Posted by Alex Jofriet on June 18, 2014
[Editor's note: Alex returns! And he is ready for insurance companies to consider patients' health and feelings before making coverage decisions.]
One of the biggest challenges for a patient and their family is dealing with insurance companies. While insurance companies help families pay for medical care, sometimes it feels like they deny coverage of medications and other treatments for purely financial reasons. A patient is not a number on a page, they are a person with a personality and feelings. Patients with IBD and patients with any other chronic disease suffer. They try to live a normal life while dealing with symptoms; and with the right treatment, they find something that hints at normalcy. When an insurance company denies coverage, patients face the stress of no longer having a treatment that makes them feel better. And the unnecessary stress could cause their disease to get worse.
I do not say this for any old reason; instead I say it because my experience speaks for itself. I am currently taking a medication which is not approved by the FDA for Crohn’s Disease or Ulcerative Colitis, but has shown good results in clinical trials. For this reason, my insurance company is denying coverage for this medication. My insurance company is suggesting instead I take two other commonly used medications that have been approved by the FDA. Well Hello insurance company! Check my file will you because I tried those medications and they did not work for me! My case of Crohn’s is such a severe case that I have tried all the pediatric accepted medications (including the suggested two medications) without showing signs of them working. However, this new medication has shown amazing results with me. I have spent seven of the eight years I have had Crohn’s without the benefits of remission. But now on this medication, I have been in remission for the whole year that I have been on it. While on it, I have gained 30 pounds, grown 4 inches, and had my ileostomy reversed. If that is not a success story for a medication then I do not know what is.
One of the only ways that my doctor has gotten insurance companies to pay for my treatments was by suggesting alternatives with greater costs. For example, when the insurance company rejected covering a special enteral kind of Pediasure my doctor proposed to them the alternative of a PICC line and TPN; only when faced with having to pay more money did they support coverage. Why must it come down to that?
Patients have feelings and insurance companies hurt them time and time again. How can we get insurance companies to think about the health and feelings of the patient before making coverage decisions? I think I speak for all patients when I say it is time for things to change.