I’m sure some of you may be wondering how my quest for Spinraza— the first treatment for Spinal Muscular Atrophy (SMA)— is faring. Obtaining this treatment isn’t for the faint of heart, it takes will, perseverance and just a little desperation— like climbing Mt. Everest, running a marathon, or taking a job in the Trump Administration.

As I’ve documented here, I’ve been examined by several Stanford doctors, I’ve had DNA tests, and I was approved and prescribed Spinraza… two and a half months ago.

But, I’m still waiting to receive the treatment. If I was a female chipmunk, I could have already given birth to nearly three litters of babies in the amount of time I’ve already been waiting. That’s a lot of chipmunks.

Insurance companies around the country have a wide range of policies on Spinraza. While the FDA approved the medication for all ages and types of SMA, at $750,000 for the first year of injections, it is in the insurance companies’ financial interest to limit access to the treatment. So, they have come up with a wide variety of parameters that they are using to approve/deny payment for the drug. Some insurances say you have to be over 15 years old, other insurances say you have to have less than 3 copies of the SMN2 gene, while some say you have to have over two copies of SMN2. Odder still, some are saying that that they won’t pay for those who already use a wheelchair… or a ventilator… or have a last name that ends with “r.”

I have Medicare, so my insurance situation is even stranger. Medicare is requiring something called “Buy & Bill.” Administering hospitals must purchase Spinraza themselves and then Medicare, in theory, will reimburse it. However, under this current set-up, the financial responsibility/burden is on the hospital. And most hospitals are understandably hesitant to assume that risk because they know there is a chance that Medicare will not reimburse 100% of Spinraza’s cost.

Would you fork out nearly a million dollars for a medication if you weren’t sure you’d get paid back for it? Uhm, HELL no. And no one wants to be the bad guy that sends on that kind of bill to the poor cripples in the wheelchair. I may not be in marketing, but even I know that’s not good PR. So, because of this policy, those of us with Medicare are in limbo. We’ve got prescriptions, but no way to get the drug— it’s like having a ticket to the moon, only NASA is broke and all the space shuttles are in museums.

I’ve been told by folks at Biogen (the distributor of Spinraza), and at Stanford, that talks are happening behind the scenes to figure this out. But, as time goes by, all of us with SMA get weaker.

Being patient is difficult, especially for someone like me that doesn’t have a lot of patience from the start. After all, I can barely wait for a grilled cheese to come out of the pan before I take a bite. I hover over the stove like a drone— and I burn the roof of my mouth EVERY. DAMN. TIME. Who can wait for that melty cheesiness? I know I can’t. You’d think that the resulting soreness in my mouth would deter me from doing it again the next time, but I’m just not that smart.

I’m sure some of you reading this are aghast at the price tag associated with Spinraza— and are thinking that there is no need for the treatment to be that expensive. But, please don’t descend upon the makers of this drug with torches and pitchforks on my behalf.

A specialized medication of this caliber is years in the making. There are many costs that go into creating something like this. So, they need to recuperate what they have invested in it. Further, this isn’t a medication for diabetes or high cholesterol— only a very limited number of people can use Spinraza. So, each dose has to be expensive to make it worth their time. If there is no financial incentive to research rare conditions, like Spinal Muscular Atrophy, then no one would bother doing it. That’s a fact. Kindness and altruism doesn’t make the world go around— money does.

In the meantime, today I received this Spinraza welcome packet from Biogen in the mail. It’s a treatment organizer— like the planner I had in high school that I rarely used. This organizer also came with a decidedly cheap pen— emblazoned the Spinraza logo.

No offense, Biogen, but it’s 2017. Who writes with an actual pen, anymore? And who carries a planner? No one.

And I’m going to be frank… Don’t be like Clark Griswold’s cheap boss that bought him that crappy gift in National Lampoon’s Christmas Vacation. At $125,000 an injection, you could buy me an iPad, instead.

I’ll be waiting. You know where to find me.