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The Illinois Kidney Care Alliance, a collection of providers and advocates on the dialysis and organ transplant side of kidney care, launched last week. The goal is to raise awareness for kidney disease and encourage organ donations and transplants.

Initial members of the group include American Renal Associates, the Chronic Disease Coalition, DaVita Inc., Fresenius Medical Care, the Gift of Hope Organ & Tissue Donor Network and U.S. Renal Care.

Kevin Cmunt, CEO of Gift of Hope, recently spoke with Health News Alliance about the formation of the alliance, the state of kidney care in Illinois and efforts to address the disparity in care.

Edited excerpts are below.

HNI: How did the alliance come about?

KC: So the reason that the group got together is we wanted to advance kidney care. There are tens of thousands of Illinoisans who suffer from end-stage renal disease. It’s really expensive. It’s cost our society and our state, and it’s just a really crummy disease. When you’re on dialysis, you’re chained to a machine three days a week, and you’re basically just existing, and, really frankly, slowly dying. And that’s just a crummy way to live. The cure for end-stage renal disease is a transplant. So we joined the group because we’d like to see more folks with transplants. And working with the team and advocating at the state level, we think it is going to be beneficial to make that happen.

HNI: Do you remember who first approached whom about coming together on the alliance?

KC: So we’ve worked closely with some of the folks in the dialysis community. We’ve done some training sessions with folks at DaVita and Fresenius because one of the things really important to us is that patients are, number one, educated about transplants and, number two, that they’re ready for transplant when their opportunity comes. And the folks who have the greatest impact on those two things are our partners in the dialysis community. They see our patients three times a week and you have a kind of captive audience for five or six hours. So that gives them an opportunity to educate and to make sure that they’re going to the doctor appointments and they’re managing their health so that when we do find an organ for them and they can get transplanted, they’re ready for that. So I was approached by some of the folks in the dialysis community.

HNI: What are the next steps for the alliance?

KC: So we haven’t set a legislative agenda, but the group is interested in anything that can improve the care for our dialysis patients and improve transplants. A quick example, last year we had a bill passed that all of us advocated for that created a tax code for companies who employ living kidney or liver donors, to give them some paid time off so that they wouldn’t be financially disadvantaged by becoming altruistic living donors. It’s not going to solve the kidney health crisis in our state, but it’s something that helps. So I think there are some pieces of legislation, there are things that the state can do to help us promote organ donation, to help us promote living organ donation and to promote better kidney health.

HNI: What is the state of kidney healthcare in Illinois?

KC: I can speak to the transplant side and we’ve had a really great run the last four years. Back in 2015, we had a low point in kidney transplants. It was primarily driven by some federal regulations that pushed some of our programs to become conservative. Since that time though, we’ve really had a great turnaround. We’ve almost doubled kidney transplants in the last four years, which is fantastic. And actually, our waitlist has dropped in Illinois and we’re well on our way, I think, to being a leader in the country in kidney transplant with the growth at several of our centers. So from that standpoint, it’s good news. Our donation numbers have gone up over 70 percent in the last seven years. So there are a lot more kidneys being recovered locally and available for patients. We still have a long way to go. We still have 3,000 patients on the waitlist. So we’re not trying to claim victory, but we’re definitely going in the right direction.

HNI: What are some of the challenges to access to kidney care?

KC: I think one of the biggest challenges we have in Illinois is the overall health of our kidney population. So many of our candidates who are on the waitlist suffer not only from kidney disease but other comorbidities like heart disease, high blood pressure, diabetes and obesity. Poverty is also a really huge issue. So those patients, it’s harder to get good outcomes. It’s much harder to keep them ready for transplant, and it’s harder, frankly, to keep them healthy on dialysis… I would say we have a pretty significant health disparity in Illinois that runs along economic lines. And you’ll often hear some of the folks who run the safety net hospitals in Chicago talk about the life expectancy difference between downtown Chicago and the Austin neighborhood, which is a whole six miles apart, but the difference is something like 25 years. We do have a very diverse population, and kidney disease is overrepresented in the black and brown communities. As I said, poverty is a big challenge for us. And so I think that puts us in a situation where we have more work to do to take care of our population with regards to kidney health. I don’t know that ours is better or worse than any other state, but I know we have a bigger job to do than most states, almost all the states.

HNI: What are some of the ways to address that disparity?

KC: For us, it has to do with education and trying to get folks to understand and to sign up to be organ donors. We have a fairly generous community across the board, demographically, but we could certainly do more, particularly in our black and brown communities. Building trust in our healthcare system is really critical. We suffer, as the whole nation does, in a lack of trust in our institutions. And our institutions can be a bit intimidating, especially our transplant programs. They’re all giant academic medical centers, and not everybody’s comfortable in those settings. So I think that’s another reason for us to be involved with the alliance and be with our partners in dialysis. They have the ability to help the continuing education of our patient population so they know what’s available to them and they know how to take care of themselves, and that to me is really important.

HNI: What more can lawmakers do to address this issue?

KC: You won’t be shocked that money is an issue, but we could certainly do a better job of taking care of our kidney patients. The reimbursement under Medicaid is not very good, emergency Medicaid or Medicaid in general. So that’s a challenge and I think there are some opportunities there. I think there are some simple things that don’t cost a lot of money that can certainly help. Like the bill that passed last year, it didn’t really cost anything, and yet it could encourage some people to be living donors. Two years ago, working with the secretary of state, we passed the bill to allow 16 and 17-year-olds to register to be organ donors when they get their first driver’s license. And that’s been really successful. We’re doing a lot of work in high schools to educate young people about donation. There could be a lot more done in the state to get people to register to be organ donors. And that’s something where the Legislature can certainly help, and you don’t have to spend a lot of money. It’s really more about getting out into the community and letting your constituents know that you support organ and tissue donations. That I think is the stuff that you can do in a state where you’re challenged with finances. No matter what, we’re always short on money, right? We don’t need to ask for a bunch, we really just need the support and attention of the Legislature.

On the record with Kevin Cmunt, CEO of Gift of Hope Organ and Tissue Donor Network