated by the loss of her husband, and the news of her diagnosis only compounded that feeling. She thought that she would meet the same end as her husband. However, the doctor explained to her and her family the difference between HIV and AIDS. He told her that due to the incredible advancements in medical treatment over the years, people living with HIV can live fulfilling and relatively normal lives. He assured her that by taking her medications as prescribed, she could manage her HIV like any other chronic disease. With the love and support of her family, Carmen began treatment immediately following her diagnosis.

It’s been ten years since Luis passed away and Carmen is thriving because she has followed the treatment guidelines that her doctor recommended. She is HIV-positive, but she is still AIDS-free.

The opinions expressed in this article are those of the author and do not necessarily reflect those of the Diverse Elders Coalition.