8 Nationwide Advocacy O n the 2016 National ALS Advocacy Day, we asked Members of Congress to sup- port three bills that will positively impact the lives of people with ALS as well as expedite the development of drugs that could lead to treatments and a cure. Here’s a look at The ALS Association’s public policy priorities for 2016 with updates on each ask. Preserve Access to Complex Rehab Technologies The Centers for Medicare and Medicaid Ser- vices (CMS) proposed to apply Competitive Bid Program (CBP) pricing to complex rehab power wheelchair components such as custom head support and seating systems, mounting hard- ware, adjustable leg rests and specialty drive controls among other wheelchair components upon which people with ALS depend. In May, we asked our Senators and Representatives to cosponsor a bill to preserve access to Complex Rehab Technologies (CRT). In December, after the Senate and House overwhelmingly passed the 21st Century Cures Act, President Obama signed it into law. This preserved access to complex rehab technologies power wheel- chair accessories through June 2017. Update: In 2017, we asked all our Members of Congress to cosponsor a bill that would make the current law permanent. In June, CMS announced they will not move forward on plans to apply competitive bid rates to CRT power wheelchairs. This will allow people living with ALS and others who rely on CRT to have continued access to this medically necessary equipment. Waive the Social Security Disability Insurance (SSDI) Five-Month Waiting Period Under current law, people disabled with ALS who are eligible for SSDI must wait five months before they can begin to receive benefits. Waiting those five months can be an extreme hardship on families who are already taxed physically, emotionally and financially with the reality of living with ALS. In Washington, we met with Senators Richard Burr and Thom Tillis and staff members or Representatives from all of the North Carolina congressional offices, asking them to cosponsor a bill to waive the five-month waiting period. Update: In 2017, we once again asked all our Members of Congress to cosponsor a bill waiving the five-month waiting period for SSDI. Both North Carolina Senators and Representatives G.K. Butterfield and Walter Jones have committed to cosponsor this important legislation. Encourage your Representatives to join them in cosponsoring the ALS Disability Insurance Act (H.R. 1171 in the House of Representatives) by sending customizable letters to your Representatives: http://bit.ly/AdvocacyActionCenter. Enact the Dormant Therapies Act The Dormant Therapies Act would encourage research on treatments that hold promise for treating diseases such as ALS for which there are limited or no treatments, but have been set aside in the lab because they lack or have weak patents. Update: The Dormant Therapies Act was rolled into the 21st Century Cures Act, which was signed into law in December. The NC Chapter had the third largest delegation at the 2016 ALS Advocacy Day. Advocacy Day...the most heartwarming, profound, eye-opening, rewarding experience in my life. As a pALS, it was far more than just sharing our stories and requesting cosponsoring for our “asks” to politicians who may or may not understand our urgency. We were fortunate we were heard and because of our efforts on the Hill, we are on base and now it’s time for legislators to bring it home. However, our voices would have been mute without the tireless work and support of our ALS Chapter. A sincere thank you to each and every person involved! Most importantly for me were the days prior – bonding with newfound pALS friends, interacting and shar- ing with them, their families, doctors and researchers, all the while knowing we are a community that will support each other. For that I am humbled and grateful and look forward to seeing all my new friends next year! ~ Cris Simon