This morning I woke up with a migraine. I was unable to get out of bed and I slept until 3:00 in the afternoon. Recently I have been very sick and my health has gotten beyond tolerable. When I was able to look at my phone, I was overwhelmed by the supportive comments that I have received from everyone. People reaching out to me and thanking me for standing up for the rare disease community. As I was very touched by this I was also heartbroken. I was heartbroken because I realized that so many voices are unheard. I believe in many things, but I believe more than anything that God wants us to stand up for ourselves and stand up for others. I am standing up not only for myself in this letter, but I am standing up for all of you zebras out there. The patients with diseases so rare that your doctors don’t know what to do. We all need to fight. We need to get everyone who is on our side to support us. We need to go far and wide and scream at the top of our lungs. One person cannot change the world, but together we can accomplish anything. Please everyone call your senators even if you do not live in Massachusetts. Contact everyone you can and bug the hell out of them. It is our time to stand up and fight. It is our time to make our voices heard. We can no longer sit by and watch the world forget us. We are rare, but we are not less. At the bottom of the page is my letter to Elizabeth Warren. Along with a link to “The Sick Chick’s” page. I have also included links to Elizabeth Warrens speech, the senate contact list, the Mighty to read stories about people with rare disease and non profit organizations websites. Please share this with everyone you know! No matter if this bill passes or fails, this movement has shown us that we can work together and together we can make a ripple in the pond no matter how small that ripple may be. Whatever you do please never loose hope in yourself and your ability to make a difference in this world. 21st Century cures is so important to rare disease patients for the reasons I list in the letter. Please do not let this bill die!
Dear Elizabeth Warren,
Today I am embarrassed and ashamed to live in Massachusetts. The state I love, the state I go to school in, has been hijacked not by “big Pharma and republicans”, but by you. I want to first say that I am a democrat. You see, I am also a disabled American. I have many rare diseases and have undergone 20 surgeries in my 16 years of life. I have had more surgeries than years on this Earth; think about that for a second. When I heard you are against the 21st century cures act, my stomach went into my throat and tears welled up in my eyes. Now I feel as though my home state is against me. Against helping people like me. I feel as though you have forgotten me and left me out in the cold to die. I read your arguments and I truly hope that you take the time to read mine…
1.) “Legalizes Fraud”: You tell us about how the 21st century cures act is allowing patients to get medications they do not need. “You can’t sell a headache pill as a cure for cancer.” Yet you forget that there is still a medical doctors prescription required to obtain these medications. In short, you are saying that you, someone who is well educated in law, knows more about someone who is well educated in Medicine. Let doctors do their jobs as doctors should. If someone has brain cancer, they might need a headache pill as well, also there is no “cure” for cancer as of yet, but treatments, which may help them. As a rare disease patient I have suffered because of the “off label medications” rule. Medications change the molecular biological processes that go on in our body. Especially for when dealing with neurological diseases, some of the exact effects that these medications have are unclear until later. For example the drug Doxipin, is thought of as an anti-psychotic, and yet, some studies have found that it is helpful for allergic reactions. This drug saved my life when I had anaphylaxis. Benadryl is alike Doxipin in the respect that it makes people seem sedated, yet people don’t take it to calm them, they take it for their allergies.
2.) Covers up bribery: “Once again, drug companies cozied up to Congress to gut that disclosure rule – allowing any gift related to “medical education” to be exempt.” When I first became ill, my family was clearly devastated as I was only six years old. By the time I was eleven, my mom had started up her own non-profit organization with a few friends. Since then, they have grown in size and are doing amazing things. If my Mom were a pharmaceutical representative, this means she couldn’t ask doctors to do studies for her non-profit due to conflict of interest issues. I understand what you are saying, but many doctors are not frauds. They go into their profession for the same reason, you became a politician, to help others. This means that a pharmacy company cannot put on a medical conference. The regulations on drug companies are so strict that drug companies are having to spend an extreme amount of money on legal help. One drug company I know of has 20 lawyers on staff. When companies have to pay this much for legal help, they run up the prices of their drugs. What you are suggesting, contributes to the already high drug prices.
3.) Hands out special deals to GOP donors: “The Cures bill creates a special deal so people can sell these treatments without meeting the FDA gold standards for protecting patient safety, undermining the integrity of the FDA and the safety of untold numbers of desperate patients.” To get a treatment approved by the FDA is very difficult. Frankly, it is unrealistic for rare diseases where only 10 people in the entire country are affected. How can you collect proof of a treatment when there are not enough resources to collect that? When a person is dying of a rare disease it should be their choice what to do with their body. This choice should be made alongside a medical professional who took the Hippocratic Oath and is not going to do wrong by the patient. You support abortion, why wouldn’t you support this? A patient should have a choice in this country which treatments they try and do not try. Once I had a brain surgery that may or may not help. It was proven, but my doctor was unsure if it would make a difference. My doctor told me going back into the operating room: “this can kill you.” My family and I knew that I could die. We knew the risks of the surgery. Still I also understood that my life would BE MISERABLE without the surgery to help me. Thankfully the surgery did help, and I am glad that I live in a free country where I was able to decide my own fate. If I had not had that surgery I would be dead.
I truly hope that you change your mind about your position on the 21st century cures act or at least take the time to meet with me. I truly admired you before this and I am hurt by this betrayal. You once said, “Donald Trump chose racism as his weapon.” Now you have chosen negligence as your weapon. You are turning your back to the rare disease community and forgetting that we exist. In my book, this is immoral. Please prove that you are not neglectful towards the rare disease community. We are rare, but please don’t make us less.
Karen Richards (A resident of Medfield Massachusetts)
This is a photo taken when I met with Representative Kennedy in August of 2015 about the 21st century care act. I told him “you don’t see people with rare disease because we are rare and sick. Just because you don’t see patients with rare disease every day, doesn’t mean they don’t exist. Please don’t forget us and our families.” There was also a man there dying from a rare form of cancer. Mr. Kennedy was extremely kind and listened to all of our concerns. He even said he would vote for the bill please talk to him about this meeting and let him tell you the hell rare disease patients go through.
If you have a rare disease send me your picture with a description and I will include it in this post!