Before Martin Shkreli made headlines for hiking up the aids drug, Daraprim, from $13.50 to $750 a pill, he hiked up the price of a drug that treats kidney disease patients (usually women and children,) to the point where it is nearly impossible to even get it in the United States. He bumped it up by 2,000 percent, making this pill $30 a piece.
Business Insider says "Thiola is the only drug of its kind on the market, and people with cystinuria generally need to take more than one Thiola pill each day. There's no cure for cystinuria, which means people with the genetic disease have to take the medication frequently to prevent the stones from building up. The starting dose for adults is 800 milligrams, or eight pills per day."
Thats $240 a day.
Let me start with my story, Martin. My name is Abby, and throughout high-school, I found myself in an immense amount of unexplainable pain, and it took several years before I was finally diagnosed with a kidney stone. A kidney stone the size of a golf ball. At 16 years old, I was taken back to the OR, and a tube was placed through my back, into my kidney, to remove the stone that had to be broken up with a laser. A process called Lythotripsy. Fast forward to today; I am 21 years old. As I sit and type this, I am feeling the all-too-familiar pain aching in my kidney, a pain I will always feel, a pain I know will not go away by simply taking narcotics. A pain that I know realize, I don't have to be feeling. I have a genetic disease, called Cystinuria. Before I continue, I want to put things into perspective for you, and the readers. Although it seems you have been blessed with a spoiled life, that has led to your snotty attitude, and hideously creepy smirk, some of us were simply born with issues. We depend on medical advancements to make life tolerable, and I am so very blessed to live in an age that makes it possible for me to be compatible with life.
A Cystinuria patient like myself, on average, will produce very large amounts of stones per year. Think 40, up to 1000 stones. We all have heard about how painful passing kidney stones are, so can you imagine the constant pain I live in? Does it help you to understand that these types of kidney stones are not smooth like calcium stones, they are barbed, like rock candy. The damage that is done to my ureter and my kidneys, as well as the scar tissue caused from multiple kidney surgeries (I've had four, I am 21) can very easily lead me to need a kidney transplant.
I am told by my now third urologist, that I can "manage" the formation of stones with potassium supplements, drinking a lot of water and being completely vegan. Why vegan? I will tell you. The amino acid "Cystine," is much higher in animal products, and because out of all of those management tactics, avoiding the protein at all costs would be the best chance I stand.
For me though, there is a catch. I am also allergic to soy products and chickpea. Now let's break this down. No animal protein, no soy protein, no chickpea. I have a very, very small amount of food to choose from in order to "manage" this nightmare of a disease. The medicine that you have made impossible to attain in the United States would simply block the Cystine from ever reaching my kidneys. It disgusts me that I will battle this painful, lifelong disease, just like many other people whom you have so carelessly ripped life altering medications from, all the while knowing that if I lived in a country that didn't allow scum bags like you to hold treatments over the heads of millions, that I could live pain free.
Pain-free. That is something I may never know, Martin. I deserve to.
How dare you hold life altering and saving medicine hostage from millions of people. Children, mothers and fathers. People who would give anything to not have to lay in a hospital bed while their child worries at the young age of 4, if Mommy will be OK. I should never have to lay on my floor in tears, while my daughter experiences extreme anxiety because again, how can she know if Mommy will be OK? It would be wonderful to not have to know that I will never be considered a reliable employee because I simply cannot predict when my kidney will be completely blocked off, and nearly lose its function, like it did just last year. By the way, I lost that job.
Must be nice, Martin. Living on that pedestal. My only hope for you, is that it hurts like hell when you fall off.
I should add, that there is a chance my children could have this horrible disease. If they should ever have to experience this nightmare, I will spend my entire life fighting this atrocity of a government that has allowed you to monetize this treatment, and make it so unattainable to the point that doctors in the US don't even tell patients that it exists. I urge the United States citizens to fight the people who allow this kind of thing to happen. I urge you to vote for people who simply care about people. Use your power to make sure that no child, or mother should ever have to suffer because somehow we have prioritized money over humanity, and it has gone on far too long. I am pleading with you, because I know I am not alone. There are many solutions to this problem, many that other countries are actively implementing. Universal health care or even caps on how much can be charged for pharmaceuticals. Be the change in this country, and don't wait until you have to see a loved one suffering so much before you do something.
Sincerely, one of millions.
