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?

More right and wrong in the story of Progesterone

One of the Senators from the great state of Ohio has spoken out against the unspeakable behavior of KV pharmaceuticals. Time wrote about it today. I know what you’re thinking: John Boehner!? Ha no. Sherrod Brown, obviously. I wonder if Boehner would cry over this story?

Our government representatives at all levels ought to be infuriated. According to this story,, much of the funding for studying the effects of Makena came from the government. So, taxes paid for this drug and now this corporation is going to profit off of if.

By the way, news reporters, most babies born early die. Severe disabilities are tragic and deserve society’s attention, and I’m not playing pain Olympic games here, but let’s be accurate in discussing premature birth. Funny how even in this barrage of discussion about prematurity’s risks, the most common story from it is still invisible.

making money off of misery, or the skyrocketing price of fun drugs for pregnant women

I am so angry I am probably being too public right now. I’m certainly emotional and possibly unclear. Oh well. We need faces for this cause.

It seems that the shots I had during my pregnancy with Samuel, synthetic progesterone to prevent preterm labor, are going to increase in price from less than $20.00 per shot to about $1,500.00 per shot. How terrible does that sound? Well it’s even worse when you consider that a pregnant woman needs the shot 18 to 20 times, from week 16 to week 34 (or 36). So instead of about $360ish dollars to prevent preterm labor, it will now cost about $30,000.

In the interest of full disclosure, actually, I think my shots were $90 a pop, because the insurance company demanded an office visit for each, so I cost about $2,100. Something like $75 for the visit, $15 for the drug. If the shots had cost $31,800, that’d have been a lot of their money not going elsewhere. Someone’s prices somewhere would have gone up.

A subsidiary of a St. Louis company, KV Pharmaceuticals, has gotten exclusive permission from the FDA to make and market the drug for the next seven years. The drug, though, has been around for years. I know there are benefits to FDA regulation. I know research and controls are good things. I’m a liberal, damn it. This decision abuses the system, and makes a mockery of government and medical integrity.

Here’s a source: The Wall Street Journal. And another one: NPR. And wow, lookie here: Fox.

Would I have given $30,000 to keep Natan alive? Certainly. Although I’d have had to max out a credit card or two. Or maybe rob a bank, or I don’t know, a pharmaceuticals executive to do so. Would Samuel have been worth that expense? Yes, obviously. But it’s not necessary. Clearly, I had and have insurance. I don’t know what present insurance company would do. Is it right to gouge those companies’ funds in this way? No. Not that my insurance company is an epitome of fair and ethical behavior either, but it does cover a lot of suffering people. I’m pretty sure that $30,000 could help a lot of cancer patients, buy a lot of Viagra, and ease the suffering of many asthmatic children. It could also help save a whole lot of unborn babies.

A lot of families will spend that money to save their children. A lot of families will simply not have another child. Probably, some families will pray that their first bout of preterm labor was a fluke, and more babies will die. Of these things I am sure.

I didn’t do a whole lot of cost-benefit analysis in my pregnancies. I didn’t even ask what it would cost (we had phenomenal insurance). But then, Samuel’s life would have won the debate anyway.

If our insurance company hadn’t paid, well, we’d be looking at an even longer time until we’re out of debt and in a house we own. I’m just glad we don’t have debtors’ prisons. Bankruptcy upsets me less than dead babies.

So the drug company’s justification is that babies born preterm spend a lot of time in the NICU and cost a lot of money. Yes, they do. I have additional reasons for not wanting children and families to spend a lot of time in the NICU. So their claim is that this change will save money. Guess what? It would save even more money to charge a fair price for this drug.

Not to mention, as we often forget, babies born preterm also die. I also like when families don’t spend time in graveyards at tiny plots. Graves for infants, by the way, often come free, but the gravestones cost extra.

A week ago tomorrow morning, I sat in the office of an OB/GYN. I am not pregnant, and have no plans to become so. But I thought, we’ve moved to a new place. These are new doctors, and if we decide to try again, I’d like a relationship and a plan in place well beforehand. I told a very compassionate and supportive doctor my story. Labor with Natan at 24 weeks. The days and days and days in the hospital, on my left side, flat or even tilted a bit backwards. Tremendous physical pain. Indocin. My crashing blood pressure. Birth. Death.

Then my pregnancy with Samuel. A cerclage at 14 weeks, progesterone shots beginning at 16 weeks. We made it to term. This blog details the misery of that second pregnancy, the fear and stress. I did not go into preterm labor, and it was actually a healthy pregnancy. The cerclage was very much prophylactic. My records don’t read like I had an incompetent cervix. I believe it was the progesterone shots that got Samuel to term. So does every doctor who has read or heard my history.

He said if I became pregnant again, we would do the exact same thing we’d done when I was pregnant with Samuel. I left happy.

I can practically see the dollar signs in pharmaceutical executives’ eyes and hear the ch’ching of their cash registers now. Don’t count your chickens before they’re hatched, KV Pharmaceuticals chief executive, Mr. Divis. Or rather, don’t plunder mine.

[I have written to my wonderful Mississippi senators and representatives for help. I’m not holding my breath.]

Oops, I forgot to thank my friend Tash for bringing this to my attention.