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I had to use a calculator

I have been living with MS since 1992 - I used the calculator on my phone to determine that it's 29 years (because unlike the man pictured above my math skills are lacking). That's a long time and you don't need to be mathematically inclined to come to that conclusion.

And when first diagnosed, my neurologist declared that with all the research he believed a cure was imminent likely 'within five years'. that would mean that we would have had the cure 24 years ago. We don't. So I am grateful I didn't wager any money on Dr. Wiley's prediction. 

But what we do have, instead of a cure, is a plethora of pharmaceuticals to help stem this disease's progression and help us live fuller lives, longer. I am happy for that but am also curious and a tad skeptical because these drugs cost a person living with MS a lot of money and pharma has no financial incentive to search for the cure when they can keep us living less gimpy lives for many years reliant on their elixirs. 

Now big pharma also donates to organizations like the MS Society to offset costs of some of their programs and places ads in publications and sponsors events - all worthy because they benefit those living with MS. And these organizations provide funds to help sustain research into this disease and its symptoms which often leads to breakthroughs resulting in new pharmaceuticals that we with MS can take to improve the quality of our lives. 

It all feels a little cyclical and a lot co-dependent and a tad incestual and truly not wholly beneficial to the people living with MS. And it feels like it's a beneficial to companies reliant on the disability on some level of those of us living with MS, like big pharma. 

The current MS drug I use is infused in a hospital twice a year at the cost of about $100,000. My insurance, thankfully, pays for the drug itself but not the costs related to infusion. But the pharmaceutical company will cover that cost (another $5,000 grand a year) is I participate in their 'co-pay assistance program'. I have heard of some newer therapies that are monthly ingestible that cost $100,000 a month!! So by no means, am I on the most expensive therapy. It's crazy! And then there are the drugs I take to manage the symptoms of my disease that are more than a house payment and again I'm grateful to have the insurance that covers this, once our high-deductible is met.

And I am just one person living with MS - in the US there are nearly 400,000 people with this disease. I used my calculator again - and came up with a gazillion dollars that big pharma gets yearly. And you don't have to be an accountant to figure out that it's a lot of money that would go away if a cure for MS was found. And you don't have to be a genius to know that the economics of my disease are screwed up. 

And that is just for the therapies to keep us living fuller lives, longer. It doesn't cover the additional expense of mobility devices, home and car modifications or physical/occupational therapy ... You get the picture, right? I'm not cheap (no comments, from the peanut gallery, please). If we just invest the money and resources to finding a cure for this damn disease we could save those of us living with MS, those that love and support us and our communities a lot of cash that we could use improve the world.

I know, I KNOW, you readers of this blog are thinking, "But wait, I thought you were all glass-is-half-full-pollyanna-ish and cynicism just doesn't equate with that M.O." And you're right, it doesn't ...

... at days end, I am still a positive person but sometimes reflection on the reality of this disease brings home stark truths. And today's reflection did just that, gobsmacked with numbers. No wonder I don't like math.

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