The Power of Their Voices: JDRF Advocacy Goes to WashingtonFriday, March 30, 2012
JDRF recently held its Government Day, where members of the Advocacy arm of the foundation convened. National Volunteer Chair of Advocacy Camille Nash (pictured here) was one of JDRF’s leaders in attendance and she participated in meetings with congressional staff to brief them on the significance of research and petition them for continued funding of the Special Diabetes Program.
By: John Parkinson, Clinical Content Coordinator, DiabetesCare.net
Whether it be in favor of or denying a certain law, asking to fund a certain cause, or advocate about a personal conviction, every American has the right to petition the U.S. federal government. It is one of the essential and core values Americans hold true.
Unfortunately, this has become something of a forgotten belief for many Americans who have become skeptical of the petitioning process. Many people believe the federal government only listens to lobbyists who represent big corporations with deep pockets.
However, JDRF’s advocacy program is an antidote to this skepticism. JDRF’s Government Relations Advocacy program is a grassroots network of thousands of volunteer advocates that gets support from a small but very effective JDRF Government Relations staff in Washington, D.C. The advocates work together to ensure that funding for type 1 diabetes is strong.
This responsibility of ensuring research funding is the impetus for JDRF advocates telling their personal stories of life with type 1 diabetes. In fact, members of JDRF Advocacy recently came back from Government Day, and meeting with members of Congress. Held in early March in Washington, D.C., Government Day is really a series of different events held over the course of four days and includes: briefings on the latest findings in type 1 research; networking events for advocate leaders to meet or reconnect; and meetings with members of Congress done on Capitol Hill.
Meeting with members of Congress during Government Day is the most crucial element to the outing as JDRF Advocacy volunteers rally together to meet with their individual congressional members and their staffs. Volunteers want to talk about the importance of research and to petition their congressional representatives for their support for a renewal of funding for the Special Diabetes Program (SDP) that currently provides $150 million a year for type 1 diabetes research.
In fact, renewal of funding for the program is one of JDRF’s most important initiatives for 2012. One of the leaders at JDRF who aided in Government Day and also has a big role is Camille Nash. As JDRF’s National Volunteer Chair of Advocacy, Nash leads a team of 16 regional volunteers on the Grassroots Leadership Team, 150 volunteer state leaders, and 80,000 advocates.
Nash has been involved in advocacy for ten years, and as many people who are active, she has been touched by diabetes.
Fresh from the recent Government Day event, Nash took some time to talk with DiabetesCare.net about why she got involved in advocacy, her role as Chair, and a review of the takeaway messages from Government Day.
DiabetesCare.net: Can you talk about your personal connection to diabetes?
Nash: My daughter Julia, now 23, was diagnosed with type 1 when she was 12 years old. She was critically ill and wound up being hospitalized for 5 days. The first days and weeks were a blur; trying to learn everything we needed to do to keep Julia alive and safe while still trying to have a normal life.
At the first follow up office visit with the endocrinologist, I asked about the risk of Julia’s identical twin, Claire, developing the disease. She was reluctant to tell me and I had to ask several times before she told me that Claire had a high risk of developing type 1. (Claire (L) and Julia (R) Nash pictured here)
DiabetesCare.net: How did you segue from Julia’s diagnosis to first getting involved in JDRF Advocacy?
Nash: When I found out Julia had diabetes, I went to the Internet to dig for information. I was trying to find a way to feel better about this diagnosis, and I didn’t. I was left feeling pretty frightened and fearful for her future.
A friend referred me to a person at my local JDRF chapter and she began talking to me about the Edmonton trials for islet cell transplantation.That was the first thing that began to give me hope. I learned that there was research going on that held great promise for making life better for people with type 1 and that many scientists believed that a cure for type 1 is possible.
I learned that JDRF was an organization founded by parents who wanted to fund research for a cure. JDRF families find many ways to raise money: Walks, galas, even lemonade stands and garage sales. Last year we funded $116 million in research.
And as a JDRF Advocate, I ask the federal government to partner with us in funding research for diabetes. Right now, this is being done through the Special Diabetes Program that provides $150 million a year and is distributed through the National Institutes of Health.
My first advocacy experience was with the Promise to Remember Me Campaign. We met with Congressman Jim Ramstad (R-MN). I thought I would be a part of a large group of people standing in the back of a room. Instead, we sat around a conference table with Congressman Ramstad and each of us shared what our challenges were living with type 1.
Dealing with diabetes can leave you feeling frustrated and powerless sometimes, but having Congressman Ramstad listen to us, and show his support by saying he would vote for funding for type 1 research when he returned to Washington, D.C.—this was an incredibly empowering and exciting experience. After that, I was hooked. I came to realize that talking to our legislators is not only our right, but also our responsibility.
This meeting had a profound impact on my daughters, too. They came to see the power of their voices.That is what advocacy is all about.
Since that time, I have done many Promise to Remember Me meetings, and I still find each and every one of them exciting. You see the transformation that occurs as advocates see the impact of sharing their stories. Often, as legislators come to understand the burden of diabetes to families and to our country, they become extremely supportive of funding for research. I always view this as democracy in action.
DiabetesCare.net: Can you provide an overview of your role as the National Volunteer Chair?
Nash: Being Chair of Advocacy is about working with volunteers, helping them to understand our message, and why sharing their stories with legislators is important. I also work closely with JDRF’s small but very effective Government Relations staff in Washington, D.C. As advocates, we build relationships with each other and with legislators.
DiabetesCare.net: JDRF just had its Government Day. Can you explain what that is?
Nash: Government Day brings government relations volunteer leaders to D.C. to provide them with information to share about our legislative goals and research updates, while it prepares them to visit their legislators and their staffs on Capitol Hill.
DiabetesCare.net: Did JDRF have any specific goals or plans going into this year’s Government Day?
Nash: JDRF’s mission is to fund research to improve lives for people with type 1 until there is a cure. Specifically, we have two big government relations goals right now. One is to move the artificial pancreas through the approval process. In December, the Food and Drug Administration (FDA) issued draft guidance that will provide the pathway for getting the artificial pancreas approved. We are hoping that by early summer we will have a clear directive to move forward with the project.
The other important focus for Government Day was speaking to legislators about the tangible results of the Special Diabetes Program and the need for the renewal of funding so that research and clinical trials continue. If researchers don’t know money is in place and they are unsure of funding in approaching years, they will not want to continue research or undertake new research projects.
DiabetesCare.net: What congressional members did you meet with, and how was the reception from them?
Nash: JDRF advocates from across the country had over 500 meetings with their legislators on Capitol Hill. My fellow advocates from Minnesota and I met with the health aides or other staff of our legislators, but we also met with Senator Amy Klobuchar (D-MN). (Pictured just below from left to right: Ann Strader, Shelley Page, Sen. Amy Klobuchar, Camille Nash, and Debbie Evans)
When we talk to legislators, they are of course concerned about the health and welfare of their constituents, but what grabs their attention is the cost of diabetes in terms of dollars and cents. There is a real concern for getting spending under control in this country now. And I can say that the best way to get a handle on healthcare costs is to get a handle on diabetes. We tell our legislators that every 1 in 3 Medicare dollars is spent on people with diabetes. As a country, we spend $174 billion on diabetes every year. We also break down these costs by state so that congresspeople can see the costs to their own region.
We also spoke to our legislators about what JDRF families do to raise money to fund research for a cure for diabetes. Legislators are usually impressed with this because we are putting our money where our mouth is. We ask the government to act as partners with us in funding research.
It is important for legislators to understand that renewing the Special Diabetes Program should truly be considered an investment. It is not only a compassionate decision to renew this program, but it is economically smart.
We have tangible results from the Special Diabetes Program. For example, this program has funded research that halts and reverses diabetic eye disease. If people can continue to remain in the workforce by preserving their eyesight, that obviously has huge quality of life implications and very big financial ramifications.
DiabetesCare.net: What were some of the biggest takeaway messages you received from scientists about the latest technologies such as the artificial pancreas project, research regarding a cure, or any overarching themes?
Nash: In terms of how we look at type 1 diabetes, we talk about preventing, treating, and curing the disease. In terms of preventing, the scientists who briefed us at the Government Day meeting talked about areas of research such as genetics—who gets type 1 diabetes and why. They are also looking at environmental triggers and trying to understand what precipitates the development of the disease.
In terms of treating type 1, there was a lot of discussion of the artificial pancreas. The artificial pancreas will transform diabetes care by taking a lot of the moment-to-moment work out of managing diabetes. The artificial pancreas will automate insulin delivery using technology already available.
Most parents of type 1 children and adults with type 1, will tell you that they wake up multiple times every night to avoid dangerous lows. While we were at Government Day, we received some very exciting news: the University of Virginia announced it had received FDA approval to start an outpatient clinical trial for the artificial pancreas. Anything that makes diabetes management easier and safer—until there is a cure—is important.
In talking about cures, it was exciting to hear about other research developments. Often people with type 1 diabetes are diagnosed very young and they have a full lifetime to develop complications. The scientists described important discoveries to prevent diabetic kidney disease and also for reversing vision loss.
As you know, type 1 diabetes occurs when the body has an autoimmune response and destroys its own insulin producing cells. Researchers are very interested in the possibility of regenerating these cells or transplanting them from donors. Both of these procedures require suppressing the autoimmune response that killed the cells in the first place.
Regarding transplantation, we know there are insufficient islet cell replacements available from cadaverous donors to provide to all potential recipients. But for people who do receive islet cell transplants, they require a regimen of immunosuppressants to preserve those cells. Researchers are looking at transplantation techniques that would require less punishing immune therapies as well as looking at alternate sources for the cells themselves.
DiabetesCare.net: What are JDRF’s current plans for advocacy going forward for the next year?
Nash: We have a Promise to Remember Me campaign going on right now, and it will finish up in May. Our goal is to get to 432 meetings occurring in their home districts between families and legislators. As of this interview, we have already scheduled or held 400 meetings.
Sometimes when we have these Promise to Remember Me meetings, people are a little intimidated they are meeting with a member of Congress. People may feel like they won’t remember everything they want to say. We simply tell them to share their story, and what they are comfortable expressing. Part of our charm is that we are not slick lobbyists; we are families sharing our stories.
I used to think our legislators were doing us a favor in meeting with us. Now I know how important it is for legislators to hear from their constituents.This is their opportunity to find out about the challenges their constituents face in their day-to-day lives. Some of them have never met someone who has type 1 and have no idea of the personal and financial toll diabetes takes on families and our society.
Some people may say, ‘I don’t know if I can contribute because I don’t know much about the legislative process.’ You don’t have to be politically sophisticated to be involved in advocacy. And, one of the best ways to learn about the legislative process is to follow one issue all the way through. People would be surprised how much they learn about the legislative process by participating in advocacy--and it is fun, too.
Renewing the Special Diabetes Program is imperative to curing type 1 diabetes and its complications.Volunteering with JDRF has given me the opportunity to learn about much of the exciting research going on.We have so much to be hopeful about, but it all depends on research, and research requires funding. So, there is more work to be done, and I won’t stop until there is a cure for Julia and others living with type 1. Advocacy is democracy in action.