I thought I would draw more parallels to the movie than I did. That thought was probably what kept me from watching it for so long! The struggle is different. The diagnosis wasn't the struggle for him. The cure was.
The parallel is there in the underlying problem though. The red tape and bureaucracy of the medical industry. And I preface the remainder by saying.... I AM MOST LIKELY JADED. I HAVE HEARD TOO MANY STORIES OF KIDS ABUSED BY THE SYSTEM. FAMILIES FACING UNSPEAKABLE (PREVENTABLE) FUTURES BECAUSE OF THE SYSTEM. It's all wrong. It's not patient based. It's not about healing. Health care shouldn't be a business. It should be a service. This may be one of those 'firepit and cocktails' conversations, so pull up a chair and grab a cold one...
In the movie, the problem is with getting research funding. It all comes down to profitability of the drug. No one (except the researcher or the dad) is interested in saving lives - no matter how few. I realize that some of this is dramatic effect and if I had been there, maybe some of the people in the venture capital group might seem like they cared... but in the real world, I suppose it all comes down to money. Until it's your kid.
Not highlighted in the movie are other issues. Since Makenna's underlying genetic disorder is so rare (80 in the world), I am only thinking in terms of progressive infantile scoliosis here...
Diagnosis. The most maddening part of progressive infantile scoliosis is that there is an easy reading on an x-ray that is predictive of progression. It is called the RVAD. Rib vertebra angle difference. It is cited in scholarly research as early as 1972 to differentiate between self resolving and progressive curves in infantile scoliosis. Any RVAD higher than 20 is considered progressive.It is almost never given on first evaluation by a pediatrician or an orthopedic specialist.
You'll get a COBB angle. That identifies the top of the curve and the bottom of the curve and calculates the angle between those two points. Typical treatment for scoliosis is any COBB angle under 20 "watch and wait". Any RVAD over 20 is considered progressive. Upon initial diagnosis, Makenna's COBB angle was 20 degrees. Her RVAD: 39. A measurement we NEVER got until we were already in Chicago at Shriners. Why don't doctors look at the RVAD? Still a question I am seeking answers to.
Treatment Options. Speaking from hearing dozens of other parents stories... the typical scenario goes like this.
1. Let's wait and see.
2. We'll brace and hopefully hold the curve.
3. Surgery. Every six months.
1. when the wait and see doesn't work, the curve has progressed by 20 degrees on average. (Which, by the way, could be eliminated by looking at the RVAD!!!!).
2. Bracing will hold the curve. So, you are trying to buy time until you need to do surgery. We were intially told we would keep Makenna in a brace until she was 8 or 10 and then do surgery. Your child will be in a brace indefinately, and they may progress in the time being.
3. Surgery. The surgery is not pleasant. There are three options for scoliosis surgery as I understand it. Growth rods. VEPTR. or Fusion. I've been informed that there is a 100% complication rate with any of these surgeries. Every six months your child has to have a repeat surgery. Most recently, I have heard of a child with corroding parts on her iliac crest. Metal rotting and rusting in your child's body. Pleasant.
And I'm still worried about this oath that doctors take...
... "I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick."
Casting offers an opportunity to AVOID surgery all together. I would think this would be a win-win for the insurance companies, but apparently they don't see it that way.
Insurance. So, the movie slightly touched on this. ONE sentence. The wife said "How are we going to pay $40,000 a month in medical bills if you lose your health insurance?" As if the insurance company was paying that every month@! And if they were, we need to switch insurance companies. I feel completely blessed that the treatment Makenna needs is available at a Shriner's hospital. Since they opened their doors, they have never passed on a patient bill to a family. They are competely funded by dontations. It might be the best thing for us. I do not want to know what the insurance charge is for her services. O.R. time, anesthesia, and radiology (twice each time). I just don't want to know. Based on what I've seen already, I'm pretty sure that's a good call. Remember, these kids are little. They can't sit still for an MRI (Makenna has had 3). They have to be sedated for those. That requires an anesthesiologist be present during the scan. Plus the meds, plus the extra time at the hospital. Makenna's MRI's are billed at $6,000 - $8,000. That's before insurance. But still!!! I know those machinces are expensive. The amount of power they take must be incredible, and the upkeep is probably pretty high as well,,, but aren't we sharing that cost with 100's of other people? Maybe not. I don't know.
But insurance costs and medical bills can drive people into bad care for their children. And that is a crime.
So... I had all these feelings after watching the movie. And only one thing lingered with me....
And maybe this is the Hollywood effect; I suppose I'll never know. The family ends up with the great house in the mountains of Oregon. No worries. All good.
I find the greatest parallel with Heather Montoya - the founder of ISOP. She is the reason Min Mehta brought her work to the US. The reason Makenna had casting available as an option. She sought tirelessly for a treatment for her daughter, Olivia. Only to finally find Min Mehta and discover that Olivia had passed the window of opportunity. She didn't give up there, though - thank GOD!! She continued to fight to get the treatment recognized, and trained doctors across the country in this method of casting.
So, she has done the impossible. And I am eternally grateful. But I know that she and her family still suffer. Olivia is the child with the corroding metal on her iliac crest. That's just not right. That's not how karma is suppose to work. She's suppose to be OK.