I have been chronically ill since I was 16 years old. As a now 23-year-old young woman, I was not prepared for the many burdens that come along with chronic health concerns, mostly burdens that have nothing to do with my health itself.
Of my many chronic conditions, I deal with a gastrointestinal disorder called gastroparesis. It affects my ability to digest food properly. At one point, I could barely eat due to vomiting multiple times a day. Earlier this year, I ended up in the ER and was prescribed a drug called Reglan by the ER doctor to try and get my symptoms under control. This helped briefly, but I would have to stop due to muscle twitching. My insurance covered that treatment.
After more trial and error, I finally found my current gastroenterologist, who prescribed Motegrity. They wanted me to try this drug because it has fewer potential side effects than Reglan and could help my overall digestive motility or the ability to have food pass through my digestive system. I was relieved to hear that there could be a treatment that could help me.
However, there is a catch. Motegrity is considered an “off-label therapy” for gastroparesis. The FDA approves it for the treatment of Chronic Idiopathic Constipation, but it is currently not FDA-approved for the treatment of gastroparesis. As a result, it became a battle of wills to get my insurance company to pay for it. The list price for Motegrity is $542 for a month’s supply. My doctor submitted a prior authorization, which was only partially approved. I was also able to get a savings card from the manufacturer. Those combined efforts reduced the price to around $150 per month. Even with the price reduction, oftentimes, it is unsustainable for me to get my medication every month due to cost. My primary care doctor has been able to give me samples of the drug. It is helpful, but when they do not have new samples from the drug rep that they know, I am stuck paying $150 every month for this drug. I am a college student who is chronically ill. While I do work, that is a large expense to add along with my other regular and medical expenses. It is hard to juggle and causes immense stress. It feels like getting my medication is dependent on luck.
I shouldn’t have to rely on luck and chance to be able to afford my medication, especially because my quality of life desperately depends on it.
If I do not take Motegrity regularly, my gastroparesis flares up and I become even more ill than I already am. I feel the effects within hours, and food gets caught in my throat and stays stuck in my stomach. I will vomit and become very ill quickly. It is constantly something I am thinking about.
Motegrity is a medication that is necessary to my quality of life, but its high price creates a major barrier to my ability to access it regularly. As a young adult patient, I am likely going to need Motegrity for many years, so its high price threatens my future. Takeda, the company that makes Motegrity, was one of the top 20 pharmaceutical companies ranked by 2022 profits. Pharmaceutical companies have been putting profits over patients for too long. We need affordable medications now.