Monday, March 21, 2011

A For-Real Serious Post, Seriously

All right. I have an actual ethical dilemma to sort out, and I'd appreciate your (collective) thoughts on the matter.

Let's talk about the March of Dimes for a minute. You all know that the MOD is all about the preemies, right? They help promote and fund research to help preterm babies and to prevent preterm births. Okay. So, for many decades, obstetricians have used progesterone (a hormone naturally present in women's bodies during pregnancy) to help pregnancies along -- for reasons I'm ill-equipped to explain, it seems to help first trimester pregnancies stick, and to prevent preterm labor in the second and third trimesters. So this company, KV Pharmaceuticals, branded their own progesterone and got FDA approval to market it, under the name Makena. And guess what happened? Can you guess? The cost of each shot went from $10 to $1500. FIFTEEN HUNDRED DOLLARS.

Here's what that means for someone like me. If I were to successfully get pregnant again (this is a for instance -- don't go getting all wound up, people), I would start receiving progesterone treatments starting at week 15 or thereabouts. I would get them for the rest of that pregnancy. If I were to go as close to full-term as they'd let me (about 36 weeks, thank you two previous c-sections), that's about twenty weeks of progesterone. Which now would cost $30,000. $200 last year, $30,000 as of last week.

Why? Because the FDA cannot control the pricing. And under the FDA's orphan drug laws (meant to promote research and development of treatments for rare diseases and conditions), KV has a seven-year monopoly on progesterone. They apparently can sue any company that mixes a generic version of their drug (which has not been patented, but they've been sending out cease and desist notices to companies that have been mixing non-Makena progesterone for years).

What on earth has this got to do with the March of Dimes, you ask? Well, turns out KV (actually Ther-RX, the subsidiary that will market Makena) has donated loads of money to the MOD. And guess who praised this new drug? Go on, guess. That's right! The March of Dimes! Surprise!

So, here we are. And it just so happens to be the time of year when people (like my awesome sister) start putting together teams to do the annual March for Babies to raise money for research on prematurity.

I was all set to walk this year for Jane. And now this. I am really uncomfortable with raising money for an organization that would make such an ethically questionable alliance. And yet, I know that the March of Dimes does good work in helping babies like Jane.

Many of you donated money to the March of Dimes in Jane's name. What do you think of all this?

There are many, many places to go to read more about this. Here are a few sites and articles:


Cate said...

oh, man. that is tough.

I have a knee-jerk dislike for any kind of "a-thon" lately. So much money goes into the event..I don't know, it seems like it would be better to just give a cash donation, quietly, to the organization(s) you (or anyone) wants to support than to publicly fundraise. I think that for everyone, not just your particular dilemma. But that pricing is just criminal.

Cindy said...

I say: Walk for Jane. Run for Jane. Bake for Jane. Write for Jane.

If the March of Dimes helped you, then I'll send them money.

Corporations such as these KV foax occupy a rare, spare, secret place in our world. They aren't going anywhere. Any avoidance of MOD or a walk-a-thon will have no effect on them or their prices. They will continue to do what they want.

So ignore them.

They charge the health care companies those prices, right? People with health care would pay a co-pay.

Under the new federal healthcare law, if we can keep the damn thing, this kind of shot will be covered.

It is also covered under Medicaid.

So, Walk.

If you do get pregnant, get the shot.

If you need donations, call me.

(set up an online donation thingie for the walk-a-thon if you can).

AG Ambroult said...

INFURIATING! I get all twitchy when I read about drug company monopolies.
But as for the March of Dimes, I dunno. that's such an interesting conundrum. If you do choose to walk, do it for Jane, and then make your feelings known to the MOD about this alliance they made by way of a well smart, well written letter.

If you choose to skip it, you have a very good reason. Don't feel like you owe something to them. There are plenty of other organizations you could support in "thanks."

Anonymous said...

You can do two things simultaneously. They can be in contradiction and still be true. So, if walking for Jane feels good to you... do it. And, if you want to let MOD know that you feel tension about their choice to align with a big business who is making it harder and more costly for real people, you can do that too. Or, skip it, and do something else for Jane (which we all know you do all the time) that feels right to you. And, let MOD know why you did not walk or don't. You don't owe them anything. Just be true to wherever you are at that moment. Whatever you decide, know that it is the 'right' thing to do...
Rachel C.

Karen said...

Wow, that is an awful thing to happen with that Progesterone shot. I had fertility issues and had to take progesterone in my first 14 weeks of my pregnancies but I took a bio-identical thingy made at a compounded pharmacy that was inserted vaginally. I would have been plenty pissed if that had been taken away because of a ruling like this.

Ah, .. the charity conundrum. A newspaper here in Toronto has made it a major issue in the last few years to investigate charities and how they are spending their money and what they are actually doing. Some of the stuff is shocking and some major charities got taken to task. I had a similar conundrum when I found out that Toronto's Hospital for Sick Children charitable foundation paid its fundraising director more than the CEO of the hospital and in fact paid him $2.7M in a golden parachute when he left. I love SickKids's an awesome place and they do amazing research and great work there. I have a monthly donation going to them. I was torn as I really disagree with them paying the foundation executives this much money. I mean, really??? $2.7M of donated money?? Steve was furious and basically investigated all of his charities and narrowed it to 2 that he still supports (The Food Bank is very efficient - they get alot of my husband's money!). I still support SickKids though. For me, I had to spend some time looking at what they do overall and whether their overall impact outweighs the bad. I still think they pay the foundation executives too much (400K for the director now) but they do direct ALOT of money to their research. In the end, it was my gut that said I couldn't stop.

Maybe you need to take a look at MOD holistically and see if their overall works are enough for you to continue to support them even though you disagree with this.

Good luck with your decision.

bright said...

The kos link seems to say that the price hike is not a done deal, so I don't think that should stop you from walking if you really want to. FWIW, my senator Sherrod Brown has been threatening Congressional action if they go through with it.

On the other hand, if you're trying to make a decision about supporting the charity itself, MOD gets 1 star (out of a possible 4) from Charity Navigator.

Jennifer said...

In the news today - the FDA has said that compounding pharmacies are free to continue making the low cost version!!