Speech - Grae Chambers

I am no Martin Luther King Jr. This wont be a speech about dreams. But It is going to start with one. A few nights ago, I had a dream where I was stuck in quicksand and was slowly sinking into an abyss. I woke up wondering what would have happened if while stuck in that quicksand I saw a rope, just a few feet in front of me. It probably would have been my ticket out. But if this dream was anything like the previous ones I probably would have stretched out my arms out as far as they could reach, but to no prevail. The rope would be so close, yet so far away. This realization left me with a bit of a helpless feeling.  

What if I told you there are thousands of people in the world that feel that way every day. I'm going to ask you all to stand up with me for just a second, I promise this wont take long. Alright could every other person please sit back down. Those of you still standing, we ran a few tests and  I'm sorry but you've all been diagnosed with cancer. But have no fear! The gift of modern medicine has given us hundreds of treatment options to help you out, and they could all be yours for a small fee of 19.99 plus shipping and handling! Just kidding, that'll be 100,000 dollars please. Alright you all can sit back down now thank you. 

Hearing the news that you or a loved one has cancer is devastating. Unfortunately, this is a reality that about half of Americans will face in their lifetime. If I was to ask each of you, I bet all of you know someone who suffers or has suffered from the beast of cancer. Cancer isn't a rare disease, but its treatment options are expensive, and not everyone can afford them. And what is the purpose of having these treatments exist if not everyone one can get them? It's like the rope, you know it's there but you can't use it. The cost of pharmaceutical drugs are unnecessarily high and need to be lowered because they are lifesaving to patients, middle or low class families can't afford them, and much of the money is being unfairly pocketed by large drug companies anyways. 

These drugs are too critical for patients survival to be so expensive. The pharmaceutical company Vertex has created a drug called Orkambi to help treat the underlying cause of Cystic Fibrosis- a rare genetic disease that causes a thickening of mucus in the lungs and is life threatening. This drug, Orkambi, has made colossal improvements in patient lung function."The year following the release of Kaleydeco in 2013 the CF Foundation patient registry report noted that the median age of survival of someone with CF had increased to 40.7 years, a gain of 11.7 years since 1993." (cysticfibrosisnewstoday.com). (Kaleydaco is part of the orkambi drug). This is an indisputably incredible improvement. Patients around the world are now able to breathe with greater ease. But Vertex has managed to put a price on that breathing, and that price is $289,000 a year. That’s higher than the price of most 4 year universities. In the words of Professor Paul M. Quinton, " it's 'egarious'. This is more than five times the salary of an average American family. How can they in good conscience charge that much?” (Forbes.com)  The success of this "miracle" drug should be shared with all patients, and because of its exclusivity, Vertex is putting the value of rich lives over the value of poor. 

Another such drug goes by the name Solaris and is made by the company Alexion pharmaceuticals. It's used to treat PNH, Paroxysmal nocturnal hemoglobinuria. Like cystic fibrosis this disease is rare, so drug companies might argue that there's no reason to make the medications widely available. But, patients families across the world would disagree. This disease can be dangerous if left untreated, but by taking Solaris patients can lead a normal life. unfortunately this drug often goes by another name. "the world's most expensive drug". the cost? over half a million dollars per year. Solaris is the most important drug made to treat this disease because it only effects 8,000 people in the U.S, so other treatments are not an option. Without it, patients will lose their life, which, according to Alexion, has a price tag.  

The lifesaving qualities of these drugs should not be available just to those who can take them white jetting off to their private islands. Just down the road at UK hospital, countless CF patients are treated. I should know, I'm one of them. But many of the other families are from eastern Kentucky where the economy is struggling. I know these families. These families love their kids and all the want is for them to be healthy. Doctors are frustrated watching the patients they know and love suffer just because they can't afford the best care.  "To see a price like this was a kick in the gut. It was really hard to take. I knew it would be an expensive drug. I thought it was going to be 10,000 dollars a year, not 300,000 dollars a year." says Dr. Brian o' Sullivan. Many healers become doctors for one simple reason: to help people. Not to help the top 1%, but all people. 

Because of its extremely high price, PNH patients have been trying to get media awareness to convince their governments to cover the cost of Solaris.(real cost of the world's most expensive drug) These patients have found some success, but they shouldn’t have to take it upon themselves to fight their own battles. Those with illnesses are probably the most mentally strong among all of us, but physically they are weak from years of painful procedures. As humans we have a natural instinct to protect them. But how can we protect them from drug prices? That should be the job of the drug makers themselves. 

The companies that make these drugs are causing patients additional pain with their pricing. And for what? Many companies would argue that its extremely expensive to research and develop these medications, and it is. But this cost is nowhere equivalent to the price the public pays. The drug Zaltrap, which is used in chemotherapy treatments, costs 11,000$ a month. Researchers found that this drug only costs about $5,000 to produce, so the big name company that produces it is profiting $6,000. The cancer industry shouldn’t be an industry at all, its inhumane for its heads to profit from the suffering of others.  

Rare diseases have shifted from being a subject of finding health, to finding wealth. "Selling drugs for rare diseases has become immensely profitable. There are so few patients that companies don’t have to invest as heavily in marketing" (Forbes.com). Those opposed to lowering drug prices, mainly the CEOs of the companies that produce them, argue that investing in old generic drugs is a whole other story from investing in these new drugs (bizjournals.com). It would be a different story if these new drugs maybe cost 5,000$ more than the old, but that’s never the case. What's the point of making medications to "help" humanity, when so few can even take them. 

Now you know the problem, but that information is pointless if you don't know what to do to stop it. The answer is simple: just go to college and work for a pharmaceutical company and in 10 years rise up the ranks until you're in charge. No I'm kidding. But even though were all only 16 or 17 there's something we can do. We can spread awareness. Just last week I signed a petition on change. org to lower medication cost and even though it’s a small act, it's something. And lots of small somethings can add up to everythings. and maybe one day these patients can grab that rope and pull themselves up. 

Works Cited 

"Vertex CEO's Views on Drug Prices Highlight the Industry's Biggest Hurdle." Www.bizjournals.com, 30 Sept. 2015. Web. 13 Dec. 2015 

LaMattina, John. "Will The High Cost Of Vertex's New       Cystic Fibrosis Drug Push The U.S. To European Style Pricing?" Forbes. Forbes Magazine, 22 July 2015. Web. 13 Dec. 2015. 

Bonin, Richard, prod. "60 Minutes." The Real Cost of the World's Most Expensive Drug. CBS. 15 Oct. 2014. Television. 

Shannon, Stephan. "An Undeniable Hope Part 2: An Accumulation of Steps Led To Orkambi." Cystic Fibrosis News Today. N.p., 24 July 2015. Web. 13 Dec. 2015.