A few weeks ago, I spoke with a young woman in deep despair. Her insurance company wouldn't pay for her tube feedings and she lives in a two-story house and could not carry the pump up and downstairs all day long. She was ruminating longingly at the thought of a small, portable pump, so I said why not try just asking for it? She thought I was nuts, which I am (mostly in a good way, I hope), until I told her about my Brad Pitt story -- about how a patient was near death and, to make a long story short, I got Brad Pitt to call her and ultimately fly her out to LA where she hung out on the set of Friends and met Jennifer Aniston and George Clooney and the whole deal.

 

So I wrote a letter to Moog, Inc., which makes nifty little portable enteral feeding pumps. I begged for one for this young woman. They called and my heart raced as Karen asked me to tell them a little more about what we at Advocacy for Patients do. I sent her an email with additional information and a copy of our tax exemption letter. She also wanted to know how the patient was going to pay for the supplies, so I told her about the Oley Foundation (www.oley.org, where you can get free IV feeding supplies) and stressed that anything would be better than what they have now. And then I waited.

 

Karen called about a week later. Moog Medical Devices donated not one but two pumps so even the little portable one doesn't have to be dragged up and down stairs. And they're throwing in two months of supplies. FREE!!!

 

I delivered the news to the patient's husband. The patient had a hard day that day, spending it at the hospital because her feeding tube got turned around and was trying to attach itself in the wrong place. But her husband was giddy at the news. There is nothing about this work that compares with telling a patient when you hit a home run for them -- nothing.

 

I wrote the President of Moog Medical Devices, Martin Berardi, or St. Martin as he will forever be known to me. I told him that, since I have nothing to offer in return, I would pay his generosity forward. The week of October 13 was Martin Berardi Week at Advocacy for Patients. Everything we did that week, we did in Mr. Berardi's name.

 

In a lousy economy, with uncertainty abounding, and insurers doing all they can to avoid paying what we're paying them for, there's a man out there named Martin Berardi. He just gave a young woman way more than an enteral feeding pump; he gave her and her husband not just reason to hope, but reason to BELIEVE.

 

Please, everyone who reads this, please help us to pay this forward and do one nice thing for another person this week in the name of Martin Berardi.

This is the space in this newsletter where we talk about health care policy affecting the chronically ill.

 

A couple of weeks ago, the New York Times published an op-ed by Newt Gingrich, Billy Beane, and John Kerry.  In that piece, they argued in favor of "evidence-based medicine."  Although I'm all in favor of looking at and evaluating the evidence before beginning a treatment regimen, I also know that insurance companies use this approach as an excuse to deny coverage.  The only "evidence" they consider is large, randomized, placebo controlled studies that appear in peer-reviewed journals. 

 

Thus, I submitted the following letter to the editor, which appeared in the New York Times on October 29, 2008:

 

There is a place for an evidence-based approach to health care, but limiting treatment to that which has proved effective in large, randomized, peer-reviewed studies would eliminate the proper role of experience-based health care.

For example, a doctor's experience may lead to the use of a treatment that is not approved by the Food and Drug Administration for that particular use. The F.D.A. has encouraged doctors to engage in these sorts of experiments, acknowledging that completing clinical trials may take too long and be too expensive, and that drug manufacturers may choose not to expend resources for what may be a small group of patients.

Despite the F.D.A.'s recognition of the often appropriate use of treatments that depart from its own labeling, insurance companies routinely deny coverage for treatment because of the absence of published studies. Large studies take years to conduct. In the meantime, patients are not getting the treatment that their doctors believe would work.

 

Evidence-based medicine makes sense only if the evidence includes the experience doctors have had in treating patients.

 

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What do you think?