When the HDSA advocacy team made H.R. 678, the Huntington’s Disease Parity of Act of 2009 a priority last year (original name, but H.R. 6259 in 110th Congress), we took the issue to heart. We have had family members struggle to get disability and Medicare insurance while suffering the effects of HD. Our disappointment at family members getting denied disability was meet with a shrug of the shoulders and statements along the lines of “oh well, everyone gets denied at least once”. H.R. 678 seemed to be a step in the right direction since it will redefine the Social Security Administration’s archaic HD disability guidelines as well as waive the two year waiting period for the HD patient to receive Medicare after getting approved for disability.
We had decided to begin publicly supporting HD causes in 2007. While we are afraid of HD and all the challenges it brings to a family, our motto has become “fear is the enemy of action”. A HDSA email advocacy alert in February of 2009 inspired Tim to write a second letter to our Congressman regarding H.R. 678. Here is link to HDAC support message board thread with letter: http://www.hdac.org/phorum/read.php?5,51216. Whenever Tim would “go out on a limb” and write something he thought potentially controversial, he would send it back to the HDSA. On the February HDSA advocacy alert, Joe LaMountain was copied on the email. We had seen Joe and Sean Luis of the HDSA make a presentation at the HDSA National Conference in 2008 in Pittsburgh about political advocacy. Tim sent Joe his letter Saturday morning, Feb. 14. Joe responded on Sunday morning asking if Tim would be interested in gathering a group of Virginians to head to Washington D.C. to lobby Virginia Congressmen regarding H.R. 678. After a brief discussion, we decided to take on the lobbying effort.
On February 26th, we began recruiting folks from Virginia to go to Washington. We are indebted to Joe for his guidance. We “advertised” on the HDAC support message board as well as sent a recruiting email to UVA-COE’s genetic counselor, Pat Allinson. Pat forwarded the email to her HD contact list which provided us many of our delegation. After gathering about a dozen folks over the course of six days, we decided on a date for our trip, March 26. Joe sent us a list of the Congressmen’s’ contact numbers and health legislative assistants.
On the morning of March 12, we called the eleven Virginia Congressmen’s Capitol Hill offices requesting meetings with the Congressmen or their staff regarding H.R. 678. We followed the procedure for requesting the meetings which varied from office to office. Rep. Perriello scheduled a meeting on the first phone call. Two offices required faxed forms to be sent in. One office had a website contact. Six offices asked for email, God Bless them, one office said call back. Six days later we had six meetings arranged for the 26th. We sent a follow up email to the other five offices and by March 23 had eleven meetings arranged between 9am and 2:30pm. We canceled Rep. Goodlatte’s meeting since he agreed to cosponsor the bill on March 20th. All of the folks we communicated with were helpful and polite.
March 26th was a dreary, rainy day in Washington D.C. Our spirits were not dampened, however. We were all nervous since none of us had ever lobbied on Capitol Hill. We divided into two groups since we had so many morning meetings. Joe led one group while Sean led the other group. Each meeting lasted 20 to 30 minutes with the Congressmen’s health legislative assistant. We told our HD stories and asked for the Congressmen to cosponsor the bill. More than one tear was shed. While there were many highlights to the day, our second to last meeting was with Rep. Moran. He shook all of our hands while looking each of us in the eye. After a brief explanation of the bill by Jamie Kerns, he agreed to cosponsor the bill.
Since that day, two more Congressmen from Virginia have agreed to cosponsor H.R. 678. We have high hopes that at least one more will join our cause.
After the trip, most of us have followed up with emails to the Congressional offices. Joe Sieldarz’s follow up email to Rep. Connolly’s office was likely critical in garnering Rep. Connolly’s co sponsorship. After the trip, we privately contacted all the members of the delegation and asked them if they were publicity shy. To our surprise, all the members were happy to go public. Two of the more poignant responses were “I would be proud if you used my name” and “Having my name published is fine, I am shy, but not regarding this”. We realize that the legislative process is long and slow. Nevertheless we believe we made a difference on March 26th for our HD community. We are determined to keep working to help HD families in everyway that we can. Fear is the enemy of action. We believe in the human spirit and its ability to overcome many obstacles.
Please join us, contact your Congressman and set up a meeting in your district. Our current goal is to have fifty Congressmen cosponsor the bill. We are always available to help at firstname.lastname@example.org and email@example.com.
Tim and Karen O’Neil