Sunday, March 18, 2012

JDRF Government Day - meetings on the Hill

After another delicious breakfast (they fed us well), it was time for the research update.  I had been looking forward to this session for obvious reasons and it was indeed very interesting. The research was divided into three sections.
These are the topics that are currently funded by the JDRF.

  • This included the use of faster insulins and glucose responsive insulin which would only be activated in the presence of glucose.
  • The Artificial pancreas project which is the focus of the current Promise campaign.  The FDA has recently released a guidance that will help get it to approval.
  • This includes the TEDDY study (The Environmental Determinants of Diabetes in the Young)
  • Genetic and environmental triggers of diabetes are being isolated and studied.
  • Trial net is the study that tests the family members of Type 1s to see if they possess antigens known to be associataed with diabetes.
  • People who have just been diagnosed are treated with immunosuppression therapy in hopes of delaying the onset of severe Type 1 diabetes.
  • Islet cell transplantation is currently funded by the SDP (90%).  It is hoped that FDA approval will help more patients have this option.
  • Micro and macro-encapsulation of islet cells is the next step.
  • Regeneration of beta cells is another direction.  Progenitor cells are a hope as is the reprogramming of alpha cells to become beta cells.

After lunch we boarded buses and headed for Washington DC.  Today we met with our state senators.  All of the people from Ohio attended.

Our first meeting was in the office of Sherrod Brown(D).  We met with one of his aides who seemed very interested in what we had to say.  It was very similar to a Promise meeting.  We all told our personal stories and then made sure that we asked for the support with specific items.  We asked each legislator to sign a letter of support for the Special Diabetes Program, to support the artificial pancreas project, to vote for financial support of the NIH and the FDA, and to join the diabetes caucus.  It was emotional hearing and telling our stories.  And the JDRF had us very well prepared with our talking points and our literature.  I felt that this meeting went very well.

Our next meeting was in the office of Rob Portman(R).  Again, we met with an aide.  She was polite, but not as interested.  When we asked for financial support she said that it is the Senator's policy not to support one disease over the others.  "It is too much like playing God".  That's hard to argue against and we could tell it wouldn't get us far.

We took a bus back to the hotel and arrived just in time to get ready for dinner.  We were served a nice dinner and enjoyed a nice program afterwards.  Jeffrey Brewer, president and CEO of the JDRF was the speaker and he gave a nice and encouraging talk.  Various awards were presented to some of the advocates.  I didn't know them, but judging by the smiling applause, they were deserving.  It was a very nice evening.

Tuesday morning, we had breakfast, packed up, and again headed for Washington DC.  Today we would be visiting with our Representatives.  We were able to meet with Rep. Latta(R) in person.  He was as friendly and interested as he was in our Promise meeting last fall.  For Reps. Kaptur(D) and Jordan(R), we met with their aides. Both were eager to hear our stories and were attentive as to what we were asking.  Rep. Kaptur had already performed all of the things that we were asking, so it was just a nice time to visit and talk about the importance of our mission with her aide.

After my meetings, I walked around for awhile just taking in the sights and then suddenly it was time to get to the airport and come back home.  The trip was pleasant and I enjoyed just sitting quietly and walking around the airport thinking back on the previous four days of adventure.  I met so many interesting people that I hope to remain in contact with and learned so much about advocacy.


shannon said...

thanks for the link to the TEDDY program, i've not heard about that before! (my daughter was diagnosed 2.5 years ago).

and thanks for your advocacy!

Camille said...

HI Kathy. Thank you for your advocacy.
As someone who has benefitted from research, it is very powerful to have your voice when advocating for funding for research for a cure, and until then, safer and easier management of type 1 diabetes.
The first year I attended Govt. Day was a little overwhelming. But seeing so many really smart, motivated people gave me great hope that a cure for type 1 was possible.
Thank you for your advocacy and for all you do. And come visit us in MN! I can't guarantee that the rivers will be as energetic for you and Gary, but the bike trails will be great : )

Kelly said...

It sounds like you had a great trip. Thank you for speaking up for us.