What are you doing with your Summer?

Normally, when people ask me this question I have fabulous answers like spending a lot of time poolside, enjoying lazy summer weekends with my kids, catching fireflies and enjoying the TV coverage of Wimbledon. Although this summer, I have tried to carve out some time to spend with my two boys, I have been a bit preoccupied with the action in Congress to reform our health care system. Action in Congress has been fast and furious and it has taken Herculean efforts to keep up.

Over the past several weeks, I have spent significant time reading large draft health care bills, attending multiple Congressional hearings, meeting with Congressional staff and participating in a radio media tour highlighting children’s health care stories. All this to make sure that Congress properly focuses on children in their efforts to reform health care. My seven year old is still in disbelief that I actually read the 852 page House health reform bill in its entirety. My three year old volunteered to help so I handed him a huge stack of legislation. After some snack stains and a few lost pages he handed it back.

But, I am not the only one forgoing fun summer activities for a good cause. A little boy I met a couple weeks ago gave up part of his summer to come to DC and share his story with Congress. His story illustrates what a focus on children means not in the abstract, but in real life. Lionel is an 11-year old boy from New York City. As if Lionel’s travelling all the way to DC to tell his story is not amazing enough, he just had a kidney transplant in November. His story is not only heartwarming – his brother gave him a kidney -- but also shows how important comprehensive and affordable health insurance coverage and real access to services can be to any family. Lionel was born with renal disease and had to go on dialysis. On dialysis, he was not able to do many of the things other kids could do easily, like play sports.

Lionel is now able to play sports and have a wonderful quality of life with his family (and beat me at the animal guessing game 10 times!). Due to the health care services Lionel was able to access; he will need less health care in the long-term and will be able to fully participate in life. Lionel’s mom says that without the children’s hospital where he was treated and Medicaid, which allowed Lionel to have access to lifesaving treatment, he would not be here today.

If I could wave my magic wand and get Congress to listen to little ol’ me this is what I would request:

* Ensure that every child has health insurance coverage. We can do this by automatically enrolling every child at birth, through age 21, in an insurance program since children cannot enroll themselves and provide default coverage to prevent gaps in care due to loss of employer-sponsored coverage or moves to another state.

* Ensure that coverage equals access. An insurance card does not guarantee that you will be able to access appropriate pediatric providers to get the services your children need when they need them. We need to address severe shortages in the pediatric workforce, specifically doctors who provide specialty services for children.

* Ensure that low-income children retain the comprehensive coverage and cost sharing protections they have under Medicaid and the Children’s Health Insurance Program today. With all of the new opportunities in health reform, we cannot forget about the most vulnerable children in our country.

I can report that there have been promising signs on all of these fronts. Two draft bills released so far – one from the House and one from the Senate – do address many of the areas that are important for children. In a recent House committee hearing on health reform, a handful of representatives mentioned the importance of considering children’s unique health care needs. These are promising signs, but we need to keep up our efforts to share our stories on what children need in health reform. Learning Lionel’s story and spending a couple days with him demonstrated in a real way why I do what I do every day and why we all need to pay attention and participate in the health care reform debate. Share your story at www.speaknowforkids.org