Hester Clark permitted HCAN to share with you the powerful story of her unforgettable fight 25 years ago with a health insurance company that denied her baby the care he desperately needed — and how the Affordable Care Act will help us all avoid similar risks today.
Each year on May 1, I write a letter to try, in a very small way, to convey how grateful I am that my son Jonathan is celebrating another anniversary of his liver transplant.
This year, May 1, 2012, is the 25th anniversary. Jonathan is all grown up now, a healthy, independent, college graduate, on his way to a great career.
I made a promise in my heart to the donor mother that I have never met. I promised myself that I would honor her baby by doing everything in my power to raise Jonathan to be a good man.
I have done that. He is a good man.
Now, I have to find a new way to honor the memory of Jonathan’s 5-month-old donor. I choose to honor our donor family, by working to make sure “ObamaCare” is available for all Americans.
This is not political — it is personal.
The Affordable Care Act is the lifeline for Jonathan’s future. It ensures that Jonathan will always have health care coverage. Forever. Forever.
You have to understand our story in order to understand why this is so important.
When Jonathan was born, we were 25-year-old parents in Fresno California. I was a graduate student and his father was beginning a new career. We were covered by health insurance, but the insurance did not cover liver transplants — it was considered an experimental treatment.
The prognosis was that Jonathan would die before his first birthday. The only treatment was transplantation — which cost approximately $350,000 (1986 dollars). Our family income was under $25,000. Without insurance coverage, Jonathan could not be placed on the transplant waiting list.
What happens when you don’t have health insurance?
You are taken into a “financial evaluation room,” where the social worker explains that although your child meets the medical criteria for transplantation, he is not eligible to receive the transplant because we lacked adequate insurance.
We were told to take Jonathan home, and continue to work with our local physicians. Take him home to die.
We traveled across the country — Dallas, Los Angeles, Pittsburgh and Omaha — each one walked us through the same procedure — without the ability to pay, Jonathan was not eligible to be placed on the waiting list. Take him home.
We had one year. One year to convince the world that our baby was worth saving. One year to demonstrate that we met the “financial eligibility criteria.”
We did what every desperate family does — we begged.
Americans came to our rescue. Donations poured in from every corner of the country — from pennies given by school children to thousands of dollars from celebrities. We continued to beg. “Please help save our baby.” Finally, the insurance company overturned their decision and provided the insurance coverage needed.
And a generous family in Texas made the decision to give the gift of life.
Jonathan was saved.
Now, 25 years later, although my financial situation has significantly improved, I cannot stop begging. Today, I beg for the thousands of families who do not have health insurance. I beg for those like Jonathan who have pre-existing conditions. I beg, that never again, will a patient be denied care simply because they cannot pay.
Just as our donor family showed compassion, faith, selflessness and care for the greater good, I ask you to carry forth that same spirit and compassion.
Care for the greater good. Care enough so that no one is ever sent home to die.
I beg you. Please support the Affordable Care Act.
Vote as if your life depends on it. Because it does.
This letter is cross-posted here.