Today President Obama held a press conference about a number of new regulations being issued by his Administration that he says constitute a new “Patients’ Bill of Rights”.  Many of these new regulations have important ramifications for children who receive coverage through the private market and in particular, children with special health care needs. 

In another life, I worked with both children and adults with special health care needs and I have seen firsthand how much agony and perseverance parents and family members must have to make sure their child or relative gets the care they need.  These new regulations have the potential to mitigate some of what these families experience on a daily basis. 

A good example of the impact these new regulations could have on real families was articulated by the Restemayer family, who were at the White House today for President Obama’s press conference.  The Restemayer’s daughter, Allison, was born with a rare genetic disorder that doctors had told her parents would result in her being significantly delayed and that she was likely to die by the age of 10.  The good news is that Allison has defied those predictions and is now 9 years old and attending school and doing mostly age-appropriate work. 

This only has been possible because years ago — shortly after Allison’s diagnosis at the age of two — a new drug was approved that has helped her tremendously. Since that time, while the Restemayer’s have been hopeful, the family also has constantly been on edge with the fear of losing the health coverage they had through Mr. Restemayer job and not being able to find new coverage because of Allison’s pre-existing condition. More immediately, the family is facing the prospect that at some point Allison’s care would exceed the $2 million lifetime limit on Allison’s insurance plan.  To date, Allison has used $1.7 million of the $2 million her insurance plan allows and her parents are hopeful that the new Patients’ Bill of Rights will provide the Restemayers the security of knowing that Allison will be able to stay covered and get the care that she needs to continue moving forward on the path she has been on for the last 9 years. 

To see a You Tube video with Allison and her sister Ashley talking about her disorder, please go here.  To learn more about Family Voices, the organization that has supported the Restemayers and many other families as they navigate the ins and outs of the health care system for their children, go here. In the days ahead, we’ll be doing a nitty-gritty analysis of the new regulations aimed at eliminating lifetime limits and banning the exclusion of coverage for children’s pre-existing conditions.  For now, though, the Restemayers’ story is a powerful reminder of why we all need to be rolling up our sleeves and making sure that health care reform works as intended for families and children.