Health Care, Innovation and the drive to organize

Today's post might be all over the place -- you have been warned.

Last weekend was really special. Lauren and Sarah flew to Tampa to join me in some warm weather (New England has seen an early, cold and snowy, arrival of winter) and to participate in the Arthritis Foundation's Jingle Bell Run. Our small but mighty team of two runners, dubbed "Lauren's team" was in the top ten of all fundraisers (see our site here: https://events.arthritis.org/participant/Jane-Swift) and while the weather was a lot warmer than we would have liked, and the markings on the course didn't give us a good sense of what our pacing was, we ended up having a really good showing. Lauren actually came in third in her age group and I placed 8th in mine. That was icing -- last year at this time Lauren was so sick she was going to school about half the time, undergoing really invasive tests to figure out if there was something besides Juvenile Arthritis impacting her and losing her unbelievable drive and determination to succeed. This picture is a triumph in so many ways:

Lauren & Me before the Jingle Bell Run Shameless photo before she applies for the 15k Annual Scholarship to Abbvie

The week before we left Lauren had her check up with her lead doctor, the head of Pediatric Rheumatology at Children's in Boston. Her exam just reinforced what we already knew -- her health is better than it has ever been. And while he was impressed earlier this year by Lauren's dedication to the regimen that allowed her to overcome the Central Sensitization Syndrome (what we eventually discovered was the side effect/new related condition causing our annilis-horribilus -- spelling?) I think he was nearly floored at this visit. She had endured the transfer to a new school, two AP courses, a run to the championship game in Field Hockey and her dad's kidney transplant that had her and Sarah shouldering the one hour each way commute to school alone for nearly the entire fall. It wasn't without a few bumps in the road -- we hit a few, but she knew how to overcome them and I think it was her adherence to adjusting when necessary (she actually voluntarily sat out one long bus trip to an away game mid-season in consultation with her coach) that really impressed him (I have gotten numb to being impressed by her). 

However, he and I also often veer into policy talks and I was surprised given the health care debates of late that he was still adamantly opposed to single-payor health care. He shared with us that there were more MRI's in Denver last year than Canada. (I think I rememberd that correctly). He also said that the number of organ transplants in older adults like Chuck in country's with socialized medicine are miniscule. But mostly, he and I share a concern that important drug discovery and innovation would be thwarted under sole government control. And that is important to Lauren's story because while her efforts are the Number 1 cause of her recovery & current good health, her switch to Enbrel last winter gets 2nd place.

And this is where our story gets more complicated. I wrote an OpEd about pre-existing conditions and changing jobs and Lauren in the Globe a while back (see that here: https://www.bostonglobe.com/opinion/2017/06/25/health-reform-must-protect-patients-with-preexisting-conditions/4SMZEZarOvpwMhwRW9PdhK/story.html) -- I promise to figure out hyperlinks one day -- and ironically I did not actually face a change in insurance until 10/31. Chuck and I chose to pay out of pocket for COBRA coverage as long as possible so as not to disrupt his and Lauren's coverage. It is a blog post for another day but he would not have gotten his kidney if we had made a different decision. Process that. But -- in the midst of our busy life, I have been switching Lauren and Chuck from one insurance to another over the past 35 or so days. 

The process of switching insurance -- even when you have money and coverage - certainly does seem designed to make you support single payor health care or just about any other system than the one we have today. Three days before Lauren and I ran in the Jingle Bell Arthritis run I paid a $2,000 co-pay for a one month supply of the Enbrel that is allowing her to feel as good as she does right now. The week she played in three play off field hockey games IN THE POURING COLD RAIN we had to reschedule her $12,000/per month IVIG that I had ingeniously scheduled for 10/28 to give me a month to get approved for November -- but the quarterfinals got rained out and sheduled for the 28th! Her new treatment was on the 2nd of November!! It took me almost three months where I finally cried at Christmas time to some nurse manager in Cleveland to get this treatment approved when Lauren was in 8th grade (her last terrible health year). This time I just signed that we would pay out of pocket if need be and because I have been talking to the HR folks at work for months about this issue (and lets be honest, because of my position) we got the coverage approved in record time. Still -- the best plan for us has zero co-pays for visits but high co-pays for drugs and labwork but then a limit on the total family deductible and out of pocket. This year because we switched in November, we will have to hit the $3500/6500 twice at the end of the year and again in the beginning of 2019. When the Enbrel is 2k a month that won't take long. And yet --- ask me if I would pay three times that forever if it meant I get the Lauren in the picture above, guaranteed, instead of Junior Year winter Lauren? Easy answer. I will bag groceries at night if need be .... So then today I read this Globe article: https://www.bostonglobe.com/business/2018/12/03/test-turns-out-lifesaver/dH8F5QcbPGEOpl3LaqVcaN/story.html

And again, I know that the innovation happening and saving lives -- either the quality of life for kids like Lauren or actual lives for cancer patients -- is something that we have got to protect. But I also know that the amount of complexity and money our family has gone through in the past 30 days is unsustainable and not possible (and by the way, I have more to do .... including, figuring out how to confirm Chuck's Medicare eligibility so for all my single payer friends reading this just know that the process with them/that is NO EASIER) for most. And while I hope Lauren and I will run more 5ks and some of them will be charity events there is no way we will race enough to raise money to help as many families as I know must be struggling with this burden. And it isn't just the money. As Lauren wrote in her CommonApp essay -- she is blessed with access to great doctors and the best hospital in the world and that is a gift beyond money. 

So, quick trips and late night flights are my life. Both Lauren and Sarah were dragging from the 1 am arrival home but both made it to school Monday -- a true Mom-win moment. Lauren has to be especially careful about over-doing and I did worry all day about the irony of her triggering a bad week of health for a trip to run in the Arthritis event (and, let's be honest, a good dose of Disney). She did have a bad stomach day and didn't eat much yesterday but still wanted to go to STRONG class with me last night. (Told you -- she is relentless). On the way home, she brought up an interesting conversation we had on the plane. We sat in the bulkhead -- A-list on Southwest is my reward for the crazy life I am living. The male flight attendant was in a chatty mood for a 9 pm flight and wanted to guess what my job was that had me travelling to Tampa. I was looking like a bedraggled mom so I was surprised when he asked if I ran a health care company or hospital (funny, Tampa General is run by a Masshole). The girls told him he was close! Anyway, in the car after our workout Lauren was commenting about all the logistics and organizing that 'running things' entails. The girls had met a bunch of people at work and I always involve them in what I am doing. They also listen to my end of endless conference calls -- they have for a long time. And Lauren commented that, "You know, mom, all the organizing of health care and running a hospital really isn't that different from what you do. And think about some of the issues we have seen with problems in how those things run. You could fix that." Lauren and I share a desire to make things work better and more efficiently (we talked a little about that, too) but I was floored by her confidence that I could just 'fix' some of these vexing problems. And then I have spent the intervening hours when not engrossed in my actual job(s) trying to think through how. And then why I feel like it is my responsibility to figure it out. And how I somehow have passed that on to all three of my daughters in different ways and whether that is a blessing, a gift or a curse. 

For now, I will have to put my brain on pause for solving the health care issues for the country and get my third cup of coffee and go back to juggling calls to our new insurer, Medicare, doctors and labs all in between several conference calls before heading back on the road tomorrow. But I am driving to Boston before flying to Tampa and I have always done my best thinking behind the wheel .....