Three days out of seven, Lucia Leandro Gimeno, a 38-year-old trans person who often goes by “LL,” goes to dialysis treatment. After a scary hospital stay less than a year ago, LL was diagnosed with end stage kidney failure, which means LL’s own kidneys can no longer do the important job of removing the body’s waste.
Today, LL looks dapper in a bright tee and scarf, the demands of a disease that requires constant medication, treatment and need for rest, camouflaged with an upbeat smile.
Medicaid and Medicare keep LL working and productive, but uncertainty over federal funding of these programs, and the health safety net that LL and many disabled people rely upon, leaves unsettling questions.
“The stress that I deal with, besides the lack of awareness around trans issues, is the stress around finances and health benefits. I don’t make that much money,” said LL.
LL is a trained doula and head of a non-profit that provides doula services to Seattle’s trans community. LL, who attended protests as a youth with two activist parents, is outspoken against efforts to curtail access to affordable health care, “It costs way less to provide free health care and education than it does to go elsewhere to bomb the s**t out of some other country or lock people in prison.”
The nation’s lack of health equity is like, “not being able to get ahead because you started a few steps behind.”
A key part of the support system that keeps LL well and whole, is International Community Health Services (ICHS), a non-profit health center with a clinic in Seattle’s Holly Park neighborhood. Just a short walk from LL’s home, LL’s primary care provider, Dr. Jessica Guh, and an integrated team of heath care professionals, keep watch over all aspects of LL’s wellbeing.
Jie Chen, pharmacy supervisor at ICHS’ Holly Park clinic, gave one example, “The pharmacy team plays an active role caring for a patient like LL, who takes multiple medications and receives treatment from multiple sources. We make sure there is constant monitoring and safety. Perhaps most importantly, we really work to build trust over time.”
The ICHS team not only helps LL manage a potentially fatal disease, they deliver care that is sensitive to the nuances of LL’s gender identity and need for gentle handling after trauma from past medical exams. This is a first for LL, whose early experiences with the medical community left deep distrust. LL says ICHS is the first place to give such complete care.
“What you have here at ICHS is really special. I feel genuinely grateful because I do not like doctors. I don’t trust them. But that is definitely shifting because of my experience here.” LL feels at home at ICHS, “This is the best medical care I have ever had. I feel like I’m with family. I like the diversity of people and languages. That’s what I grew up with.”
Mindful of the power of making one’s voice heard, LL has a message for lawmakers. Preserve affordable health care that allows people to benefit from health centers like ICHS, “Unless you’ve lived our experiences, you can’t make decisions about our lives. And if you have, try not to forget what that feels like.”
I came to the United States in March 2017 as an immigrant from Vietnam. In May 2017, I noticed a lump in my left breast. Fortunately, I saw an advertisement about the Breast, Cervical and Colon Health Program (BCCHP) and contacted Minh Nguyen, a community advocate. She carefully explained the program to me. She helped me make an appointment with BCCHP at ICHS’ Holly Park Clinic. Through BCCHP, a provider referred me for a mammogram and ultrasound. Results showed I had a tumor in my left breast. My biopsy diagnosed me with Stage 2 left breast cancer. It is an invasive and fast-growing cancer. My breast cancer will not respond to hormone therapy or other medications. I will need surgery, chemotherapy and radiation. I knew that I couldn’t afford to pay for expensive treatments.
ICHS’ Veronica Kim enrolled me in the Breast and Cervical Cancer Treatment Program through King County. Qualified woman receive free cancer treatment that includes surgery, chemotherapy, radiation therapy and five years of drug therapy to prevent cancer recurrence. ICHS’ Vietnamese-speaking staff, Nina Le, helped me with all interpreting and translating. ICHS’ Women’s Preventative Health Services staff carefully explained and convinced me of the benefits of the BCCTP program. Veronica submitted all forms to King County, including cancellation of my current insurance contract, which had a premium, high deductible and co-pay, so I could apply to the state Medicaid-Apple Health.
It’s approved already. I already had my treatment scheduled at Swedish True Family Cancer Center in July 2017. There are no words for how the treatment will push my limits physically, emotionally and mentally. However, thanks to the support from these amazing people, I can rest assured that I am in good care.
-Nguyen (does not wish to share her full name)
As newly arrived U.S. immigrants and refugees figure out the basic tools for survival, they have left important support networks – family, friends and community – behind. Not knowing the culture or language is intimidating and isolating.
Fortunately, there are those at International Community Health Services (ICHS) who work to serve as a bridge.
In 2015, Svetlana and Sergey Snigur, philosophy and political science university instructors, moved from their home in the Ukraine to Seattle, Wash., with sons Artem and Arsen. The family won spots in the green card lottery program, which gives just 50,000 people and their families the opportunity to live, work and study in the United States annually.
“It was not an easy transition for me, Sergey, or our sons,” said Svetlana. “Not really knowing anyone in the new country and not speaking English. Our family had no time to relax. Quickly, we had to find jobs, learn the language, sort out school for the children and find our own housing.”
High among the couple’s concerns was making sure they knew how to access affordable health care.
“In Ukraine, medical facilities are sponsored by the state,” said Svetlana. “In America, it is necessary to have medical insurance.”
Friends advised them to contact a Russian-speaking community advocate from ICHS, Aleksandra Poseukova. Using their native language, she helped them understand how their sons, who are now five and 17 years old, qualified for low cost health insurance through WA Apple Health. She helped Sergei and Svetlana sign up for a health plan through the Affordable Care Act that they purchased with a less than a $10 monthly premium.
“But what’s the point of having insurance if it’s not clear how it works,” recalls Svetlana. “I called Aleksandra many times with questions. There are still many incomprehensible terms, formalities and procedures. I am so glad I know I can call her and she can walk us through what we need to know.”
When Sergey got his first job in the United States and needed to fill out benefit forms, he turned to Aleksandra for help with the unfamiliar barrage of paperwork and choices.
“I called the company’s human resources manager and helped Sergey fill out the applications,” she said. “While Sergey understands that under the terms of the Affordable Care Act, he should include Svetlana on his employer-sponsored insurance plan, unfortunately, family’s budget does not cover her $200-a-month premium. Today, Svetlana is uninsured and lives in worry of getting sick or hurt.”
One of the casualties for the uninsured is an interruption in preventative health care. So, part of Aleksandra’s advocacy for the Snigurs included connecting Svetlana with resources that extended her health care beyond what she might receive in an emergency room.
She made sure Svetland knew about and took advantage of free preventative exams through the Breast Cervical Colon Health Program, which offers free breast cancer screenings and mammograms for low income and uninsured women.
“Svetlana gladly agreed and scheduled her first visit with ICHS’ Holly Park Clinic,” said Aleksandra. “She was so happy to see the quality of service and courtesy she received from ICHS’s doctors and staff.”
Since their arrival to the United States, the family has contacted Aleksandra on many issues.
“We know that we can trust Aleksandra to help with whatever challenge we are facing,” said Svetlana. “She makes us feel like we have an extended family here. She is aware of resources and help we would not otherwise know about. If she can’t answer a question, she knows how to find someone who can.”
Svetlana and Sergei work hard to provide for their family. Each member has their own picture of the American dream.
“Both boys are attending schools. Artem brings home straight “A’s.” Arsen is preparing for college and has a part-time job,” said Svetlana. “I’m grateful we have access to health care, and that there’s nothing to stand in the way of our dreams.”