JDRF Advocacy 2019 priorities: Access and affordability as we push for the cure

in , ,

By Mark Bowerman, Advocacy Chair for JDRF Eastern Pennsylvania

The federal government is the single largest source of funding for type 1 diabetes (T1D) research in the United States. JDRF Advocacy’s mission is to keep this investment coming—with no interruption to the research being conducted—while fighting for policies and legislation that increase access to and affordability of all therapies to manage, cure and prevent T1D.

To achieve this goal, we have four simple requests of our Members of Congress this year:

  1. Renew the Special Diabetes Program (SDP).For 20 years, the federal government has played a critical role in funding research to manage, cure and ultimately prevent T1D. The Special Diabetes Program dedicates $150 million of government spending each year—that’s roughly 50 percent more than all of our fundraising efforts across the U.S. collectively. But it’s up for renewal this fall and we are seeking a five-year extension.
  2. Make insulin affordable.The reasons are complicated, but the impact is clear—in recent years, insulin has become outrageously expensive, regardless of whether people have health insurance. Approximately 19 bills in Congress are seeking to address runaway drug pricing. While our national office will be evaluating those bills as they make their way through Congressional committees, JDRF is supporting policies that seek to eliminate the rebates that are artificially raising the price of insulin.
  3. Protect those with pre-existing conditions in our insurance markets.JDRF and other medical advocacy groups successfully fought off attempts to weaken protections two years ago. Since then, a judge in Texas has ruled that the entire Affordable Care Act, including its protection for those with pre-existing conditions, is unconstitutional. This ruling is on hold while it’s under appeal to higher courts, and most observers believe that the ruling will be overturned. But JDRF stands at the ready to push for continued protection for those with pre-existing conditions as Congress considers new healthcare legislation.
  4. Secure full funding for the National Institutes of Health (NIH) and Food and Drug Administration (FDA).NIH manages the SDP and related research into treating, curing and preventing autoimmune diseases. The FDA approves treatments before they go to market. Our national advocacy team works very closely with both agencies, steering research investment and shaping regulatory review of treatments. Having both agencies fully funded and operating at strength is essential to getting access to better therapies and, eventually, a cure.

Your role in this

Our voices are most powerful when we raise them together. Members of Congress—rightly—respond to constituent pressure. If they hear from one or two of us, it’s easy to ignore. If they hear from 10 of us, they’ll take note. If they hear from 300 or 3,000 of us, they will yield to our demands. We always engage with our Representatives in a bipartisan manner and with the utmost respect. We’re mindful that we are building long-lasting relationships.

But we can never forget that they were elected to represent our needs—and our urgent need is a cure for T1D.

If you are already signed up as a JDRF Advocate, your job is easy: respond to the messages you get from national and chapter advocacy leaders, asking you to take action. The action is always a simple one, usually an auto-populated e-mail message to send or petition to sign. Most actions take less than a minute. Our collective impact is massive.

If you are NOT a JDRF Advocate yet, your next task is almost as easy: Sign up NOW. Then you, too, will be ready to respond when needed.

If you feel like you have a passion for advocacy beyond sending e-mail and signing petitions, please reach out to me directly. We have ways of deepening involvement, including in-district meetings with Members of Congress, Children’s Congress, Government Day in Washington D.C. and our District Captains program.

The Eastern PA chapter has been a leading light for JDRF Advocacy for many years. Help us keep this tradition alive and thriving, working toward better T1D treatments and a cure.

Above: JDRF Advocates representing eastern PA visit Capital Hill on March 6, 2019 for Government Day.


Mark Bowerman is the volunteer Advocacy leader for JDRF Eastern Pennsylvania. In that capacity, he serves on the board of directors and executive committee.