Why I’m Thankful for Martin Shkreli:
An Open Letter From Someone Who Relies on Daraprim

Me and my mom after my first neurosurgery at only 10 months old. If you look closely, half of my head is shaved.

Dear Mr. Shkreli:

In the days after Thanksgiving, I want to express my gratitude for your decision to raise the price of Daraprim, and then maintain the increase after you promised to lower it. Your greed has helped shine a light on rare diseases, drug prices, and the serious impact that budget cuts have on the National Institutes of Health (NIH) and other public health institutions.

When I first read The New York Times article announcing that your company, Turing Pharmaceuticals, raised the price of Daraprim by over 5,000 percent, my response was to call my mother in a panic. Why was I distraught about the cost of an obscure orphan drug for an even more obscure disease? I was born with congenital toxoplasmosis, which means I live every day with a serious, life-long condition.

In April 1991, I was born premature to first-time parents who were in their early 40s. I was not an average, healthy baby. I was diagnosed with congenital hydrocephalus, or an excessive accumulation of fluid in my brain, and congenital toxoplasmosis. After my diagnosis, I was treated with a cocktail of drugs, including Daraprim, in order to protect my fragile body from further damage and push toxo into remission.

My parents painfully watched as their baby was wheeled into the operating room of our local children’s hospital to undergo neurosurgery. Doctors needed to place a shunt in my head to allow fluid to drain from my brain. The shunt was necessary for me to survive and have a chance for healthy development. I can only imagine that this first year was hell for them. The fear of not knowing what the future may hold for your child is something no parent — or person — should ever have to experience. I sincerely hope you will never experience the pain or fear my parents felt in those early moments, or throughout my life, as they watched me deal with the unexpected, volatile nature of toxo.

Me, at about 5 years old, with my mom.

Over the years I have had countless health crises, all of which have required me to rely on Daraprim — a 62-year-old generic drug — which is the most effective, affordable treatment for me. My first shunt stopped working when I was sixteen, and Daraprim helped protect me during my emergency brain surgery. Shortly after, when I began to lose the vision in my left eye from complications of toxo, Daraprim was there. Again, and again, I counted on Daraprim to protect my remaining vision, organs, and brain as I underwent a series of surgeries to unsuccessfully save my vision in my left eye, or during my many emergency neurosurgeries to replace my shunt.

As a teenager, rather than day-dreaming about celebrity crushes, what college I wanted to attend, or who was going to ask me to homecoming, I was recovering from neurosurgery and facing the reality I may lose my vision. My family and I worried whether I would be dropped from my health insurance and that we may not be able to pay for my surgeries, the thousands of dollars in medications and treatments, or the flights to see specialists. For most of my junior year, I walked through the halls of my high school with a partially shaved head and an eye-patch that covered a gruesome eye, bloodied from repetitive surgeries. I couldn’t maintain a healthy weight, and I struggled to keep up my grades and my cheerful personality. Despite my fears, I made it through the year, thanks to the compassion of my teachers and care from excellent doctors.

Me and my coworkers in college making use of the fact that I had to wear an eye patch.

Unlike millions of Americans, my family did not lose our home to foreclosure, we did not go hungry, and I didn’t lose my health care because I reached my annual or lifetime limit. Today, as a young adult, the Affordable Care Act allows me to pursue my passions without fear that I will be denied health insurance due to my many pre-existing conditions. However, I was also able to protect myself from toxo because I always had Daraprim, and it was affordable.

This fall, three years since my last neurosurgery, my shunt suddenly failed. I once again found myself in the ER. This time, I was more nervous than usual. What if the hospital didn’t have Daraprim because of the recent price hike? How much co-insurance would I have to pay for Daraprim? Would I be able to get my prescription filled for my post-operative course of Daraprim? None of these questions should have been running through my head at a time when I was rapidly losing cognitive and motor function.

The scar from my October 2015 shunt revision.

Every day, I live with not only the complications from my disease, but I also have to navigate the complex health care system to get the treatment I need. Your recent actions have made that system even worse, and made it harder to take care of myself.

While you have made the lives of people with toxo more difficult, every cloud has a silver lining. First, you’ve unintentionally brought much needed national attention to my rare condition. In effect, you have raised awareness about hundreds of rare diseases that people live with every day. For most of us, the average doctor does not know how to help us, our lives must be dramatically adjusted, and our finances are drained just to treat our conditions — and nobody talks about it.

My disease does not have a lobbying firm or advocacy group to rally Congress on my behalf. There is very little government research money for toxoplasmosis. When toxo does get news coverage, it focuses on the personality characteristics that people with toxo supposedly exhibit, rather than very serious health complications we actually face. Thanks to your shameless business decision, toxoplasmosis made headlines in a substantive way. It gave me hope that maybe young people like me may see a cure to our diseases in our lifetime. Maybe people like me, and the wide-range of heart-wrenching complications we face, will be taken seriously.

You also ignited a national conversation about the cost of prescription drugs in the United States. The murmurs of discontent had already begun with the exorbitant cost of drugs like Sovaldi, but the price increase of Daraprim was like pouring gasoline on a smoldering fire — it was explosive.

For many people in this country, the high-cost of prescription drugs can mean forgoing a life-saving course of treatment or procedure.

People who are not as privileged as I am should not have to suffer or die because they lack the means (financial or institutional) to get their prescriptions. For example, after my most recent surgery, I was lucky to be able to take advantage of patient access resources provided by Turing Pharmaceuticals, with the help of my committed doctors who filled out all the paperwork. The fact is, most people don’t have doctors as dedicated as mine, nor the know-how and time to navigate a complicated system to get Daraprim when the local pharmacy can’t fill it or they can’t afford it.

The current crisis — which can make people choose between paying their mortgage or getting prescriptions filled — does not have to remain the status quo. The fact of the matter is drug companies do not have to charge ever-increasing prices to “cover the cost of innovation” or to “invest in better treatments.” We as a society have allowed the pharmaceutical industry to profit off our national well-being.

How did we let this happen? Well, funding for critical research institutions such as the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) has been cut dramatically. Moreover, drug companies have been allowed to maintain extensive and unjustified patents over their products, and seek to extend that control through things like the Trans-Pacific Partnership. They also have high-paid lobbyists to fight against sensible policies like price negotiation, pricing based on efficacy, and transparency measures. This is why Daraprim can cost $750 per pill in the U.S. and only $0.10 per pill in other countries.

This chart is also available here.

You say you want to invest the money you make off of Daraprim to research the disease that has caused me a lot of tsuris (“trouble”, as my family says) over the years. Really?! I doubt this is actually your intention, especially because at this point you aren’t conducting any of this research. I also doubt that you have the capability to develop a new drug, given that the pharmaceutical industry, in general, is exceptionally inefficient at researching them.

Rather, I think you should lower the price of the drug — which in turn would lift some of the burden from all Americans who end up paying for these costs through higher insurance premiums. You should also fight like hell for Congress to double or triple the federal investment in the NIH. Think of all the universities and labs across the country that could redouble their efforts to understand diseases and discover treatments and cures. Millions of lives could be saved and many more people would see an improvement in their quality of life. It is possible to fundamentally change the way our society develops drugs, and many good alternatives to the current system exist. Changing the system would also lead to more ethical behavior from drug manufacturers and cooperation between researchers. It would lower costs and prices, and without a doubt save lives.

Right now, high-stakes capitalism gambles not only with money, but with people’s lives.

You recently reneged on your promise to lower the cost of Daraprim. When I got my most recent prescription filled in November, I asked the pharmacist the cost per pill. She put me on hold, and informed me it was about $795. I got a five-day course of treatment, with a total of ten pills. Do the math. That is a serious chunk of change.

The average American should not have to bear the burden of your exploits or the exploits of the pharmaceutical industry. I do not expect you to be bold and advocate on behalf of the common good. However, you could choose another path and become a leader in re-imagining our health care system. The benefits to people, science, and the economy would be more profound than any work you will likely ever do.

I know I can’t expect a paradigm shift overnight. But I am saddened and angered by your decision. You have power within an industry, and you could be (or could have been)a voice for long-term change. It is a missed opportunity that has dire consequences, and allows the precedent of gambling with people’s lives to continue.

If you truly cared, you would do what you promised and lower the price of Daraprim. If you truly cared, you would fight for better funding for NIH research and policies that create affordable drugs for all Americans.

I hoped for better, but I am unsurprised. It is now up to Americans to demand the system to change. My faith rests firmly with the people — it is up to you to decide which side you are on.

Sincerely,

Abby Schanfield