My name is David Nell. I live in Fort Mill, SC which is a suburb of the Charlotte, NC metro area. I was diagnosed with CLL in January, 2007 during my annual physical….that story is familiar to a lot of us CLLers. I was “wait and watch” for almost two years and did Rituxan treatment in October and November, 2008. Fortunately, I have stayed steady or slight increases in my WBC and Lymphocytes until recently. I am now showing a jump in both and enlarged lymph nodes, etc. In early March, I was contacted by an LLS Advocacy Director regarding this Act asking me to contact my district US House Representative, Ralph Norman about co-sponsoring this Act. That motivated me to research and learn more about it. The more I read and learned was a wake-up call for me.
I am a member of our local CLL Society support group that meets monthly. Since the beginning of the year, I have heard a couple of our members talk about an oral drug (like Imbruvica) they are taking and the high cost and personal financial impact it presents. These support group discussions, my symptom changes, and being asked to contact my Congressman about this Act finally woke me up to the significance of this issue and that I could be very affected at some point in the near future. And….I always thought I was reasonably intelligent and aware, but……Duh!
So…being retired with available time, I decided to get involved and see if I could make something happen. I did meet with Ralph Norman (U.S. Representative for South Carolina’s 5th congressional district) and he graciously gave me about 20-30 minutes of his time to explain this issue. He said he would co-sponsor this Act. Ralph also recently spoke to a group of about 100 residents here where I live – a 55+ Del Webb community. I had a chance to briefly say hello again and remind him of co-sponsoring this Act. He mentioned something interesting in his presentation…that to get action on introduced laws/acts, the Speaker of the House needs to push it up front. That was another awakening that made sense. Washington is so political with “millions” of acts/laws being sponsored, that “something” has to move them. HR 1409 was introduced March, 2017 and now has 164 co-sponsors, but seems to be going nowhere.
I also talked with Danielle Bubnis, Sr. Director of LLS about pushing for passage of this Act. I told her about our CLL Society and its 22+ support groups that want to work towards passage of this Act. I mentioned the May, 2018 CLL Bloodline newsletter discussed this and included the PEAC link regarding the Act. I also sent her a copy of that newsletter. She indicated that LLS may be able to use its “advocacy email system” where they draft emails that we, the public, can send to our respective Reps and Senators asking them to support a particular issue. On May 16, Danielle sent out an email to many thousands LLS newsletter recipients encouraging them to contact their Representatives about passing this Act. She included a toll-free number to use for contact (see below). On June 1, she sent another email regarding all the calls made and meetings with House offices. It garnered more co-sponsors.
I also sent an email to AARP asking them to get behind this issue and push for passing this Act. I sent it to Nancy Leamond, who is an Advocacy Director.
A long time ago when I was working, I learned about the “Causal Approach to Getting Results”. Basically, it is “gentle pressure relentlessly applied”. I believe that is what we all have to do to make this Act happen. I’m still working on a plan to get more people and groups involved. Bottom line….maybe if many, many of us individually or thru groups keep flooding our Reps and Senators and Paul Ryan about passing this Act, they will finally do it to make us stop! Sound crazy? Maybe not. We need to push this.
Want to make today special?
As you read this, blood cancer advocates are meeting with policymakers in Washington, DC – and fighting for legislation that would help cancer patients afford the treatment their doctors recommend, no matter what form it takes.
If we add our voices to this effort – right now, while these meetings are happening – we can help build support for federal oral parity legislation and ensure that more cancer patients can access the treatments they need to survive.
Just dial 1-855-980-5634 to be connected with your Representative. A recording will walk you through some talking points, and we’ve also included a script below. When someone at the office picks up, just say:
Hi, I’m David, one of your constituents from Fort Mill. I’m calling to ask my Representative to support the Cancer Drug Parity Act to help cancer patients get the treatments their doctors recommend, no matter what form they take. 43 states have already passed laws that make cancer care fair, and now I urge Congress to do the same. Please stand with blood cancer patients and support the Cancer Drug Parity Act.
[If you want, you can tell them why this issue matters to you and your loved ones.]
This two-minute call will do so much to amplify the meetings happening on Capitol Hill today and show policymakers how much this issue means to blood cancer patients.
Please call 1-855-980-5634 today to support the Cancer Drug Parity Act and then forward this message to your friends and family and ask them to do the same.
Thanks for raising your voice for cancer patients – today and every day.
Senior Director, Advocacy
The Leukemia & Lymphoma Society