By Talley Henning Brown
Camille Nash has told the story dozens, if not hundreds, of times, but for her, it never gets old. Over the course of more than a decade, in so many phone calls, emails, and personal meetings that she no longer keeps count, the Minnesota mother of three has become very familiar with her elected representatives in Congress. She’s talked to them about the day 12 years ago that her daughter Julia was diagnosed with type 1 diabetes (T1D). In the ensuing process of educating her legislators about the daily burden of T1D, Camille has learned that a personal story is, not surprisingly, the most powerful. As Breakthrough T1D’s national volunteer leader for advocacy, she now devotes an impressive amount of energy to helping others throughout the T1D community become better advocates. Because as Camille can attest, going to the polls on Election Day is only one way to make your voice heard.
This year, Breakthrough T1D advocates are preparing for an especially important discussion—the renewal of the Special Diabetes Program (SDP). Established in 1997, this federal program has been responsible for nearly $1.9 billion in T1D research. However, without a multiple-year renewal from Congress, crucial research will stop next year. Throughout 2012, Breakthrough T1D has been rallying its advocates all across the country to speak up in favor of continued funding. There really is no time like the present to become a Breakthrough T1D advocate—and many people just like Camille have discovered just how easy but impactful it can be. “You don’t have to be politically experienced; you just have to have a willingness to share your story,” she says. “Right now, we’re asking volunteers to call Congress and urge them to enact a multiyear renewal of the SDP. We make it easy! You can find all the information you need at advocacy.jdrf.org.”
Call to action
Most people would say that a person can never be truly prepared for a T1D diagnosis. In October 2000, Camille drove her sick 12-year-old daughter to the family doctor. She suspected that Julia had the flu. But instead of returning home with a prescription for antibiotics and bed rest, Julia was diagnosed with diabetic ketoacidosis and was dangerously close to falling into a coma. She was immediately rushed to the hospital. With her blood-glucose level at over 900 mg/dL (normal blood glucose ranges between 70 and 140 mg/dL), Julia spent four days in the hospital as doctors worked to bring down her blood-glucose level and teach her about using insulin and the other management skills she would need to stay safe and alive. “Even then, with Julia receiving round-the-clock medical care, I didn’t realize how difficult having this disease would be,” Camille says.
In the months that followed her daughter’s diagnosis, Camille learned about Breakthrough T1D. Her first phone call to the MinnDakotas Chapter provided her with a wealth of new contacts, and new information to act on. For example, Julia and her identical twin sister, Claire (who does not have T1D), make uniquely appropriate subjects for clinical research investigating the causes of T1D and possible preventive strategies. To date, the sisters have participated in six clinical trials. The Nash family attended its first Walk to Cure Diabetes in 2001 and were simply astonished by the turnout (the MinnDakotas Walk, with more than 20,000 attendees, is one of the largest in the country). “The Walk was an overwhelming display of support, and it really solidified for us this sense of community,” says Camille, who soon after signed up with the chapter to become a Breakthrough T1D advocate.
Politics for civilians
Camille and Julia’s first Promise Meeting—shorthand for the Promise to Remember Me Campaign, the biennial initiative through which Breakthrough T1D advocates meet with their members of Congress in their local district or state offices to promote federal funding for T1D research—was not at all what they expected. Camille and Julia were prepared to sit at the back of a crowded room, in a public meeting where they might—or might not—have a chance to speak. Instead, they sat at a table with Representative Jim Ramstad, then chair of the House Ways and Means Committee, for a very personal discussion. “He made us feel so hopeful, it really changed the way we perceived ourselves in the political process,” says Camille, “and Julia realized that her voice really made a difference.” Having grown up in a civically minded family—her parents taught her, “If you don’t vote, you can’t complain”—Camille understood that if they wanted to get the necessary research funded, they would have to be an active part of the larger political conversation.
Over the years, Camille has served on the Government Relations Committee of the MinnDakotas Chapter and in a state and regional leadership capacity for Breakthrough T1D. In 2010, she was Promise to Remember Me co-chair, and in that role, she attended every Promise Meeting in Minnesota, as well as several in other parts of the region. In 2011, Camille was presented with the Pam Sagan MinnDakotas Chapter Award for Excellence in Government Relations. Also in 2011, she was named national volunteer chair of advocacy. “Even at this point in time, I still get excited about every meeting,” she says. That enthusiasm has become a family trait. Julia and Claire, now 24 years old, have both worked in related fields—Julia as a staff assistant for U.S. Senator Al Franken (Democrat, Minnesota) and, currently, as a legislative correspondent for U.S. Representative Ron Barber (Democrat, Arizona), and Claire is a coordinator at Breakthrough T1D’s government relations office in Washington, D.C.
After registering at Breakthrough T1D’s Advocacy website, advocates receive information about their members of Congress, including website and email links, office addresses, and phone numbers. And a person can make a difference with those three tools alone. As Camille explains, most Congressional offices have staff assigned—both in Washington and in the local district and state offices—to keep track of constituent communications. When a particular issue is up for a legislative vote, simply calling the office or writing a one-line email to make your opinion heard can be enough to sway how a legislator votes. “With every member of Congress, there’s a lot of competition for attention,” says Camille. “Your legislators meet with corporate executives and professional lobbyists all day, every day. They need—and often they will admit they prefer—to hear from the families in their constituencies as well.”
How do you know when an issue affecting the T1D community is on the legislative agenda? If you’re a registered Breakthrough T1D advocate, Breakthrough T1D’s national government relations office and your chapter will keep you informed through Action Alert emails and other communications. Additionally, every chapter has a Government Relations Committee, which handles all the preparatory details for a legislator meeting, including scheduling appointments with legislators, “marshaling the troops” to attend, and providing talking points for advocates.
What can you expect when you attend a meeting? “Sometimes it’s two or three people; sometimes it’s many more,” says Camille, “and it’s been really extraordinary to watch these relationships develop, and watch legislators learn more about type 1 diabetes on all sorts of levels—the medical issues, insurance issues, job issues, emotional issues—everyone has a different perspective to bring to the table. And even if you don’t want to talk, you’re encouraged to come, because just your being there bears witness. No matter what the spectrum of your participation, you will make a difference.”
We are the change
And finally—just how effective is grassroots advocacy? According to Camille, you’d be (pleasantly) surprised. “Often, legislators are grateful for the tools we bring them to help fight for funding,” she says. Breakthrough T1D’s track record of tangible results is one of its most powerful tools. One example, among many: when Julia was diagnosed with T1D just 12 years ago, statistically speaking, her life expectancy could have been 10 to 15 years shorter than her twin sister’s. “Thanks to research funded by the SDP,” says Camille, “studies now show that gap has closed.
“Another mark in our favor is that we’re volunteers. We’re not professional lobbyists, we do this because we genuinely care, and that says something to our legislators,” says Camille. Sometimes, a personal story can bring an argument home like nothing else. “I’ve been in several meetings where the legislator opened by saying ‘I just can’t support the SDP this year,’ but by the end of the meeting, the legislator had signed on again.”
Beyond the immediate goal—funding essential research to cure, treat, and prevent T1D—advocacy provides something that many people find personally invaluable. “It is enormously empowering,” says Camille. “I’ve always been grateful to Breakthrough T1D for fostering that opportunity. And it’s really exciting to see families take advantage of it.”
Your advocacy can mean more than ever right now, as Breakthrough T1D works to ensure a multiple-year renewal of the SDP before Congress adjourns at the end of the year. With such a crucial piece of research funding at stake, it may take more than one phone call or one email to get the job done. But as Camille puts it, “At $150 million, it’s worth the effort.”
To sign up today and start making a difference, go to advocacy.jdrf.org. And be sure you stay up to date on the latest about the SDP renewal campaign by following Breakthrough T1D Advocacy on Facebook, Twitter, and Pinterest.
