The PKU community has been working on legislative support for Medical Foods coverage for decades. In 2018, we saw significant progress in moving forward the current iteration of this legislation: The Medical Nutrition Equity Act. Looking at this map, you can see how activism by the community—sending emails and letters, making phone calls, and visiting legislators—made a real difference.
We started 2018 with 18 co-sponsors of the bill in the House of Representatives. We end the year with 32, a 44% increase. Using Equity4.us, the website for the Patients and Providers for Medical Nutrition Equity coalition, stakeholders sent 5151 emails to 435 lawmakers from 46 states requesting support for the bill, and 120 families used it to share their medical foods stories and made a personal impact, even far from Washington DC.
Looking at the states with the most engagement (those in darker blue) you notice trends:
- Many are very populous. This makes sense: more people to send more emails, but also more people who need medical foods;
- We picked up co-sponsors in those states circled in green, which you’ll notice, are also those states that were more engaged in activism;
Conclusion: This type of activism really makes a difference. Now we need to keep up the momentum. In 2019:
- The MNEA will have to be reintroduced in the 116th Congress. The text of the bill won’t significantly change, but it will have new bill numbers;
- We will need to get the current cosponsors to sign onto the bill once it has been reintroduced. This shouldn’t be hard, but we will need your help in showing lawmakers the bill remains important to their constituents;
- We’ll need to add more co-sponsors to the bill in order to get it passed;
What can you do?
- Sign up for action alerts at http://equity4.us so the coaltion can let you know when to take action;
- Share your personal medical foods story so the coalition can represent you personally even when you can’t get to DC to meet with legislators;
- Mark your calendars for the Patients & Providers for Medical Nutrition Equity Hill Day, May 6-7, 2019. We’ll need as many advocates as possible to make our case in person to legislators;
- Order your Not Much Phe in Me! Tshirts to support our advocacy efforts and raise awareness for the act (The back reads “Support the Medical Nutrition Equity Act” and has the URL of the coalition’s web site);