Paying it Forward
March 13, 2020
I grew up in Mexico in a low-income family. At birth, doctors diagnosed me with hemophilia, a rare bleeding disorder that prevents blood from clotting; cuts or trauma that would otherwise be minor can be fatal to a person with hemophilia. While there were treatments available, during my childhood they were not widely available in Mexico. I did not have access to them, and that made life very difficult. I could not play with friends, and I spent many months in the hospital treating bleeds.
At age 12, I woke up with pain on the right side of my abdomen. My parents took me to the ER, where doctors informed me that my appendix had burst. They performed emergency surgery, but unfortunately they did not have the medicine I needed as a hemophiliac. After surgery, I woke up in pain and with a deformed stomach, both due to the uncontrollable internal bleedings that had occurred during surgery. In a panic, my parents begged and pushed the hospital to do something to stop the bleeding. The doctors had no choice but to rush me in an ambulance to the regional hospital 7 hours away, in the hopes they had medicine I needed.
When I arrived at the regional hospital, I underwent surgery to be stabilized. But during the operation, I bled so severely that I was declared dead twice. The doctors informed my parents to make funeral arrangements; I had no hope of survival. After several attempts, however, the doctors miraculously brought me back to life.
I spent the next six months recovering from the surgeries, without the ability to eat or drink water, and in constant pain. I then had to learn to eat and walk again after such an extended stay in bed. It was hell on earth. What carried me through it was the love of my parents. Their love prevented me from giving up. It enabled me to heal.
After recovery, I migrated with my family to the United States for better healthcare. My parents arrived in California with very little money and no education beyond the fifth grade, and I knew almost no English. Yet four years later, I had earned admission to MIT, and by age 28, I had completed two bachelor’s degrees and three master’s degrees (four from MIT and one from Georgetown).
My experience taught me how important having access to medicines is, and I have made it my life’s mission to provide vulnerable people in the world with access to the care they need. In the service of that mission, I have run 12 free healthcare clinics for an underserved-population, managed the global production and distribution of medicines to 78 countries at biotech firms, and helped to develop and implement the Affordable Care Act as a policy analyst. Now, I lead global distribution at gene therapy company Ultragenyx, developing medicines for treating rare disease patients, including hemophilia. I also served as a board member at Save One Life, a non-profit providing medicine and scholarships to people in the developing world with bleeding disorders. I want to provide others with the treatments I did not have.
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