#EpiPenBill Advocacy Epilogue

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Whoa! Nut Free Wok is in the news!

In the midst of advocacy for SB 1266, I was invited to share a recipe with NBC News. Did you see the article featured on NBC News, “Meet the Mom Behind the ‘Nut Free Wok“? I’m so honored for the article on NBC’s website but more importantly grateful to NBC for the opportunity to have food allergy make mainstream media and to reach an audience that might not otherwise hear about food allergies and anaphylaxis from a parent’s point of view. Picking a recipe was easy, taking the photos was fun, but writing the article made me think hard about how my various experiences as a food allergy mom has brought me to this point and what’s next. Before moving forward, I felt an advocacy epilogue is needed for my soul.

A Brief Recap

  • Brian Hom, food allergy advocate and dad of BJ Hom (who tragically passed away due to his peanut allergy) asked a few friends to join him in advocating for mandatory stock epinephrine in schools legislation during the summer of 2013. He and I were very busy preparing for our local food allergy walk so I didn’t have the mental bandwidth to think about legislation.
  • Senator Bob Huff successfully authored SB 669 and the bill was signed September 2013, authorizing people (e.g. coaches, day care providers, etc.)  to be trained to carry and administer epinephrine as needed for anaphylaxis. Senator Huff is this food allergy mother’s hero.
  • My local state senator, Senator Jerry Hill spoke at my son’s school around October 2013 and helped them make the connection between running a student government with his real life experiences as a government official. He talked about how laws are made and invited the students to share their ideas of good laws that are needed. My son thought that our state needed mandatory stock epinephrine to help other children and we made an appointment to meet with Senator Hill. After subsequent meetings with me and other advocates, Sen. Hill agreed to be a co-author of a stock epi. You can read more about Senator Hill and my son in an article published in our local paper.
  • President Obama signed the School Access to Emergency Epinephrine Act on November 13, 2013, which gives priority consideration for asthma grants to states with mandatory stock epinephrine laws. His support and revelation that his daughter also has a peanut allergy truly underscored that food allergies and anaphylaxis can affect anyone and we need more protection in place to save lives.
  • I launched Nut Free Wok officially on January 1, 2014.
  • Three weeks later, Senator Huff authored SB 1266, an epipen bill to update and strengthen California’s existing stock epinephrine law to require schools to stock epinephrine so that our state would qualify for priority consideration for the federal asthma grants and more importantly, to save lives in California. Senator Huff = Hero (again), Senator Hill = co-hero. Now we had a bill and bi-partisan support.
  • CAFA was launched almost immediately and we all lent our strengths to support the bill: Connie Green worked on CAFA’s website and email and facilitated our group; Lori Fletcher reached out to organizations and helped interested parents to advocate; Brian inspired and advised us and he shared BJ’s tragic story at a hearing on BJ’s birthday; Caroline Chen, our Stanford Allergy Center liasion mobilized their members and she testified during two hearings; Leti Olivier represented CAFA and helped her son start his own advocacy organization; I managed the social media communications on Facebook and Twitter and was CAFA’s spokesperson.
  • Each pass in a committee or house was a tremendous victory yet it wasn’t always easy as the bill faced opposition from the teachers’ unions.
  • Fortunately, Heidi Hannaman, Senator Huff’s legislative aide, emerged as a masterful and brilliant political strategist and I am forever grateful for her friendship and leadership in negotiating and overcoming political obstacles.
  • I had the opportunity to meet and to cheer on some of the most wonderful advocates in California, for whom I have the greatest respect:
    • Cathy Owens, R.N., school nurse extraordinaire who testified and shared her experience of saving a life which led to California adopting a stock epi law in 2001
    • Dr. Louis and Joanne Giorgi, who bared their hearts and their tragic loss of their beautiful daughter Natalie in order to advocate for thousands of California school children
    • Dr. Travis Miller M.D., an allergist who testified at hearings, rallied his colleagues via his professional organizations, and gave media interviews.
    • Dr. Kari Nadeau, M.D., Ph.D., from Stanford Allergy Center, testified in support of SB 1266 by stating very clearly that anaphylaxis can kill in as little as 6 minutes and prompt administration of epinephrine is essential, safe, and life-saving.
  • Each hearing and floor vote was unanimously approved by legislators. Gov. Jerry Brown signed the bill on September 15, 2014. I am so grateful to Gov. Brown and every California legislator for their support of the bill.
  • And I was thrilled when my own school district adopted a stock epi policy as of October 16, 2014, which wrapped up one year of collaboration with one of the district nurses, Cecilia Vitug, RN.
#EpiPenBill Epilogue- Top 5Advocacy
Top 5 Advocacy Lessons Learned

Top 5 Advocacy Lessons Learned: 

  1. Learn from inspiring people (for me, that would be Brian): be bold, be persistent, dream big, and share your story.
  2. Talk with our legislators: they care about constituents’s concerns, share our ideas with them.
  3. Team up with other advocates, you can accomplish more together: it was an amazing experience to see national food allergy advocacy organizations, many out of state advocates and bloggers, and dozens of key California advocates, teachers, and lobbyists working behind the scenes unite to support SB 1266.
  4. Be an ambassador: be kind, be patient, be helpful, be generous with praise and thanks. Building relationships with others is the key to collaboration and cooperation.
  5. Advocacy is about starting a conversation: pass or fail, the bill gave us a reason to reach out to legislators, family, friends, and neighbors and share with them about life threatening allergies and anaphylaxis, which leads to more awareness in our communities.

I attended Kids With Food Allergies’ webinarHow Parents Can Change Laws to Protect Kids with Food Allergies” this week with panelists Charlotte Collins, Larissa Kaczaniuk, Caroline Moassessi and moderated by Lynda Mitchell. It’s an excellent webinar with information about stock epinephrine legislation and what needs to be done. with an exciting announcement of tools and new resources for advocates. I highly recommend watching this webinar if you are interested in making a difference in your community. My personal highlight was Caroline’s empowering account of how the Nevada advocates worked together to pass SB 453, Nevada’s stock epi law. I was also touched by her big picture observations about CAFA’s strategies to gain support for SB 1266 put into action via social media and communication. Thank you, Caroline, for cheering us on before, during, and after the legislative process.

 

The Epilogue: What’s Next?

I feel incredible joy and satisfaction regarding the outcome, teamwork, and collaboration over the past 9 months, but I also feel too tired to be myself for my loved ones. I can’t go on being both a statewide advocate and a food blogger. Blogging and sharing recipes with Nut Free Wok readers makes me happy. The recipes help our community and I know that I’m reaching an untapped audience, so it made the most sense to resign from my position in CAFA with a feeling of great satisfaction for the opportunity to play a role in legislative process that will save lives in California. Going full circle on this update, be sure to bookmark NBC News as I’m happy to tell you that I’ve been invited to post additional recipes and stories on NBC News and eagerly anticipate sharing new Allergy Aware Asian Fare recipes with Nut Free Wok readers. Thank you for reading and for your support. How should we celebrate? 🙂

Thank you to Gov. Brown and all the California legislators who voted in support of the epipen bill. Your votes will save lives.

Many thanks to Senator Huff, Senator Hill, Heidi, and all the advocates who worked tirelessly to advocate for SB 1266, the #epipenbill. 

 

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About Sharon Wong 206 Articles
Welcome to Nut Free Wok, a blog about Allergy Aware Asian Fare. I hope that you will find my food allergy mom experiences helpful and enjoyable to read as I write about recipes, cooking techniques, Asian ingredients, and food allergy related awareness and advocacy issues. My professional experiences include education, teaching, and a little bit of science and computers. Thank you for visiting! ~Sharon Wong, M.Ed.

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