IDF Volunteers Ginny Job and Tommie Cassen with cosponsor Rep. Dennis Moore (KS) on Advocacy Day
It was just over a month ago when Congresswoman Doris Matsu (D-CA) and 7 original co-sponsors introduced HR 5597, the Medicare Patient IVIG Access Demonstration Project. Because of the efforts of IDF volunteers and members of the PIDD community, there are now 28 co-sponsors with more on the way. What has been fascinating over the past month is activity on the part of all members of the PIDD community.
The systematic follow-up by IDF Advocacy Day volunteers this year has been phenomenal and unprecedented. They have sent Thank You notes to people with whom they met on Advocacy Day. They have sent follow-up reminders to staff. They have called staff. They have sent Action Alert letters. Of the 22 co-sponsors (as of this writing), 12 are directly related to Advocacy Day volunteers. Never have we had this type of concentrated effort. And it is paying off!!
Whoever said that sending Action Alert letters doesn’t mean anything? There are 5 new co-sponsors whose only contact with IDF is through the letters they have received from our Action Alert system. They were not visited on advocacy Day. We don’t know of anyone from IDF who has had had contact with them prior to receiving Action Alert letters. Our only conclusion is that they responded to constituents who wrote them through our Action Alert. We do know that one new co-sponsor contacted an IDF letter writer for more information and subsequently became a co-sponsor.
It is amazing the number of people who believe that their letters don’t count. They do!!!
Another volunteer who couldn’t go to Advocacy Day met with her Representative’s staff in her home district and then repeatedly followed-up until the Representative called her personally to tell her that he will be a co-sponsor. There is nothing like tenacity.
Four of our new co-sponsors (and at least two more are pending) came by way of conversations with our industry supporters who feel just as strongly about the justice of HR 5597 as do patients and families. And, we thank them for their continued strong active support of the PIDD community.
People always ask, “What happens next with the bill”? We anticipate that before the end of 2010 (and after the November elections), a health care bill will emerge that we hope will be the legislative vehicle for the IVIG demonstration project. HR 5597 will not be voted up or down on its own. Rather it will be offered as an amendment to a larger health care bill.
Between now and whenever such a bill comes under consideration, IDF and friends need to keep momentum by gaining more co-sponsors and spreading the word through every means of communication – IDF Friends, Common Ground, Facebook, Twitter and even old fashioned letters to editors, legislators and whomever may listen and be helpful to the cause.
Thanks for all of your work!! And, let us all keep at it to get more co-sponsors and keep the dialogue moving along!!!!
Here’s the current list of Co-sponsors of HR 5597:
| Rep Blackburn, Marsha [TN-7] – 7/13/2010 | Rep Brady, Kevin [TX-8] – 6/24/2010 |
| Rep Braley, Bruce L. [IA-1] – 6/24/2010 | Rep Butterfield, G. K. [NC-1] – 7/30/2010 |
| Rep Cohen, Steve [TN-9] – 7/30/2010 | Rep Davis, Danny K. [IL-7] – 8/10/2010 |
| Rep Deutch, Theodore E. [FL-19] – 7/28/2010 | Rep Ehlers, Vernon J. [MI-3] – 7/19/2010 |
| Rep Fudge, Marcia L. [OH-11] – 7/28/2010 | Rep Gerlach, Jim [PA-6] – 6/24/2010 |
| Rep Jenkins, Lynn [KS-2] – 8/10/2010 | Rep Kildee, Dale E. [MI-5] – 7/13/2010 |
| Rep Kind, Ron [WI-3] – 7/28/2010 | Rep Marshall, Jim [GA-8] – 7/13/2010 |
| Rep McGovern, James P. [MA-3] – 7/1/2010 | Rep Moore, Dennis [KS-3] – 7/19/2010 |
| Rep Nunes, Devin [CA-21] – 7/22/2010 | Rep Paul, Ron [TX-14] – 7/28/2010 |
| Rep Pitts, Joseph R. [PA-16] – 6/24/2010 | Rep Richardson, Laura [CA-37] – 7/30/2010 |
| Rep Rothman, Steven R. [NJ-9] – 7/30/2010 | Rep Ruppersberger, C. A. Dutch [MD-2] – 7/28/2010 |
| Rep Rush, Bobby L. [IL-1] – 6/24/2010 | Rep Schwartz, Allyson Y. [PA-13] – 7/13/2010 |
| Rep Terry, Lee [NE-2] – 6/24/2010 | Rep Thompson, Bennie G. [MS-2] – 7/28/2010 |
| Rep Titus, Dina [NV-3] – 7/28/2010 | Rep Van Hollen, Chris [MD-8] – 6/24/2010 |
I am a 55-year-old female on Social Security Disability due to hypogammaglobulinemia, with which I was diagnosed 3-1/2 years ago in May 2007, severe allergies, and a myriad of other disorders.
I moved to the Pensacola Gulf Coast in January 2008, as living right on the eases allergy symptoms, as coastal breezes blow pollens inland, as when I’ve lived in Florida urban communities, I’m a lot sicker with greater frequency.
After the oil spill, however, everything changed. It became clear to me that it is dangerous for me to remain here, but since my Social Security Disability income is only $1060 monthly, I can’t afford to move to the senior/disabled community in Washington State that has accepted me, and in which I must take up occupancy by October 1st, 2010, or risk losing my Section 8 housing voucher.
I filed a claim with BP, submitting letters of support from two providers, as well as a copy of the 2008 Federal Social Security Judge’s detailed Total & Permanent Disability Decision, but BP treated me with disrespect, derision, and unprofessionalism, as though my claim were a joke to them.
Now that Ken Feinberg has taken over the claims process, I was promised my claim would be paid within 48 hours, but of course, it was not. Then I was promised it would be paid yesterday, but again, it was not, in spite of the fact that since the oil spill, I requested by claim be expedited as an ADA Accommodation Request, but that request has been treated like a joke not only by BP and Ken Feinberg, but by the US Dept of Justice, with whom I filed a Complaint, as well.
I’ve been forced to live here all spring and summer, not daring to set foot in the Gulf of Mexico or even on the small Big Lagoon beach where I live, due to the toxic stew contaminating the waters.
I’ve lived in Florida all my life, but I’ve received no assistance at all from either government or corporate America. The stress of these interminable and unnecessary delays has taken a toll on my Ig levels, and my current immunologist has increased the amount of my next infusion.
I can’t afford to schedule the movers or take my car in for servicing for the trip or anything.
It is unconscionable the way disabled citizens in this country are treated both by government and corporate America.
I need help and urge any who read this to please inundate the following with e-mails demanding my claim for emergency funds be paid immediately:
kfeinberg@feinbergrozen.com
mkrozen@feinbergrozen.com
cbiros@feinbergrozen.com
dfeinberg@feinbergrozen.com
rsrosen@feinbergrozen.com
susan@feinbergrozen.com
jackiezins@feinbergrozen.com
Maryann.Aiello@gardencitygroup.com
MaryAnna@feinbergrozen.com
info@gccf-claims.com
ADA.ComplaintAdmin@usdoj.gov
My GCCF (Gulf Coast Claims Facility) Claim Number is: 01144394.
Also, please inundate Ken Feinberg’s Washington office (202-371-1110) with calls demanding my claim, as well as the claims of all other Gulf Coast residents in ill health who need to relocate, be paid in full immediately.
Thank you.
Carol Tucker, MA
Pensacola, FL