My Baby is More Expensive than Your Baby

Note: In an effort to be "fair and balanced", I googled extensively to find postings or articles in support of the MOD and their support of this drug. I could not find anyone arguing for them. I also could not find a public statement from the MOD in response to the pricing, although it's been stated in articles that they did not know, etc, etc. I wanted to find a press release directly from MOD, to be fair, and all I found on their site was a press release from Feb 4, 2011.

The FDA recently approved Makena, a progesterone injection used to prevent pre-term labor in high risk women. This drug has been available for a long time through compounding pharmacies at a cost of $10 - $30/shot. The drug will no longer be available in the compounded form, instead people must buy Makena.

The catch is that Makena will cost up to $1,500 per dose for this weekly injection. The cost of preventing pre-term labor could be as high as $30k per pregnancy! Read more here.

I never used the 17P shots, but had we decided to have one more child, this would be part of my pre-natal treatment, given my history of premature labor (along with the cerclage). I don't know yet if insurance companies will cover this, and if they do - what is that going to do to our already stressed health care/insurance system? If compounding pharmacies could produce this for $30/shot, why does KV Pharmaceuticals need to charge $1500??? A rep from KV Pharma says that the cost needs to be "in light of the problems and the costs of premature births". The costs of premature births is going to skyrocket when people can not afford this drug.


Further disappointing news comes in the March of Dimes support of this move. Their reasoning is that it makes it more consistent and accessible to all women. Obviously a good thing. Their response to the uproar is that they had no idea what the price point would be, nor had they any input. I believe that. But wouldn't you ask before you supported something like this? And if you were really naive enough to think the pharmaceutical company wouldn't try to make an insane profit on this, wouldn't you come out with a statement against the pricing once it was known? I don't know this information first hand, just from reading blogs, but I've read that MOD has taken money in the six figures from KV Pharmaceuticals.

And honestly, while I was pretty secure in my decision to be done having kids, there was a small crack in the door of possibility - I hadn't completely shut it. Now I feel like that door has been shut for me. So I guess maybe MOD is carrying out their mission to prevent premature births. Because this drug is making it completely cost-prohibitive for women that are high risk to even try.

I expect this out of a pharmaceutical company. As slimy as it is, it's their job to make money for their shareholders. Is it morally bankrupt to do it at the expense of people? Sure - but that's not the business objective. The business objective is to return value to shareholders, and this company was near bankruptcy in the not so distant past. So even though I think it's gross, I get what KV is doing. I don't agree....just saying from a busines standpoint, I get it.

However, the FDA has a responsibility to the people of this country. And the MOD has a responsibility to prevent premature births. The support of Makena by both these groups is a total failure. I found this post an interesting analysis on the MOD involvement

While I am and will always be so grateful to the March of Dimes for the work that they have done, and what that means for my family, I believe this will be the last year I am supporting this organization. I'm also taking down my fundraising badge. I am drawing a line between my gratitude for their past accomplishments and a fundamental disagreement with where the organization is going today. I kept thinking I had to keep supporting them as a thank you. But I realize I can't ask people to give money to an organization if I don't believe in how they are managing their organization going forward.

Instead I will focus my efforts on local charities that are making a direct impact on our community and that I have greater faith that dollars I am giving are being managed appropriately.

It Takes 40 Weeks to Grow a Baby

Now, I think most people that read this blog understand the implications of prematurity, so I guess I am kind of preaching to the choir. But today I got into a rather uncomfortable exchange at work, and I just have to get it off my chest. I know people can't be expected to understand circumstances that they've never experienced. I know that. It's just hard to remember in the middle of a conversation.

Exchange in the ladies room at work with a lady I am acquainted with.
Me: "So when are you due?"
Her: "Really soon....well, six weeks, but really I am ready any time now."
Me (well, you're not really ready, and neither is your baby and if you delivered now you would have at least a week in the NICU and you don't really want that): "Well, two more weeks in would be good"
Her: "I just keep thinking I can't possibly get any bigger - and then I do!"
Me: "Yeah, I wouldn't really know.....my kids were early"
Her: "Oh you are so lucky! I hope mine's early too, with my luck I'll go past my due date"
Me: "Well, not lucky really. They were 27 weeks and 33 weeks"
Her: "Oh really tiny! But they are doing great now right?"
Me: "Yes, they are great." (but it hasn't always been great. we spent lots of time in the NICU. and there were brain bleeds, and staph infection, and learning to breathe and learning to eat, and constant stress over illness after coming home, and wondering if/when we would "catch up".....)

We're very lucky that they are "doing great" now. But not all preemies are. And we had to go through a lot to get to great. And I wanted more than anything to take some time to educate this pregnant lady on the risks of prematurity. There is a lot of work being done around prematurity prevention - but I think we are lacking education on the subject. I haven't really been in that position before - like I was today - where somebody was just so flippant about it - like being born early just isn't a big deal. My baby spent 82 days in the NICU. If an older kid, or an adult, spent 82 days in ICU - do you think people would shrug that off as lightly?

It takes 40 weeks to grow a baby. Embrace it. And if you can't embrace it, at least don't whine to me about it. I would gladly exchange the NICU for some stretch marks.

And if someone as vain about her appearance as I am can say that....well, that says a lot!

November is Prematurity Awareness Month

Did you know that November 17th is prematurity awareness day and that November is prematurity awareness month?? Did you know that after 82 days in the NICU, Gavin came home on November 17th, 2004? I get choked up just thinking about it!

In this month of thankfulness, I will always be the most thankful that the work of the March of Dimes gave us the chance to raise Gavin to be the healthy, spunky, crazy, smart boy that he is today. We are so incredibly lucky, but ours is just one story, and there are many others with less than happy endings. There is still a lot of work to be done.

Please take a moment to read the message below from the March of Dimes. And please take a moment to be thankful for all the children in our lives. Sick, healthy, full term, or preemie, more than likely you have been touched by the work of this organization.

Every year, more than half a million babies are born prematurely in the United States. The rate of premature birth has risen by 30 percent since 1981.

Premature birth is the leading cause of newborn death worldwide. Even babies born just a few weeks too soon can face serious health challenges and are at risk of lifelong disabilities. Premature birth costs society more than $26 billion a year.

In 2003, the Prematurity Campaign was launched to address the crisis and help families have healthy, full-term babies. In 2008, the March of Dimes Board of Trustees extended the Prematurity Campaign globally, and in 2009 the March of Dimes released the first global estimates showing the serious toll of preterm birth worldwide.

The March of Dimes works different channels of influence to reduce premature birth rates. One way is to raise public awareness of the serious issue and to invest in education of moms-to-be and health care providers. We also support medical advances and knowledge. Every year, new promising research studies are funded through our Prematurity Research Initiative. Advocacy efforts have opened the door to more federal funding for prematurity research and education.

The campaign is already showing signs of success, including a recent 3 percent decline in the premature birth rate. With more than 1,400 babies born too soon every day, much work is still to be done.

Find out how you can get involved by visiting the March of Dimes web site.

NICU Series - D-

Not to downplay a short stint in the NICU - we've been there with Sam, and it sucks horribly.

But really NICU series? Your first episode you show kids that go home in 18 days and 11 days? What about the people that spend two, three, six months in the hospital?

I don't think they hid or glorified anything, but I didn't get the feeling that the NICU experience was accurately portrayed. Even with Sam I had my low points - where was the mom hiding behind the curtain sobbing because her baby just won't take a bottle? Instead she put on a brave face for the camera and said she would learn to be patient.

They did throw in all the appropriate medical stuff - but during the head ultrsound they didn't tell the dad - or the camera that they were looking for brain bleeds - or what the potential complications from the brain bleeds could be.

The whole thing felt sterile. There are so many moments in the NICU -
Anticipation - every time I took the elevator up, knowing I would see my baby. Holding him for the first time. The day you walk out the door with him.
Fear - every time there is a set back, another illness, another test run
Excitement - with every good day, ounce gained, ml drank out of the bottle, O2 % turned down
Awe - of the Dr's, your child, and the miracle you witness daily
Panic - more often than anyone should feel
Worry - constant
And there's also funny light-hearted moments in the midst of it all that happen when you least expect them and you need them most

I thought I would be a basket case because I thought the show would bring me back to all those moments. And I'm disappointed that it didn't, because I don't think it did the NICU justice.

NICU series on Discovery Health - airs tonight

http://health.discovery.com/tv/nicu/

Tonight Discovery Health channel is airing the first in a 10 episode series about life in the NICU. I'm not sure what they will show - I imagine they will be showing stories of the smaller, sicker babies, and not the ones like Sam - while he certainly was a NICU experience, I'm not sure it would make for good TV!

I think my mom is the only one that really understands the ups and downs of the NICU, as she and Grandma Betsy were able to visit on a regular basis, and my mom was the one I called when I was a basket case - and happened to call me the day that Gavin got sick and put back on the vent which was one of the scarier days we had there. Anyway, if you want to catch a glimpse at what we went through, this is probably a good way to understand.

Will I watch? I'm not sure. It doesn't take much to make me tear up watching stories that involve preemies or sick kids on fictional shows. I'm not sure I could handle watching real families and real babies on this show.

I don't ever want to forget what we went through with Gavin. I'm just not sure I am sadistic enough to make myself relive it. I just really hope they give everyone the full picture. Gavin is probably the poster child for preemie success story - he's healthy, he's "normal", and we have no long term issues as far as we can tell yet. This is not always the case. There are so many children that started out with the exact same circumstances that for whatever reason do have lasting health or development issues. We are definitely the lucky ones, and I hope that this show portrays the full spectrum of babies and the issues that they face on an ongoing basis due to prematurity.

Perhaps then, people will realize the gravity of the issue and therefore feel the need to fund more research in this area. Realize that not all preemies turn out like the Gosselin kids, who appear to be just fine (parental situation excluded!).