CF Foundation: Too Tepid on Healthcare Reform?

Centuries ago, Shakespeare railed against pronouncements that were "full of sound and fury, signifying nothing." In that regard, here is what the Cystic Fibrosis Foundation is asking CF families like mine to tell their federal lawmakers as they consider long-overdue reforms to our dysfunctional heathcare system:

As a constituent and someone with a personal connection to cystic fibrosis, I write to ask that you consider the unique needs of people with cystic fibrosis as health care reform becomes a priority in Washington.

Cystic fibrosis affects the lungs and digestive systems, causing a build up of thick, sticky mucus. Thanks to advances in research and new treatments, we have made great strides in our fight against this life-threatening disease. The median age of survival has doubled in the last two decades to 37 years of age today.

While research and advanced therapies have made significant progress in improving the quality and length of life, people with cystic fibrosis depend on specialized care to stay alive and healthy. Cystic fibrosis is a costly disease and people living with it need timely access to high quality care. The disease typically costs around $42,000 per person per year; nine to thirteen times higher than the average health care consumer.

As a part of a reformed health care system, people with cystic fibrosis require a coordinated system of care that prevents gaps in treatment and enhances quality of care. A reformed system must also reduce the burdens of out-of-pocket costs and catastrophic medical expenses that currently prevent access to care for as many as one in four people with cystic fibrosis.
As health care reform takes center stage, I ask that you work to ensure that people with cystic fibrosis get the care they need to help them live longer and healthier lives.

This amounts to a variation on the same old public policy theme: Dear Legislator, please consider my narrow special interest as you consider the bill before you.

What if the CF Foundation asked people like me to write THIS letter:

Dear Senator:

I am writing to share my experiences as a parent of a child with cystic fibrosis because they have so thoroughly demonstrated to me the importance of assuing access to health care for all Americans.

My family has the good fortune to be fully insured when it comes to health care. We see very little of the $42,000 a year that the CF Foundation estimates that one patient's treatment costs.

The CF Foundation also points out that this $42,000 a year buys an ever-growing median survival age for CF patients that is now beyond 37 years, twice what it was 20 years ago. My wife and I earnestly hope our daughter will outlive us, but we're worried.

We are not worried about the ability of CF research to continue to make remarkable advances in drug therapy and other treatments. We're worried about things like Medicaid.

Our daughter's excellent CF care center turns away no patients. And yet the reimbursement the hospital receives from Medicaid, intended to cover the cost of caring for indigent patients, is ridiculously inadequate. As the result, our CF Center does not have enough money available to make our daughter's health care, and that of the other CF patients who use our center, as good as it can and should be.

Everywhere we look in the healthcare system, we see evidence that the current system, so illogical and unfair, is hampering the quality of care delivered to all. CF patients, because they require so much health care to stay healthy, are the proverbial caged canaries in the coal mines -- they will be among the first sufferers as our healthcare system deteriorates, but they will not be the last.

Accordingly, I strongly urge you to adopt an aggressive program of healthcare reform that is calculated to provide access to all.