Friday, March 11, 2016

"Why Not Me?"

I work in a large academic medical center, and many of my friends and colleagues are involved in research – specifically research into how to treat human diseases and conditions.

This week, the nation saw the success – and subsequent failure – of its first uterus transplant. I think we all felt sadness for the brave woman who underwent the procedure, as well as for her family and her doctors. It takes someone special to be the first, because being first at anything usually means failing.

And as is usually the case when a “first” is announced, the debate over the use of medical research money has resurfaced.  I have written about this before, back when the first face transplant was performed here in the US.  I am a great believer that experimental transplants – and medical research more generally – is as important to improving the quality of life as it is to extending the duration of it. And as I’ll explain below, I have a hidden agenda here.

I’ve run research centers before and have seen first-hand that it’s a difficult rubric, trying to determine who gets funded and for what research. I think sometimes, as Americans, we have this sense that every problem is solvable, if only we throw enough time and money at it. In medicine, I see daily that this simply isn’t the case. There is just some stuff we can’t solve yet, because it’s just too multi-faceted or we haven’t found the magic bean yet. Beyond that, making a decision about what is studied and what isn’t – and by extension, what projects receive funding for study and which ones don’t – takes some magical combination “How much?”, “How many?”, “What are the chances of success?”, “Is the scientific foundation in place to make a leap?” and perhaps most controversially, “Who cares?”

This last one is a toughie; no doubt about it. 

The Who Cares equation itself is multi-faceted: The list of stakeholders includes the researcher him/herself (who needs to feel so much passion for the problem that s/he is willing to get kicked in the shorts for years trying to solve it), the institution (which even in funded research provides a lot more support than most folks appreciate), industry (who needs to be able to commercialize the outcomes in the case of a drug or device, to justify the huge investment in development), and yes…the media and the American public.  I’d be a bald-faced liar if I told you there wasn’t a sexiness factor involved.

Last year, I gritted my teeth and smiled through everyone making a big stir over Ebola and the truly obscene amount of money spent by the government, pacifying a panicked and shockingly mis-informed legislature and public, to build multi-million-dollar Ebola containment units.  I gritted my teeth because the chances of an Ebola pandemic here are somewhat lower than our country being wiped out by an apocalyptic meteor shower, but an infectious disease unit and procedures that can contain an Ebola outbreak will be equally effective to contain a really horrific influenza outbreak, too, and we are totally due for one of those.  Sometimes, we take advantage of the sexy to fund the decidedly un-sexy.

So uterus transplants?  Right now, they totally rank on the Who Cares list. Totally sexy. And important to quality of life for some – so important that they’re willing to take the risk of death to fulfill their needs. Who am I to say what makes a life worth living and what risks are acceptable or unacceptable to another human? Believe me, the people who sign up for experimental transplants are absolutely aware of the overwhelming risk of failure and death and disfigurement.  I’ve sat on the IRBs and the ethics reviews for these.  I’ve seen first-hand the consent process. I’ve reviewed the psych testing procedures. If they and their doctors are willing to take those risks, then I’m not going to castigate them for it. 

If it makes you all feel better, here’s the bigger, harder and less sexy pay-off.  Every time we push the boundary in transplant, the attention to anti-rejection medications takes center-stage, too. The community gets a little closer to completing the break-throughs that will make all transplants safer and improve the quality of life for those who receive them. We are really close now – less than ten years away, by my reckoning.  (maybe I’ll explain the process in another post) And that?  That will not only improve lives – it’ll save them. 

If your condition, or the condition of a loved one, isn’t on the list of what’s sexy this year, this can feel so unfair. We all know someone who suffers from cancer, rheumatoid arthritis, Lupus, asthma, congenital heart failure, type one diabetes…the list is endless.  It’s hard not to say, “Why them?  Why not me?  Why not my brother/sister/friend/mother?” My answer is that it’s not so much “not you” as “not yet”.  But someday.  I know what doesn’t sound fair, and it isn’t. If they ever put me in charge of the universe I’m putting “alleviating human suffering” on the top of the list.  Pinky-promise.  In the meantime, I think we will all imperfectly do our best to make good decisions.

1 comment:

bhd said...

I am grateful for your perspective. Plus I'm jazzed that you're blogging again.