How Much for a Cure?


So – nobody won the Mega Millions jackpot last night, which means that it is likely to reach over $250 million for the next draw.  I don’t know about you, but when I think about that kind of money, what I imagine more than anything – more than buying a house with enough bedrooms for my kids, or buying a car, or sending my folks on a cruise around the world… what I imagine most is this:

I am sitting in a room with the best and brightest researchers in the field of auto-immune disease.  We lock ourselves in for days, weeks, months even – discussing the most promising research projects to tackle – What lessons can we learn, what answers can we find? What are the next puzzles to solve? If each new thing we uncovered was like one of those blocks in Jenga – and we pulled it out of the  mysterious tower of pediatric rheumatic disease like Jenga pieces – how long until we make the tower fall and the disease is no more?  jenga

Maybe we won’t know exactly which way to go… but we will have several promising ways outlined.  And then I just write a check. I would gladly hand it all over if it would be enough.  Can you see the check?  How much do you think it’s for?  I bet you have dreamed of writing that check too.  And then, after the work is completed, after the project discoveries pull all those pieces out of the tower – no kids have to live with this sticking disease anymore – because we will know how it is caused, how to stop it.  There will be a cure.

Do you ever wonder?  How much it would take?  If we had a blank check right now… what number would we have to write in to find a cure?  What else would we need to make that happen?  I mean, we all say we want a cure – we want it yesterday.  But in many ways – I cannot concretely define how much closer we are than we were when Caitlin was diagnosed 14 years ago. I can tell you much of the advancements in that time – I can tell you about cytokines that have been identified, how we transitioned from”rheumatoid” to “idiopathic”, about medications that have been developed and how the treatment protocol pyramid was flipped.  So, I guess I can tell you the distance from where we were, to where we are now.  But I can’t really define the distance between where we are and where we want to go as clearly.

I had a rare opportunity to be at a meeting with seven pediatric rheumatologists a few months ago.  It was shortly after the Powerball Lottery had just paid out a $564 Million jackpot, and my head was swimming with check-writing, research-buying, cure-finding fantasies.  After the meeting, I was riding back to the airport with several doctors, and I leaned in and asked one of them…. If you had unlimited time and money, how much do you think it would take us to get to a cure?

Her answer was not what I expected at all.  She said, with barely a moment of hesitation, “$50 million and ten years.”


Now… let me caveat – this was one doctor’s opinion.  But she is a pediatric rheumatologist involved in research.

So, I don’t know about you – but my initial reaction was two-fold.  The first: $50 million…. is that all?? The second : ten years is too long.

$50 million dollars?  What if that was close to being accurate?  I mean, I don’t have that much in my back pocket… but somehow it doesn’t seem unattainable.  Last summer the Ice Bucket Challenge raised $115 million for ALS research.  That was astounding.  But I bet – if it had been true that $200 million was what was needed for a cure- we could have gotten there.  I don’t know the way to get a $50 million check….but if I thought that would get us a cure…If I believed that it would mean understanding these diseases – and mean no more lupus, no more more scleroderma, no more dermatomyositis – no more more juvenile arthritis….I would do everything within my power to find the way to $50 million dollars.

As for the ten years, it seems too long.  I  know for sure it seems too long to the mom of the 18 month old who was just diagnosed. She can barely imagine how they will cope through toddler years – thinking of her future tween still dealing with JA is almost too much to contemplate.  Ten years of childhood is too long to have to say “No” to bounce houses, or not be able to sit on the floor, or not be able to jump on a trampoline without paying the price the next day.  It is.  In so many ways, tomorrow is not soon enough for a cure.

But we’ve done 14 years already.  Ten more will make my daughter 27.  And when I think of the things she might be wanting at 27?  Well…I’d welcome a cure for her then – I’d welcome a cure gladly before she has to worry about whether this will affect her own children.  Or possibly her brother’s future children.  Before it affects her career.  Ten years? If it meant never having to flare again?

I just keep thinking about those numbers.  $50 million dollars and ten years.

In my heart, I don’t think she is right.  But, I decided that now, I’m going to keep asking that question.  I’m spending more time really investigating how other diseases are making progress – how patients are collectively driving research and treatments – how shared data is speeding up change and advancement towards remission and cures.  I’m really trying to put a number on the distance between where we are and where we want to be… and trying to understand how we can all play a part in getting us there. It’s not some magic fairy that is going to solve this – no single person will find the solution.  We all will play a part I think.  And so, I keep coming back to that fantasy of the blank check, and my question….

How much for a cure?

What do you think?

This entry was posted in Awareness / Advocacy, Diagnosis, Flares, Remission, Uncategorized and tagged , , , , , . Bookmark the permalink.

2 Responses to How Much for a Cure?

  1. Pat Nelson says:

    Colleen, you are an amazing woman and in reading this early Sunday morning, I am even more inspired than I felt yesterday at our AF walk here in San Francisco. Thank you for all you do and for putting these challenges out there for all of us. Pat Novak Nelson

  2. nicole080984 says:

    Colleen I so love reading your blog posts…you write so beautifully and I swear when I read it’s like you’re speaking just to me. And you’re right…10 years…that seems too long…in 10 years Bevin will have a license…that’s a small lifetime away…

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