Protect the sick children

Personal politics aside, I felt a lump forming in my throat as I read the headlines last week describing how Republicans in both chambers of Congress took the first major step toward repealing President Obama’s signature Affordable Care Act (ACA), a.k.a. Obamacare.

I knew the lump was because of my daughter Eliza. Three years ago, in January 2014 my husband and I made one of the toughest decisions of our lives as we chose to put the life of our then three-month-old daughter in the hands of a pediatric cardiothoracic surgeon in an operating room at Children’s Hospital Los Angeles.

Eliza was born with a large VSD, a hole in the wall separating the two lower chambers of the heart. It is considered complex congenital heart defect which often needs to be repaired with surgery. In Eliza’s case, she needed open heart surgery as an infant—with all the bells and whistles included in an adult open heart surgery such as splitting apart her breastbone, connecting her to a heart-lung bypass machine, stopping her heart for the surgery, sewing the hole closed and then restarting her heart, taking her off by-pass and finally sewing her back up.

Thankfully, my husband’s job provided very good health insurance benefits; however, several of the key provisions of the Affordable Care Act eased the burden on our family and ensured that we could get the best care possible for our daughter.

After our experience, I feel solidarity with families who have kids born with serious birth defects, kids with cancer, and kids with other serious medical conditions, especially those who are now at risk of being without insurance or the full support and protections we had.

For the sake of these families, I ask Republicans in Congress and the President-elect to stop moving so quickly to scrap the ACA without putting forward an alternative plan that immediately covers pre-existing conditions. I am heartbroken thinking of how other families with very sick kids will cope without continuity of coverage. If Congress isn’t more prudent, thousands of very sick kids could fall through the cracks just when they need surgery and advanced care—even if it only takes a few months for a Republican plan to be voted on and then implemented. That’s unconscionable.

Right now there are thousands of kids in the hospital or being born in the USA with life-threatening and serious health conditions who need continuity of care.

Here are some statistics relating to sick kids in the USA:

500,000 preterm babies are born each year in the USA. Many need advanced NICU care. 

-Birth defects affect one in every 33 babies (about 3% of all babies) born in the United States each year.

-Congenital heart defects affect about 40,000 births per year in the United States and about 25% of babies with a CHD have a critical CHD which generally requires surgery or other procedures in their first year of life.

Each year 15,780 children between the ages of birth and 19 years of age are diagnosed with cancer in the USA.

-There are currently about 15,000 kids age 18 and under living with cystic fibrosis in the United States.

About 208,000 Americans under age 20 are estimated to have diagnosed diabetes. 

That is just a sampling of the serious conditions facing thousands of kids in the USA ever day. If the ACA is repealed without a replacement or a stop-gap in place, what happen to the very sick kids with whose parents are among the 20 million Americans who currently belong to ACA Marketplace plans? Will the end of Obamacare destablize other health care plans or benefits? Will hundreds of families face the worst case scenerio of being denied care or being hit with bills for tens of thousands of dollars? Those outcomes would be unacceptable.

As of January 2014, the ACA also assured that individuals enrolled in Marketplace insurance plans offered a set of essential health benefits, including many that we used heavily during my daughter Eliza’s first six months of life. It insures coverage for hospitalizations, emergency services, pregnancy, maternity, and newborn care, pediatric care, laboratory services and prescription drugs. These are all essential coverage areas for the replacement plan as well.

Our elected leaders need act NOW to develop and put in place a plan to ensure continued coverage to kids and adults with pre-existing medical conditions. In the life and care of a seriously ill patient, weeks and months make a huge difference.

In our lives just three months made a world of difference. Prior to surgery, my daughter became exhausted every time she drank milk and she was in the 5th percentile for height and weight. And she was at risk for life-long lung damage and growth and developmental delays. Today Eliza is 100 percent healthy—she’s a talkative and spunky 3 year-old in the 85th percentile for height with no restrictions on her activity level and no cognitive or behavioral delays.

Amid the inflated rhetoric and hasty actions to undo Obamacare, ALL of our elected leaders have a serious responsibility to make sure that their political agendas don’t cause very sick kids to fall through the cracks.

Please join me in calling our elected officials to ask that members of Congress and the President-elect to do the right thing. We need to speak up for those who are too sick and too young to call for themselves. Here’s a link with contact information for Congress.