I have been a patient for decades, but only in the last eight years have I become a patient representative. I started my journey by researching my conditions, finding nonprofits that support my diagnoses and connecting with other patients who share similar experiences. Early on, I looked up to those who stepped out and shared their stories at Congressional offices, in media interviews, on social media, by testifying in committees, and more. I could not imagine at the time how one small decision would change the trajectory of my patient journey.
My Chance to Go Beyond Social Media
I was very happy just using social media to share my story and to support others. When the Alliance for Headache Disorders Advocacy (AHDA) was forced to move its advocacy efforts online in 2021, I decided it was my chance to go beyond using social media and start doing more. I didn’t feel I was ready, but I believed the AHDA when they said they would train me – and they did! I was nervous for my first meeting, but by the end of the day I realized using my voice to represent patients like me was something I could do.
The Importance of the Patient Voice
Over the years, I’ve learned that healthcare organizations and decision makers at all levels of clinical research need the patient voice in clinical trials. Without it, the trials may be ineffective. Recently, I was accepted as a Merit Reviewer for an advisory panel at the Patient Centered Outcomes Research Institute (PCORI). PCORI includes the patient/caregiver voice in everything that they do, from forming advisory panels to reviewing research applications.
This spring, I was appointed to the planning committee as the patient voice for the National Academies of Sciences, Engineering, and Medicine’s public workshop on Treatment and Management of Chronic Pain. The workshop featured panel discussions on chronic pain assessment and treatment and included patients providing insight on their experience. I joined clinicians and researchers from across the country on a panel advising the Social Security Administration (SSA) on chronic pain and navigating the SSA disability system.
June is Migraine and Headache Awareness Month
June is Migraine and Headache Awareness Month. Over the past year, a committee of volunteers (including myself) has been planning Headache on the Hill, a visual installation for AHDA featuring 30,000 flags that will line the National Mall from June 1-14, 2025. During this time there will be press conferences to bring attention to Congress and the public about the impact of headache disease. If you can’t make it in person, be sure to follow AHDA on social media for pictures and videos.
The transition from patient to patient representative has been an exciting journey. As I told the SSA during my presentation, “I am a patient first, but advocacy has given me purpose again.” The power of the patient story makes a huge difference. Without the patient voice, we can’t see the full picture and impact of a disease. “If stats were enough,” says my good friend, “then we would already have the awareness and funding we need.”