Natalie's Story
Atlanta, GA
I was diagnosed at 10 years old with Crohn’s Disease. Back then, they didn't know much about the disease. I was originally put on steroids. The steroids destroyed my bones and hardened my veins, but at the time, there were no other drugs available to treat me.
When I was in middle school, doctors tried to give me total bowel rest to reduce intestinal swelling. During this time, I got TPN intravenously through a port in my chest. When I was in the eighth grade, I had my first surgery where the doctors removed some of my small bowel. Following this, I was put on an oral immune-suppressant therapy to try to suppress my disease progression. I was on that drug until the middle of college. In my third year of college, I had to have second surgery to remove more of my small intestines. The physicians were too conservative with this surgery, and I had to have my third surgery a month later to remove even more of my small intestines.
After these surgeries, I participated in a drug study for an experimental new treatment. The study was the only way my insurance company would pay for me to try the new treatment. My doctor couldn't even get the new treatment for me even with a letter of medical necessity! The insurance company wanted me to continue to fail rather than have access to new treatments!
Over the next eight years, I had over 20 surgeries on my rectum. I finally opted to have a total proctocolectomy in 2011. The doctors left me with only two feet of small bowel. After this, I started to fail. I was down to seventy-two pounds. I had to be fed by IV nutrition every night for eleven hours. This has continued ever since.
The processing of the TPN (IV nutrition) has been extremely hard on my organs. A year and a half ago, I started to have liver failure. My bilirubin was through the roof. My doctors and I discussed liver and intestinal transplants and I had to go to Georgetown Medical Center in preparation for this. While at Georgetown, the doctors recommend that I try another treatment. It would help me absorb more food orally so that I could lessen the amount of TPN I was getting, which might help save my liver. I had two doctors working to try to get me approved for the drug. The TPN I was receiving daily was much more expensive than original drug! But still, the insurance company would not approve the drug even with the doctors saying I would need a liver transplant instead. It took eight months for my insurance company to approve the drug. Once I finally started on the new drug, my liver slowly came back to full function. If I had had to wait much longer, my liver may have not come back.
I am a mother, daughter, and friend. I am trying to survive, and the insurance company looks at me like I am a number. My medication is a daily shot. If I were to stop it, I could possibly go right back into liver failure. I live in fear everyday of receiving notice that it is no longer approved for my treatment, and that I have to go back and fail on other treatments, or face more severe complications from Crohn’s. I was like a sitting duck, getting sicker and sicker waiting for so long for the medication I needed.
The provider/patient relationship is sacred! My doctors have saved my life time and time again and they know what medication is best for me to have. It shouldn’t be up to an insurance company to determine what will best help me. I plead with you to take action so that no other patients will ever have to go through what I have.
