'A Patient Voice' Community

I think one of the hardest things is reading comments from parents. Michelle contacted the National Health Council last year about her 12-year-old with cerebral palsy and epilepsy. She wrote, "Pre-existing condition is a term that always haunts me."

According to a recent report, some 25 million children and teens — often those with chronic conditions — had inadequate or no health insurance at all in 2007. It makes me want to cry to know that those most in need of help are unable to get it.

Come September 23, insurance companies will no longer be allowed to exclude children under age 19 with a pre-existing condition from receiving coverage. If you are a parent of a child with a chronic condition, contact your insurance company. If you don't have insurance, there's a state-by-state web page with information on Pre-Existing Condition Insurance Plans -- http://www.healthcare.gov/law/provisions/preexisting/index.html. It might help you find a policy.

Also, many patient advocacy organizations provide useful information specific to your condition or the condition of your child. For example the National Psoriasis Foundation has a page on accessing health care: http://www.psoriasis.org/netcommunity/access_health_care. A list of other patient organizations can be found by going to http://www.nationalhealthcouncil.org/pages/member-roster.php.

Removing exclusions for children with chronic conditions is only a baby step (no pun intended), but we have to start somewhere in our fight to make sure all people have access to the care they need.

Myrl