…Or do I really mean “Collide”? On Sunday, Jamie and I attended the annual Neurofibromatosis Symposium conducted by Harvard’s Center for Neurofibromatosis and Allied Disorders (CNfAD). As many of you know, K was diagnosed with NF1 just a couple months after she was born. To date, her condition is relatively mild, and with luck it will remain so.
There is something strangely compelling about taking a peek into the health care sausage factory (I’m sure my buddy Paul could tell you a whole lot more on this front). At this Symposium, there was a microcosm of the health care industry. Physicians, clinicians, social workers, advocates, not-for-profit organizations, parents, patients, educators, lobbyists – with the exception of actual honest-to-goodness politicians – I think we had every category covered, with many people present who filled more than one of those roles. It’s hard to know exactly how many people attended, but at a shot in the dark guess, it was probably about 100 people.
Let’s accept as true that everyone there had an ultimate goal of helping people with NF. The manifestations of how best to reach that goal, on the other hand, varied widely.
The physicians all had a clear motive of recruiting more participants to their clinical studies. Although NF affects more than 2 million people worldwide (according to the Children’s Tumor Foundation), and is more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s Disease combined, that’s a far cry from the more than 2.5 million people in the US alone who have breast cancer. Clinical trials are further challenged by the small number of sites that actually conduct NF research. So for these physicians, who are desperate to fill out their clinical trials, there is a relatively small population of people that can reasonable participate in their trials, so they need to take every chance they get to encourage and recruit patients who meet relevant criteria. For example, many Phase 3 NF clinical trials are “full” at around 200 patients. For other diseases, a Phase 3 study might have a couple thousand participants. So you can hardly blame them for doing some promotion.
The patients themselves fell into two different camps: The “new to NF” folks who were there just desperately trying to make sense of this weird diagnosis, to understand the effects and soak as much as they could from an ostensibly independent source. The other half were there to learn more about specific treatments – What trials are under way; which symptoms do they address; how quickly will a given trial make it to the general population etc., etc.
The patient advocates wanted to be sure that patients knew their rights – whether with regard to their medical rights or their educational rights (Approximately half of NF1 children have learning disabilities), and the not for profit organizations were rather shrilly and unattractively pimping their services. (One went so far as to suggest that if you live in New England, it didn’t do you much good to contact your congressman, because they were probably going to vote for appropriate legislation anyway, so you needed to contact the organization to really have your voice heard.)
The physicians were collaborative, but persuasive. The advocates and social workers were aggressive in their recommendations and approach. The educators were conciliatory to a fault. The lobbyists were preaching the wrong story to the wrong audience.
Each of these players had something to say, and while they respectfully danced around each other, ultimately, much of their advice was contradictory. Where one person suggested getting baseline full-body MRIs, another questioned their value. Where one recommended aggression in the development of an individualized education plan, another cautioned deference toward the educators.
At the end of the day, while I have no doubt that all of these people had the best interests at heart, I was struck by the lack of unity between all these moving parts. They seem to pass by each other with acknowledgment but minimal collaboration, with singular focus on their goal but without consideration of how that goal impacts and is impacted by others.
And as I left the Symposium, I couldn’t help thinking that while these individual agendas are important, that the lack of collaboration on the ultimate agenda – whether that be an individual child’s well-being, the eventual eradication of or the identification of a treatment for NF – means that we will all fail. And worse – I was left feeling that this was the good side of where medical, political and educational worlds meet. That in other arenas, what little collaboration exists here is completely non-existent in other areas of health care – whether it be in the discussion about universal health care, single-payer health care, or stemming the rising costs of health care.
I can’t help thinking that we’re missing the big picture. That the singular focus on the very important pieces is making all of us lose sight of the even more critical end result – either eliminating NF completely or making it irrelevant. It seems to me that the field would be immensely benefited by taking a moment to pause, reflect, listen and collaborate. And it occurs to me that this is true not just of health care, but of the poisonous political environment in which we find ourselves. I’m not so naive as to think that a little conversation can solve all of life’s difficult problems, but in today’s world, it sure would give us a nice place to start.