Tag Archives: advocacy

The Special Diabetes Program is Renewed for One Year

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Good news! The House and Senate approved a 1-year renewal of the Special Diabetes Program at the current level of 300 million dollars: 150 million dollars goes towards Type 1 diabetes medical research through the National Institutes of Health (NIH), and 150 million dollars goes towards Type 2 diabetes prevention and treatment programs for American Indian and Alaska Native populations. The Special Diabetes Program (SDP) was set to expire in September, 2014.

The SDP fully funded the study, PERL: Trial of Allopurinol To Preserve Kidney Function in People with Type 1 Diabetes. This study would not have happened otherwise, with no profit motivation to study an inexpensive drug like allopurinol, as explained at the SDP Progress Report presentation during JDRF government days.

Other SDP breakthroughs include identifying 50 genes associated with Type 1 diabetes (versus 3 known genes associated with Type 1 in 1998), identifying immune therapies that have halted Type 1 diabetes disease progression for over 1 year, artificial pancreas trials now taking place on an outpatient trial basis, and the finding that diabetic retinopathy can be reversed!

Another SDP funded study, the DCCT/EDIC is a 30-year study with 95% of the research subjects still participating. The study has shown that 6.5 years of blood sugar control can decrease kidney disease by 50%. This decrease in kidney disease translates into a projected savings of over 14 billion dollars in 10 years to Medicare from the reduction of end-stage renal disease (ESRD) and a savings of over 126 billion dollars to Medicare in 25 years.

You can read more about the Special Diabetes Program in my previous post: JDRF Government Days.

Note the sequestration caused the Special Diabetes Program to be cut by 5.1%, which resulted in an almost 20 million loss to the program over 2013 and 2014.

This important renewal allows SDP-funded medical research to continue, and ideally a 5-year renewal will be obtained in the future, so that numerous clinical trials will have the chance to deliver on results that will lead to better treatments for Type 1, prevention of Type 1, and ultimately a cure for Type 1 diabetes.

Now you can quickly and easily email your thanks to your senators here and your congress members here.

 

JDRF Government Days

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On March 11th, 2014, 190 JDRF advocates from across the country traveled to Capitol Hill in Washington, DC to meet with their legislators to request a 5-year renewal of the Special Diabetes Program (SDP).

The SDP funds medical research to find better treatments and ultimately a cure for Type 1 diabetes. The SDP is set to expire in September 2013, and if it is not renewed 150 million dollars per year towards research to end Type 1 will be lost.

The JDRF Government Days included an inspiring speech by Jeffrey Brewer, President and CEO of JDRF, called “JDRF: Turning Type One into Type None” in which he detailed plans for a pathway to the cure, including discovery research, clinical development, regulatory, reimbursement, and delivery to patients, collectively known as the pipeline.

JDRF has over $530 million currently invested in Type 1 research projects around the world (in 17 countries, and this includes more than 50 human clinical trials). The research focuses on six key areas: the artificial pancreas, treating and reducing complications, beta cell encapsulation, prevention, restoration of beta cell function, and smart insulin.

Richard Insel, MD, JDRF’s Chief Scientific Officer, Judith Fradkin, MD, Director, Division of Diabetes at the National Institutes of Health, and David Wheadon, MD, JDRF’s Executive Vice President of Research and Advocacy also spoke on the progress of the Special Diabetes Program’s research, citing a new treatment to restore vision loss from diabetic macular edema via VEGF inhibition.

While JDRF contributed 106 million dollars to research in 2013 (over 1.8 billion dollars since its founding in 1970), if the SDP is not renewed, JDRF cannot make up the gap. Studies like the TEDDY study (100% SDP supported), TrialNet (67% SDP supported), the Clinical Islet Transplantation Consortium (98% SDP supported), the Beta Cell Biology Consortium (75% SDP supported), the Diabetes Research in Children Network (67% SDP supported), the Diabetic Complications Consortium (59% SDP supported), and the Diabetic Retinopathy Clinical Research Network (26% SDP supported) will lose their funding.

To support JDRF’s efforts to get the SPD renewed, click here to learn more and sign up to be an advocate.

To act now to email your members of congress to urge them to support a renewal of the SPD, click here.

To learn more about the Special Diabetes Program, click here.

To read about the SDP supported research studies and the burden of diabetes on society, read this JDRF brochure for more information.

Now that’s juicy!

 

 

 

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Taking the Steps to a Cure for Type 1: The Special Diabetes Program

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The Capitol

The Special Diabetes Program (SDP) legislates 150 million dollars for Type 1 Diabetes research annually. The SPD was renewed in 2012 for one year (previously renewed for 3 years), so it will be up for renewal again this year. Multi-year funding is needed to plan for and continue large-scale trials.

Research studies that the SDP has supported include: Type 1 Diabetes TrialNet, the TEDDY Study, Clinical Islet Transplantation Consortium, the Beta Cell Biology Consortium, the Diabetes Research in Children Network, the Diabetic Complications Consortium, and the Diabetic Retinopathy Clinical Research Network.

To support the renewal of the SDP, you can become a JDRF advocate.

Becoming a JDRF advocate is simple and costs nothing. You can sign up online at JDRF Advocacy. Then you will receive emails with legislative updates and requests to email or call your representatives when needed.

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JDRF Children’s Congress Application Deadline is Nov. 1st

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The next JDRF Children’s Congress will be held in Washington, D.C. on July 8th to July 10th, 2013. Children ages 4 to 17 are eligible to apply. It is a chance for children to advocate for a cure for Type 1 diabetes themselves. They will meet their members of congress and other children with diabetes from around the country, as well as some international delegates. The application is online and can be completed here. The JDRF provides for travel expenses. More information about the program is here. A link to my previous post on the 2011 JDRF Children’s Congress is here: Highlights From the JDRF Children’s Congress.