Wednesday, March 30, 2011

Okay, One More

Update about the 17P situation that is. After I finally heard from my insurance, I was satisfied with a price for me of about $200 for the rest of my shots. That doesn't seem too bad until you compare it to the $100 I paid for Finley's whole 13-week NICU stay. Yes, it would be cheaper for me to just have this baby out now. That screwed-upness lies somewhere between the insurance company and Ther-Rx/KV Pharmaceutical, but I do not let the makers of Makena off the hook for their ridiculous pricing.

Fortunately, neither does the FDA. Just a couple days after my order for 1 $100 refill of 5 Makena shots went in (rushed), today I found that the FDA will be allowing compounding pharmacies to continue making the inexpensive 17P I've been enjoying for the last 10 weeks. That still leaves me and my insurance with paying those criminals at Ther-Rx for 5 shots, but I had to do what was necessary to keep this pregnancy safe.

But of course, life is never so simple. My last precious milliliter of 17P wound up being only .5 mL. That doesn't mean the pharmacy shorted me (of a $3.50 value! Oh no!), it just means that somewhere in the last 10 shots, .5 mL got lost in mixing needles or stuck to the sides of the vials. It's normal. And at $7/shot, I can afford little losses like that.

So even though I moved as fast as I could to make sure I'd get my shots, I'm still anxiously awaiting the rush shipment from my CVS/Caremark specialty pharmacy so I can make up for the lost dose amount. And hopefully not need a progesterone suppository, which my OB's office has threatened if I don't get my shipment before Friday. I'm just hoping that if I do need the suppository, it goes in the shipping and receiving door and not the, uh, emergency exit (for evacuation only). Are you as sick of my metaphor as I am?

So that's the story. The hope is that in another month, I will get my last 5 mL from the compounders at a totally reasonable price. I haven't called the compounding pharmacy to check up on it, but I can't imagine the hassle they've been going though between the angry pregnant ladies and the greedy pharmaceutical reps. In fact, I'm pretty sure that's a worse place to be than between rock/hard place, frying pan/fire, mama bear/cubs, bull elk/harem.

I'm not stressing about the situation much now, mostly because I'm wondering if I'm the only little girl who got the "don't get between a bull elk and his harem" speech.

For the record, after 2:34 AM tomorrow morning, I will be the most pregnant I have ever been: a full 25 weeks and 4 days!

Friday, March 25, 2011

Ha! Malfunctioning Body, Take That!

I've had a problem with early morning waking (my OB's words) for a bit over a week, and I thought I was going to lose it from lack of sleep. I mean, if you don't consider it already losing it to (a) burst into tears at no provocation, (b) lose further sleep because of stress dreams about being too tired to care for my child, and (c) only have a few hours during the day when I can track or carry a meaningful conversation.

I told my doctor about the sleeping troubles at my last cervix check. I mean LAST cervix check. No more ultrasounds or internal exams until delivery time, and I get to stop going in every two weeks for a while. Anyway, Dr. G prescribed Ambien. I took the stuff a couple times when I was on hospital bed rest. If you didn't know, when they dispense meds in the hospital, you don't get a bottle with a bunch of literature about how you might die from taking it. You just get a pill and a nurse to watch you swallow it.

Being an avid reader of boring things and especially packaging, I discovered some of the somnambulant activities Ambien may cause. Sleep driving. Sleep eating. Sleep conversing: like sleep talking but you can have a seemingly lucid conversation in which the other person may not know you're sleeping. Amnesia of all of your nighttime activities. And these aren't the worst.

And while I didn't have any issues in the hospital (at least I don't remember having any), I fear that my uncontrolled, Jekyll-ish, sleepwalking self might get me in trouble in some of the following ways:
  • Waking up Finley and feeding or diapering him in the middle of the night, and messing up either of these activities in a dangerous way.
  • Calling, emailing, or facebooking friends, family, and acquaintances.
  • Eating dairy and getting sick from it the following day.
  • Promising to help Tim with something important and then not doing it because of the memory loss thing. (Actually, I sometimes do this when I'm half asleep anyway.)
  • Driving myself to Target to look at baby clothes in my pajamas (underwear).
And there's always the possibility that my unconscious self will visit several all-night diners each night and eat all of their bacon. On the other hand, the idea of eating, drinking, and visiting the ladies' room while simultaneously sleeping sounds very convenient. At least I'd stop waking up starving and dehydrated (and therefore nauseated).

None of these exciting possibilities could be overshadowed by the possibility of not losing my mind from sleep deprivation, so short of having the hubs watch me for strange activity all night, I had to settle for a whole Unisom and a prayer that it wouldn't make me groggy until lunchtime the next day. It helped that I took it at 7 PM. While I still woke up every 4 hours to pee, I actually got back to sleep and had a full 12 hours. And didn't burst into tears the next day over having to leave the house.

It doesn't exactly fit my family's schedule or my preferred lifestyle to go to sleep at dinnertime and wake up before Tim leaves for work, but it does fit enough of my brain's idea of when I should be awake that we seem to have compromised in a healthy way. Also, it means I might avoid the possibility of accidentally videotaping my naked, pregnant T-rex impression and posting it to YouTube.

Sunday, March 20, 2011

Excuses and Why I Don't Need to Make Them

My son is one year old. His "adjusted age" for prematurity is 9 months. He weighs about as much as your average 6-month-old, and is probably as tall as a 9-month-old. He's starting to say a few words, wave to people when he's not feeling too shy, and instigate games with me and his dad—all skills closer to his actual age. He struggles with crawling, and that's a skill most babies learn around 6 or 6-9 months. He continues to be a lean baby (like the Baby Spanx baby!), and people say he looks like the Gerber Baby all the time.

And I love all of those things about my son. I cry a little every time he gains a new skill. I am not worried about his development; we work on his physical skills every day, talk and read, feed him plenty, and give him what he needs to learn and grow. I'm not worried about his size. He isn't stunted, just behind—is your kid ten times his birth weight at one year? I didn't think so. He's doing excellently, especially for someone born among the very earliest and tiniest preemies. But I don't think I need to say that all the time.

Strangers in public places like to comment about babies. It's not always their business, and it's often uncalled for, but they do it anyway. So many of these people say things about Finley's head scar, where he had two brain surgeries but, against the odds, needed no permanent drainage shunt and has healed rather beautifully. They comment on his size, asking if he's just a few months old. They ask me his age all the time, as if they needed to know. People without infants of their own really don't know what "12 months old" even means. They certainly don't ask my age (judging by the under-eye circles, 112 years).

And every time they ask the age, I say, "But he was three months premature. That's why he is so tiny!" I'm afraid people will think I'm starving him or something, and certainly people have assumed he came across his head scar violently rather than surgically (curse you, Harry Potter). I'm scared to death of all of these people judging me and my baby.

Then, a few weeks ago, I ran into a mother around my age pushing her son in a stroller through Costco. We stopped to talk, and I found out her son is about Finley's adjusted age. He was also much, much bigger and had eight little teeth, where Finley had not quite cut his first. And I made my excuses. Prematurity! I yelled, before anyone could blame my terrible parenting skills.

And then this mom said the nicest thing to me. "You don't need to tell people he is premature. He is perfect!" Another stay-at-home mom, attentive to her child's needs and what is normal development, called me out of my dumb excuses. Because my son is just perfect. He is a fine size, and he is strong, smart, and active. He is learning and growing. He is not average, and he is not the same as other kids his age. But all of these excuses I make for him are not for him at all. They're because I'm so insecure as a mom I have to explain away everything people might see as wrong.

What do I do now? I still make excuses probably half of the time. But the other half of the time, I finally do what I should do all the time, and should have done all along: I tell people my son's age when they ask, try to get him to say, "Hi!" like he does when he's in a good mood, and I let them think what they will. I don't need to make excuses. My son is perfect.

Saturday, March 19, 2011

Makena Update: Action Taken, Waiting on Results

Since my last post, I've learned a few important things about the Makena and 17P debate, and there are a few things that I wanted to mention.

First, another reason this drug price is ridiculous: low-income women are the most at risk for preterm labor, and will probably be most in need of the drug. According to American Pregnancy, risk factors for preterm labor include "low income . . . little or no prenatal care . . . lack of social support," and the list goes on, including being underweight or overweight. All of those conditions speak to preterm labor targeting poorer classes, meaning that first, the target market of the drug is probably the least able to pay such ludicrous prices, and second, that much of the payment will come out of Medicaid funding. And while I support Medicaid funds being used to help pregnant women, it feels like KV Pharmaceutical is grabbing for an unfair share of that taxpayer money.

Second, two US Senators are seeking an investigation into pricing and anti-competitive conduct by KV Pharmaceutical! This is the best news yet, since so far our only course of action has been to complain, and an FTC investigation could mean required change—I'm hoping that compounding pharmacies will be allowed to compound the same 17P that has been helping women for years.

March of Dimes declared success on Facebook when Ther-Rx came out with a statement on their website. The release didn't seem to even hint at a price drop. Here's their action plan:
We are scheduling meetings with key audiences – including payors and national organizations that are committed to the advancement of obstetric care and infant health. We hope to meet with them at the earliest possible dates to discuss and address all of their concerns. We are committed to working closely with all parties to develop and implement plans that will ensure that this important, FDA-approved product will be covered by the payor community and available to all women who are prescribed Makena at an affordable cost.

Specifically the part that says, " . . . ensure that this . . . product will be covered by the payor community," makes me think that Ther-Rx is going to "address concerns" by continuing to hold fetal safety hostage, but not to make mothers pay, rather to make insurance companies and government organizations pay their exorbitant price. Of course, that money doesn't come out of nowhere. It shows up in our premiums, in our tax rates, and in less funding for other important or necessary things in the Medicaid budget. That's not what we asked for.

So again, I'm calling for KV Pharmaceutical, or Ther-Rx, or whatever brand name they want to go by today, to LOWER THE PRICE of Makena. I was getting it for $7 per shot, and 20 weekly shots are usually prescribed. Sure, some people, organizations, or companies might be able to afford up to $30,000 per pregnancy for this drug to save babies, but nobody should have to, whether we're doing it as individuals or as a community!

*On a personal note, I was on Denver's ABC 7 last night for a spot highlighting this problem. If you are a pregnant woman affected by this, contact your local news and ask them to do a story. We need local and national awareness that this is a problem, to support the investigation those senators are requesting, and to hold KV Pharmaceutical responsible for their actions.

Wednesday, March 16, 2011

Makena & Ther-Rx: Where Saving Babies Meets Price Gouging

I am now over 23 weeks pregnant. In a couple of weeks and a couple of days, I will be the most pregnant I have ever been before. No freak water breaks, excellent prenatal monitoring, and a special drug called 17-alpha Hydroxyprogesterone Caproate, or 17P, have made heroic contributions. I want to talk about 17P.

The drug is meant to help prevent preterm labor. There are a handful of drugs that can stop preterm labor, called tocolytics, but these drugs can only reliably put off labor for a couple of days. A couple of days is long enough for a dose of life-saving corticosteroids to prepare a preemie's lungs for birth, but not long enough to save a baby for a woman who goes into labor before 23 or 24 weeks, or to give a baby a better chance at life by being born later.

Besides reducing risk factors, progesterone therapy with 17P is the only preventive measure against preterm labor for women with a history of preterm births. For someone like me, who has had preterm labor and delivery, and is currently carrying a single fetus, this drug is the only thing that might keep preterm labor from even happening. If I were to suddenly discontinue my weekly injections of 17P, minus the support of the drug my body might begin preterm labor again. And because of Ther-Rx and their new patent on Makena, that's exactly the possibility I'm facing in three weeks when my 17P prescription needs to be refilled.

Yesterday my pharmacy notified me that they would no longer be able to compound 17P for me, and my doctor's office confirmed that the same drug would now cost around $1,200 per weekly dose. When I bought my first ten doses of the drug at 16 weeks pregnant, without submitting the cost to insurance, I paid $7 per weekly dose.

A couple of weeks ago everyone was singing the praises of FDA approval for Makena, which is exactly the same chemical compound as 17P, which has been around for years, originally under another brand name, and then available generically. The only difference with Makena is that Ther-Rx will have it mass produced, while 17P has, in the past, been compounded by specialty pharmacies. Mine was compounded in the same town as my OB's office. With smaller batches made local to patients, 17P inevitably has variances in quality and efficacy. The claim with mass production is that everyone will get the same drug. Of course, we all know that mass production is no guarantee of quality, since we've all heard of drug contamination or efficacy issues with other mass produced drugs. Of course, if there's a problem in mass production, these companies are much more likely than local compounders to have deep pockets for a lawsuit, and they will have already distributed the product to women far and wide.

Anyway, I'm just not sure if there are real benefits to mass production, except that mass production should make the drug cheaper and more available. And yet, with the cost of Makena, the opposite is true. At $1,200 per dose (or more), only those with generous insurance or plenty of cash on hand will be able to afford Makena for the 20 weekly doses required to maintain a pregnancy to term.

Of course, if Makena is so expensive, can't people still get the $7 per dose generic? Somehow, no! Usually, drug companies are required to change the chemical composition of their drug in some way to re-patent it and make a new, more expensive competition for generics of their old drug. It's such minor changes that have turned birth control pill Yasmin into Yaz and then Beyaz (now with folate!), each with a new patent so the company has some time to exclusively produce the unique drug and recoup the costs of researching, developing, testing, and gaining FDA approval for the new chemical compound. Creating a new drug for public use is an expensive and long process.

But Makena, even though it is the same chemical compound as the 17P that has been around for years, received a patent that legally prevents the generic compounding of any other 17P. All women prescribed the only drug available to prevent preterm labor are now fully dependent on Ther-Rx for Makena, now the only form of the drug. I can't imagine how this deal was done, but I don't understand how a company can gain a patent on a generic already in use. Even if it were a new drug with a new patent, the generics should still be allowed, just like generic Yasmin and Yaz are available in spite of the recently patented Beyaz. In other words, this sudden monopoly reeks.

So though I have two or three doses of 17P left in my prescription vial, once those are gone I have no choice for the second half of my course of 17P but to buy Makena from Ther-Rx at more than 171 times the price, an astronomical increase from $7 to $1,200 per week, or at least $12,000 to maintain my pregnancy to term. Discontinuing 17P puts me back at heightened risk for preterm labor, and considering my complex history, that might be fine, or it might mean I go into labor shortly after my last dose wears off. Both my peace of mind and the safety of my baby are being held hostage at a steep price for any woman, let alone one with a young family and a bread-winner only two years out of college.

I am lucky to have excellent insurance. It comes at a high premium, but the coverage is generally great. Still, I'm waiting for the results of a benefits investigation that will decide whether my insurance will pay for Makena's ridiculous price. If it doesn't, we simply can't afford the price, and we won't qualify for low-income programs that have been proposed to make the drug more available. Even the half of the prescription course that's left costs more than 20% of our annual gross income.

But if my insurance does cover it, and I will have to take it because the safety of the baby I'm carrying is more important than even my own morals, I will have severe objections to my insurance company or anyone else paying such an exorbitant price. Ther-Rx's work was already done with the research and development of the drug when 17P was invented years ago—so the high price is for what, the new cheaper manufacturing practices? Someone's pockets are being thickly lined with the dollars of pregnant women at risk for preterm labor, who are often young, poor, sickly, or otherwise at a disadvantage. Preterm labor is an affliction of the lower classes—not exclusively, but largely.

We don't have much recourse when a patent has already been approved, but what can we do against a company so corrupt as to price gouge poor pregnant women by holding the safety of their babies at ransom? First, we can write to Ther-Rx (as March of Dimes did, though I'd use stronger language) at this address:

Greg Divis, President
Ther-Rx Corporation
One Corporate Woods
Bridgeton, Missouri 63044

But since I doubt this guy will listen to letters from people who actually care about the health and safety of babies, I say we make a giant PR problem for them. ABC, NPR, and other networks have covered the story (KV and Ther-Rx are just corporation/branding differences, same people), but if we can get this problem on TV and on every news site and public health forum, we might make enough of a dent in their image to make it worth Ther-Rx's while to lower to price to a reasonable level. Let's do it.

Thursday, March 3, 2011

Well That's New

I accidentally took a bit of a shower in the car wash today. We traded down to an older SUV so we could use what once was car payment money for baby preparations (and the crib I want is on sale this week!), and when securing the car for a wash today, nobody thought the sun roof might be open. That fantasy I used to have of bathing in a car wash with all of the soap sprayers and automatic rinsers almost came true, and now I have a rash on my arms from the detergent. Figures that a high-quality shower would have skin-irritating soap.

Wednesday, March 2, 2011


It is Finley's first birthday today. In fact, we just passed the very time he was born one year ago. I remember the days leading up - lots of labor through the weekend that was repeatedly stopped with multiple tocolytics including mag sulfate, which worked for a couple of nights until it didn't.

I had a dream the night before I went into labor that my regular OB saw me and told me it was a good day to have a baby. Of course, 25 weeks and 4 days pregnant is never a good day to have a baby, but it is better than the 25 weeks and 3 days that come before it, many of which had been narrow misses for me. I dreamed my little boy growing up in all of the ways a mother could hope for: walking, talking, going to school, even getting ready to leave home.

I had a normal day with normal bacon sandwiches and Nintendo DS and a fan on my hot, bloated face. I was prepared in the evening when the contractions started again, since they'd been coming nightly for a while, and in spite of medical technology's best efforts to keep my baby in (heck, my cerclage was more like 3 cerclages) the contractions didn't stop, got supremely painful, and eventually made my uterus uninhabitable. I was days away from the 26 week mark when the survival stats go up to 80%, but it might have been years away, because my body and that baby were insisting on a delivery ASAP.

So after I forget how many tries to keep me awake during the surgery, they put me to sleep, my baby was born, and neonatologists and nurses applied the fantastic advances of American medicine to let my baby breathe, and to make his heart beat. And it did beat. And with help, he did breathe. 12 hours later, when I finally met him, I was in love. Forget having the right hormones or being undrugged or immediate breastfeeding or everything going wrong. This baby was perfect.

And he is perfect today. Through my experiences I've met many other mothers of preemies, and mothers who lost babies. Some of those babies were born at Finley's same gestational age. The survival rate for babies born at 25 weeks gestation is 50%. Sometimes 50% is a lot. When I consider the odds of carrying Finley as long as I did, it seems huge.

But on days like this, and days completely unlike this, when I think with gratitude of the survival of my son, I think of the other mothers of babies born when Finley was. I think of J, who had a story so similar to mine. We had both lost one of IVF twins, and both, weeks later, delivered the next just days apart at identical gestational ages. Our babies often shared nurses in the hospital. When her sweet daughter passed away, I suddenly felt how unfair life was. How unfair 50% is. How earth is neither just nor merciful. After months (years?) of wondering why me - infertility, pregnancy complications, loss - I started to wonder why her?

Even when things are at their most terrible, someone is suffering or has suffered worse. We get to know the awful and the sad and the horrifying and the heartbreaking, but we never know the worst. The only being ever to know the worst was an innocent Jesus Christ, who suffered as guilty. A God who suffered as a mortal, and worse than any mortal could suffer. Being guilty, being mortal, I can neither suffer the way he did, nor expect to pass through life without suffering. Justice and mercy are here, and by them I both suffer and am saved - not from everything, but from the worst. When the time comes, there will be both justice and mercy in full. For me and for the mothers who lost their babies. For everyone, life will be truly fair.

Until then, on days like today, I wonder, "Why me?" To raise a son, and see him alive and developing and healthy at one year old is a miracle that no obedience or faith could have earned me. It is a gift no mortal can truly deserve. It's given to so many, and so many cry for the lack of it. God has his plans, and I do not understand them. So today, I weep with gratitude that I have a son, and that he survived and is alive. To be a mother is the undeserved gift God has given me (somehow me), and I can only marvel and thank and rejoice for the miracles that brought me motherhood, and for the miracles that have kept my son with me, alive, and growing.