Dear senators and representatives of the 115th United States Congress,
The media tell me that you will once again be taking up legislation to repeal and replace Obamacare. If you do this, please make sure that whatever new law you come up with keeps three key features of the Affordable Care Act that I need to keep my daughter, Wendy, alive.
Wendy was born healthy and perfect. At the age of 3, she was infected by bacteria called Escherichia coli. Most of these bacteria are harmless, but some types can cause serious infections. In Wendy’s case, the infection turned into something called hemolytic uremic syndrome that caused irreversible damage to her body. Her kidneys failed, requiring an emergency kidney transplant. Her damaged pancreas could no longer make insulin, leaving her with type 1 diabetes. She needed to have parts of her intestines removed, and still suffers from seizures.
Wendy spent more than 200 days as an inpatient at Massachusetts General Hospital. She was there for so long that she wrote a story about living at Mass. General that was turned into an animated video. It is shown to sick and scared kids when they come into the hospital’s emergency department.
This summer, Wendy will be representing the United States at the World Transplant Games that are being held in Malaga, Spain. It’s like the Olympics for people with solid organ transplants. She will be competing in both swim and track and field events for Team USA and, of course, hopes to win the gold.
I’m proud to be Wendy’s mother. She’s tough. She’s a fighter. She gives back to her community. In short, she’s everything we want an American to be.
That said, it requires a lot to keep her alive. She takes six medications, in different combinations, three times a day, to keep her body from rejecting her kidney and to manage her high blood pressure. She uses an insulin pump and a continuous glucose monitor to control her diabetes. The kind of infection that might put you or me under the weather for a day or two hits Wendy hard; she needs to go to the hospital as soon as she gets a fever because she’s at greater risk for widespread infection.
Wendy is a real beneficiary of the Affordable Care Act. Many of you want to discard the entire Obamacare platform and replace it with something new. Before you do that, I wanted to turn your attention to three features of the act that are vitally important to families like mine, families that have worked long and hard, that have insurance, and that pay all our premiums and out-of-pocket expenses.
The first one is the provision that lets kids stay on their parents’ insurance until they are 26. That provides a safety net that allows everyone’s kids to go to
college if they want to, find a career path, and remain covered while they are figuring out all of that. I could be wrong, but I think that most parents like this piece of the Affordable Care Act. We want our kids to be safe and healthy while they’re working to become responsible citizens, because responsible citizens pay taxes, and that’s what keeps the government working.
The second provision is an important one to families like mine with a kid who has a chronic illness. It says that children under 19 years of age can no longer be classified as having “preexisting conditions.” That lets me keep my insurance, or change jobs and get new insurance, without having to worry whether or not anyone will cover me because my kid happens to need ongoing, and sometimes expensive, medical care. This is the one that most causes me to lose sleep. If it vanishes, it will be harder and harder for my family, and others like mine, to get health insurance, and that’s something we can never go without.
The third piece is removing the lifetime insurance cap that companies are willing to pay for. Here’s the thing: Through no fault of her own, Wendy started needing expensive medical treatments very early in her life. She will hit that lifetime cap long before any of her peers. Then where will she be? How could she pay for the constant medical care she will need throughout her life?
As a parent of a chronically ill child, I’m constantly worried — worried that she will be sick, worried that I won’t be able to take care of all of her needs, worried that I will have to get creative with finances so I can pay for her medications and medical supplies that aren’t covered by insurance. I don’t want to worry about health insurance, too. I just want to know that I can keep it. I’m not asking for a handout. My husband and I work hard, and we both know that insurance isn’t cheap; we’re fine paying for it.
Please keep these provisions in whatever you’re going to call the new or repackaged replacement for the Affordable Care Act. You’re elected to protect the citizens of the United States, including the vulnerable ones, and there isn’t much more vulnerable individual in this world than a chronically ill child.
When it comes time to vote, please be on the side of chronically ill children and their families.
Darcy Daniels is a writer, history professor, and co-chair of the Family Advisory Council at Massachusetts General Hospital for Children. She blogs about caring for kids with chronic illness for The Mighty and on her own blog, Brave Fragile Warriors, where an earlier version of this article appeared.