The math is anything but encouraging
12 September 2024
Dear Editor
Despite nagging inflation and economic uncertainty (which could include “Will my company make layoffs in the next year? or “Will my landlord up my rent again?”) American individuals generously support nonprofit charities to the tune of over $3 billion each year: ($326.87 billion in 2022 according to a Giving USA report).
But the missions of some nonprofit charities make you second guess the wisdom of giving them donations. For example, there is one that rescues and rehabilitates abandoned or neglected guinea pigs, while another promotes “the values of Chivalry and Courtesy for 21st century audiences.”
Other American’s forego giving to charities choosing instead to have an adventure. Axiom Space, a Texas startup, is marketing a 10-day trip to the International Space Station for $55 million a seat. Blue Origin auctioned off a seat on its maiden flight for $28 million. Or for the destitute out there, Virgin Galactic is selling a 90-minute ride to suborbital space for $450,000 per seat. I am not against science or space exploration, but this is just glorified joyriding helping boost an ego instead of solving the world’s many and growing problems.
There are more than 7,000 rare diseases, according to the National Institutes of Health generally defined as a disease that affects fewer than 200,000 people in the United States at any given time. Each one will need a cure. A study published in 2020 in the JAMA Network (run by the American Medical Association) notes that “…after accounting for the costs of failed trials, the median capitalized research and development investment to bring a new drug to market was estimated at $985 million.”
So, a billion bucks per rare disease. That comes to $7 trillion. And doesn’t count what it will cost to address what the Centers for Disease Control says are the most prevalent and costly chronic diseases in the US led by obesity, hypertension and high cholesterol.
It has been said that genetic medicine will probably develop cures for at least half of all rare diseases. But as they come to market they are costing in the millions of dollars per patient.
So, imagine that one of the 7,000 rare diseases is slowing killing or crippling (or blinding or otherwise disabling) your child. You face the daunting task of raising a $ billion for a cure, then paying a $ million or so more for the treatment. The only folks who will support your mission are other families whose children are also suffering. If the incidence of your child’s disease is relatively small (many are less than 500 people in the world) well, you can do the discouraging math.
Once in a great long while someone with billions in their pockets will have a relative who is struck by a rare disease and will give enough to directionally find a cure. But that is rarer than say, a rare disease.
Frustratingly the reality for many is, you are on your own. Even friends may not rally in the way you hoped. This may be because they allocate their giving to other causes or more likely, they have no idea what is going to happen to your child because they have never even heard of the disease.
My child has the biggest rare disease in the world (affecting over 3 million people around the world) and yet when I say she has Charcot-Marie-Tooth (or simply CMT) I generally just get the blank look and a response along the lines of ‘What is that?”
While the vast majority of my giving is to support finding a treatment or cure for CMT (for which – at the moment – there is neither), I also give to other medical causes like cancer, the Red Cross, Doctors without Borders but also the local food bank, the SPCA, and various other organizations that support the arts (or better journalism). I never turn down a friend who is fundraising for their special cause. Because that is the very definition of a friend.
Keep your ear to the ground. With one in ten American families suffering from a rare disease, it is not far away in your neighborhood. Ask questions, offer to help if only in a small way. Even $25 takes a step closer to a cure.
Kiss your kids goodnight and be thankful they are not staring down the barrel of a rare disease that has no cure.
George H. Simpson
Atlanta, GA, USA
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