I never used to pay attention to anything in the healthcare industry. As someone young and healthy with no medical conditions, I rarely went to the doctor and ignored drug commercials. That all changed when I met my husband. After we had been dating for a while, he let me know that he had been diagnosed with Ulcerative Colitis (commonly referred to as UC) when he was 20 years old, and it was not well controlled. My mindset quickly shifted, and I took on the role of a caregiver to someone with a chronic illness. Suddenly everything about the pharma industry fascinated me. I quickly went to find all the information I could on the internet, but it turns out there aren’t a ton of resources available to caregivers for this non-life threatening illness. It was frustrating, to say the least. The lack of resources directed toward caregivers of people with UC seemed to delegitimize their role as caregivers, like they are not even a part of medical decisions.

Luckily for my husband and me, my new-found fascination with the world of pharmaceuticals led me to Market Strategies, where all of my healthcare market research colleagues had seemingly endless knowledge about how to find deep information on diseases and current treatments, as well as treatments in development. I did some independent research on UC and discovered there were better options for my husband than what he was currently prescribed. With my encouragement, he found a more open-minded doctor who prescribed a new medication I had suggested. This new medication was a self-injectable. My husband is brave in a lot of ways, but shots are not his favorite thing. For this new medication to work, I would have to administer the shots. I went with him for his initial loading dose at the doctor’s. My presence at the medical office was viewed as normal, it seems a lot of patients are accompanied by caregivers. The nurse showed me how to inject the medicine and gave us some material from the drug manufacturer.

However, once we got home, it was clear that the manufacturer did not consider the possibility that someone other than the patient would be reading the materials or administering the injection. They did not acknowledge the role of a caregiver at all, which made me feel a little strange as I’m a big influence when it comes to my husband’s medical care. Even after reading the patient-facing materials, I still feel a little bit nervous when I give him his shot, even a year later. That part may come as a surprise to my husband, as I get the feeling he’s pretty confident in my ability. He has to be.

Continue reading →