When lifesaving pediatric treatment is unaffordable

Health

Twenty-some years ago in rural Boyd, Texas, a mom brought her newborn son to the hospital with what she thought was a heat rash. But the baby, Cole, would be diagnosed with Wiskott Aldrich syndrome, a life-threatening genetic disorder. The family, who had lost their long-time insurance after a payment did not clear their account, was told Cole needed a $250,000 bone marrow transplant. Half was needed up front in cash. They were given just one alternative if they could not pay: begin hospice care for their son.

The family did everything they could think of to raise the money, including hosting several fundraiser and begging friends and family. Over a couple of years, they were able to raise some funds and get those matched by a non-profit organization, but it was not enough. Cole’s mom,Yvonne Jackson recalled, “We called our Senators. We called everyone. I mean, we seriously called everyone that we knew at that time that we thought might be able to help us.”

But through long hours on the road as a long-haul trucker, father Dicky Joe Jackson was able made ends meet, and the operation was paid for (it failed, but further treatment was successful). Things seemed… normal, until a loudspeaker interrupted the family’s morning routine:

We need everyone in the house to come out with their hands up.

Dicky had turned to trafficking meth across the country in his truck to raise the money for the bone marrow transplant. He was sentenced to life in prison when Cole was 4-years-old.

The Jackson family’s difficult story was the subject of a recent episode of the Snap Judgment podcast and an April feature in Guernica Magazine.

Texas today has the highest number of uninsured children in the country, an unfortunate distinction it has held for most of the last decade. But when Cole was a baby fighting for his life, things were even worse for sick children in the United States. About 25 percent of kids were uninsured at the time, meaning that even routine childhood vaccinations and checkups had to be paid out of pocket. Chronic or severe childhood illnesses like asthma, cancer, and Wiskott Aldrich syndrome could ruin a family financially.

At his sentencing hearing, Dicky told the judge, “I’m not making no excuses for what I’ve done. But when my son got sick, we tried every government agency there is to come up with the money, and nobody wanted to help us. And I don’t expect you to help us now, neither.”
In 1997, a year after Dicky’s sentencing hearing, the bipartisan Children’s Health Insurance Program (CHIP) was signed into law. It focuses on low-income children, especially those in working families who don’t have access to job-based coverage, who earn too much to qualify for Medicaid but not enough to afford private insurance.

CHIP has been enormously successful, reducing the number of low-income uninsured children by more than 50 percent. Today, 93 percent of children in American have health insurance coverage, with approximately 58 percent getting their health coverage through CHIP or Medicaid.

Stories like Cole’s demonstrate the desperation families can feel when it comes to their children’s health, and just how few options there can be without the critical investment in the CHIP and the Affordable Care Act (ACA). The ACA included many life-saving consumer protections that prevent insurance companies from dropping or refusing patients with pre-existing conditions like Wiskott Aldrich syndrome. So babies like Cole no longer go without insurance during times of greatest need when the family can otherwise afford it.

But CHIP is not permanent and funding could dramatically end next year. As states are adjusting to a variety of health system changes, it is essential that Congress secure CHIP’s future this year so that states can operate their programs without interruption. Without an extension of funding beyond September 30, 2015, CHIP would be cut from $21.1 billion back to $0 by FY 2017.

Inaction by Congress would mean a total reversal of fortune for the millions of children who use CHIP, and more families desperate to care for their uninsured sons and daughters.

Cole credits his father with saving his life, and his father, still in prison, insists, “I’ll tell you, if I’m going to bring a child into this world then it’s my duty to make sure he’s got the best chance there is. And if he’s sick like mine was I’m a sorry [man] if I wouldn’t give my life to save his.”

 


 

This blog was published by First Focus, a bipartisan advocacy organization dedicated to making children and families the priority in federal policy and budget decisions.

Learn more about our work on child health here. Become involved today by joining our network or making a donation.

Follow the author on Twitter here, and join the conversation on social media with the hashtag #InvestInKids.