To be or not to be a guinea pig

Many years ago, when I first started out on my adventures into the world of medicine as a patient, I had a very wise physician. He was a rare find. Before becoming a doctor, he worked as a pharmacist. Henceforth, he knew EVERYTHING about the drugs he prescribed. One of the very first things he told me was, "You do not need to be a guinea pig. If a drug does not have a generic version, meaning it has been on the market for less than 20 years, do not take it. Drugs are pushed very quickly through clinical trials. Side effects are unknown for many years. If a drug is at least 20 years old, the drug's side effects will be well known."

I have tried to always keep these words of wisdom at the forefront of my mind when prescribed drugs by physicians. However, when I do not adhere to my old physician's advice, things go very badly. Almost all the drugs in which I have had severe and sometimes life threatening reactions, have all been drugs which are less than 20 years old.

Recently a therapy comprised of three drugs was FDA approved which treats cystic fibrosis (CF). This new drug cocktail is being hailed as the life saving therapy for a disease which has few treatment options. I watched as many of my friends started this therapy. Almost all of them became significantly ill for the first one to two months, but then, miraculously, they started feeling better and seeing major improvements in their CF symptoms. One of my friends had an increase in her lung function by 15% in just three months! Now her need for a lung transplant has been placed on hold. Everyone was doing a happy dance. I kept praying there would be no adverse reactions to this new therapy.

On December 11, a precious ten year old girl received her first supply of this triple medicine potion. Within a day of starting the therapy, Kirabell was quite sick. On December 14, she was rushed to the hospital. Her health declined very quickly. To decrease the stress on her lungs, she was started on ECMO (extra-corporeal membrane oxygenation). The little girl's kidneys failed, and she began dialysis. Day after day, little Kirabell fought and fought to stay alive. Her kidneys slowly improved. On Tuesday, Kirabell's liver starting failing. Yesterday, she passed away.

 

One could wonder if this new CF therapy was the cause of Kirabell's abrupt health decline. I believe this to be true. This new therapy has only been on the market since late October. There is so much unknown about it. Unfortunately, when you have a life-limiting medical condition, there is a lot of pressure to try something, anything which may improve one's health. Sadly, the very thing you have put your trust in may be the very thing which kills you. Living with a chronic medical condition is one often fraught with many choices. To be or not to be a guinea pig--which one you choose may forever change your life, for better or for worse.


In loving memory of Kira Isabell Herlein.