NC DelegatesCapitolBldgAs I arrived on a beautiful Mother’s Day in Washington, D.C., I saw families enjoying picnics around the Washington monument.  It was a perfect day to enjoy the Washington Mall and I wish I had more time to tour the monuments.  I was in our nation’s capitol to ask Congress to support legislation that will help people living with ALS and attend the National ALS Advocacy Day Conference.
This year we focused on 3 pieces of legislation: 1. Enact the Dormant Therapies Act,  2. Preserve Access to Complex Rehab Technologies (CRT), 3. Waive the 5 Month Waiting Period for Social Security.
I will explain these three below, but first I want to share just how poignant the experience is of meeting 1,000 people who have all been affected by ALS. The conference, led by ALSA, brings together people with ALS (PALS), their families, caregivers, those who have lost someone to ALS, and those who work to help PALS.  This affords the opportunity to meet people from diverse backgrounds with a common cause.
I met PALS whom I could not tell had an ALS diagnosis, and those who were using a ventilator to breathe.  I met Randy Floyd, who has the familial form of ALS, and he has lost over 20 family members to Lou Gehrig’s disease.  He gave a powerful plea for help to our representatives. Randy knows his daughter has a 50% chance of being diagnosed with ALS and just the thought of this possibility brings him to tears.  Randy and his entire family are positive, but they believe a cure for ALS is long overdue.  I met Brian, who also has familial ALS, and his wife Wendie Hager. They have three children and they share the same fears as Randy.
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We listened together to scientists present the latest in ALS research and how we can lobby our representatives to support these initiatives:
1. Enact the Dormant Therapies Act:  There are many drugs that have weak or expired patents that could help PALS.  This Act would extend these patents and make these drugs potentially profitable.  Without the possibility of profit drug makers have no incentive to proceed with testing.  The Dormant Therapies Act would help take these drugs “off the shelf” and back into the testing lab where they could possibly improve, prolong, and ultimately save lives.
2. Preserve Access to Complex Rehab Technologies (CRT):  This legislation would help keep costs low for necessaryfullsizerender-1
wheelchair accessories.  For example: with the progression of ALS, PALS need wheelchairs that can recline and raise the leg rests.  The Centers for Medicare and Medicaid scheduled to significantly reduce the payments for these accessories on January 1, 2016.  These have been delayed by Congress for 1 year but the issue is not resolved. If a permanent solution is not achieved these accessories will not be covered and many PALS will not be able to afford these much needed wheelchairs. Raising the legs and reclining elevates the legs and aids circulation which helps prevent blood clots.  A blood clot is life threatening and can lead to death or several days in the hospital.  A cost benefit analysis suggests these
accessories are not “bells and whistles.” Wheelchairs with these functions are
necessary and they can decrease long term care expenses for PALS.
After our visit Senator Richard Burr and Representative David Rouzer Co-sponsored this legislation!
 
3. Waive the 5 Month Waiting Period for Social Security: After a PALS has been approved to receive Social Security Disability Insurance (SSDI) they have to wait 5 months before they receive their benefits.  They have paid into social security their entire professional career, but they cannot receive any payment and many have no other form of income.  This waiting period is used to determine if there is a misdiagnosis and to prevent fraud.  A diagnosis of ALS is made by a process of elimination of other diseases. Therefore there are very few misdiagnosis of ALS and the waiting period is unnecessary.
Senators Sheldon Whitehouse (D-RI) and Tom Cotton (R-AR) introduced S. 2904, the ALS Disability Insurance Access Act, to waive the five-month Social Security Disability waiting period for people living with ALS. Representatives Seth Moulton (D-MA) and Peter King (R-NY) introduced H.R. 5183, identical legislation in the House of Representatives.
 
Senator Richard Burr Co-Sponsored this bill after meeting with us!
Thank you for supporting The Joe Martin ALS Foundation.  We are encouraged by our representatives responses and we will continue to advocate for families fighting ALS! 

Take Care,
Neil Cottrell
President
The Joe Martin ALS Foundation