02/08/2016 01:56 pm ET Updated Feb 08, 2017

An Open Letter to Martin Shkreli and Nancy Retzlaff

Dear Mr. Shkreli and Ms. Retzlaff,

I wonder how long it takes Turing Pharmaceuticals to blow through $100,000. If your testimonies at the recent congressional hearing on drug pricing are correct -- that Turing spent a cool $23,000 on fireworks, a yacht, and cigar roller for a "business meeting" -- then I'm guessing a Christmas party or two would take care of $100,000. (See full hearing here.)

See, $100,000 isn't an arbitrary number to me. It is the total of five years of my fundraising for medical research since the death of my 2-year-old daughter to a rare and as of yet incurable disease. When I think of $100,000, I remember the elderly woman who sent me $5 when she heard Chloe was dying. I think of the courageous relative who has battled addiction the better part of her life and saves her money so that she can send $100 to my annual fundraiser. I picture the scores of rejection letters from businesses that I receive for every one that sends me a sponsorship. I recall the 3 a.m. frantic emails I sent to keep my first awareness campaign afloat, all the while nursing my 5-week-old son.

My husband and I have sent nearly every penny of that money to various research projects and the largest amount to the University of Minnesota (a public sector research institution) in the hopes that the research conducted with our admittedly small amount of money will provide enough leverage to generate grants from the National Institute of Health (another publicly funded institution). Perhaps the wonderful university scientists we collaborate with will then make enough progress on the already-promising research to develop a drug that would cure MLD, the disease that killed our child. And here is where I force my brain to stop thinking about how the system works. Maybe one of your fellow pharmaceuticals will decide that a cure for MLD is worth their attention. Maybe all the hours of fundraising and the help of tax payers through that NIH grant will offset the risk enough to convince them that developing and marketing the cure will be profitable. Heck, maybe it will be their next big cash cow like a handful of "orphan drugs" that pull in billions of dollars a year in revenue for the companies that hold exclusive patents. Ms Retzlaff, you talked about drug development being risky at the hearing. But as someone who stands ready and willing to help take risk out of drug development, what I really heard you saying is that most drugs just don't have the astronomical return on investment to interest your company.

But really at the end of the day, it isn't all your fault -- nor are you an exception to the rule in the pharmaceutical industry. It's really a problem with the societal assumption that we Americans swallow that we need to "incentivize" pharmaceutical companies by allowing you to make obscene profits on the backs of the sick. If anything, this hearing provides ample evidence that obscene profit margins lead to obscene spending habits long before they lead to lifesaving drug development. And as long as the American people assume that you two are exceptionally bad people and not the norm in the pharmaceutical industry, nothing will change.

Medical research and drug development are professions of enormous consequence to humanity and filled with inspiring biographies. Stories of individuals like Fredrick Banting and his team of researchers who discovered and developed insulin, patented their insulin extract, and then gave away all their rights to the University of Toronto which would later use the income from insulin to fund new research illustrates all that is good in humanity. I can't help but imagine how the world could be transformed if each pharmaceutical company were driven by the ideals of their profession instead of profits. And I wonder what $100,000 could do if it were more sacred to your industry than the price of a yacht, fireworks, and a cigar roller.