thinking it all through

The possibly traumatic increase in the cost of progesterone shots to prevent pre-term labor has gotten me thinking. This community can do something, we will get through this, and if there is any good in the world we will come out certain that there will be better chances for babies’ lives and health.

Last night, after a wonderfully long day with Samuel and Josh, a couple of hours after we’d put Samuel down to bed, I went into Samuel’s room and looked at him. I thought about how he peacefully he slept, how big he is, how easily he breathes, sees, runs, speaks, and learns. I thought about our long day yesterday running around in the sunshine, digging in dirt, eating ice cream, playing on our balcony. I saw him a little differently last night, as an exception not just because he’s gorgeous and funny, but because he’s so blissfully alive and unaware of what it took to get him here. I looked at him and thought, if not for that progesterone, none of this might be happening. He could be dead, struggling, or suffering through his life.

The truth is, when I think about preterm labor, I think most often about Natan, and how he’s dead. I think about children I know who were born prematurely, and the struggles they’ve gone through that either permanently affected their lives or made their first year very difficult. Samuel has no special needs resulting from his birth and gestation because we had special care while I was pregnant, so I neglect to think of him as having a place in the spectrum of pre-term labor’s effects.

I looked at Samuel last night and thought, I cannot bear to let the care we had vanish into the ether because of greed and injustice. There are women out there right now, 13 weeks pregnant, not pregnant at all, 24 weeks pregnant, about to experience what I did with Natan. I cannot think that their options are vanishing or being priced out of their reach.

In the past few weeks we’ve seen so much going on to restrict women’s access to pregnancy-ending medical procedures. I find it mind numbing that at this same moment, the FDA, is allowing something to happen that might restrict women’s access to pregnancy- saving medicine. I don’t want to start a hyperbolic argument over choice. I mean it seriously, do we respect pregnancy or not? Would reasonable and compassionate anti-abortion activists get behind fighting this? We need a conversation in this country about supporting prenatal care across the board, one that does not demonize women.

K-V Pharmaceutical Company insists that Makena, the commercial replacement for the progesterone I was given from week 16 to 36, will be available to all women who need it [Read about this here]. As Tash pointed out in my comments, women might face complications in being determined “elgible.” If what K-V says is true and the process is done equitably and wisely, I suppose it’s not a disaster. I don’t know what all these conditions mean, whether women who need it will be denied or whether the process will be horribly cumbersome and stressful for women who have already suffered. I want to know.

Right now, we’d fall in the category (what does “are eligible for copay assistance” mean?) of insured but earning under $100,000, but what does it mean for people who don’t? I’m generous enough to realize that if you make $100,000.99, a $30,000 drug is not nothing, and I wonder about uninsured people between $60,000 and $100,000. I’m suspicious of an application process. I want to know exactly what this change is going to mean.

I am trying to think about what to do, who to contact about this. I am going to start tomorrow morning with my new doctor. I’m afraid to call my insurance company. I’ve written letters to my Mississippi senators and representatives, and am thinking once I know more I’ll have my family in a state with more political balance write to their senators. I might write to Ralph Nader’s group, Public Citizen.

I guess this post is a request for help and advice. How should I read and understand the K-V announcement (linked to again here)? What does it mean? Who can we contact and where do we start to make sure this doesn’t hurt families and children?

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2 responses to “thinking it all through

  1. It was interesting to me to read your post about progesterone. I am a nurse and recently took on a home care case. The child was a 23 weeker, and just came home, at a year of age, with a ventilator. He is severely brain damage and does not see or move. Mother is pregnant unexpectantly and is now 19 weeks. She has not yet received medicaid approval for the progesterone shots. She walks around on eggshell, terrified of going into labor and having another 24 weeker. It is so sad.
    I’m sorry about your Natan. I had a stillborn son 18 years ago. The sorrow never truly leaves.

  2. Oh Cathy, That is terrifying. I wish I knew some way to help her. This is so frustrating, not being pregnant right now, I have time to figure out the system and to know if 17P shots will be doable. But this came at a disastrous time for so many women. I guess I’ll try prayer for her.

    Thank you for your kind words about Natan.

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