Why Is It So Tough for LGBTQ+ Folks to Get the Care They Need?

For just about everyone living in the United States, healthcare costs can skyrocket, even for seemingly routine procedures.

The costs of visits, prescription medications and healthcare premiums – for those who are insured – have all steadily risen for decades. According to data from the Kaiser Family Foundation, health spending on a per capita basis has increased over 31-fold in the last four decades, with health spending growth outpacing the growth of the nation’s economy.

And while the number of insured Americans has grown since the Affordable Care Act (the ACA) passed in 2010, insurance coverage alone cannot always prevent medical debt for low- and moderate-income families. In a 2016 report on medical debt, an estimated 26% of U.S. adults said they or someone in their household had difficulty paying a medical bill within the past 12 months.

“First and foremost, we have a healthcare system in the United States that is based on capitalism, productivity and profit,” said Family Tree Clinic Executive Director Alissa Light. “And there’s amazing people within that healthcare system who really care about the health and wellbeing of people, but the healthcare system isn’t set up to be working toward health and wellness; it’s disease-oriented and it’s profit-driven.”

While Minnesota has a long history of high-quality health care – at least for those who can afford it – access to basic and preventative services and health outcomes can vary widely based on one factor: identity.

A community organization in Saint Paul, Family Tree Clinic reaches an estimated 22,000 people a year through its sex education programming and clinical services. Their patients come from all over the Upper Midwest and even, at times, from Canada, largely because of Family Tree’s gender-affirming hormone clinic and focus on LGBTQI+ health care.

“Because there are so many barriers to insurance,” said Light, “to getting care that honors, respects or even sees your identity in any sort of way – and just the economic realities that health care is really, really expensive and usually pretty inadequate… When we launched our LGBTQ health initiative in 2010, we just learned very quickly that the need was really, really, really profound because of all of those things.”

Christy Hall is a litigator with Gender Justice whose work often intersects with health care. Hall uses the law and policy to combat discrimination, including for LGBTQ Minnesotans. While Hall cites access to health insurance as a major barrier, she acknowledges the bias of providers as another major challenge her clients face.

“For example, we had a client who was trans and who was seeking access to in-patient mental health treatment,” said Hall, “and because [the provider] was trying to figure out if they belonged on the men’s floor or the women’s floor - they haven’t figured out that piece of it - so she just didn’t get access to health care.”

Amelia Schlossberg, a healthcare advocate working in Vermont, uses a patient advocacy approach to help people get coverage they need, finding gaps in coverage around things like gender-affirming care and gender-affirming surgery. Schlossberg considers their work in getting Vermont’s Medicaid program to update their gender-affirming care coverage a major victory. For Schlossberg, though, options based on income remain a significant source of frustration.

“Generally, your access to health care depends on who is paying for your health care,” says Schlossberg. “And if your income goes up, or if it goes down, you have limited options. Sometimes even just having $10 more per year can really limit your options.”

In Minnesota, for example, low-income adults may qualify for either Medical Assistance (Minnesota’s Medicaid Program) or MinnesotaCare. While both programs have income guidelines for participants, choices may vary significantly between them; as Schlossberg notes, choice can have major implications for patients’ health outcomes.

“Oftentimes, if you have more income, you have more choice,” said Schlossberg. “And something that’s been really important for the people that I’ve worked with is being able to find a doctor or a provider that really works well with you…  And the difference in the doctor that you’re just kind of putting up and they’re just putting up with you, versus a doctor that you really click with and that really is your advocate as well as your medical provider, that can make a difference between okay medical care… and someone really pushing to help you get the diagnosis, or get the medication or help you navigate that system.”

The 2020 COVID-19 pandemic has brought to light many of the challenges of our national healthcare system, including some of the vast inequities that exist for people of color. As the U.S. reckons with myriad racial injustices, those in health care can have particularly dire effects.

“There’s still a dynamic among LGBT folks that means that health problems will often multiply or deepen if the individual is a person of color,” said Phil Duran, the Director of Policy and Research at JustUs Health. “And so we’re really supportive of the fact that Hennepin County and others have been moving to call racism a public health issue, and that’s a conversation that we continue to need to engage in. Because you can take some of these specific conditions off the table, but that one is still going to be there.”

Alissa Light of Family Tree Clinic agrees.

“It’s interconnected and inexorably linked,” said Light, “so that the more identities you hold that fall outside that really narrow focus that the healthcare system is designed for – which is really white, cis[gender], assumed heterosexual men, usually – not only are you less and less seen, represented, believed and treated with dignity, but also because of compounding factors of deep structural and systematic racism [that are] rampant throughout every system in the United States and oppression based on other identity, including queerness, trans-ness, non-binary, the factors are compounded.”

Duran sees the need to dig far deeper into health disparities throughout the COVID-19 crisis and beyond, noting that as LGBTQ+ Minnesotans age, they face yet additional challenges, including isolation.

“Among LGBT older adults,” said Duran, “you see a disproportionate number of people who don’t have spouses or partners at that stage of their life. They don’t often have children or grandchildren who are there. Many older adults will turn to a faith community… and there has been historic tension between many faith traditions and the LGBT community, so people don’t have access to that. And so isolation is a real concern.”

Alissa Light, Christy Hall, Amelia Schlossberg and Phil Duran all support the idea of some version of universal health care. They share the hope that, someday, all Minnesotans will be covered no matter how much money they make or how they identify. Even as access to insurance and high-quality, gender-affirming care continues to pose challenges for LGBTQ+ Minnesotans, they see opportunity to move forward in new and innovative ways. And they all feel hopeful about the healthcare conversations they are having locally and hearing nationally.

“I always have to be hopeful,” said Light, laughing. “I feel like there is no option, although I feel hopeless many minutes and hours of many days… It’s like we’re going to do everything we can to not go back and to really design the world we want to live in. And that’s what it’s going to take. And I do feel hopeful that we can keep building towards that.”

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