Lesson Three – It Always Seems Impossible Until it is Done
There’s a quote I love from Nelson Mandela – “It always seems impossible until it’s done”
A few months ago when we received the news of our children’s diagnosis, and that there was only one treatment that could halt the destruction of their motor neurons, we condensed a 4 week process into 5 days … from getting insurance approval for a $750,000 drug (x 2) within 12 hours on Labor Day, to having that drug shipped and ready to administer 4 days later, with a loads of phone calls and large entities involved in those 5 days.
Then a month later we found out about an incredible new gene therapy that actually gives children with spinal muscular atrophy the gene that they are missing. It was proven to be effective and very safe, but our children didn’t qualify for any ongoing trials and it would likely be a year before it was FDA approved and commercially available (and unlikely insurance would cover their current treatment and this gene therapy which will likely have a price tag of up to $4 Million … yes, you read that correctly).
Not good enough!
All I knew is that something existed in the world that will give my children the gene they are missing and a much better shot at a mobile active life. I didn’t care about the FDA, trials, legalities, or anyone else that was telling me it wasn’t available to them right now. I just kept thinking, “If the CEO of that drug company had a child with SMA who didn’t qualify for trials, would that child still have to wait a year to get it? Of course not! Therefore, it CAN’T be impossible.”
So I kept calling and researching, and finally after one of those many calls I was told “we actually just started a ‘compassionate use’ program and your children could possibly qualify to get the therapy before FDA approval. The process of qualifying required a ton of steps and things to come together, and I had to seek out and convince a number of players to advocate, sign off, and be a part of a mini-clinical trial. There were a lot of hurdles but there was one thing that never changed even with multiple setbacks and people indicating it might not happen … my children were going to get that therapy. Period.
A few days ago, I received a call with the best news of my life: Both our children have been approved by the gene therapy company to get the treatment!
Now, there are still a few more steps and the final one is for the FDA to approve their early access to treatment. There shouldn’t be any issue with getting the FDA’s stamp of approval but I’m in the process of figuring out if this government shutdown might put a delay on it. If it does, get ready to see a physical therapist from Texas get the attention of President Trump and Chuck Schumer on social media and through back channels as well. I know that sounds crazy, and my wife laughs at me when I say stuff like that, but I guarantee it’ll happen if it needs to.
So what’s the business lesson in all this?
Not to sound cliche, but if you want something badly enough, there is nothing that can stop you. When you consider a desired outcome to be a predetermined accomplishment … a reality before everyone else but you actually realizes it … there is very little chance you won’t bring it into being.
- If you don’t like your current work/practice situation, change it.
- If you want a private-pay practice where you don’t have to deal with insurance headaches and you get to treat patients the way you know is best, create it.
- And if the above seems too daunting and unlikely to be possible, just remember “It always seems impossible until it’s done.”
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