Tell us about your organization and the work you do there.
Gift of Hope Organ & Tissue Donor Network is a not-for-profit organ procurement organization (OPO) that works with 180 hospitals and serves 12 million people in our donation service area. We’re one of 58 OPOs that make up the nation’s donation system. Since 1986, we’ve saved the lives of more than 23,000 organ transplant recipients and improved the lives of hundreds of thousands of tissue transplant recipients.
What communities do you serve?
We coordinate organ and tissue donation, and also provide public education about donation, in Illinois and northwest Indiana. We collaborate with hospital partners, community organizations and leaders, donation advocates, and diverse communities across our region to increase awareness of the benefits and significance of organ and tissue donation.
Why did you decide to join the Illinois Kidney Care Alliance?
Joining the Illinois Kidney Care Alliance amplifies the ongoing efforts of Gift of Hope and its donation partners to promote organ and tissue donation and transplant in Illinois. Some of the organizations associated with the Alliance are already helping make donation and transplant happen. We believe that this partnership will help us bring a greater and longer lasting impact to those in need of lifesaving organ and tissue transplants.
What do you hope the Alliance accomplishes?
There is true strength in unity and numbers. We hope this partnership will help promote legislation that improves care for end-stage renal-failure patients. We also hope that it will enhance the understanding and expansion of donation and transplantation, which is often the best option available and treatment of choice for many kidney failure patients.
What policy changes do those living with kidney disease need now?
Due to the COVID-19 health crisis, people living with kidney disease are at an increased risk for severe illness. They need processes and policies that will help protect them. Gift of Hope supports the efforts of national kidney organizations that are working to extend and improve upon waivers and flexibility that CMS has implemented for kidney patients over the past few months. It’s equally important that CMS continue coverage for telehealth visits for all kidney patients, including transplant and dialysis patients, and allow the use of various forms of technology for telehealth visits. National kidney foundations have also urged CMS to provide coverage for at-home lab draws for kidney patients, transplant recipients, and living organ donors, and also allow patients diagnosed with an acute kidney injury to receive home dialysis. The implementation and continuance of these policies will help mitigate increased risk during the health crisis.
What can lawmakers do to help those with kidney disease?
We hope that members of Congress approve outstanding bills that help improve donation and transplant, and also help those with chronic kidney disease, such as the Chronic Kidney Disease Improvement in Research and Treatment Act of 2019.
What is something most people don’t know about dialysis/kidney disease?
Of the 121,000 people waiting for a lifesaving organ transplant, more than 100,000 of those patients are waiting for a kidney. But even more notable, these 100,000 patients on the waiting list only represent around one-quarter of all people on dialysis. The longer a person is on dialysis and has to wait for a transplant, the lower the success rate. On average, receiving a kidney transplant can double someone’s life expectancy.
If you can share one story about the work you and your organization do, what would it be?
In August 2016, violence claimed the life of 20-year-old Chicago resident Mario Cousins as he sat outside his home. Mario’s parents, Emma O’Neal and Mario Cousins Sr., made the decision to say “yes” to organ and tissue donation. This selfless gift connected Mario and his family with the lives and families of five other people — each from vastly different backgrounds.
Melvin Eggleston, a Black man in his 50s, received one of Mario’s lungs; Carmen Garcia, a Hispanic woman in her 60s, received Mario’s right kidney; Miguel Lozano, a Hispanic man in his 60s, received Mario’s left kidney; Sue McCloud, a white woman in her 50s, received Mario’s liver; and Pam Morris, a Black woman in her 60s, received Mario’s heart.
As organ donor, Mario Cousins saved the lives of five others. His story underscores Gift of Hope’s core belief that donation is a thread that crosses all forms of diversity and connects people through hope.