The high cost of being transgender

Story highlights

  • It can cost more than $100,000 for a transgender person to transition
  • Some who can't afford a medical transition fear negative reactions and violence from others

(CNN)Nicholas Ballou binds his chest each day before leaving his home. It's so tight he often finds it hard to breathe and has gotten lightheaded. Throughout the day, he might touch his chest or adjust the wrap -- a nervous habit. Nothing can be out of place.

Ballou, a transgender male, cannot afford top surgery, which would get rid of his breasts and give him a more male-looking chest. At 23, he has wanted to have this surgery for 10 years, but it's expensive and it's unlikely he'll be able to cover the costs anytime soon.
    Caitlyn Jenner's highly publicized and often celebrated transition from male to female is not typical of what most transgender people experience. Jenner said so recently in her acceptance speech for ESPN's Arthur Ashe Courage Award at the annual ESPY Awards ceremony.
    "If you want to call me names, make jokes, doubt my intentions, go ahead. Because the reality is, I can take it," Jenner said. "But for the thousands of kids out there coming to terms with being true to who they are, they shouldn't have to take it."
    As part of her transition, Jenner reports having completed a facial feminization surgery, hormone therapy and breast augmentation.
    Many transgender people transition without surgery. Some say they don't want surgery, or are interested in only some of the medical options available. But many cite the cost of the procedures -- potentially more than $100,000 out of pocket -- and the lack of insurance coverage as a barrier to their transition. Still, they worry about how going without might affect their mental health and safety.

    The surgery: What does it cost?

    The cost of a transgender person's transition can vary widely, and pricing information is often not available.
    Eugene Schrang, a Wisconsin surgeon who specialized in gender reassignment surgeries before retiring in 2007, said most patients paid out of pocket for their surgeries, and it was rare for insurance to cover the procedures. Factors that affect the cost include the number of surgeries people want, where the surgeries take place and what type of insurance they use. They also might incur additional costs for travel, hospital stays and psychological evaluations.
    In Pennsylvania, the Philadelphia Center for Transgender Surgery posts cost estimates for different procedures. Its price list mentions estimates of $140,450 to transition from male to female, and $124,400 to transition from female to male. This list, unlike many others, includes potential costs for things such as anesthesia, hospital stay and each of the potential surgeries that someone transitioning from one gender to the other may want or require. These numbers are based on one surgery center though, and will change depending on factors such as insurance, the hospital that is attended or if someone is using a different surgery center altogether.
    Jo Avelyn Grey estimates she will have paid $70,000 to $80,000 out of pocket by the end of her transition.
    Jo Avelyn Grey came out as transgender to her family at 11 years old and began to transition medically four years ago, in her early 20s. Some of Grey's medical expenses are covered by her insurance, Kaiser Permanente, including her hormone therapy, a portion of her gender reassignment surgery and preparatory genital electrolysis that has to be done before the surgery. The insurance does not cover facial electrolysis (beard removal), laser body hair reduction, breast augmentation or facial feminization surgery, all of which Grey considers vital to her survival as a transgender woman.
    "No one sees me as physically female, just obviously transgender. This makes me an outcast and puts me at an extremely elevated risk for discrimination and harassment," Grey said. "Just covering hormones and gender reassignment surgery is a half measure that still leaves us exposed to great risks and complications in our everyday lives."
    Deborah Espinal, executive director of health plan policy for Kaiser Permanente, said in a statement, "Kaiser Permanente is committed to providing culturally competent care to all of our members and patients. We continue to provide a spectrum of services, in compliance with state mandates, for transgender individuals that includes hormone replacement therapy and behavioral health services throughout all the states that we serve.
    "In some states, mandated services include services such as gender reassignment surgery, and mastectomy with chest reconstruction. Our approach is to evaluate service coverage both in terms of what is required by each state and what these patients need to have available to them in order to properly transition. As with all health care decisions, we encourage our members who are interested in transgender medical services to discuss their health care needs with their Kaiser Permanente physician."
    In addition to the surgeries that her insurance does not cover, Grey pays a $30 copay for genital electrolysis sessions, which she must attend two to three times each week for about a year before her gender reassignment surgery. She estimates that by the end of her transition, she will have paid $70,000 to $80,000 out of pocket.

    Insurance and surgery

    More insurance plans are likely to cover transitional procedures for transgender people than in the past.
    In a 2013 survey by Jody Herman, manager of transgender research at the Williams Institute, employers characterized the costs of covering transition-related coverage "negligible" and "minimal" because so few people used those services. The survey included 34 U.S. employers who cover transition-related health care. There are between 100 and 500 genital surgeries every year in the United States as part of gender transition, according to the Encyclopedia of Surgery.
    "Overall, we find that transition-related health care benefits have zero or very low costs, have low utilization by employees, and yet can provide benefits for employers and employees alike," Herman writes.
    In 2014, the Affordable Care Act, commonly referred to as Obamacare, stated that health insurance providers could no longer discriminate based on gender or health history, though some insurance agencies are finding ways to get around this policy change.
    Ballou said that while this development is a helpful step, it hasn't allowed him to obtain the coverage he needs to get top surgery. He has bound his chest for 10 years and said it's intensely painful to ensure that no one knows he was born a woman. He does not have insurance because he said that the insurance agencies that provide Obamacare in Nevada still mark the surgery as cosmetic. He is currently uninsured while he searches for a company that can adequately fit his needs.
    Nicholas Ballou says he has not been able to obtain the surgery needed to complete his transition.
    Ballou said he realized he was transgender when he was 3. He recalls running around his backyard in his underwear, screaming at his mother that he would not put on a dress because he was a boy. He first realized there was a word for who he was at 13, and he began to transition with hormone treatments when he was 16.
    Ballou is still struggling to become the person he wants to be. In California, where he grew up, state law says health insurance companies must cover transgender health care. He was on an eight-month waiting list to obtain the surgery finally when he switched jobs and moved to Nevada.
    He has had no luck in finding a health insurance that will cover the surgery; all the companies he has called label it as cosmetic.

    The costs of not transitioning

    Even as many insurance companies label transition-related surgeries as cosmetic, transgender rights activists argue that the surgeries are necessary and could decrease mental health issues and violence toward transgender people.
    Kristen Lovell, a transgender woman in New York, said that the culture has changed from 15 years ago when she was going through her transition. Still, through her work at Sylvia's Place, an emergency shelter in New York, she sees that transgender people continue to face violence and that people who are unable to transition are more likely to feel depressed or attempt suicide.
    The National LGBTQ Task Force says that one in four transgender people have experienced violence. The American Psychological Association says that the lack of acceptance for a transgender person creates an inner sense of not belonging as well as discrimination and harassment by society.
    "Passability is definitely a privilege," Lovell said. "As you're transitioning, you're prone to have increased lash outs from people because your appearance isn't appealing to them. People always want to fight what they don't understand. It puts people who are starting to transition in danger."
    Passing defines one person living in his or her chosen gender without anyone knowing he or she ever lived in a different one, according to the National LGBT Cancer Project. In broad terms, passing can mean different things to different transgender people, but it usually refers to no one being able to tell that an individual is transgender.
    Ballou said he lives in constant fear, and he'll continue to bind his chest each day and search for a way to have his medical procedure. He said he may need to move back to California to have it done.
    "I haven't stepped out of my house in 10 years without serious binding," he said. "It's constantly on my mind; I'm never not thinking about it. It's really hard. It's just a consistent fear."