Friday, May 08, 2009

Blog Neglect

Phone the authorities. I haven't fed my blog for an entire month!

I think Alison talked about this not too long ago...sometimes, there is so much going on that you just don't have time to stop and write it all down. Things happen, and I think, 'I should blog this', and then three days later when I catch my breath, it just doesn't seem so interesting anymore, or I can't remember what point I wanted to make.

I was so proud and happy to see Connie Culp come forward this week and start to tell her story.

I want to comment on so many aspects of this story, because Connie's story teaches us so many lessons about who we are as a society: How she was injured and the question of our ready access to firearms, what her husband's behavior tells us about our still Neanderthal attitudes about violence directed at women, the shared outrage of a vocal few about how we shouldn't "play God", and the ongoing debate about access to healthcare in America.

I have a lot to say about the first few points, but today, I'm thinking generally about the last point, as I'm finalizing plans to hold a three-day conference about quality measurement in healthcare.

The Connie Culp story is germane to this discussion, because while there is no doubt that the accomplishment of face transplant is a huge step forward in surgical excellence, the real story here is about humanitarian compassion and quality of life. How do we treat our fellow humans who have sustained incredible suffering and help them to be -- and feel -- whole again? It's a question that many of us face daily in working on technologies to re-build soldiers who are coming back from the wars overseas and that we confront in deciding who deserves to be the next Connie Culp.

But we also confront it, daily, in smaller and less public ways: Will insurance pay for breast re-construction for women who have undergone a mastectomy? How much function is is necessary in a prosthesis for a Medicaid patient or a veteran? Are the needs of those individuals quantitatively and qualitatively different than the needs of a company executive with top-line health coverage? These seem like dollars and cents questions, when we stand on the outside and look in. But if you are the mastectomy patient or the Vietnam vet who is missing a hand, they are very real, day-to-day questions that affect function, productivity and self-worth. And the answers we as a society finally come to will say more about our values and our commitment to equality than any overseas humanitarian mission or any war we fight in the name of democracy and freedom.

I was having coffee with Maria Siemionow this morning. Most of you know her as the surgeon who led Connie Culp's face transplant team. What most people don't know about her is that face transplant is not the real transformative technology she's working on. Don't get me wrong; it's cool. And if you are one of her patients, it's life-changing. But her real contribution to society will be in her development of new therapies that have the very real possibility of eliminating immunosuppression drugs for all transplant patients. Sometimes, I have to give voice to my frustration that the real "change the world" work that she is doing might forever be overshadowed by this single moment of fame. Because her "change the world" technology isn't going to sell a lot of drugs or ad time on major networks. But it will make a definite change in the quality of life for the nearly 29,000 solid organ transplant patients in the US each year, and will mean life over death for the 56,000 patients who die each year, while awaiting a matched donor.

And yet, with all that, I have an easier time getting her funding to transplant an individual face than I do funding her immune technologies. it's not that I don't want to fund face transplants. Believe me; I've met enough patients in the last few years who break my heart daily, that I want to see a way clear to help heal each and every one of them. But I also want us to think about the common good, which sometimes means that the money we spend to develop yet another anti-cholesterol drug might be better spent to provide regular preventative health care to at risk populations.

As a society, we need to make the decision that humane and compassionate treatment of each and every member is a higher priority than deciding who is entitled and who is not. Only when we have prioritized our common good ahead of our special interests and the "moral judgements" of our vocal minorities will be genuinely fulfill the the rhetoric that we broadcast to the rest of the world, touting our 'freedom' and our supposed 'moral high ground'. When genuine quality of life for each and every citizen is our objective, we will find that our health care is not only better, but it will likely be cheaper and more sustainable as well.


bhd said...

I'm glad that you're doing the work that you do. Can't imagine anyone better in your seat, my dear.

Crabby McSlacker said...

Wow, great post--so much I didn't know. And I totally agree with you that it's such a shame our priorities as a society are so messed up!

winter said...


So right.