Creating Strategies to Expand Transgender Healthcare Coverage

March 12, 2021 - For the nearly 1.4 million Americans who identify as transgender, transgender healthcare coverage is lined with hurdles.

One in five transgender individuals reported being uninsured at some point during 2017 to 2018, according to the Kaiser Family Foundation (KFF).

On top of their lack of health insurance, transgender individuals are more likely to be in the lower income brackets. In 2017 and 2018, 44 percent of Americans in the transgender community were living on an income of $35,000 or less. In contrast, only about a third of cis-gender individuals nationwide were in this income range during that timeframe.

As a result of these combined forces, almost 20 percent of transgender adults reported experiencing cost-related healthcare barriers, compared to 13 percent of cisgender adults.

Furthermore, transgender individuals are particularly at risk of poor outcomes.

Almost four in ten transgender adults (38 percent) report experiencing lifetime depression—that is twice the rate of cisgender adults, KFF reported.

Forty percent of respondents in the US Transgender Survey of 2015—one of the most comprehensive reports on the transgender community in the US— reported that they had attempted suicide in their lifetime. This was almost nine times the attempted suicide rate of the entire US population at the time.

Additionally, a third of the US Transgender Survey respondents said that they had one or more negative experiences with healthcare professionals. Almost a quarter of the respondents said that they had avoided medical care in the previous year out of fear of mistreatment for their gender identity.

These data reveal the urgency of reducing barriers to care for the transgender community and they also hint at the important role that payers and employers can play in securing greater access to high quality care.

What is the status of transgender healthcare coverage?

The Affordable Care Act marked a significant shift in the nation’s legal position regarding transgender healthcare coverage. 

Before the law went into effect, payers could deny coverage to members of the LGBTQ community or raise rates based on gender identity or sexual orientation or for certain conditions that strongly impact this patient population. However, under the Affordable Care Act’s Section 1557, this is not permissible for compliant plans.

More recently, in June 2020, the Supreme Court decided an important case that impacts healthcare accessibility for the transgender community. 

The case of Bostock vs Clayton County involved individuals who were fired from their workplaces for causes related to being gay or transgender. The Supreme Court determined that if an employer fired an individual for their gender identity, this would be considered a violation of Title VII of the Civil Rights Act.

While the case refers to employment discrimination, experts immediately identified implications for healthcare.

The Biden administration, for example, affirmed a broad interpretation of this Supreme Court decision via an executive order. The executive order stated that any laws prohibiting discrimination encompass discrimination on the basis of gender identity and sexual orientation. This includes healthcare discrimination laws, such as the Affordable Care Act’s Section 1557.

“At a very minimum, companies need to be in accordance with current clinical practice, otherwise they're indefensible legally and they're facing liability under both Section 1557 and then the employer context under ERISA,” Noah Lewis, director of the Trans Health Project at Transgender Legal Defense & Education Fund, told HealthPayerIntelligence. “Tying the standards to WPATH's would be the way to go. But I see time and time again when companies diverge.”

Outside of legal injunctions, the WPATH Standards of Care—which experts anticipate will be updated soon—provide guidelines for determining transgender healthcare services that health insurance companies should consider medically necessary.

The Standards of Care provide recommendations regarding assessing and treating gender dysphoria in children and adolescents, mental health, hormone therapy, reproductive health, voice and communication therapy, surgeries, postoperative care and follow-up, and lifelong preventive and primary care.

Each section details diagnostic guidance and criteria for different forms of therapies.

For example, when discussing mental health support for adults with gender dysphoria, the Standards of Care outline six criteria that the mental health professional should meet, including continuing education in gender dysphoria diagnosis and treatment.

Another standard to which payers and employers often turn for guidance on transgender-inclusive policy is the Human Rights Campaign’s (HRC) Corporate Equality Index.

In the Corporate Equality Index, HRC compiles data from participating companies regarding their human resource and health insurance policies related to the transgender community.

The 2021 Corporate Equality Index included over 1,140 respondents. Of those businesses, 767 earned a 100 percent in LGBTQ equality—a record high, despite the coronavirus pandemic.

HRC analyzed participants to see that they provided parity of partner and spousal benefits, removed blanket exclusions, and introduced transgender-inclusive healthcare benefits.

“The big buying pressure of employers, plus the legal pressure of the Affordable Care Act in the Section 1557, and then maybe some social pressure—you take those things together, and you've seen, in a five to ten year arc, an incredible change in the landscape of the benefits and what's available,” Beck Bailey, director of HRC’s workplace equality program, told HealthPayerIntelligence.

The number of companies that have transgender-inclusive health insurance has grown 22 times beyond the number in 2009, such that seven in ten participating Fortune 500 companies and nine in ten of all participants offered transgender-inclusive coverage. Nearly two decades prior, zero companies offered transgender-inclusive health insurance.

What’s more, healthcare spending rose minimally when employers expanded their health insurance options to include transgender-inclusive healthcare coverage, the Index showed.

These results suggest that businesses are starting to adopt a more transgender-inclusive approach to health insurance coverage.

What are the common gaps in transgender healthcare coverage?

Although these standards are in place and access to transgender-inclusive employer-sponsored health plans has increased, inconsistencies persist regarding what healthcare services self-funded employers will cover for the transgender community.

Self-funded employers and some Medicaid plans can still impose blanket exclusions, policies that broadly deny coverage for transgender-related healthcare services whether or not they are deemed medically necessary.

Furthermore, after eliminating blanket exclusions, health plans may still deny claims for categories of transgender-related healthcare services.

Lewis said that facial gender reassignment surgery, breast augmentation, voice therapy and surgeries, and facial hair removal are the transitional procedures that payers most often deny.

In contrast, genital surgeries and mastectomies are covered under most health insurance plans when there are no transgender exclusions.

According to Lewis, a long-time supporter of transgender healthcare coverage, employers and payers need to ask themselves: why was this exclusion established in the first place?

Take breast augmentation exclusions.

According to the Women’s Health and Cancer Rights Act of 1998, health plans that cover mastectomies must cover breast augmentation (prostheses and reconstructive procedures). This includes patients who have not yet developed cancer but who undergo a mastectomy due to a high-risk gene.

“So when you have breast cancer and you have a mastectomy and then you have breast reconstruction or augmentation in order to have breasts, that's reconstructive rather than cosmetic because you've had this illness and that's led to this course of care, and then to restore function, you have this reconstructive surgery,” explained Bailey. “It's the same surgery. But in that case, it’s reconstructive and medically necessary versus cosmetic."

This leads proponents of eliminating transgender exclusions to ask: given these protections for cancer patients, why would breast augmentation not be covered as a medically necessary procedure after a transitional surgery that was deemed medically necessary for gender dysphoria treatment?

“Why did these particular sets of procedures get singled out? There's no medical reason,” Lewis asserted regarding the various categories of transgender healthcare services that do not regularly receive healthcare coverage. “Since the mid-1970s, courts have found these procedures to be medically necessary. We’re really looking at bias and ignorance and prejudice as the reasons for these exclusions to be in there.”

Another major gap in this area of healthcare coverage is related to the number of healthcare professionals who are trained to perform transitional surgeries and services. The waitlists for these procedures are long, due to the lack of trained surgeons. Medical schools do not teach trans medicine, Bailey noted.

“The crux becomes: how do we show the medical community that these procedures for transgender people are medically necessary and the medical cause is gender dysphoria?” Bailey summarized.

General standards for determining medical necessity exist, but payers and employers must allow providers to determine case-by-case whether a treatment is medically necessary given the patient’s context, Lewis indicated.

“Anything other than an individualized assessment of medical necessity would be unlawful,” Lewis stated. “If there is a blanket exclusion for gender dysphoria or if there's a clinical policy bulletin that says ‘we consider breast augmentation to be cosmetic’ and they don't consider that person's individual need, those would be unlawful discrimination.”

The role of case management in improving transgender coverage, care

In 2016, an internal group of stakeholders at Blue Cross and Blue Shield Minnesota (Blue Cross) noticed that transgender healthcare was a recurring theme in conversations regarding tailored outreach and population health. 

“It initially started, actually, as a Frequently Asked Questions,” Ani Koch, principal sustainability design consultant of population health at Blue Cross, explained to HealthPayerIntelligence. 

“As we got deeper into it, we realized, ‘Oh, this is more than a fact sheet. We actually need some expertise in this area. We need to start assessing how we're going to address this topic overall.’”

The payer assembled its action learning team, a group dedicated to assessing Blue Cross’s approach to the transgender community internally.

“The first thing we focused on was getting it right on the inside,” Koch emphasized. “We focused on educating ourselves, reviewing our policies and procedures, and ensuring that we were really showing up as the employer.”

Simultaneously, Blue Cross deployed a human-centered design process in partnership with community-based organizations serving the local transgender and non-binary populations. Through these organizations, the payer connected with transgender and nonbinary Minnesotans to ask them what equitable health care would look like to them.

At first, the community’s feedback served to inform the payer’s internal strategies.

However, ultimately, Blue Cross shifted toward improving external interactions with the transgender community. That shift took the form of implementing a case manager dedicated to the transgender member population.

The first thing we focused on was getting it right on the inside. We focused on educating ourselves, reviewing our policies and procedures, and ensuring that we were really showing up as the employer.

By 2019, the company was ready to test the approach it had developed as a result of these conversations.

Blue Cross established a Gender Services Consultant position, with an individual taking on this role in the first half of 2020. Now, the payer directs transgender members to contact the Gender Services Consultant for assistance in navigating their health insurance.

“What we realized pretty quickly is that there were a number of cases that, if we just got involved in a more intentional way upstream, we were able to prevent a lot of downstream problems,” Koch shared.

Less than a year after establishing the Gender Services Consultant role, the payer started seeing positive results. Members reached out to express their relief now that they did not have to repeatedly explain their life story as a preface to their question regarding health benefits.

Apart from direct member communication, the payer also measures quality through member satisfaction surveys and tracks trends in its transgender community’s healthcare through aggregated claims data.

The action learning team evolved into a work group with members from approximately 20 distinct departments. The work group continues to convene each month to discuss transgender healthcare at Blue Cross.

“Without that, we really couldn't have an external presence that would be meaningful because that case manager would be in the position of trying to speak to the member, but not having that internal structure to come back to to get support through some of those systemic issues,” Koch said.

Involving the transgender community in forming the case management program was critical.

“The one thing that really comes up for me when I think about what makes this program initiative overall stand out is that we have had transgender people involved in the concept, the design, the implementation, all the way from start to finish,” Koch explained.

“Employing transgender people is important. Consulting with transgender people is important. And asking members and community members what's going to work for them is critical.”

In doing so, Blue Cross came to realize in a more intimate way that, as with other marginalized and minority patient populations, the transgender community can easily get lost within a healthcare system that was not formed with them in mind.

Moving forward, Koch said that the payer will continue in a posture of constant learning with the goal of recognizing trends in the transgender community more quickly and responding more efficiently to members’ needs.

Additionally, Blue Cross wants to become a leader in this space for other payers, to pave the path towards better transgender healthcare services and coverage.

And that is where communicating with providers becomes key.

Stakeholder communication about transgender healthcare

In order to provide effective transgender healthcare coverage and high-quality care services, payers have to be well-aligned with their provider and employer partners.

Blue Cross turned to providers as the experts in transgender healthcare, incorporating provider experiences into its overall strategy around serving the transgender community.

When it came to identifying high-quality providers and clinical experts in transgender healthcare for referrals, Koch said that the best resource was word-of-mouth. The company internally tracks when members express that they had a positive healthcare experience with a certain provider.

Koch pointed to another payer, Blue Cross & Blue Shield of Rhode Island (BCBSRI), as an example of what a strong referral system for the transgender community could look like.

BCBSRI’s LGBTQ Safe Zones program certifies organizations across multiple specialties related to LGBTQ healthcare in order to provide greater assurance to members that these providers will offer optimal care. As of June 2020, the company certified over 25 LGBTQ Safe Zones, including primary care providers, mental health programs, and emergency shelters.

When attempting to align with medical stakeholders on quality of care for the transgender community, data is essential. Having evidence that can demonstrate the gaps in care is crucial to bringing providers on board and changing care delivery for the transgender community.

However, many EHRs lack the ability to collect robust data on the transgender community.

“We're not collecting enough data on the health experiences of trans people, and that helps inform what research has done, and research helps inform the future of medicine, and what they study at medical school. And so, all of these things go round and round,” Bailey said.

But as data aggregators, payers can rectify the healthcare system’s impaired vision that results from this lack of data.

“We have a very specific lane as a payer,” Koch said. “We can utilize the information, claims, utilization and management data. We can paint a very clear picture for ourselves that supports existing national research that addresses disparities.”

Payers can also help resolve the data problem by departing from the gender binary, Bailey recommended.

Forms and pricing in health insurance require that members define themselves as either male or female. Instead, payers can improve self-identification options in order to hone their transgender data tracking.

“If my health insurance company doesn't know that I'm trans and how I'm using my services and what I need or don't need, it's not informing the landscape of healthcare more broadly, including healthcare education,” Bailey explained.

We're not collecting enough data on the health experiences of trans people, and that helps inform what research has done, and research helps inform the future of medicine, and what they study at medical school. And so, all of these things go round and round.

Whereas providers may look to payers for more data on their transgender patients, payers may look to employers for a model of how to improve transgender healthcare services and healthcare coverage.

Large employers have exerted demand pressure on their insurance companies to become more transgender-inclusive in their policies.

“The self-insured plans run by large employers preceded the private payer coverage,” Bailey said. “But they influence each other and, particularly in this space, the work of employers really started to influence the fully-insured or commercially available market by virtue of what was happening in the self-insured plans.”

A lot of the dynamic depends upon how large the employer is and whether or not it is self-insured (or “self-funded”).

Large companies with 500 to 1,000 employees or more tend to be self-insured, in which case the payer is merely an administrator of the plan. In such a scenario, the employer has far more leverage—and incentive, given its size—to pressure its payer to embrace transgender-inclusivity.

“That's why HRC focused on larger employers with self-insured plans in the CEI to create that change,” Bailey explained.

“Health insurance companies didn't want to insure trans folks, and didn't want to provide that coverage. But if we could get employers to want to do it, then they could be able to do it within the confines of their plans, regardless of what the health insurance companies wanted. And that's what really changed the market.”

In contrast, fully-insured employers (or “wholly-insured employers”) tend to be smaller companies that purchase a plan from a health insurance company. In this case, the payer takes on the risk, so the payer sets the rules regarding transgender-inclusivity.

“In those plans, you're limited to what you buy, and what you buy is limited by what Cigna or Aetna or whoever chooses to offer,” Bailey said. “There are some regulations on that. But it just depends on what you've bought.”

In fact, self-insured employers can serve as a model for payers that are considering reforming their transgender healthcare policies.

“Large employers have figured out that providing gender-inclusive care, gender-affirming coverage, is very good for business. And so we're looking to them to say how have they been able to do it,” said Koch.

Additionally, payers seeking to improve their transgender healthcare coverage can hire consultants to audit their policies, looking for coverage inequities and whether payers align with the WPATH Standards of Care.

Since the WPATH Standards of Care are likely to be updated very soon, payers should consider being audited to make sure that their policies coincide with the new standards, Bailey noted.

“We as an organization are very eager to work collaboratively with insurance companies and employers to get these policies fixed,” Lewis said. “We understand that there's a lot of historical discrimination. Then Bostock came out last summer and there's a learning curve for people to get these things fixed. But, the bottom line is, this discrimination is unlawful and it needs to be fixed now.”

Ultimately, Koch called on payers and the healthcare system as a whole to listen more closely to the transgender community and act accordingly.

“We need to get better at meaningfully and thoughtfully engaging our trans and non-binary communities,” said Koch.

“It's not just a booth at a Pride parade. But actually going out and asking thoughtful questions, asking how things are going and what people need. Believe the transgender community when they say this is a historical problem. We are not being served. We are not being treated with respect. We're facing health disparities. This is a problem. We can't just do the listening. We need to hear people and we need to believe them. And then implement change that shows people.”