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.

Comments

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

Parenting

I just read a post on Facebook regarding the dearth of parenting. The poster was describing a scene where two young girls were pelting rocks at some ducks in our little town and how he observed no parents around telling these girls that it was wrong to torture little innocent animals. Within hours, there were 15 responses - all alluding to a lack of parenting that is evident nearly everywhere today. Stick with me here - because that conversation reminded me of one I'd had recently that might not seem related to parenting at all. It was with my oldest son about his concern about the selfishness of our culture - most recently evident in the Wall Street meltdown. He believes that we are too focused on "Me" and not enough on "We" and if we had a little more focus on the total and just not our part, we would be in a much better place. Still there? Okay, here's the cement that will hold this together - those girls pelting little ducks with rocks weren't likely...

Tough time to be a Pollyanna

Remember when 9/11 was just a date or a number you called in an emergency? Our lives changed dramatically post 9/11. For weeks after that September day, we seemed to walk around in a fog, like the haze that loomed over the now-fallen twin towers. I remember trying to minimize my obsession with the news, trying to keep the three little Piggins away from the enormity of the disaster. Remember when corona was simply a beer best served with a lime wedge? It now and forever will be instead associated with this virus that has upended our world in ways we could never have imagined. This tiny little, microscopic virus has brought the mighty to their knees. It has us quarantined and distancing socially (though I believe we've been doing this emotionally for years) and working from home. As anxiety peaks, our economy tanks. As toilet paper and hand sanitizer flies off the shelves, we are looking for new ways to stock our pantries. A good friend observed, "I never thought I'd...

Emily Post of wheelchair etiquette

I've been in my wheelchair now for over a year - sometimes it seems like 20 and others times seems like days. Depends on a lot of things including my mood for the day (whether my 'get-up-and-go' got up and went), the weather (let's face it even the heartiest of Michiganders don't always want to venture out in blustery, snowy or icy days) and what's on the agenda (if I have a date with my hubby or going to see the not-so-little Piggins). Another variable, about my attitude towards the wheelchair, however is what I believe I will receive from some people when they see me in the wheelchair. What I mean is, some people see ME in a wheelchair and others see me in a WHEELCHAIR. Many times someone will see me coming and give me a look of sorrow or pity - it's a look that gets under my skin and makes me want to scream "You don't see me -I'm not pitiful I'm in a wheelchair!" (actually, what I want to scream sometimes includes a few four-letter...