By Troy Zimmerman, Vice President of Government Relations
With the end of March, National Kidney Month, I am writing this blog to celebrate the astonishing accomplishments of kidney patient advocates across the country. It truly was an incredible month for us all!
March began with an amazing 5th Annual Kidney Patient Summit in Washington, DC, hosted by the National Kidney Foundation. Nearly 100 patients and family members from 41 states, and five organizations, met with 145 legislators’ offices. They advocated for the Living Donor Protection Act (H.R. 1270) to protect living kidney donors, for improved early detection and treatment of chronic kidney disease (CKD) under H.R. 3867, and increased funding for federal CKD research, awareness and assistance programs. This effort began to bear fruit almost immediately as additional Representatives signed on to co-sponsor our legislation after the Summit concluded.
On March 21st, we achieved a victory as Congress passed agency funding legislation for FY2018. The CDC’s National Center for Chronic Disease Control and Prevention and Health Promotion received $2.5 million, a nearly 20% increase. The National Institute of Diabetes and Digestive and Kidney Diseases’ (NIDDK) funding was increased by $100 million, to $1.97 billion. Health Resources and Services Administration’s (HRSA) Division of Transplantation received a $2 million increase to $25.5 million. Its’ Bureau of Primary Care received $1.625 billion, an increase of $135 million.
To top it all off, eight-year-old Fore Putnam made his mark by bringing CKD to the President’s desk while advocating for his father, who is seeking a kidney transplant. Having written President Trump, he received a reply from the White House which led to an interview on Fox and Friends where he made a personal plea for a living kidney donor.
Not all our accomplishments were at the national level. Advocates in numerous states – including in Pennsylvania, Maryland and Arizona – worked with their governors and state legislators to improve awareness of CKD by issuing proclamations to celebrate kidney patients and living kidney donors.
On March 27th, Maryland’s state legislature passed significant legislation (HB 96) to help living organ donors. This legislation, supported by the National Kidney Foundation, will provide living organ donors a state tax credit up to $7,500 for the unreimbursed cost of travel, lodging, and lost wages because of donation. Are you interested in what your state’s benefits are for living donors?
The crown jewel of our advocates’ state activities was in Idaho. With the support of the National Kidney Foundation, two patient advocates worked with their state legislature to pass legislation (S.1302) protecting living organ donors from insurance discrimination based upon their status as an organ donor. This legislation, based on the Living Donor Protection Act (H.R. 1270), is the first of its kind in the country.