The Wisconsin Policy Research Institute

Following is an open letter to White House Senior Advisor David Axelrod and his wife Susan. Mr. Axelrod has been a strong advocate of President Obama’s plan to implement a government run health care plan paid for with federal tax dollars.

The Axelrods were recently featured in a Newsweek article discussing their battle to find an acceptable treatment for their daughter’s chronic condition.

Dear Mr. & Mrs. Axelrod,

Thank you for sharing the story of your family’s struggle with Epilepsy in the April 20th edition of Newsweek, “The Mystery of Epilepsy. Why We Must Find a Cure,” and for dedicating time and energy to educating the public and public policy makers about this very serious and dangerous condition.

Like most people, I was ignorant of the fact that epilepsy is as common as breast cancer; the mortality rate for people with epilepsy is 2-3 times higher; 50,000 Americans die each year from seizures and related causes like drowning and other accidents, and that one-third of all epilepsy patients are unable to control their seizures with medication. And finally, I had no idea that recurrent seizures can cause serious and irreversible damage to the brain.

Nine months ago, epilepsy wasn’t on our radar screen. All that changed in January when our daughter had her first seizure. Unable to speak, she stood before us with her head cocked to one side and her gaze fixed upward in the opposite direction. It was the longest five minutes of our lives.

Nine months, nine more seizures, one hospitalization, three emergency room visits, four EEGs, two MRI’s, two CT scans, three anti- antiepileptic drugs and countless blood tests later, we are still looking for answers.

It’s reassuring to know that people with epilepsy have an advocate in the White House, and I share your resolve that:

"it is no longer OK to sit back and accept that answers cannot not be found.”

But I don’t believe increasing public awareness and funding for epilepsy research will improve the quality of life for either one of our daughters if the federal government takes over our health care system.

Perhaps it’s wrong for me to impose, after everything you’re family has endured, but imagine for a moment that you are back at the beginning of your quest to find a suitable treatment for your daughter’s seizures. Only this time decisions about which specialists to consult and which tests, medications, and procedures to pursue are no longer made by you in consultation with the doctor of your choice.

Imagine that those decisions are made by a government entity whose number one goal is to move as many people through the system as efficiently as possible without spending any more money than absolutely necessary. Imagine waiting months for the next available specialist to see your daughter, as more and more seizures afflict her, all the time wondering if promising new treatments will ever be made available when government boards decide that the status quo costs less?

Imagine your daughter remains among the one- third of epilepsy patients for whom medication is ineffective, and that at present surgery does not appear to be a viable option.

How will you respond when you’re told that additional post-seizure testing will not be provided, and that your best course of action is to closely supervise your child and provide her with a helmet? How can we possibly improve treatment options or make progress toward a cure if patients are no longer evaluated and monitored immediately following their seizures?

Perhaps the next pill we try will control our daughter’s seizures without changing her bright and wonderful personality. Maybe the next test will indicate a surgical solution, or a chemical in-balance that’s more easily treated.

Maybe we’ll spend the rest of our lives searching for answers, never achieving control over the seizures, living with that quiet but constant fear.

As her parents, we will have to accept life on life’s terms and do the best we can to keep our daughter safe, happy and healthy.

But politicians who try to put government between parents like me and finding the best care possible for our children should expect to answer for it next November.

-September 21, 2009

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