This post was authored by Ed Greissing, Vice President, US Corporate Affairs, Global Services
The PhRMA Annual Meeting was held in Washington, D.C. this year and it met the expectations of the attendees as well as those around the world following by webcast. The three days were filled with:
– committee meetings,
– visits to Congress,
– listening to and talking with patients, government officials and other stakeholders about the ACA and clinical trials, and
– panels discussing the promise of science, the importance of future innovation, improving health, and how trade and economic policy impact the industry.
The benefits of scientific discovery and development were highlighted throughout the meeting, but never more clearly articulated or more powerful than when Suleika Jaouad, a 25 year old Acute Myeloid Leukemia patient, the survivor of a rare blood disorder called Myelodysplastic Syndrome told us her story. Her time with us on Thursday morning was spent telling us about the journey of a young adult cancer patient who overnight had her dreams wiped out and a very uncertain future in front of her. She shared the good, bad, desperate and inspirational emotions and experiences to a room filled with other patient advocates, the media, industry leaders and government officials.
Suleika graduated from Princeton in 2010 and her dream was to become a war correspondent and report on the revolutions taking place in the Middle East. Six months later she was diagnosed with cancer and her world soon became a hospital bed and an IV pole she nicknamed the “Leaning Tower of Chemo.” Instead of reporting on revolutions in the Middle East she found herself telling the world, from a hospital bed at Memorial Sloan- Kettering, of the “ revolution taking place inside of her.” These blogs and videos were part of her series called “Life, Interrupted.”
The misdiagnosis in Paris, her courageous and inspirational journey that followed, and a disease that drafted her into a club that “nobody wants to join,” allowed her to become a voice for the unrepresented patient group of young adults. When you are young or old, we have answers for you, but when you move to adulthood frequently there are fewer medical interventions.
In her case she found a clinical trial, she considered her last chance to live, and survived a bone marrow transplant (from her brother Adam) to be with us and teach us how to approach life and live every day. Beyond the hope and courage required to battle cancer, her journey serves as a roadmap for others to follow and learn the difficult lesson of how to tackle life’s challenging moments with integrity, compassion and a real sense of humor. Toward the end of her talk she described how the transplant changed her blood cells’ DNA and her tolerance for peanuts as today she no longer suffers from a peanut allergy. Presenting the room with an enormous smile and giggle she told us she is hoping to become a connoisseur of peanut butter sandwiches.
So let me leave you with a few of her words that I hope will inspire each of us to do more and never take a moment in any day for granted, never assume you will be here tomorrow and above all live life to the fullest while loving and caring for those people in your life that matter. When looking at the glass of water look at the glass as being full because it is not about the number of years in your life but the life you live in those years.
We all have “life, interrupted” moments, whether you’re dealing with a health crisis, the loss of a loved one, unemployment or a bad break up. Mine just happened to be cancer. I’ve learned that it’s not the interruption that matters, but how you cope with it, learn from it and grow beyond it. Suleika Jaouad