Equal Access: Fighting for transgender health care

When Darla Lannert saw the Amazon Prime series “Transparent,” she sobbed. The lead character is a father and transgender woman who comes out to his adult children. And while the show is billed as a comedy, Lannert didn’t see the humor. She says the storyline went “right to her soul.”

Lannert is a transgender woman. She came out to her then-spouse of 25 years in 2002 and their three adult children in 2012. Since age 7, she identified her gender as female but felt trapped inside a biologically assigned male body. For most of her married life, Lannert drove a truck across the country. She lived a solitary transgender existence–no transgender community, no transgender friends. In 2001 that changed, she says, when the internet introduced her to “more people like me.” Until then, Lannert cross-dressed in private to access the woman she hid from the world.

Lannert is among the 1,000 to 1,500 transgender people in Madison, an estimate cited in a study by OutReach, a Madison-based advocacy group in southeastern Wisconsin serving the lesbian, gay, bisexual, transgender and queer communities as well as those questioning their sexual orientation or gender identity. The widely used acronym for this community is LGBTQ. Lannert is also among a small percentage of people who openly identify as transgender, or whose self-identification is in conflict with the gender to which they are born into, or anatomically assigned, as the trans community prefers to define it. That percentage nationally is an estimated 0.3 percent, according to a report by the Williams Institute at UCLA Law School.

Now living as a woman with the use of hormone therapy, Lannert, a U.S. Navy Vietnam-era combat veteran, receives health care coverage through the Veterans Administration. The VA covers Lannert’s mental health care, in part because of her traumatic experience of being raped and left for dead while on duty. In addition, the VA covers most of her transgender-related transition care, with the exception of gender reassignment surgery, a policy that Lannert is actively working to change.

“Access to all transitioning health care is important for the mental and physical health of every transgender soldier, sailor, airman, person,” says Lannert.

However, health care coverage for transitioning is accessible only to a small population of Madison’s transgender community. And “inclusive” transition health care coverage is almost unheard of in Dane County. This is about to change through grassroots efforts by the Madison-based Transgender Healthcare Group. Since it formed in 2014, the group has made inroads within the county and their efforts are ongoing.

But first, to grasp what’s taking place at the local level, it’s important to understand what transgender people face when seeking options for their specific health care needs.

Understand Trans Care

Gender identity should not be confused with sexual orientation–the two are unrelated.

Some of this confusion is being addressed through television shows, like “Transparent,” and by coverage of celebrities such as Laverne Cox of the Netflix series “Orange Is the New Black.” Cox is the first transgender woman to have a lead actress billing in a TV series. This kind of programming has helped push this issue into the mainstream. Plus, as many college campuses across the U.S. adopt gender neutral pronouns such as ze or e in their communication, Facebook has moved in the same direction by offering 50 gender-identifying options to its members.

Still, transgender people historically have been stigmatized and often misunderstood. Their health care needs are complex and out-of pocket costs can be staggering.

The American Medical Association defines transgender health care as including but not limited to hormone replacement therapy, gender-confirming surgeries (also known as sex affirmation surgeries) breast augmentation and reduction, electrolysis and laser treatments for facial hair removal, vocal surgery and voice training. Comparatively, Lannert’s coverage through the VA beats the majority of coverage available to transgender people in the Madison area.

Lannert, a board member of OutReach and a member of the Wisconsin Healthcare Coalition, lectures on LGBTQ health care to health care providers at institutions such as the William S. Middleton Memorial Veterans Hospital on Madison’s near-west side. She says some transition-related surgery costs can reach as high as $100,000. That can be devastating for those who seek such treatments but are unable to access or afford them.

Despite the AMA’s official position that trans health care is medically necessary, most employers don’t offer it and many private health care companies, with few exceptions, don’t offer inclusive trans care policies.

Brittyn Calyx, a transgender woman who works as a transgender health consultant for OutReach, advocates for comprehensive transgender-inclusive health care plans in the Madison area. Calyx says transgender people in Dane County have little access to transgender health care coverage unless they are on Medicare or work for private companies that self-insure, such as Shopbop or Northwestern Mutual Life Insurance.

For example, Group Health Cooperative offers only transition hormone therapy coverage because the company doesn’t have physicians trained in trans health care, and no businesses in GHC’s network are requesting inclusive policies for trans health care, says Dana Spychalla, communications manager for GHC. In Wisconsin, Medicaid, which provides health care to low-income residents, offers no trans health care coverage. A customer service representative for Unity Health, another Wisconsin-based provider, says that transgender health care is not part of Unity Health’s coverage. These are just three of 20 insurance providers in the state that offer individual accident and health care coverage, according to the Wisconsin Office of the Commission of Insurance, but no state provider offers inclusive trans health care coverage.

Part of the problem is a lack of access to physicians trained in trans health care. A 2011 report by the national Institute of Medicine shows that the average time dedicated to LGBT-related issues in medical school to be as few as five hours. The study reports that this contributes to a growing need for trans health care and “a profound and poorly understood set of additional health risks due largely to social stigma.”

Dr. Jamie Conniff is a fellow at the University of Wisconsin-Madison Department of Medicine and Community Health. Conniff has a practice at the UW Health Northeast Family Medical Center in Madison, a facility with a reputation as a primary health care provider to the transgender community. Conniff sees as many as 25 transgender patients in his current roster. He says trans people are telling providers they need inclusive care, and insurers are ignoring that. Yet Conniff, a 2011 graduate of the Columbia University College of Physicians and Surgeons, says that even for someone with coverage, finding doctors who understand trans care is difficult.

“What is needed is a real change to medical school curricula,” says Conniff. He says Columbia University is a model for other institutions, yet as a medical student, he was offered only one option: an hourlong session over a lunch hour that covered LGBTQ health care needs.

Dangerous consequences

Inaccessibility to coverage can trigger reactions that hold life-or-death consequences. The American Congress of Obstetrics and Gynecologists, an organization that urges public and private health insurance plans to cover transgender care, reports that 54 percent of transgender youth surveyed have attempted suicide and 21 percent resort to self-mutilation. Also, more than 50 percent of people who identified themselves as transgender have used injectable hormones that were obtained illegally or used outside of conventional medical settings. Further, due to lack of medical coverage, many individuals seek out illegal silicone injections–a dangerous alternative to costly physician-provided care–to spur masculine or feminine physiological changes.

The lack of services is why Lannert says she understands firsthand why 41 percent of U.S. adults who openly identify as transgender have attempted suicide, a statistic cited by the Williams Institute from findings of a national transgender discrimination survey.

“Because I was able to see a gender therapist and to have them help me access the care I needed, I could have a healthy transition,” says Lannert. “Once I was able to medically transition, my mind and my body came together; the testosterone blockers enhanced the effect of finding peace in my life. It’s just incredible. I can’t explain the euphoria I felt after six months on estrogen. It was just like being born again.”

Until 2015, transgender individuals were labeled as having a “gender identity disorder” by the Diagnostic and Statistical Manual for Mental Disorders. More recently, however, the label was replaced with “gender dysphoria,” says Calyx, who is also a member of the Wisconsin Transgender Healthcare Coalition.

Calyx says transgender health care is not about treating transgender identity as a disorder; it is about providing comprehensive, medically necessary treatment to people transitioning to their self-identifying gender. That includes treatments that run the spectrum between less-expensive hormone therapy and often cost-prohibitive gender-confirmation surgeries.

“When people don’t get the health care they need, we’re looking at suicide, and part of that can be omitted or prevented by having transgender inclusive care.”

She says people called her courageous for transitioning, but it wasn’t about that.

“For me it was surviving–a life-or-death situation. For me, if I didn’t get access to hormones, I was going to die.”

Struggle for equity

Anders Zanichkowsky, a transgender male, is visibly comfortable in his own skin. He attributes his confidence to being raised by an academic, feminist mother in the 1990s, an era he remembers as all about empowering girls. Back then, Zanichkowsky, now 30, identified as a girl. So when he decided to transition from female to male, he drew upon the political education he cultivated in his youth.

Zanichkowsky says self-advocacy and the support of Madison’s trans community–with its long history of activism–helped him to pursue testosterone therapy for gender transitioning in 2011. After months of struggling to find the right doctors, facilities and treatments, Zanichkowsky teamed up with others in the local transgender community to advocate for equitable insurance coverage for their health care needs.

Unlike Lannert, Zanichkowsky’s health care provider at the time did not cover any services related to gender transition. So Zanichkowsky brought information on testosterone therapy used for gender transitioning to his first appointment. He says the physician initially seemed engaged while asking him questions about his transgender “lifestyle,” making him feel hopeful, yet somewhat patronized. He was stunned when, after a lengthy interview, the physician told him she was too busy to work with him.

“It was voyeurism and 100 percent dismissal,” Zanichkowsky says about the consultation.

Zanichkowsky’s disappointing experience didn’t disillusion him. On the recommendation of friends, he found a respectful and accommodating physician at Wingra Family Medical Center. But he still pays out of pocket for transgender-related care and hasn’t forgotten the big picture–lack of affordable coverage for the bulk of the transgender community. This pushed him to help form the Transgender Healthcare Group, which he founded with a small group of friends and transgender allies in September 2014. The group’s mission is to change the health care playing field for the Dane County transgender population.

Meeting of like minds

In February, Zanichkowsky hosted Z! Haukeness and Alex Hanna–two fellow founders of the Transgender Healthcare Group–at his place on Madison’s east side. Haukeness is a friend with whom Zanichkowsky connected years earlier while standing outside a Madison gay club–a place in which neither felt comfortable. They later met Hanna through mutual friends. Collectively, their work covers a wide spectrum of issues that adversely affect marginalized communities. So it was a lack of social milieu for trans people that connected them, but a dedication to undertaking such issues as trans-inclusive health care that unites them.

As at many of their gatherings, the group’s conversation that day centered on transgender disparities, how disadvantage and discrimination can lead to low-income lifestyles, homelessness and, for some, crimes of poverty. They talked about disproportionate sexual abuse and the high percentage of incarcerated black trans women. Haukeness pointed out lawsuits filed by Lisa Mitchell, a transgender woman of color in Madison who is attempting to negotiate a settlement with Dane County for being housed with men while in the Dane County Jail and for having her hormone therapy withheld. Haukeness, a community organizer, has advocated for Mitchell and assisted her with filing the lawsuit and two others: one against the Department of Corrections for parole officer abuse and another against the Dane County Department of Health Services for lack of estrogen therapy coverage.

Haukeness is a transgender person who identifies as nonbinary, or gender neutral, and uses the singular gender-neutral pronoun “they,” a usage that has become so widely recognized it received the 2015 Word of the Year award by the American Dialect Society. Haukeness divides their time between organizations such as the Wisconsin Network for Peace and Justice, Operation Welcome Home, Freedom, Inc. and Groundwork Madison. Like the other two activists, Haukeness is open, affable and self-assured, and understands the social justice intricacies of nonprofits and legislation. Their first name, Z!, is a nod to the gender-neutral pronoun ze. Haukeness deleted the “e” and added the exclamation point “for fun.” Not surprising. There is a lightness emanating from all three in the room, even when passionately discussing these serious issues.

Hanna, a Ph.D. candidate in sociology at UW-Madison, is also transgender and identifies as “she” or “they.” Hanna bristles at the thought of being called “he,” her biological gender assignment. She is often questioned with skepticism when she identifies as female over the phone. Her frustration is palpable as she discusses being systemically dismissed.

As an activist and student, Hanna has worked collaboratively with Pam Oliver, her sociology professor and a local activist who studies collective action and social movements, as well as racial patterns in imprisonment and criminal justice. Together they approached the state of Wisconsin to include transitioning health care in state employee health care coverage, which explicitly excludes transition-related care. According to Oliver, the projected number of transgender claimants for Wisconsin state employees is low, about 27 people. The projected cost of utilization is also low, with a maximum projected expense of 0.063 percent of all premiums paid–a percentage that Oliver says was figured by using a 2012 actuarial report by the Insurance Board of the State of California. In a letter to the state of Wisconsin, Oliver and Hanna asked that the state’s insurer, Group Health Insurance, remove this exclusion. In response, the state agreed to update discriminatory language but would not discuss including transgender health care options this year.

United for change

Hanna eventually joined the Transgender Healthcare Group, which was focused on change at the county level. The group turned to Kyle Richmond, a gay Dane County board member, for support, and he ultimately accompanied them to Dane County’s administrative offices to negotiate. As a gay policy maker, Richmond had a foot in each camp and wanted to make sure the group’s request was taken seriously.

“We’re a very progressive county with a large LGBTQ population, and lots of people involved and civically engaged in local government are LGBTQ,” says Richmond, singling out U.S. Rep. Tammy Baldwin, a lesbian. “There’s a long tradition and large LGBTQ community here in Dane County. I wasn’t surprised they’d be well organized and ready to make the argument.”

The group did its homework. Hanna says it’s hard to say how many transgender people work for Dane County. Using the report by the Williams Institute as a guide, she arrived at an estimate of seven employees. “This is much higher than other sources, but we used this figure in our materials in order to show that even at its highest number, trans health care for county employees wouldn’t cost that much,” says Hanna.

Using data on insurance claims of areas such as San Francisco and Portland, Oregon, where private insurers provide inclusive coverage for trans care, the group showed that actual incurred costs were far lower than projected, and are essentially negligible when averaged across large, insured populations. Also, the frequency of medical needs was low, and the cost for services was low relative to other common medical needs.

According to information gathered on the San Francisco market, insurers initially imposed a modest surcharge for transgender care; insurance company surcharges took in $5.3 million in additional revenue from 2001 to 2006 while the actual costs incurred were $386,417. Based on this experience, San Francisco insurers stopped charging separately for transgender care. Using this data, the Madison group estimated that health care utilization would be low, with a maximum projected expense of 0.076 percent of all premiums paid. The group then drafted a proposal and sent it to Dane County’s Department of Administration in January 2015.

The group met with administrators at the City-County Building several times in the spring of 2015. Zanichkowsky says approaching and entering the building was difficult. “We have gone and testified for funding and legislation for all kinds of stuff, so that building is already a contentious place,” Zanichkowsky says.

Although it was a bit intimidating at first to be in that setting, Zanichkowsky says the interaction overall went well because all parties listened and asked insightful questions.

Not only that, says Haukeness, it was affirming to work with professionals who accepted them as trans and nonconforming.

“I have to think every day about what I wear and how much harassment I might face or not, especially in terms of meeting people in power,” Haukeness says. “So there was a little bit of a feeling that I’m not going to have any power because of how I present myself … And yet, we’re at the table together. This is our world and that’s their world and they were still like, ‘We want to make this work for you.'”

Richmond, who had been in county government for 14 years, says they deserved to get equal treatment, but he knew they had to prove fiscally that this is something the county could handle. “They had the numbers, so it was a very professional and amicable meeting.”

Carlos Pabellón, Dane County interim director of administration, says transgender health care benefits were, at a minimum, something the county wanted to explore, but points out there is still ignorance about what it means to provide this benefit and what cost impact it would have on the health insurance provider.

“They brought forth a very significant issue,” says Pabellón. “They worked with us really closely not just to present the issue at hand, but providing a lot of information and data I would not have been able to come up with on my own–data that revealed that there is no real significant impact to providing such a benefit to our employees.”

The work continues

Last February, the county launched its health insurance request for proposals for 2017, requiring insurance companies to attach a list of in-network providers for services related to transgender health care and to provide costs for two options: those limited to a $25,000 lifetime maximum and no lifetime maximum. As Pabellón points out, the Transgender Healthcare Group–through its efforts–got the county to act, but there’s more work to be done. The county will have to go through applications before it knows what providers bring to the table in terms of coverage.

Meanwhile, the group has carved a preliminary inroad into health care equity.

Zanichkowsky, Haukeness, Hanna, Calyx and Lannert are out, they’re visible and advocating for change. But for most trans people, this is not the case. Inclusive health care could transform their lives.

“Most trans people are afraid to go out in public, afraid of someone knowing they’re presenting as something that they’re not,” says Lannert. “It’s this simple: The health care system has failed the transgender community–it’s the No. 1 issue in every trans person’s life.”

Essential Transgender Terms

(By Emily Mills, editor, Our Lives Magazine)

There are many terms used to describe and identify within the LGBTQ population. If you’re unsure, ask someone how they would like to be addressed and what words and terms they’re comfortable with.

Transgender Woman: People who were assigned male at birth but identify and live as a woman may use this term to describe themselves. They may also use trans woman or MTF (male-to-female). Some may prefer to simply be called a woman.

Gender Identity: One’s internal, deeply held sense of one’s gender. This may include terms like transfeminine, transmasculine, masculine of center, butch, femme, etc.

Gender Expression: External manifestations expressed through one’s name, pronouns, clothing, haircut, behavior, voice, or body characteristics. Both trans- and cisgender people can be gender non-conforming, gender expansive or genderfluid in their expression (and/or identity).