Dear Judge Matsumoto: order Martin Shkreli to create a nonprofit biotech company as community service

Chloe Barnes
Chloe Barnes

Dear Judge Matsumoto,

I understand that you are the judge presiding over the trial of Mr. Martin Shkreli and I would like suggest that, should he be found guilty, you make service to the patient community in the form of working with me to start a non-profit biotech company part of his sentencing.

In 2010 I lost a child to a rare and incurable degenerative disease. When the doctor told me and my husband that our 2 year old daughter would die of a degenerative neural disease, her next statement was “and there is a 25% chance that your 4 year old is also affected. We need to test her immediately”. Both our children gone. That was the information the doctor discretely left the room to let us process. In that moment my husband looked at me and said “if both my children get this death sentence I am putting us all in the car and driving off the I-35 bridge. I can’t face watching my children die this way.” Of course, this was the emotional response of a father faced with a tragic circumstance and not a statement of his intentions. I simply tell the story to highlight the level of despair a man whose children have a terminal illness and no effective treatment options experiences.

When I discovered that Mr. Shkreli once attempted to start a biotech company focused on rare diseases, I couldn’t help juxtaposing him against my husband. A supremely greedy man beside a desperate father. You may or may not know that rare disease drug development can be a very lucrative business currently. Specialty drugs (drugs for rare diseases) are some of the highest priced medications on the market and have become “blockbusters” for some pharmaceutical companies, leading to unsustainable prices for some treatments. The pharmaceutical industry has nearly free rein in pricing rare diseases however they choose. Of course, this is what attracted Mr. Shkreli to rare diseases in the first place. It is clear from the multiple instances of rare disease treatments being priced in the hundreds of thousands of dollars that the drug development model for these medications needs rethinking. There must be a greater emphasis on affordability so that finding cures for the over 7,000 rare diseases can be a sustainable model into the future.

The news for our oldest daughter was that she was not affected with MLD but Chloe passed away shortly after her diagnosis. After losing Chloe we determined to honor her by starting a foundation, raising money for research, and advocating for policies that would improve the lives of all those affected by a rare disease. My vision is nothing short of a world where every child has a chance to fight, no matter how rare their disease. But this can’t be done without a restructuring of the drug development pipeline.

Even before I learned that Mr. Shkreli would be facing criminal charges for fraudulent activities in relation to his pharmaceutical company I felt a deep sense of sadness at all his wasted potential. He is clearly a bright man who could be using his energies to further lifesaving medical advancements. I believe deeply in human redemption. I also believe that the justice system carries an awesome power and responsibility to ensure that those who do damage to society pay their debt back to society. Mr. Shkreli’s debts go far beyond what he owed investors. His use of company money to pay off investors and the trust he broke with the patient community is still outstanding. I am asking that, should Martin Shkreli be found guilty of defrauding his pharmaceutical company, his sentence be to work toward reparation of the trust he has so damaged with the patient community. There are already successful non-profit biotech companies, but the challenge is to apply it to the rare disease community and I am confident that Mr. Shkreli has the know-how to do this. Think of what he could achieve if his self-promotion were channeled into something for the greater good and please consider making working with my foundation part of his rehabilitation.

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