Palette Magazine

Seeking equal quality care in the aging LGBTQ community

By Carina Mask

As a group, the LGBTQ community has overcome a tumultuous history marked by stigma and discrimination. It’s been a little over 40 years since the American Psychiatric Association (APA) took homosexuality off its Diagnostic and Statistical Manual of Mental Disorders (DSMMD), and the social environment has changed dramatically since that decision. It’s difficult for many in younger generations to fathom, but not too long ago it was common practice to institutionalize, force conversion therapy upon and even chemically and/or electrically sterilize people for homosexual behavior.

Further back, Nazi Germany systematically tried to exterminate gays and lesbians, along with Jews; Cuba’s Public Ostentation laws supported draconian measures to “deal with” homosexuals in the community; and even in places where the laws don’t specifically sanction the mistreatment of LGBTQ people, just the suspicion of being gay, lesbian or transgender could lead to dangerous, possibly deadly consequences.

Against this backdrop, it is completely understandable that many LGBTQ seniors are not comfortable letting their health care providers know about what they’ve come to consider their personal information. However, sexual orientation and gender identity are important to disclose to physicians and health care professionals, sometimes even life saving. It is crucial that doctors are also trained to provide culturally sensitive and appropriate services.


Growing in Numbers

Jim Lopresti, senior clinical supervisor and the director of education at SunServe says it’s imperative for patients to become visible if they want health care organizations to provide quality care. He is also aware that unfortunately in the LGBTQ community, the exact opposite happens. It takes a certain vulnerability, a letting down your guard to become visible. “We need to become vulnerable and visible,” he says. “On our end, we have the responsibility to the LGBT community to tell them to be visible. If we’re going to get quality care, it is because we need it.”

There are more than 39 million people in the United States that are 65 years or older, approximately 1.5 million of these people identify as gay, lesbian, bisexual or transgender. As the baby boomer generation gets older and more people retire, it is estimated that this number will more than double by 2030. As of now, we can only make estimates about what part of that population identifies as LGBTQ; there simply are no federal health surveys that include questions regarding sexual orientation or gender identity.

This growing population needs accessibility to competent and understanding health care providers, especially considering that when compared to its heterosexual counterpart, the LGBTQ community has lower rates of health insurance coverage; higher risk of cancer due to delayed testing, among a number of other factors; higher risk for depression and suicide; greater risk of drug and alcohol abuse and dependence; a higher percentage of mental health disorders; and a generally greater tendency toward engaging in high-risk behaviors.


Living Beyond HIV

Christopher Matthews, the senior services specialist at The Pride Center in Wilton Manors, recently held an event called “Maturing with HIV,” during which a panel of doctors and social workers discussed the specific medical concerns and psychosocial issues with which people living with HIV are most commonly confronted.

“Premature aging happens even if you keep [HIV] in check,” says Dr. Marah Lee of Lifeway Medical. “Diabetes, hypertension, neuropathy, kidney disease, dementia, heart disease, different cancers and osteoporosis can all happen 10 to 20 years before their HIV-negative counterparts.”

Once considered a death sentence, HIV has become a manageable disease, thanks in large part to medical advances made in the early 1990s. Highly active anti-retroviral therapy (HAART) helped those who are HIV positive add another 30 to 50 years to their life expectancy.

That success is a testament to the dedication of countless medical professionals, but it also brought about a new set of obstacles. While it’s true that this group of people is now living longer, until very recently there was no such thing as a long-term study on the HIV positive population. The National Institute on Aging (NIA) and the Centers for Disease Control and Prevention (CDC) have both publicly stated that the increasing number of Americans who are HIV positive and aging is a public health concern.

“HIV infection causes a chronic inflammation throughout your entire body. This is what causes premature aging, disease and a weakened immune system,” says Dr. Lee.

Researchers at NIA have estimated that approximately 50 percent of those who are HIV positive have HIV-Associated Neurocognitive Disorder. Whether that involves the loss of fine motor skills, language, information processing, memory or attention deficit, the result is the same: diminished quality of life and increased risk of depression, which causes its own set of problems.

A study at the University of Pittsburgh utilizes comprehensive brain imaging techniques, such as MRI, to compare the brain activity of HIV-positive men who are on HAART treatment with that of HIV-negative men. Degeneration of small blood vessels in the brain might be one of the causes for the cognitive impairment. The tests seem to point to structural changes that may take place in the brain within the first few months of infection.

Access to this kind of information and specialized care are especially important in Florida, which according to Care Resource has the third highest rate of new HIV infections in the United States.


An Age Transition

The 2011 national study titled “Injustice at Every Turn: A Report of the National Transgender Discrimination Survey,” carried out by the National Center for Transgender Equality and the National Gay and Lesbian Task Force, surveyed 6,400 participants to examine the social effects that are specific to the transgender population.

“The persons who are the most [at] risk are the ‘T’,” says Lopresti. “Most trans men have not had hysterectomies or phalloplasty. That person still needs pap smears. They are at risk for several types of cancer, including cervical cancer. But this trans man isn’t about ready to let that be known.”

Arianna Lint, founder and CEO of the Arianna's Center is all too aware of the difficulties of being an aging transgender person and echoes those concerns.

“We face different barriers with health. Everyone in the transgender community is very unique,” she says. “I am talking not just about my community, but myself.”

If the medical industry is just now coming to terms with an increased need — some might say demand — for more personalized service, nowhere is this more necessary than with the transgender community. The complex medical histories of transgender individuals are compounded by very narrow social readings of gender-related health concerns.

“Personally, I am 43. My ID shows that I am female; [but] my insurance doesn’t cover prostate exams, nor does it cover any male medications,” says Lint. “Not many agencies or doctors understand or know how to deal with a 40-something Peruvian or Latina transgender woman walking into their office to get a prostate exam.”


Additional Factors

“The LGBT community started to come together more and more for gay rights, then Stonewall and then AIDS happened,” says Matthews. “A large swath of men and women died. A whole part of our community is gone.”

An often-neglected aspect of care for the aging relates to social and emotional care. For the aging LGBTQ community — who came of age before widespread social acceptance and marriage equality — the social network is fragmented, especially since this particular generation lost many friends and partners to the AIDS crisis.

“How do we take care of each other?” asks Matthews. “How do we bring together the older and maturing LGBT community in talking with the Gen-X and Gen-Y. We all have needs. How do we connect?”

Intergenerational programs aimed at increasing understanding and improving quality of life already exist. In Deventer, Holland, the Humanitas nursing home offers students the opportunity to live rent-free in a small apartment within the home in exchange for at least 30 hours a month of being “good neighbors.”As part of a effort to encourage social interaction and stave off isolation and loneliness, students are invited to participate in different activities such as celebrating birthdays, watching sporting events and just being there to strike up conversation. Many have found that they too are benefiting from the interaction.

“How do we really begin to respect and honor the generations before us?” asks Matthews. “We don’t have extended families as much. We connect via phones and texting, but we need to be present”

Community centers, like the Pride Center at Equality Park, Pridelines and the Jewish Center for Senior Living offer opportunities for all members of the community to become engaged by acknowledging and embracing the various stages of life. Aging is an inevitability and we can learn how to age gracefully from our predecessors.