I’m on drugs!
As of yesterday morning I’m taking something called Gilenya. Sometimes people have some side effects right after the initial dose of the stuff, so I had to spend the day at the hospital yesterday, getting my blood pressure checked and my pulse taken. But everything is fine.
More than fine, in fact. When I was first diagnosed with MS, one of the things that was most frustrating is there are no approved treatments for the kind that I thought I had. Looking more closely at my version of the disease revealed that some aspects of it may actually respond to treatment. So being able to take a disease modifying drug is a wonderful position that I didn’t expect to find myself in.
I decided to start taking Gilenya a few weeks ago, and it became clear pretty quickly that this is some serious medicine. For one thing, I had to have my eyes checked by a neuro ophthalmologist first, plus some blood work, plus an EKG at the beginning and the end of the day yesterday. Also Novartis, the company that makes it, gave me a nice person named Chelsea who I can call any time if I have questions. AND they sent me two tote bags and some pens. AND these pills are packaged up like Christmas.
You can bet that if Novartis is sending me tote bags and pens and presenting the pills like some kind of cherished objects (which they are), it’s probably a little more expensive than aspirin. I’ve read and been told that for people who don’t have any health insurance, this medication costs between $40,000 and $60,000 a year. That’s the equivalent of a year’s salary for plenty of people. And obviously you can’t spend a year’s salary on your medicine.
I think Novartis has assistance programs, they’ve worked well with my insurance, and they’ve been extremely helpful and informative to me. I feel very safe in all of this. So please understand that I don’t mean this to be a comment on any company. I’m not knowledgeable enough to make a judgement on drug pricing practices or a whole political argument about healthcare costs. There’s plenty I don’t know here.
All I want to say is this: if I didn’t have really good health insurance, I may not be able to take a drug that I believe gives me the best chance of staying healthy. Breaking it down farther: for some people, money may mean the difference between walking and a wheelchair. Or between life and death.
I knew this before, obviously, but it’s very real to me this week. The next time I see healthcare issues in the news, it’s something that I’ll continue to hold close to my heart. I suspect that others who have found themselves or their loved ones in my position will do the same. Funny how quickly it all gets personal.