Health & Wellness

Healthcare, like housing, must be considered in combination with some of the other issues that the LGBTQ+ community faces. A conversation with stakeholders highlighted the fear of the trifecta of lack of housing options, poor medical care, and a thin familial safety net that many in our community face.²⁸

As you read through this section, consider the many ways in which health care intersects with other social positions and social problems. For the LGBTQ+ community there is a unique history of the community’s relationship to the medical field which is fraught. It makes the question of healthcare more than just delivering a service, but also about how the medical field has played a significant historical role in limiting the humanity of the community

Health and wellness starts when we are young and encompasses being able to understand one’s body. Our society is particularly prurient about sex and sexuality which makes locating good information particularly fraught. The web remains a place akin to the wild west for people who are starting to explore their sexuality, and schools remain places where conversations of sex and sexuality are few and far between.

It is important that we distinguish between school culture and school curriculum. Often they are utilized interchangeably, particularly in backlash conversations that focus on the fear around sex in sexuality.³⁰ However, most of the young people we spoke to did not talk about sex education as a curricular content area, what they wished for longingly was a culture of acceptance that would mean being able to grow up and learn in a school where they did not have to endure bullying, where there are policies on the books that are enforced to protect LGBTQ+ students as they navigate primary through secondary school, and where they have mentors and counselors who can support them. Said one student currently enrolled in Rhode Island College, about her earlier middle and high school experience:

A couple of the youth we spoke to were also connected to the Cops Not Counselors movement in the state that advocates moving funding from student resource officers (in school law enforcement) to much needed counselors. LGBTQ+ students very much felt the lack of funding that could go towards creating a culture that cared about community more than a narrow definition of safety-by-protection. It was a theme we heard repeatedly, even in our older respondents:

if you put money into building a strong and healthy community you need to put fewer resources into traditional public safety and security.

An example of a particularly effective model of this is the Central Falls School Department. Central Falls pairs young LGBTQ+ people with counselors, social workers, and referral networks to attorneys and mental health professionals.

Rhode Island school curriculums still emphasize abstinence (as the primary way to avoid sexually transmitted infections (STIs) and pregnancy)³² and though they are required to be inclusive they are not required to be comprehensive.) Sex education in the state is supposed to include information on sexual orientation and gender identity, but in practice youth found the inclusion of LGBTQ+ content to be mostly absent; the primary focus on heteronormative sex. This discriminates against LGBTQ+ who are left without any meaningful conversation on their experience of sex and sexuality.

The current push to ban books across the country that cover LGBTQ+ themes (as well as race) has a chilling effect on providing accurate and supportive representation. This campaign sends a message that if these books can be banned in schools, then it is possible to ban students from even talking about being LGBTQ+. As a state Rhode Island has avoided these harmful challenges, but recent local examples of book banning attempts that focus on LGBTQ+ books highlight the state is not immune.³³

Many times it isn’t until a student arrives to college and happens to take a class that addresses gender and sexuality (and those classes do not reach most students) that they may even hear about some of the biological and social reality of gender, sex, and sexuality. One participant in a focus group shared that it was through their college courses that they began to understand ideas of gender fluidity, LGBTQ issues and a spectrum. Middle and high school classes had previously provided health education only.

The stifling of conversations around sex, sexuality, and gender actually do the opposite of what advocates of abstinence-based programs believe. Education that focuses on people’s actual practices around forming healthy relationships, rather than solely on risk reduction of pregnancies and STIs is a much more powerful way to reduce the latter.³⁴ The current paradigm of teaching sex education is woefully inadequate for LGBTQ+ youth. Another of our focus group participants spoke about how powerful it would be to begin the process of inclusivity for LGBTQ+ people not only when we’re talking about sex and sexuality, but before when teaching about acceptance, difference, healthy relationships, and joy.

A 2013 national study found that fewer than 5% of lesbian, gay, bisexual and transgender (LGBT) students aged 13–21 reported that their health classes had included positive representations of LGBT-related topics. Another study from 2015 conducted among millennials showed that only 12% were taught about same-sex relationships in sex education class.³⁵

The absence of an expansive curriculum in our primary and secondary schools that understands difference and diversity as beauty, is a reflection of all our public services in the state. By focusing on youth and schools we build a resilient and confident next generation of LGBTQ+ adults. Understanding our bodies means being able to seek out the care needed. Below are some key data points that highlight these issues for LGBTQ+ youth and adults.

• Prior to and including the US Supreme Court decision to protect same-sex marriage rights, states that legalized same-sex marriage saw significant decreases in suicide attempts among adolescents.³⁷
• Sexual minority persons overall are significantly less likely to have health insurance than heterosexual persons in the US. Bisexual persons are 1.8 times as likely as heterosexual persons to be enrolled in a public insurance plan (Medicare, Medicaid, etc.).38 LGBQ women tend to have lower rates of health insurance coverage. Among sexual minority individuals in the US,attributes that are associated with reduced access to needed services (age, citizenship, education, and income) are also associated with having no health insurance. Specifically, sexual minority women are 1.7 times as likely to be uninsured than men.³⁹
• 40% of LGBT elders in their 60s and 70s have reported that their healthcare providers are unaware of their sexual orientations. Two out of three transgender adults feel that as they age, they will experience increased lack of access to healthcare services.⁴⁰

The arc of HIV and AIDS care from pandemic and acute care in the 80s-90s, to long term care with broad medical and social services, to now care for the larger aging population with long-term HIV and AIDS is one that will need a broad array of both social and medical services. Many of our LGBTQ+ organizations developed within and were shaped by the AIDS pandemic. The AIDS pandemic changed the nature of what community organizations provided and it also shaped the way the community was seen by the dominant heterosexual community. Many of the organizations that once focused entirely on HIV and AIDS work have expanded as the needs of the community have.

About 2,500 Rhode Islanders were diagnosed with and living with HIV through the end of 2017.

An estimated 7-8% of individuals who are HIV-infected do not know their status which suggests the numbers above may be an underestimate of all Rhode Islanders living with HIV. In the past decade, 53.7% of newly diagnosed cases were among gay, bisexual, or other men who have sex with men (GBMSM). From 2014-2018, that percentage has increased to 57.6%.⁴¹ Like other areas in the United States, young gay/bisexual Black/African American and Hispanic/Latino men in Rhode Island have been increasingly affected by HIV.⁴² Unlike Massachusetts, there is no budget line for HIV/AIDS services in Rhode Island, which makes funding more challenging and heavily dependent on grants and fundraising.

HIV/AIDS may not be at its pandemic level, particularly in the United States, but it still affects the LGBTQ+ community, such as the complex needs of an aging population with long-term HIV, and a younger more diverse community that is still exposed. Locally, AIDS Care Ocean State continues to serve the community with HIV and AIDS, and organizations like Project Weber/Renew have a broad grassroots outreach to people with HIV and AIDS who often do not receive care.

Gains in HIV treatment have resulted in people who are HIV-positive are living longer lives. HIV+ people are a growing segment of Rhode Island’s population.⁴³ There are currently around 1,300 HIV+ people living in Rhode Island over the age of 50. (stats estimated based on the Centers for Disease Control: HIV/AIDS Surveillance Report, 2007 and the Rhode Island STI 2018 Surveillance Report.) That number is suspected to rise by 70% by 2030, which means there will be between 1,800-2,000 elders living with HIV in Rhode Island. The vast number of those folks will be members of the LGBTQ+ community. This means that out of the total number of LGBTQ+ elders in Rhode Island, a good portion will need complex care related to their HIV+ status and comorbidities, behavioral health needs, access to transportation, and coordination of care.

Because focus groups are not an ideal space to talk about sensitive health care issues, we found our one-to-one interviews yielded more in-depth conversations on HIV and AIDS. One of our conversation partners shared extensively about their experience with HIV as well as working within organizations that serve people with HIV and AIDS.

 

For this community member part of the issue was organizational.

And because of the stigma that still exists around HIV and AIDS, people who sought care had to face the possible knee jerk responses from healthcare providers.

“So things that are missing. When your doctor and your nurse are outside of your door talking about your HIV status as if it’s like leprosy or something and even— that’s like such an outdated term, but like other communicable diseases that may or may not be worse off. But this is if I’ve already become stigmatized in that space. So, how do you teach someone not to have a reaction to something that they maybe were reactive to? How do you teach someone to not make a whole bunch of facial expressions when they look at your chart and see that you have HIV? Or then how do I not internalize that knowing that I’m going into that space, and a new space, and I have to disclose my HIV status because that’s what you do in medical spaces”.⁴⁶

In a focus group that spent some time speaking on health care in general, a community member talked about how many doctors neglect to ask him important questions. Those questions included:

“So basically who do I have sex with? Do you have multiple partners, even though you may be in a committed relationship, do you have more than one partner? You know, those types of things.”⁴⁷

Stigma, providers who lack training in addressing the particular needs of the community, an avoidance of talking about sex in general along with the assumption of heteronormative and monogamous practices can mean that people are not getting the care and information they need.

Finally, there are cultural concerns that should be addressed when caring for people with HIV and AIDS. Some communities (ethnic and religious) have particularly strong responses towards people with HIV and AIDS. And other communities might have a strong negative response towards the medical establishment itself. In the following conversation, this individual talks about the challenge of joining a vaccine trial for HIV because of the fear of medical tests within the Black community.

“It was a four year commitment and going in weekly or every two weeks for blood work and all kinds of interviewing of behaviors um so that was that was hard and so. I couldn’t tell many of my friends because I had no idea what their reaction would be so it took awhile for me to settle in with feeling confident and okay about it. When I talked to my Black friends they were horrified that I was doing this given the history of how the medical community had treated Black people in the past, you know rather it was a Tuskegee Institute or other kinds of of trials that Black people were subjected to through the medical profession without their consent and how many of them had died from so they could not believe that I would be trusting of the medical establishment and do this. But these were difficult times, so they required difficult decisions to make and so. So I continued with that. And then did other work in between those four years to try to recruit from the Black community volunteers for the AIDS vaccine trials and so as I would go into Black churches, I would certainly be thrown out and called all kinds of names and abusive behaviors because it was just strong, such strong condemnation of my participation in these kinds of activities.”⁴⁸

A recent study showed that the effect of the abuses at Tuskegee towards Black men from the 30s through the 70s have had a wide reaching and devastating effect on the Black community to this day that reach far beyond its local ramifications.⁴⁹ The study reinforces the importance of building trust particularly within Black,⁵⁰ Indigenous,⁵¹ and communities of color,⁵² that have seen abuses by the state and medical community.

There remains a significant gap in outreach to Latinx communities in Rhode Island. The expansion of Latinx/Hispanics in the state alongside continuing stigma within the Latinx community indicates a growing need to make sure information and care can reach Latinx folks.

Hispanic/Latinx persons constitute 16.3% of the Rhode Island population (US Census Bureau QuickFacts: Rhode Island), but only 7.81% of the 2018 BRFSS Rhode Island sample and 9.73% (n=29) of LGB adults in the Rhode Island sample. This means there is a need for culturally-competent studies to reflect more accurate data. In 2018, LGB adults reporting Hispanic/Latinx race/ethnicity were significantly less likely to have health insurance coverage compared to non-Hispanic/Latinx LGB adults (79.3% versus 94.4%, respectively). Hispanic/Latinx LGB adults were more likely to report a past diagnosis of at least one chronic disease compared to non-Hispanic/Latinx LGB adults (58.6% versus 39.8%).

One key informant interviewee suggested creating discrete ways for STI, gender and sexuality screening at “Know Your Rights’’ and other informational meetings at the consulates—this is a place where Latinx people gather besides faith-based institutions that could become a way to connect them with health services. This could be done with the Mexican consulate, specifically.

Finding health care with knowledgeable and accepting practitioners was a huge issue for many of the people we spoke to. In conversations with providers that focus on LGBTQ+ people, gender care was one of the largest reasons for seeking care. Many of these same people felt judged and or often given incorrect and misleading information when seeking care from non-LGBTQ+ focused providers. If there was a health care provider who was both knowledgeable and accepting, it might take months for an appointment. Healthcare providers, such as Thundermist, Lifespan, and Open Doors, who see a large number of trans clients, are often at capacity. But there is an enormous need for informed and sensitive providers across the entire state.

There are two key issues within care for transgender individuals: first is general healthcare competency and second is more specifically gender-affirming healthcare.

Most transgender and gender non-conforming persons lack access to competent, welcoming health care providers. Often when seeking routine medical care, their gender becomes the only aspect that providers see (particularly for mental health care). Trans individuals refer to this as the “broken arm syndrome”⁵³ where any health issue gets filtered first through their gender first, even if just a cold or a flu. A similar critique has been brought up within the fat community and the disabled community. In all three, there is an assumption that a particular visible body must must always be the prime medical reason behind all care. It is a limiting and discriminatory lens.

The 2015 Transgender Survey results from Rhode Island yielded the following insights:

• 24% of those who saw a health care provider in the past year reported having at least one negative experience related to being transgender. This included being refused treatment, verbally harassed, or physically or sexually assaulted, or having to teach the provider about transgender people in order to get appropriate care.
• In the past year, 33% of respondents did not see a doctor when they needed to because of fear of being mistreated as a transgender person, and 33% did not see a doctor when needed because they could not afford it.⁵⁴

Said one practitioner,

Gender-affirming healthcare—care that can includes hormone therapy and surgical interventions—is challenging to attain in our complicated healthcare environment. Some of the hurdles that are faced are: finding a primary care physician who is knowledgeable about gender-affirming care, having your insurance in order, get a consultation for surgery if desired/needed–which can take upwards of a year, and finally facing the possibility of having coverage denied.

The 2015 Transgender Survey stated that 26% of Rhode Island respondents experienced a problem in the past year with their insurance related to being transgender, such as being denied coverage for care related to gender transition or being denied coverage for routine care because they were transgender.

As one of our practitioners related:

Some healthcare systems recognize this need and have created positions for “navigators” to work with clients and make sure they have the information they need to get the health care they desire.

“As peer navigators, we help people navigate the red tape around legal and medical gender-affirmation in the community and within our [practice]. So we help people with everything from helping them gather together their documents, to get their name changes taken care of, to helping them prepare appeals when they’ve been denied for gender-affirming care with their insurance companies, to doing trainings at different schools and organizations to help them become more gender-affirming within their organizations as well. So just really helping families— being able to enable them with the tools to be able to carry forward to do their own advocacy over time.” ⁵⁸

Our conversations around health often returned to the great need for LGBTQ+ informed and identified mental health professionals. For youth, this might be a counselor or mentor who helps them build a healthy relationship to who they are amidst hostility that may surround them in schools and in homes. As people get older, finding a mental health professional may be a key way to heal from trauma. Some people felt their mental health concerns were pushed aside and so getting the correct care and getting that care covered under insurance was a significant challenge.⁵⁹

The challenges of finding mental health care are beyond competency or “cultural humility”, the two biggest hurdles are the expense of mental health care and finding LGBTQ+ therapists who accept insurance. One person also pointed out that the very structure of schooling for practitioners and its expense often weeded out exactly the people that are needed in the field.

“I can’t— you know, I can’t help but wonder how many other trans people could possibly be going into social work or psychology or other related professions if it weren’t for the fact that you commit to 600 hours of unpaid labor as an intern. And unless you are an extraordinarily privileged trans person who has family support, and you’re doing this at 19, or 20, 22 years old, when you still live at home with mom and dad…how do people do that when they also have to work full time jobs? Those create barriers to us getting the diversity of professionals that we need out into the community.”⁶¹

There have been some important changes. Practitioners we spoke to reflected on those changes that have been made in the last couple of decades. One trans woman therapist spoke about how the profession had dealt with trans individuals by just not dealing with them. Or in her case, passing them along to her.

“I would have therapists at other mental health facilities send me their clients just to talk about [their] trans issues. And that just borders on malpractice, it’s not something that can be isolated from the rest of an individual’s life but that’s kind of how we did it back then.”⁶²

The separation between medical and mental health care led to a siloing of care. One person who had worked for some time at Butler in the 90s noted that:

“We wouldn’t even take an AIDS patient at Butler because for us it was a medical issue. And even though it obviously had a lot of mental health impact and emotional impact, we saw that clearly outside of our scope, While a lot of people in the community were suffering… We just didn’t do anything to really help that community. And even among the psychiatrists and social workers, LGBT issues weren’t addressed. I mean, they weren’t even discussed among professionals. It’s not even a topic that the psychiatrist at the hospital were even willing to have. I mean, there was no starting point.”⁶³

The most-recently available data for Rhode Island from the 2015 Transgender Survey show that 49% of respondents experienced serious psychological distress in the month before completing the survey (based on the Kessler 6 Psychological Distress Scale). 10% of respondents reported that a professional, such as a psychologist, counselor, or religious advisor, tried to stop them from being transgender. Further differences exist among trans subpopulations, as trans men have higher rates of frequent mental distress than trans women and gender nonconforming persons.⁶⁴ Trans women and men have higher rates of prior problem alcohol use (31% and 30% among trans women and men, respectively) and prior problem use of other drugs (21% and 25%, respectively).65 Nonbinary persons have higher rates of binge alcohol use (58% in the past year).66 In a study conducted in 2020, LGBQ women and men had high rates of binge alcohol use (48% and 58%, respectively).⁶⁷

Thankfully there have been significant changes within the medical care climate that LGBTQ+ have the possibility of finding practitioners.. But this doesn’t change the fact that the way mental health is covered by many insurance companies leaves most people unable to find someone they can afford. Many of the best practitioners are unwilling to accept insurance coverage because of the poor rate of reimbursement. This reflects how as a society we do not value mental health care, and see it primarily as an individual issue not a collective one.

With thinning supports LGBTQ+ must develop the queer kinship safety nets that can provide support.

This segues into our final large discussion on building and reimaging community for LGBTQ+ people.

Broad health care data points to consider:

• Nationally, 13% of LGBT elders have been denied healthcare or received inferior care due to their sexual orientation.⁶⁹
• Sexual minority persons overall are significantly less likely to have health insurance than heterosexual persons in the US. Bisexual persons are 1.8 times as likely as heterosexual persons to be enrolled in a public insurance plan (Medicare, Medicaid, etc.).⁷⁰
• Greater social support is associated with lower rates of substance use; however, sexual minority adults in the US report lower rates of social support and higher rates of substance use than heterosexual adults. This suggests that a lack of peer and community support systems may be a factor in disparities in substance use disorders between sexual minority and heterosexual adults.⁷¹
• An LGBTQ+ friendly policy climate (legal protection against sexual orientation discrimination in employment, housing, and public accommodations) is associated with better self-rated overall health, routine healthcare utilization, and health insurance coverage among LGB adults nationally.⁷²
• LGBTQ+ people experience intimate partner violence at rates equal or higher than their heterosexual counterparts. In 2015, about 27% of LGBTQ+ survivors attempted to access emergency shelter. Of those survivors who attempted to access emergency shelter, 44% were denied. The most commonly reported reason that survivors were denied shelter was barriers related to gender identity (71%), highlighting the negative consequences of sex segregated emergency shelter options for LGBTQ survivors.⁷³