Too few organ donors for people of color

There are 5,300 Illinois residents waiting for an organ.

If you’re a minority in Chicago, the wait for a transplant can be significantly longer than other Illinois residents.

“Hispanic and African Americans wait four times longer than whites for kidney transplants,” says Jack Lynch, director of community affairs at Gift of Hope, a non-profit organ procurement organization.

One problem is the type of diseases that affect minorities, said Kevin Cmunt, Gift of Hope’s president and CEO.

“There’s obesity, high blood pressure, hepatitis (and) all of these other issues that make (minorities) more difficult transplant patients – and make their outcomes a little bit less good than people who don’t have those diseases,” Cmunt said.

How to make it easier for people of color to get a transplant was among the issues discussed at a recent town hall meeting held at the University of Illinois at Chicago.

The town hall, which was hosted by U.S. Congressman Danny K. Davis (D-Chicago), featured more than a dozen panelists representing the state’s top medical programs, including The University of Chicago, University of Illinois, Mount Sinai Hospital, Northwestern University, Loyola University and Rush Hospital.

“This is just the beginning,” Davis said. “This is just one part of the process, and it’s one of the techniques that are used to promote change.”

More minority lives need to be saved through organ transplants, he said.

One problem is lack of awareness, another is too few donors. Still another: not enough younger donors.

“Four thousand organs donated and recovered are discarded every year,” Cmunt said.

That’s 13 to 14 percent of all organs recovered being thrown away, he said, and a problem particularly for minorities.

One reason organs get discarded: they come from older donors, usually over the age of 65, so they don’t offer a very long survival rate, Cmunt said.

But even a one- to three-year survival rate for a donated organ is better than having a patient on dialysis for five years as their health steadily declines, Cmunt said.

Transplant rules, which are established by the U.S Centers for Medicare and Medicaid Services (CMS), continue to negatively impact blacks and Hispanics seeking organ donation, he said.

“In Chicago, where 60 percent of our patients are minorities – African American or Hispanic – we really struggle as a community to reach those 95 and 96 percent survival rates that CMS has set based on the whole country,” Cmunt said, referring to the expected survival rate required for an organ to be transplanted.

With these standards, Cmunt says a lot of those needing organs don’t get them.

“It’s not a fair game for us that CMS rules are affecting our community disproportionately,” he said.

Monica Fox, 50, has been on the Illinois donor list for one year, and on dialysis three days a week for four hours each day the last two years.

Her reality is that not everyone on the waiting list will receive the organs they need, and although she remains hopeful Fox plans to take the information she’s learned and spread it to others within her community.

“I didn’t know about the disparities with regard to transplants and in regard to waiting for organs,” Fox said. “I didn’t know about that until it affected me personally. So I think town halls like this really help because it gives education and information that we might not otherwise get.”

Fox is a volunteer advocate for Gift of Hope, spreading this information to minorities across the city.

“It’s just a lot that we don’t know because it doesn’t cross our path,” Fox said. “And until it touches you directly, you don’t really tune into it.”

Gift of Hope leadership plans to visit Washington, D.C., to discuss these disparities involving the minority community with CMS. African American Task Force has also put a spotlight on the issue.

“I think the next step is Congressman Davis will take us all to D.C.,” Cmunt said. “And we’ll talk to CMS, and we’ll move the needle and hopefully we’ll be able to light the fire that ignites change.”