Sunday, September 7, 2008

Narrative Matters

The Narrative Matters conference ended today. My body cooperated: my cough was at a minimum, I was able to enjoy small amounts of some incredibly delicious food, and the edema held off until the last day. In fact, physically it was the best weekend I have experienced in quite some time.

I had been looking forward to the conference for weeks, but the conference exceeded expectations in every possible way. I cannot remember ever meeting 50+ interesting, down-to-earth, funny, honest, warm, wonderful, real people in a 48 hour period. Some of the attendees have taken personal tragedies -- battles with cancer, medical traumas, the loss of children either as a parent or a clinician, etc. -- and turned them into opportunities to be healers in some way. Some heal others through the written word and their humor, some founded organizations to help or educate other patients, and some use information technology to revolutionize the role of the patient in their own health care systems or on the Internet. One attendee, a self described "Hustler for Health Care," appears to be single-handedly ensuring access to health care for low income people in the DC area. All weekend I felt like I was in the company of some truly amazing and heroic yet humble people.

Some of these individuals heal others on a personal level while others do their part to heal a very broken health care system. And some try desperately to shine a light on health care issues that affect all of us. For example, in her essay, Irene Wielawski ( demonstrates how perverse incentives in insurance billing practices, where hospitals raise prices to absurd levels to negotiate with private insurance companies, leaves already vulnerable uninsured patients with bills that far exceed the true price of care. If you have private insurance, you know from your "Explanation of Benefits" that your insurer almost never pays the amount charged by the doctor or hospital. Yet, uninsured people are financially responsible for their bills despite the fact that everyone in the system knows the charges aren't "real."

Not all the essays are about insurance. Many are heartfelt, beautifully written narratives that would touch anyone, regardless of their health or insurance status. Follow this link to a story of the beautiful death of a 9 year old girl with AIDS:

Health Affairs is a journal that is widely read on Capitol Hill by congressional staffers, but the greater public needs to know about these stories. You see, as one attendee put it this weekend, sooner or later we are all patients. While a certain percentage of us will die instantly and unexpectedly in an accident, most of us will take the usual route through some amount of suffering on our way out of here. So, health care is something we should all concern ourselves with as people and as citizens.

When we are healthy, we can "afford" to be ignorant about health care issues. Or can we? I was 26 when I got sick with an incredibly rare disease. Luckily I had insurance. More importantly, I was lucky I was able to continue working since my coverage was from my employer. Now I am disabled and on Social Security. I'm sure many of you reading this assume that I now have Medicare due to my disability status when, in fact, I have to wait 2 years to obtain health insurance through Medicare. Thankfully I am married to a man who works for a large employer and have coverage through him. Otherwise I would be forced to "spend down" to Medicaid, the public insurance system for the poor and disabled, in order to get coverage. I would need to become impoverished in order to get health insurance. My illness could have financially devastated our family, ruining all the hard work that we put into earning the American dream. And we still could lose everything to an illness that I could not have avoided with all the preventive care in the world. Why? Because in the United States we don't guarantee health care for all; we are the sole wealthy industrialized nation with that notorious claim to fame.

The essays cover the gamut of health care issues from medical training to pharaceutical marketing and prescribing behavior. there is something here for everyone. Many of us will some day care for elderly parents, fight our insurer for coverage of a drug or procedure, confront a formidable illness, or deal with a mental ill family member, all issues that have been written about in Narrative Matters. These essays are true stories from everyday people trying to obtain or give care in a system riddled with challenges for everyone involved.

Thanks to the Kellogg Foundation, Narrative Matters essays are free to the public. You can sign up to get email alerts and a link to newly published articles at They generally publish 2 articles every other month. I don't recommend this lightly. I know how busy life is for us all, but I think many people will find these essays as enjoyable and informative as I do. And, who knows, perhaps you will be inspired to write and submit a story of your own.


albischof said...

I am so glad that you were able to take time to something enjoyable to you and that your body cooperated. I will definitely check out the links you sent. It sounds really interesting.

Ana's World said...

Happy you were able to go and are sharing what you learned with us! Thinking of you every day. Ana

Chip said...

And I vapologize for repeating myself, but your presence and observations helped to make this such an inspiring weekend.

Julieann said...

I am going to check out the links later tonight--I am happy that you were able to enjoy some of your weekend and that you shared it with us. ((Prayers going out to you))