Health Care Maverick

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Educator and activist Krystal Gilliam is on a mission to improve the health care system for LGBT people. If you doubt her ability to achieve this goal, you don’t know her very well.

A 10-minute phone conversation changed Krystal Gilliam’s life.

Early one morning, Gilliam, a cancer specialist at the American Cancer Society for the past four years, took a call from a woman living in California who had just been diagnosed with breast cancer and who made it clear to Gilliam that her primary concern was for how everyone in her family would deal with the diagnosis. Scared that her fiancée would leave her, and suffering from a lack of knowledge about breast cancer and her own diagnosis, she asked Gilliam how to broach the subject with her children. “She said, ‘I am African-American and I’m not sure if that’s a barrier with me talking to my doctor as well because it seems like he’s not as comfortable as he could be,’” said Gilliam. “From there it was a like a lightbulb going off in my head.”

With a laid-back, open-hearted personality, and a general soft-spokenness that makes her uniquely suited to her professional life and her nonprofit commitments, Gilliam chose to make equality–focusing on disparities in how health care providers and professionals interact with African-Americans, Hispanics and LGBT people–a priority after speaking with the caller from California.

3-1“Equality is important to me,” said Krystal Gilliam. “Those of us who have a voice and are of sound mind should use our positions, talents and influence to help those who are often overlooked or ignored.”

Gilliam received her master’s degree in public administration at Texas State-San Marcos. Her applied research project, essentially a thesis, is titled “A Model Cultural Competency Handbook for Health Care Professionals: creating an ideal Handbook to Reduce Disparities.” the project, which Gilliam would like to turn into a reference guide for health care professionals, developed a model to identify and describe the primary categories in a cultural competency handbook and included a consultation with 10 health care professionals who provided feedback, prompting the development of a revamped model.

Areas of focus include cultural customs, historical perspective, health information and privacy, creating a safe space for LGBT patients, screening and education for LGBT patients, translation guidelines, recommended phrasing, and culturally representative photography and font type.

“A lot of hospitals are behind the curve,” Gilliam said. “It’s about making sure that doctors know how to get in touch with translators, if needed, and knowing how to communicate with patients who are a part of the LGBT population.”

Building Bridges

Cancer is life altering and mind warping, forever changing one’s perspective on science, care-taking and the health care system. For LGBT people, the diagnosis comes with extra baggage. Since many insurance companies don’t cover unmarried partners, uninsured members of the LGBT community face that hurdle. There’s also the omnipresent fear of discrimination–many gay men and lesbians hide their sexual orientation from their doctors because they don’t want homophobia to affect the quality of health care they receive. Fear of having a negative experience with a health care professional causes many to postpone necessary medical care, such as early detection cancer screenings, which can have a major impact on future treatment options.

At the American Cancer Society, Gilliam is one of 150 to 200 cancer information specialists whose mission it is to educate the general population, demystify the topic of cancer and serve as a sounding board for the newly-diagnosed. Most callers have just received some of the worst news of their life, but every day is different and brings its own unique challenges. “There have been moments when a person’s story or situation has really moved me and I have to take a few moments to process what I’m feeling and get myself together,” she said, adding that an ACS event a few years back had a profound impact.

In May of 2008, Gilliam attended her first Relay for Life. Relay for life is an annual event hosted by the ACS that takes place in cities across the country to celebrate the lives of people who are battling cancer, remember the lives that have been lost and fight back against the disease. Amidst the hundreds of participants, Gilliam had a chance, for the first time, to sit down and have long conversations with cancer survivors and caregivers. “Many of them told me ACS helped them make the right decisions regarding their treatment or that our staff was there to help and listen when they needed us most,” Gilliam said. “When a total stranger says you’ve made an impact on their health and in their life, that does something to you.”

She studied public health as an undergraduate at southwest Texas and finished her degree at the University of Houston. A class where epidemiology–the study of health and illness patterns (and associated factors) at the population level–was brought up piqued her interest. In the summer of 2006, after deciding to get her masters degree, Gilliam contacted all the major hospitals in Houston and was called back by an epidemiologist at the University of Texas M.D. Anderson Cancer Center in Houston.

Gilliam started working there in June 2002 and was a research interviewer for a study of the habits of Mexican Americans called the Mano a Mano study. One of the largest of its kind in the country, the study is monitoring 20,000 Mexican-Americans over the course of 15 years–looking at health habits, illnesses and behaviors through a cultural lens to see how participants progress health-wise and how they compare to other demographic groups.

While working at M.D. Anderson, she met Tony Choy, a patient advocate at the center for the past 13 years who ended up becoming one of her closest friends. They connected instantly and developed a deep friendship, built around a common interest in the health care field and a shared sense of humor. Choy described Gilliam as very focused at work, but also a great team player and deeply analytical.

“From the moment we met we understood each other,” Gilliam said. “Sometimes the universe just works like that.”

They used to carpool to work for two years, living only blocks from each other, and Choy would offer her money for gas–she was on a student’s budget then–but Gilliam refused to take it. “I remember Krystal telling me that’s what a good friend does for another good friend.”

“He’s a total gentleman,” she said. “He and I would have great conversations about heartbreaks, race, family, religion, you name it,” she added. “Nothing was off limits.”

Gilliam also recalled seeing a woman wearing a full-on, colorful Mardi Gras mask while driving with Choy in Houston: “She was actually looking in her mirror adjusting the feathers on the mask. She was acting like it was so normal,” Gilliam said, laughing. “Meanwhile, Tony and I are driving next to her laughing our butts off.”

Choy, who is currently pursuing his executive master’s degree in business administration, said that Gilliam inspired him to further his own education. “To me, she’s a role model,” he said. “She is caring, compassionate, honest and extremely humanitarian.”

“Tony genuinely cares about the people in his life and values the friendships and the people in his life,” she said. “I don’t just hear from him through Facebook, he actually picks up the phone and calls me to see how I’m doing and asks about my family.”

When Gilliam left M.D. Anderson, she was planning to start at Texas State in the fall and look for a job in central Texas. When she started at ACS in 2006, initially part-time, she was at the be- ginning of her program. Gilliam’s experiences interviewing people and researching for her paper opened her eyes to the challenges for minority groups in our health care system. “When it came to language barriers, I was surprised at how dismissive some health care professionals can be,” she said. “They could have translators there, but they don’t consult them. If you’re telling somebody, ‘Hey, you have stage four small-cell lung cancer, and you’re terminal, you don’t want somebody’s kid telling a patient that.”

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In the course of her work, Gilliam found bulkier hospital manuals that touched on some of these topics or didn’t mention them at all, but she hasn’t discovered anything remotely comprehensive.

The LGBT population was the most difficult to gather information on, according to Gilliam, who noted that there just isn’t a lot of literature out there currently that focuses on how LGBT folks interact with the health care system. “It’s doctors’ reluctance to bring it up and patients not always feeling comfortable,” Gilliam said, noting that the Affordable Care Act, signed into law by President Obama in march, encourages the collection of health data regarding the LGBT population.

“When I do develop it more,” Gilliam said, “I want it to be a little booklet that doctors can carry around in their bag or pocket and just take it out and use it when needed.

Listening With Care

“I just let people talk and try to let them get everything out without interrupting them,” Gilliam said.

The vast majority of callers she interacts with at the American Cancer Society haven’t been able to get a word in edgewise, as they’ve been listening to doctors, listening to family members and listening to insurance companies. “Active listening has always been easy for me,” she emphasized, “so closing my mouth and opening my ears is the first step in that process.”

Her ability to listen with empathy, and to understand the circumstances of her clients at ACS, is partly a result of her family’s struggle. Gilliam’s parents divorced when she was 7 so that her father, who had been newly diagnosed as schizophrenic, could get the medical care that he needed. “It was really difficult for my mother to find help for my dad, so I have a deep appreciation for organizations that provide support and help to those dealing with a life crisis,” she said.

Schizophrenia, a mental disorder characterized by a disintegration of the process of thinking and emotional response, manifests in the form of hallucinations, paranoid or bizarre delusions, disorganized speech and thinking. It also tends to be accompanied by significant social or occupational dysfunction. Her mother struggled with how to move forward.

“She didn’t want to divorce my father, but in order for him to get the help that he needed, she had to,” Gilliam said. “It was a push and pull between [my mother] and his religious parents. But in the end, it all worked out.”

4-1Like many people who have schizophrenia, her father did his best to hide and manage his condition. When he had manic episodes, which Gilliam never witnessed, she knew that wasn’t really him. Still, her father’s absence from her life–from the age of 9 until she was 17–was hard on her. “I always knew him as this quiet, loving person,” she said. “My mother and I helped each other heal. We just relied on the hope that one day he would find his true self and be happy, and he did.”

Born in Lake Charles, Louisiana, about 40 miles from the Texas border, Gilliam and her parents moved to Houston when she was three, so although she does not consider herself a Texan, she’s lived here for the majority of her life. Gilliam’s mother worked in administration at a number of firms; her father, who used to work at Exxon’s plant in Baytown, could tell you exactly what chemicals go into a tire or a can of hair spray. Her grandfather, who made his mark as a community leader in the part of Louisiana where she grew up, was the reverend Harvey Gilliam.

Crediting her mother’s influence with providing the foundation for her own self-acceptance and her broader understanding of difference, whether related to race, class, ethnic background, gender or sexual orientation, Gilliam said that her mother made sure she was exposed to a diverse range of people as a child.

Accepting Her Truth

When Gilliam was eight or nine years old, she remembers going with her mom to her aunt’s house and seeing a friend of theirs who used to do drag. “He was all–done up! –and I was like, alright.” she said, noting that her middle school, Gregory Lincoln, was in Houston’s Montrose neighborhood.

Despite the fact that her mother never had any issue with lesbian or gay people, coming out to her wasn’t easy. Over dinner at the age of 22, after Gilliam mustered the nerve to say it through tears, her mother burst out laughing. “She’s like, ‘is that it? I thought you were going to tell me that you were dropping out of school or that you were pregnant,’” Gilliam said, smiling at the memory of it. “It was like, whatever, pass the peas.”

Coming out was more of a non-event, but Gilliam’s initial interaction with her girlfriend, Regina Miles, was the exact opposite. Gilliam and Miles met at Dinah lakeshore, one of the Human Rights Campaign’s largest outreach events for women, in September of 2009, a few months after a mutual friend, Paula Desmond, who’d been meaning to introduce them, told Gilliam about her. Gilliam spent most of that sweltering night stealing furtive glances at Miles while running around to help the bartenders or work with the DJ, pausing finally to catch her breath and hop on a boat–she doesn’t like boats–where miles was on board heading back to the parking lot. Gilliam was nerve-racked beyond belief.

“It was the perfect opportunity and I kept saying to myself, “God, please make sure I don’t say anything stupid,” Gilliam said. “I’m so glad I got on that boat. It changed my life.”

They made plans to meet again, breaking the so-called rules of dating along the way, and, according to Gilliam, solidified their bond on date number two over dinner at Home Slice Pizza.

“We talked about religion, family, past relationships, pretty much everything you’re not supposed to talk about early on in a relationship,” Gilliam said. “But that conversation showed me we had very similar values and wanted similar things out of life. Despite spending a good part of the evening in an intense conversation, we had a great time and found a lot of things to laugh at. It was a perfect evening.”

“Krystal has one of the best memories of anyone I know,” said miles, a native Texan and decade-long resident of Austin. “It’s amazing the things she can recall from early childhood to today. She’s also a huge football fan–and yes, she can remember details about players and past seasons like no other.”

“I do have a freakish memory,” Gilliam admitted. “For instance, my mother and I were in a car accident when I was 12 and to this day I can’t listen to that Marky Mark song “Good vibrations” because it was on the radio when a lady ran a red light and hit us. I remember the station it was playing on and everything.”

“We definitely had chemistry and our sense of humor is very similar,” said Miles, who works as a bids and contracts administrator for a Global Education Company.

The couple’s date nights tend to revolve around food, movies and great conversations. Unafraid to challenge each other, they’re both passionate about human rights and doing what they can to help others. “Krystal volunteers her time to the Human Rights Campaign and I have volunteered with Project Transitions, a local organization that helps central Texans living with HIV/AIDS, for over four years.”

Fighting For Equality

When she lived in Houston, Gilliam and a few of her friends had an online lifestyle magazine that was geared toward LGBT people of color. As Gilliam put it, “When you went online and typed in “black and gay,” it would lead to adult websites. We wanted to change the perception.”

One night in early 2005, they’d heard about a table captain event for the HRC gala in Houston and they decided to check it out. The event was at a high-end clothing store in Highland village. “We walked in and it was a stereotypical environment– rich, white and male,” Gilliam said, noting that her friends wanted to leave. “I was like, let’s stay.” Two members, Alton LaDay and Alex Martinez, who were on the steering committee at the time, were talking up the organization and trying to recruit people.

Gilliam joined the HRC-Houston steering committee and helped them with the annual Black Pride event that’s called Splash. She focused on outreach during her brief tenure there; not long after that, she moved to Austin.

Her work with HRC, and specifically her participation in its Women and leadership retreat in 2007, put Gilliam in touch with Leslie Jaffe, who’s become a dear friend. Jaffe is one of the women who designed and facilitated the three-and-a-half day program. “Krystal was nominated to attend and I was incredibly impressed with her willingness to show up and be present,” Jaffe said, noting the intensity of the retreat’s interpersonal workshops. “Since she has stepped up to take on greater responsibility in her role at the HRC, people have taken notice. I would describe her as smart, persistent, courageous and a great teacher.”

“One of the reasons I’ve bonded with Leslie so well is because she really wants me to succeed and she’s willing to share the tools needed to accomplish my goals,” Gilliam said. “Day in and day out, we meet so many people who just want something from us, but Leslie isn’t that type of person. She has a deep appreciation for people.”

Jaffe, a self-described straight ally, is married and the mother of two grown children, one of whom is gay. She also lost her younger brother 20 years ago because of complications from HIV/AIDS. As Jaffe’s friendship with Gilliam progressed, their bond has been strengthened. “To my delight, Krystal started referring to me as her ‘Jewish mom’–I am old enough to be her mom–and her emails to me often begin with ‘Dear mom,’” said Jaffe, noting that Gilliam invited her to attend her graduation ceremony as well.

Looking Ahead

Gilliam sees her own work in health care equality and out- reach as part of an ongoing struggle that began years ago. “My mother was a part of the generation that desegregated schools,” she said. “I feel like I’m still carrying that torch, but with different communities.”

Currently, Gilliam serves as a steering committee co-chair for the HRC in Austin, focusing on membership and community events. “I felt like we could do a lot more here to help engage the community,” she said, citing the group’s outreach efforts to African-Americans in Houston as an example. “Out here there’s a lot of diversity in regards to reaching straight allies, students and faith communities.”

Between her work and her volunteerism, Gilliam still makes time for fun. She loves reading historical books about political figures and economic issues and enjoys watching documentaries related to LGBT people. Although she was involved in a range of activities in high school–including the chess club and the R.O.T.C.–tennis is her favorite pastime. “I love it!” she said. “When I’m on the tennis court, I get very, very competitive. I want to win.”

Having only met her girlfriend just over a year ago, Gilliam has no plans to leave the capital city anytime soon. She said she could foresee herself working as an executive at a hospital on the administrative side, dealing with physician training and making sure that hospitals are serving those who are generally under-served or ignored.

“Pretty much while I’m at work, I’m helping people,” Gilliam said. “Patients, nurses, donors, people who can’t navigate our website, you name it–if it’s cancer-related, I can provide a viable and helpful solution.”

Mindful of the fact that many people in today’s economy are worrying about more than just how they’ll afford their cancer treatment–such as how they’ll pay basic bills or keep food on the table for their family–Gilliam said she wishes the people who are dealing with a cancer diagnosis could focus all of their energy on getting healthy. “Unfortunately, that’s not the case,” she said. “I look forward to the day when it is.”

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