When Grayson Schultz had masculinizing top surgery to remove breast tissue and sculpt a masculine chest on July 6, 2021, he chose to get his nipples resized into more masculine ones and grafted back onto his chest, as many others undergoing the surgery do.

However, just weeks before his surgery, Schultz received a letter from his insurance company noting that they were not sure his nipples were medically necessary.

“When I called and spoke to the individual handling my case, all the knowledge he had was a quick internet search about top surgery,” says Schultz. “While terrified that I might not be able to have this surgery I’d been planning on since December 2020, I had to patiently and kindly educate him about top surgery.”

This wasn’t out of Schultz’s wheelhouse since he’s a transmasculine sex educator himself, but he says it was something he shouldn’t have had to do. Plus, others in his situation may not have been able to do the same.

Double-incision top surgery with nipple grafts is the most common option for masculinization top surgery. It involves decreasing the size of the nipples and areolas, removing the breasts and excess fat or skin, and reattaching the resized nipples to the chest, per the Cleveland Clinic.

A main benefit of this surgery is relief from gender dysphoria, as achieving a masculine-looking chest helps many transgender individuals feel more at ease. However, there have been other reports of surgical teams experiencing issues with insurance plans denying coverage for free nipple grafts as part of double incision mastectomy procedures, according to a report in the journal Plastic and Reconstructive Surgery — Global Open.

“The denial of nipple grafts for cosmetic reasons is highly problematic,” note the authors. Nipple appearance is linked to overall satisfaction with chest reconstruction, per the report — and helps patients go shirtless in places like swimming pools, which is a goal for many who go through this surgery. Having to advocate for this with insurance can quickly become a taxing experience.

“The representative was incredibly apologetic and willing to learn, thankfully, but it was still very stressful,” says Schultz. “Getting the wrong person reviewing your prior authorization or request could impact life in some major ways.”

This is just one example of a potential barrier LGBTQ+ patients face when navigating insurance and health care rights. Numerous issues can arise due to the following:

• Lack of knowledge by insurance providers about this population
• Discrimination and personal biases of health care providers
• Changes in state-specific insurance policies and legislation

Barriers to Health Care Access for LGBTQ+ Patients

Patients and experts alike cite a lack of knowledge by insurance providers and confusion, particularly when it comes to trans and gender-diverse patients accessing gender-affirming care.

“Often, many people aren’t even trained to understand some of the terminology and the needs, which puts the onus on the actual patient,” says Julius Joi Johnson-Weaver, MD, a Black, neurodivergent, trans, non-binary physician. “We know time and time again, that can really cause a lot of stress and anxiety.”

Research shows that when patients have to teach their providers about their care, they experience much higher rates of depression and anxiety, adds Dr. Johnson-Weaver.

What’s more, studies have shown striking disparities when it comes to communication between health care providers and LGBTQ+ patients. For instance, in a 2018 study published in AIDS and Behavior, 83 percent of adolescent males who have sex with males reported their doctor assumes they’re heterosexual. Researchers found that providers had asked only 20 percent of them about their sexual orientation or attraction.

Participants also reported being more uncomfortable discussing the topic with their doctors than with school counselors or mental health professionals, which meant some may have missed receiving important information about their sexual health.

Plus, LGBTQ+ adults have historically faced barriers to health insurance coverage. In 2013, LGBT adults were significantly less likely than non-LGBT adults to have insurance coverage and more likely to report trouble getting necessary medical care, per a 2023 study in Health Affairs (Millwood).

However, policies can have an impact: These disparities began to decline in 2014 when Affordable Care Act provisions went into effect. By 2017 to 2019, coverage rates for LGBT adults were comparable to those of non-LGBT adults. Still, significant disparities in access remained, according to the report.

Some examples of LGBTQ+ patients navigating insurance and health care access might include (but certainly aren’t limited to):

• Someone who has a chosen name that’s different from their legal name, but the insurance company isn’t aware of why that may be.
• A patient who was born female is transitioning to male, but trying to access gynecological care because they still have a uterus or ovaries.
• A non-binary individual who requires certain health care services that don’t fit the binary gender options traditionally offered by insurance plans, which leads to delays or denials of needed care.

Beyond encountering a lack of knowledge from providers, patients may also come across discrimination — whether the personal bias is conscious or unconscious.

More than one in five LGBTQI+ adults reported postponing or avoiding medical care in the past year because of disrespect or discrimination by providers, including more than one in three transgender or nonbinary individuals, according to a 2022 survey from the Center for American Progress.

“Whenever we’re dealing with our own health, that’s a very vulnerable state,” says Dr. Johnson-Weaver. “You don’t always want to be this source of strength and a huge advocate for yourself. Sometimes you just want to get the care.”

Protecting Your Health Care Rights

 Insurance and health care rights vary by state. For instance, in Maryland (where Dr. Johnson-Weaver is located), there’s been progress in codifying laws that protect against discrimination toward gender-affirming care.

When it comes to accessing health care and navigating insurance, it’s key to know your rights based on where you live.

“If you know you’re part of a marginalized community, having the education around your rights is pretty powerful,” says Dr. Johnson-Weaver. “We know that’s an extra step, and maybe one you wouldn’t have to take if you were not part of a marginalized community, but it’s important.”

Understand your local climate and reach out to organizations that can help you translate the laws in your state — and seek out affirming providers in your area.

“Getting that backing can make you feel like you’re less alone,” adds Dr. Johnson-Weaver. “If you’re in a state where those local organizations have been silenced and it’s hard to find them, start by reaching out to the larger ones, because they may be able to direct you.”

For instance, the American Civil Liberties Union provides resources around laws and legislation, health equity, and more.

And if you think you might have trouble being your own personal advocate at a doctor’s appointment, bring a loved one who would be willing to advocate with you. “Bringing that advocate with you who can ask extra questions and push for your needs is very important,” says Dr. Johnson-Weaver. “Also, do your research to find the affirming doctors if they’re available and get the backing of your local community.”

How to Choose the Right Insurance for You

When choosing an insurance company, start by looking at what their nondiscrimination policies are and if they include protections for the LGBTQ+ community. If they don’t, Schultz recommends checking the Movement Advancement Project to see if you have protections on a local or state level.

Meanwhile, Out2Enroll can help you investigate your rights and coverage before signing up, if you’re looking at a marketplace plan. If you’re not sure about what health care rights you have or certain questions you should consider, you can consult the National Center for Transgender Equity (which also has information on how to fight discrimination if you experience it).

The doctors you see under your insurance plan can make a significant difference in the care you get, too. Look for affirming providers by checking the directories from OutCare Health and LGBTQ+ Healthcare.

“There are often local or state resources from PFLAG, organizations, and even Reddit,” says Schultz. (PFLAG is the largest organization for supporting, educating, and advocating for LGBTQ+ people and their families.)

Although going through this research can feel isolating, know that you have many people, organizations, and communities championing for you and providing resources that may help.

“You’re not alone,” says Dr. Johnson-Weaver. “There are people doing a lot of good work out there,” says Dr. Johnson-Weaver.”

Creating Change for LGBTQ+ IBD

At the Global Healthy Living Foundation, we recognize the unique health challenges faced by the LGBTQ+ community, including those living with IBD. That’s why we launched our “LGBTQ+ IBD experiences” survey centered on capturing and understanding your experiences.

Through the community voices from our survey, we uncovered insights on everything from confronting health disparities in IBD care to navigating inclusivity in health care settings. We hope that these findings can now help inform and educate both the community and health care professionals, to ensure you receive better access to care and improved condition management. Check out the report now!

Sources:

Boskey ER, et al. Congruence Is Not Cosmetic: Denials of Nipple Grafts for Chest Reconstruction Surgery. Plastic and Reconstructive Surgery — Global Open. April 4, 2019. doi: https://doi.org/10.1097%2FGOX.0000000000002145.

Bolibol A, et al. Health Insurance Coverage And Access To Care Among LGBT Adults, 2013-19. Health Affairs (Millwood). June 2023. doi: https://doi.org/10.1377/hlthaff.2022.01493.

Discrimination and Barriers to Well-Being: The State of the LGBTQI+ Community in 2022. Center for American Progress. January 12, 2023. https://www.americanprogress.org/article/discrimination-and-barriers-to-well-being-the-state-of-the-lgbtqi-community-in-2022/.

Female-to-Male (FTM) Top Surgery. Cleveland Clinic. September 16, 2021. https://my.clevelandclinic.org/health/treatments/21861-female-to-male-ftm-top-surgery.

Fisher CB, et al. Patient–Provider Communication Barriers and Facilitators to HIV and STI Preventive Services for Adolescent MSM. AIDS and Behavior. March 15, 2018. doi: https://doi.org/10.1007/s10461-018-2081-x.

Interview with Grayson Schultz, a patient and transmasculine sex educator.

Interview with Julius Joi Johnson-Weaver, MD, a Black, neurodivergent, trans, non-binary physician.