Post submitted by PREPARE NOW Principal Investigator, L. Ebony Boulware, MD, MPH
Today, co-Investigator Jerome Bailey from the American Association of Kidney Patients (AAKP) and I have been on Capitol Hill, educating our nation’s legislators on the importance of protecting live kidney donors. The American Association of Kidney Patients (AAKP) and the American Society of Nephrology (ASN) have teamed up to support the Living Donor Protection Act (S. 2584/H.R. 4616), which aims to protect donors by (1) ensuring they are not denied or given limited coverage or higher premiums for life, disability and long term care plans, and (2) allowing donors to use Family and Medical Leave Act (FMLA) time to recover from their donation surgery and maintain job security. The Act will also direct the Department of Health and Human Services to create educational materials reflecting donor protections to encourage more Americans to consider becoming living donors. Jerome and I had the pleasure of visiting 6 legislators from North Carolina, Florida, and Washington DC who were eager to hear about the Act. It was encouraging to hear support for this important Act among our nation’s leaders, and I felt honored to advocate for live donors in this way. Let’s hope we can make a difference!
This blog entry comes from one of our Patient Co-Investigators on the study, Lana Schmidt, who after 13 years of dialysis- finally got the kidney she has waited for.
With kidney disease, some people are fortunate to have a straight and narrow path, no twists or turns on getting a kidney transplant. They receive the call, get transplanted, and go home, while I on the other hand was placed on a twisted and complicated road.
After a battle of life and death each day being on a dialysis machine for over 13 years, I was told there was finally a way off this road, but it would cost $110,000 dollars for a special drug, soliris. It was an orphan drug that would suppress my antibodies, so I would not reject the kidney, which was what I needed for the lengthy list of antibodies I have. Desensitation (removing of antibodies) would not work for me.
If it wasn’t Dr. Enrico Benedetti’s medical ingeniousness and his willingness to try this drug with a deceased donor, I’d still be struggling to stay alive. I encourage every person to push through the obstacles that are placed on your road to getting a transplant and get your life back; after what I’ve been through, I believe all things are possible.
Lana's story was also covered in UIC News Center- check it out here!