For the last 15 years, Oscar Romero Alba has faced issues with his kidneys. For the past four years, that's meant dialysis.
He says when he first got the news about dialysis, he thought it meant he was going to die. His doctors soon educated him otherwise, and now he sits on the transplant list at UCHealth University of Colorado Hospital. But Oscar's experience isn't typical. Historically, his community hasn't received the outreach to guide them through.
National data shows that last year, more than half of White Americans on the waiting list for transplants received one, compared with barely a third of Hispanic Americans.
Hispanic Americans "take longer to be placed on the waiting list," said Dr. Sixto Giusti, a kidney nephrologist at UCHealth. "Until recently, once on the waiting list, they take even longer to get transplanted. They don't feel like they're going to be taken care of properly. They feel that they're going to be taken advantage of. And culturally, it's a big taboo to ask somebody for help, to ask somebody for a kidney."
Clinicians, lawmakers talk mental health barriers related to race
A panel of mental health experts gathered at Friday's Congressional Black Caucus conference to raise awareness about youth in distress.
Both the Civil Rights Act of 1964 and the Affordable Care Act say providers must offer meaningful access to people whose primary language is not English. To many, that means interpreters. But interpreters don't compare to consistent, connective outreach.
For five years, UCHealth has run a Hispanic Transplant Program, now run by Dr. Giusti. They hire bilingual employees. They post bilingual signage. They have a dedicated Spanish-language web page.
"Our pharmacy team meets with them regularly," Dr. Giusti added. "Our typical patients might see a pharmacist once every month or so, but they see them 2-3 times a week."
In Oscar's case, the team did something else, "I thought I was going to have to do dialysis for life, because there was no way to pay for insurance."
He says the medical team helped point him toward a state insurance plan — a plan, he says, that lets him receive dialysis, be on the list for a transplant, and stay financially afloat.
"We went from probably, like, 0-5 patients a year to now representing close to 20% of our current transplant list, which is great," Dr. Giusti said.
A similar program at Northwestern Medicine in Chicago increased live donor kidney transplants among Hispanic patients by more than a third. But programs like this remain rare.
"I don't think it's a lack of interest," said Dr. Giusti. "I think it's finding the right key players who are willing to take this on and then, ultimately, the research or the funding."
