Monday, November 28, 2005

Better Living Through Chemicals

November 3rd was the day. Exjade is the drug. Novartis is the company that created it. The FDA is the agency that approved it. The Haggis will hopefully be a person taking it.

It's--finally!--a pill that removes excess iron from your blood and internal organs. People such as my good self who have had multiple blood transfusions have what is called "iron overload." It's an unavoidable result of transfusions because the human body has no mechanism for removing iron. So when I get a transfusion I am not only getting the donor's red cells, I am getting all the iron that comes with it, iron that my body cannot use because it's already loaded from the last 50 transfusions. Iron that deposits itself in my internal organs and will, if not removed, one day shut them down: kidneys, liver and heart. Bam Bam Bam.

Kinda scary. But not scarier than the only available treatment for iron overload up until November 2nd: desferal. Infused under your skin on your stomach for 12 hours a day, every day, for as long as you get transfusions, which could be the rest of your life. And it doesn't work with an IV or a port. You have to--every single day--find a new spot on your stomach to put the needle into, which sounds all well and good until about Day 15 when you don't have any more available spots and you have to start reusing some old ones. Oh--and did I mention that one of the side effects is a raging irritation at the needle site? So you pretty much are jamming a needle back into already irritated and painful needle sites. Every day. 12 hours a day. Till they tell you to stop. (Oh--and it can make you deaf over time too. Super!)

You can imagine why I was holding out for either a mild kidney failure or the approval of this drug, which was created as a direct result of the US's Orphan Drug policy, which provides incentives to drug manufacturers who create drugs for diseases affecting fewer than 200,000 Americans. Thank god for the orphan drug act. Although temper the brass fanfare and cheering with the knowledge that the oral med will cost three times as much as the needle med, which already costs $5,000 per year.

So what can I say? I'm psyched to finally take care of the iron overload thing that I've been avoiding (hey--I'm not proud; I'm just saying), and psyched to begin my Mac and Cheese/Ramen Noodle diet to pay for the pleasure.

As Novartis giveth, so doth Novartis taketh away.


Jen said...

Rock on sister. Thinking about you.

Raine said...

That's good news. Although... something bothers me. Have the told you how it goes about removing the iron? The last thing you want is a kidney stone that points magnetic north.

Joe Tornatore said...

i did not know that about iron buildup. wow.