The Affordable Care Act: I clinically died twice

Guadalupe Mota told his story at a meeting of nearly 900 members of 32 of the churches, mosques, and synagogues in the Greater Boston Interfaith Organization on Feb. 2.  

     I am here because the Affordable Care Act (ACA) saved my life.  I was born and raised in Zacatecas, Mexico. When I was learning to walk as a child, like many kids, I would fall and bump my head. But in my case, when that happened, I’d start to bleed uncontrollably.  My parents took me to the doctor, and I was diagnosed hemophilia.  Hemophilia is a hereditary disorder that prevents a person’s blood from clotting. That means both internal and external bleeding can easily become life threatening.

     At age 13, I had a severe internal bleeding that put me in the hospital.  The doctors could not control the bleeding because the medicines they needed had run out. Mexico’s healthcare system was, and still is, too poor and broken to afford the medicines patients like me needed. During that stay in the hospital, I bled so severely that I clinically died twice. Miraculously, I was brought back to life. It is a miracle I am alive today. In many countries like Mexico, hemophiliacs die in their childhood or teenage years because there is no medicine available.

     My parents decided they couldn’t allow this to happen again. Holding dual citizenship in the United States, they decided to move our family to California. They left behind their jobs, our home, and many of our family so I could have access to the medicines I needed. Once in the United States, I received insurance through the state, then through MIT, when I came here for college. After that, I was covered by my employers. As a working adult, my pre-existing condition prevented me from getting coverage for myself.

     Fast forward to January of 2016. I graduated from business school without a job--and without insurance. I once again felt the desperation I had in Mexico. If this had been 2008, my pre-existing condition would have made it impossible to buy insurance. By this time, though,  the ACA was in place. It allowed me to purchase insurance through the Connector at a reasonable price. For the months it took me to find a job, it was my safety net.

     That safety net saved my life. Two months after graduating, I again ended up in a Boston hospital with internal bleeding.  The medicine provided by the hospital stopped my bleeding. But without my insurance, there’s no way I could have afforded those medicines. My condition could have killed me, just as it almost did in Mexico. But it didn’t, because of the Affordable Care Act. I am here because the Affordable Care Act saved my life.

Share this, and your own story, with your U.S. Senators in Alaska, Arizona, Iowa, Maine, Nevada, Ohio, Pennsylvania, Tennessee, West Virginia and elsewhere.  Get their name and phone number here.  Read another ACA story. 

So he'd take a trip to New Zealand: Patient advocate Jonathan Wadleigh

Born with hemophilia, Jonathan Wadleigh spent part of his childhood in a wheelchair or on crutches as internal bleeding turned his young joints arthritic. He took his first steps towards years of activism by hobbling door to door on crutches to register voters.

As an adult, in 1983, Jonathan learned that some blood products he had used to help his blood clot normally were contaminated, infecting him with HIV and hepatitis C. He focused his activism on those who hemophilia whose lives would be shortened by AIDS. He was the lead plaintiff in a class action lawsuit that produced a $670 million settlement from four drug companies that made the blood products. In the late 1980s, he helped found, and served as first president of, the Committee of Ten Thousand, an advocacy group mainly for the estimated 10,000 people with hemophilia who were infected with HIV by the blood products used to treat them.

Jonathan died of liver cancer on June 4 in Boston. A brother, Robin, died of AIDS in 1985 after being infected through blood products.

Once he said to his half-sister Anne, "You know, if I didn't take my medicine, I'd be dead in three days." But, said Anne, "He lived that way. There were times when he was told he might die soon, so he'd take a trip to New Zealand. That was his response to imminent death."

He also became a mentor to others who faced death through infection by blood products. "He was a great person to empower people to find their own path. Jonathan would say, 'These are your goals and these are your skills. You have to be socially responsible, but follow your dreams,'" his wife said.

Advice: Live as actively as Jonathan.

Read another story on a blood transfusion.

Thanks to Bryan Marquard for the source article in the Boston Globe of June 14.