Volunteer Report: Lisa Deck attends Global Forum on CVD

Last month, my advocacy took me to all new levels. I was asked to represent the American Heart Association at a Global Forum in Tokyo, Japan. The Forum was hosted by the Health and Global Policy Institute, a non-profit health policy think tank based in Tokyo. The American Heart Association was invited to speak on a panel about patient involvement in cardiovascular disease policy for sustainable healthcare systems. I was asked to share my experience infusing the patient experience in discussions about health policy.

My personal experience with the American Heart Association started in 2001 when I was asked to share my story with legislators in Washington, DC. Over the past eighteen years, I have had the privilege to share my personal story and affect policy change with legislators on the local, state and national level. I have met with local and state representatives in person in Massachusetts and Rhode Island. I have lobbied on Capitol Hill in DC almost twenty times to ask for increased funding for the NIH/CDC, newborn screenings, the STOP Stroke act and other policy initiatives that support heart and stroke patients. I’ve testified at the Rhode Island State House, attended a White House Cardiovascular Summit and participated a tweet chat in The White House. I have also recruited and instructed other survivors and caregivers to be a part of our advocacy initiatives…aka Grassroots Advocacy.

Surrounded by some of the top minds in Japan, I was instantly welcomed as an expert and highly regarded as a patient and representative of the American Heart Association. The morning session was a closed workshop with about thirty participants. The purpose of this session was to review Japan’s Basic Act on Cardiovascular Disease (CVD) Measures. Attendees were asked to present and share best practices to ensure patient engagement for the co-creation of the Act.

I loved that most of the attendees there had heard of my illness, Moyamoya Disease, which originated in Japan. This isn’t the case in the United States, so it reminded me that I have work to do. I also loved the immediate connection I had to other stroke survivors in the room, even when we didn’t speak the same language.

The Non-Communicable Disease Global Forum for Civil Society took place in the afternoon with a roundtable of eight speakers and approximately 100 attendees. The roundtable speakers presented ideas on how to develop a patient-centered healthcare system looking at the various stages of prevention. I presented the AHA’s most successful promotion plan, Go Red for Women. As a spokeswoman, it was my honor to talk about some of the activities that I personally took part in. I also shared that Go Red for Women has an international program that is currently active in 50 countries. Many participants at this event thought this American Heart Association program would be extremely helpful in Japan. Awareness is translated to “enlightenment” in Japanese. I thought that was a compelling way to think of spreading knowledge and information about cardiovascular disease.

Traveling fifteen hours to one of the largest cities in the world was a bit overwhelming yet exhilarating. I was thrilled to grow my advocacy to an international audience and share my own personal experience with others. Being a part of a team that is formulating a legislative Act for the country of Japan was such an honor. I can’t wait for what’s next!