Skip to main content

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.

Labels:

Comments

Post a Comment

It's not a popularity contest, but ...

A Hole in My Heart Where Sandy Should Be

The past two days have passed with little joy and I find that I'm restless and cannot focus. I don't like being home because of the thousand reminders of my sweet Sandy and yet I can't be away because I don't feel like engaging in anything other than my own personal sorrow. Yes, she was 'just a dog' but oh what a dog she was. . . I learned a lot about loyalty and unconditional love from Sandy. And in that, I believe that God gives us these loving dogs so that we can learn a little about His love for us - that unconditional love. Even on my worst day when I might not have been paying much attention to Sandy, she was still there and still loving. Wow. There is no doubt in my mind that putting her down and out of her misery was the right thing for Sandy - she must have been so riddled with cancer and in such pain. Her last day she couldn't even keep water down; I imagine that her entire body must have been affected by the cancer. Then I think back to her last d...
Post a Comment
Read more

Rolling, Rolling, Rolling

I put my pride aside and got my ass off the grass and into the wheelchair. {I spent a couple minutes deciding whether to put an exclamation mark after that declaration or to put the period after that statement. I think the period better suits my mood about getting said ass into the wheelchair!} On July 4, Saugatuck has a wonderfully unique parade that includes quirky participants like the artsy-fartsy campers at OxBow art colony and the LGBT members of a local foundation along with the more traditional participants like Girl Scouts, fire trucks, and local politicians. It had been a couple years since I had been to the parade, this year, though, my Mom and sister were in town and I wanted to take them. So we loaded up in the van, including Kerri's wheelchair and my own. Once we parked, John asked if I wanted to use my chair and I initially balked but then remembered that it can be a long, hot parade and it might be better to have a place to sit. So, I acquiesced and took the cha...
2 comments
Read more

Friday Night Lights

Friday night lights were blazing last week - when for the first time in the history of our little town, the Saugatuck Indians clinched the district title! You can see the sheer joy on Matthew's face and the pride in his father's eyes in the picture above. Leading up to and during the game, there were several things that made the victory even more sweet. The first being that the sports writers in the area, to a person, all predicted the opponents, Climax-Scotts, to win. They'd had a perfect season - until Friday. The second was that we had to travel quite a distance (nearly 90 minutes) to get to the game. And the weather was frigid and snow was blowing - thankfully it was blowing towards the Climax-Scotts stands and was at our backs. And then our quarterback injured his shoulder and had to sit out for a good portion of the game. Thankfully, the replacement quarterback (a sophomore called up for the playoffs from the junior varsity team) did not let the stress effect his ...
3 comments
Read more