Submitted by Laura Edwards
I don’t talk much about my political views on social media or elsewhere. But rare disease is bipartisan. Rare disease traverses not only politics but also religion, race, gender, age, ethnicity and nationality. Rare disease affects us all.
On July 28, North Carolina House Bill 823 passed unanimously by a vote of 106-0 in the House. The bill, entitled “Establish Advisory Council on Rare Diseases,” is with Governor McCrory, who now has 30 days to sign the bill into law.
Taylor’s Tale was the catalyst for this bill. Since my mother, Sharon King, first presented the idea to state legislators at a breakfast we sponsored at the legislative building in late March, followed by the filing on April 14, it has sailed through the House and Senate in just over three months. It has passed unanimously at each stage. Not a single member of the North Carolina General Assembly has voted against this legislation at any point in time.
What will the bill do?
Once signed into law by the governor, House Bill 823 will establish an advisory council on rare diseases within the School of Medicine of the University of North Carolina at Chapel Hill. This council will act as advisors on research, diagnosis, treatment and education relating to rare diseases. Appointed members will include:
-A physician with experience researching, diagnosing or treating rare diseases
-A medical researcher with rare disease research experience
-A registered nurse or advanced practice registered nurse with experience treating rare diseases
-One rare disease survivor
-One rare disease foundation representative
-One representative from each academic research institution in North Carolina that receives any grant funding for any rare disease research
Prior to the final vote, Representative Dan Bishop shared a personal story. Years ago, his son was diagnosed with a rare disease called long gap esophageal atresia. Representative Bishop and his wife didn’t like the options they received, so they turned to the Web. A long and twisted trail led them to Dr. Jack Foker, who had developed a new treatment at the University of Minnesota. Representative Bishop’s son endured 13 total procedures and spent 10 days lying unconscious in bed during the staged repairs. He will turn 15 in August, and he is healthy with the exception of a few scars that serve as a reminder of the surgeries that saved his life. Representative Bishop noted that Dr. Foker’s technique remains controversial today, but it saved his son’s life and in fact gave him a normal life. But the standard of care is slow to adopt science we already have and turn it into answers for people who desperately need them, he said. This is the nature of rare disease.
At the end of his story, Representative Bishop reminded his fellow representatives that there is a better way. “We should be part of this,” he said. “(This bill) takes us down the road for this.”
A minute later, we had our bill.
It was a great day for our state, for the one million people in North Carolina suffering from a rare disease, and for Taylor’s Tale, the little organization that could. Kudos to my mom for her hard work and visionary leadership, and thanks to all those who believe in us. Thanks especially to our primary sponsors (Representatives Becky Carney, Marilyn Avila, Beverly Earle and Dan Bishop) and all those who have advocated for the establishment of a rare disease advisory council.
My mother is a visionary leader, and my sister’s courage is the inspiration that keeps on giving. This legislation is going to be great for the state of North Carolina, and I hope other states follow suit!
Written by Laura King Edwards, a writer, non-profit leader, and communications professional. She blogs at writethehappyending.com about finding beauty in the wake of a tragedy.
Laura’s younger sister, Taylor, was diagnosed with a rare, fatal brain disorder called Batten disease in 2006. Refusing to accept the status quo, Laura became a passionate activist, co-founding a non-profit organization, Taylor’s Tale, at age twenty-four. The public charity quickly became a top funder of infantile Batten disease research and today is known worldwide for its contributions to research, awareness, and advocacy on behalf of the estimated 30 million Americans and 350 million people worldwide with a rare disease. Taylor’s Tale was the catalyst for historic rare disease legislation passed unanimously by the North Carolina state legislature in July 2015.
A graduate of the University of North Carolina at Chapel Hill with a BA in English, Laura minored in creative writing. She is on the public relations and content marketing team at a top creative marketing communications agency and previously spent eight years on the marketing team of a large, integrated health system.