Hypothyroidism sucks.You know that feeling when your eyelids are taking a trip on the Gravitron and your head is threatening to collide with anything in its downward path--a pillow, a wall, the steering wheel--and the rest of you just aches like the day after that first session at the gym? I usually get this feeling between 3-5pm for a half an hour. Now imagine (or remember) what it is like to have that feeling 24 hours a day for two weeks or more.
Post-thyroidectomy, this is what it is to be like without synthroid. I went into a lot more detail on the experience of hypothyroidism in my earlier blogs. While waiting for my RAI, deprived of synthroid, I had no idea that there was an alternative. No one said anything to me about taking Thyrogen. So my pre-scan experience was quite miserable.
What is behind the thyrogen shortage?Thyrogen is the medicine used to detect any remaining thyroid cancer (god forbid) in the follow-up RAI scans of patients. It is also the only thing standing in between thyca patients and zombification (I so did not even make that word up). This drug, exclusively owned by Genzyme, appears to be caught up in some kind of horrible monopoly scheme where the company artificially increases the demand by withholding or limiting the amount of thyrogen produced (I think this is called jerkonomics).
I am not 100% sure on this. It is just my impression based on what I've read. Don't get all litigious on me. But what is with all the shortages? I came across a bunch of articles on the 2010-2011 shortage when I was first diagnosed and wasn't even sure what I was looking at. I asked my endocrinologist if I had anything to worry about. He said no. But now, when I am calling to schedule my RAI appointment, I find out everything is being delayed because of the CURRENT thyrogen shortage.
I read an article on Salon.com that argues that these shortages are not limited to Thyrogen and that they are a reflection of the darkest side of capitalism. Essentially Mary Elizabeth Williams argues that drug companies are not making enough of a profit off of expensive life-saving drugs, and without this monetary incentive, are ceasing to produce them without any obligation to inform the public. Yikes! She includes a list of current FDA drug shortages. Big surprise: Thyrogen is on there.
I may have missed this day in Economics 101, but what in our capitalistic legal system allows Genzyme to hold a monopoly on rare lifesaving drugs? Ostensibly it is the Orphan Drug Act, but given that Thyrogen has been manufactured for more than 7 years and the fact that thyca is not all that rare, I don't think it qualifies. And Genzyme is not a company I want my life to be dependent upon. Apparently they use such questionable manufacturing processes as to be under investigation by the FDA, which sounds helpful, but is in fact further delaying our access to these drugs. They also do not appear to be above exploiting the people with life-threatening diseases, charging as much as $150,000 per patient per year for drugs without competitive brands.
Don't get me wrong. I'm quite grateful that treatments like Thyrogen even exist, especially when there were no options before. But something rings false here. Why is there so little media buzz about the current shortage? Has it been long enough for all the objections to die out, the sense of outrage? Did all the angry people get their supply? Or just curl up in a ball and fall asleep?
Genzyme issued this statement regarding Thyrogen's availability in 2012: "We understand that 2011 was a difficult year, and we regret that our constraints will continue in 2012. Genzyme is investing in increasing our manufacturing capacity, and working to reduce the time it takes to release Thyrogen from our facilities."
Is it just me or does it seem like they are pointing fingers? Specifically at the FDA for hassling them? Maybe it is all my built-up anxiety talking, but this is scary stuff. It is bad enough being drug-dependent for life. What if that drug gets taken away? What if we lose whatever is protecting us from having to pay limbs for that drug?
For me, the worst thing about cancer would be to give in to that unavoidable feeling of helplessness. I like feeling in control. My mother is always telling me to "give my problems over to God." The first step in addiction recovery is to admit that you have no control. I guess it's a matter of perspective.
You have cancer. Your life is no longer in your hands. Do you embrace this or run away?
Sidenote: On the official Thyrogen website, the first words to prospective patients (people diagnosed with thyca) are "you are not alone." Does anyone find that comforting?? I mean sure, you don't want to be the ONLY person in the world with a singular disease that no one has bothered to diagnose or treat or even name, but I find the fact that there are so many of us rather disturbing. A great many people get in car accidents too. Try taking comfort in that the next time your car takes on those stupid yellow poles at the bank drive-thru.