I'm going to take you on a journey. Imagine that your healthy, beautiful, energetic child is running around, much like they do every day. He or she starts to periodically mention their leg hurts. Before you can give much thought to her fleeting comment, she is off running again, and you are back to your whirlwind schedule of life. The complaints, although still not urgent, begin to come more often. You decide to take her to the doctor just to make sure it isn't anything more than growing pains. The doctor finds nothing and says it's probably a pulled muscle. "Go home and take hot baths," he says. You do and it seems to help. For awhile, anyway. One night, your child wakes up in the middle of the night screaming at the top of her lungs that her leg hurts so bad and pleads, "Mommy, please make it stop." You rush her into the doctor, knowing it's not a pulled muscle but thinking it must be something along the lines of a pinched nerve. The doctor doesn't know what it could be but decides to run some basic blood work to make sure nothing looks out of the ordinary. They'll be back in 10 minutes, they tell you. Forty-five minutes pass and your child is crying because the pain is escalating at an alarming rate. You peek out of the room and see a bunch of doctors huddled around a computer with solemn looks on their faces. You don't know for certain it has anything to do with you, but your stomach drops and you suddenly feel lightheaded. The doctor comes back into the room with tears in her eyes, and basically tells you to "go straight to jail and not pass go." You are told to go to the hospital right now and that you'll be checking in. Do not go home first to gather any belongings. She hands you the directions. All she tells you is that the blood work came back severely awry, but nothing else. Nothing. You grab your crying child, trying with all your might not to cry yourself. Completely bewildered about what the hell is going on. Didn't you just come here to try and figure out how to remedy a pinched nerve?
You get to the hospital and to your surprise, they are expecting you in the ER. They have already been notified. They hand you a mask to put on your 4-year-old. You wonder what is going on. Are they trying to protect her from other people or other people from her? They bring you to a room where they give your child morphine to help with the pain that has intensified immensely over the past two hours. They do more tests. You ask more questions. They say you will have to wait for the test results and that the doctor will come talk to you when they have more information.
After four hours of waiting, pulling out all the stops to entertain your petrified child and put up a brave front, a group of doctors come to your room and introduce themselves as "the pediatric oncology team." You stop breathing. Your mind feels numb. Your worst nightmare has just begun.
Or has it?
Now let's fast forward through a lot of tears, despair, questions and soul searching -- to the point where you have gained some semblance of composure and have gone into survival/fighter mode. You are going to do everything within your power to save your child. You are going to kick cancer's freaking ass. You've reviewed several treatment protocols that were presented to you and made a desperate attempt, in the midst of your world falling apart, to pick the one that seemed to give your child the highest chance of survival. You've started treatment. You're on your way. The journey is long. Over two years of watching poison being injected into your child's tiny body. But you're going to do it. There is no option. You have taken the "bull by the horns" and are in "go" mode.
Until, one day, the news breaks that the key drug in your child's chemotherapy protocol is undergoing a severe shortage. That your child may not get the drugs she needs to save her life. Are you kidding? How can this be? Try to imagine how powerless you would feel.
Now imagine you discover that there is not a legitimate reason for the shortage of medication. One of the companies that made this particular medication, Methotrexate, had reported quality control issues and ceased production of the drug. The other companies that made Methotrexate could have averted a shortage by stepping up their production. However, Methotrexate is not a profitable drug to manufactures, apparently. So instead of doing whatever they needed to do to prevent innocent children from dying, regardless of their profit margin, these companies dragged their feet, to protect their "bottom line."
The most abhorrent aspect of this situation was that the government and medical community knew the shortage was coming but failed to do what was necessary to prevent it. If all that was needed was a government subsidy to keep a drug in production that saves innocent children's lives, shouldn't they have jumped on this opportunity? Hell, when you consider the billions of dollars we have spent on the production of a single fighter plane or any of the innumerable other ridiculous things our tax dollars are routinely spent on, it makes this situation even more disdainful. Thankfully, this particular crisis was averted and the other drug companies stepped up their production. But I knew at the time this was only a Band-Aid. The writing was on the wall that this situation would happen again. And it has.
Daunorubicin is the key component in fighting AML, a form of childhood Leukemia. Leukemia is the most common form of childhood cancer, accounting for one in every three cases of the disease. There has been an ongoing shortage of this drug in our country. It is reported that as of November, some hospitals only have a few weeks of supply left. The sole remaining producer of Daunorubicin, Teva, is one of the largest pharmaceutical companies in the world. Teva recently informed the FDA that this drug was in short supply and that full production would not resume until some time next year. Little explanation was given, and the government didn't appear to ask too many questions.
There is no shortage of properties to make this drug, nor does there appear to be a shortage of funds, seeing as the company, Teva, is reported to boast net revenues of between $19.7 and $20.3 billion dollars in 2013.
As was the case with Methotrexate and other drugs used to fight childhood cancer, the production of Daunorubicin simply isn't that profitable. Can you believe that this would be an acceptable reason to not keep up with the production of a life-saving drug at the rate at which it is desperately needed? Innocent children will die if they don't get this drug -- period. And to sacrifice the life of one child due to something that could be so easily prevented, had direct controls been in place, is an atrocity to humankind.
The shortage of medication in the world of childhood cancer is not new. It is a recurring problem and a concrete plan needs to be enacted to keep it from happening -- ever. Whether it be pharmaceutical companies being mandated to inform the FDA, much farther in advance, when they see a shortage coming down the pipeline or drug companies having a legally actionable requirement to work out among themselves how they will deal with an impending shortage -- conceivably one company could pick up their production if another is having an issue. If there is a monetary issue, the government should be required to subsidize the drug companies to produce the life saving medication. Whatever the solution may be, Congress should be required to work out a system to ensure that gaps in the treatment of children fighting for their lives, simply don't happen. It is reprehensible and, many would say, downright immoral.
People need to be made aware of the lack of funding and general lack of effort that goes into childhood cancer. I truly believe that if more people knew that, for example, only 4 percent of the federal funds for cancer go to childhood cancer research, they would take a stand to change this fact. Children are our future. The average age of a child lost to cancer is 8. Just think about the lost potential. That child could have lived to grow up, get married and have children of their own. They potentially could have gone on to make something beautiful the world has never seen before and be an amazing contributor to society. But, they will never get the chance because of the unnecessary inequities that currently exist.
Write to your representatives and demand that our children get the treatment they need to live. Urge your family and friends to do the same and demand a change. Our representatives are not currently listening and innocent, young lives are being lost every day. If enough of us show them we care, they have to act. They are here to represent us, the people. But if we are silent, innocent children will continue to be casualties to our inaction. Please help us make a difference today. And never forget, it could happen to any of our children. Never in my wildest nightmares did I think it would happen to mine.