Thursday, June 08, 2017

Medical Covfefe

Due to Benjamin's spontaneous premature delivery, I'm a marked woman. I fell into the high risk category with Zoë and I'm high risk this time around as well. There's no way around it, really.

With Zoë they had me take 17P, a progesterone injection, to help relax my uterus (which can be quite cantankerous) and convince my body not to go into labour. Under its patented name, Makena, this injection is quite cost prohibitive—about $1000 per week for about 20 weeks!

(If you looked at that link, you'd see that each injection is only 1 mL, which costs only (haha) $767.98, but they send you an "extra" fifth mL in each monthly shipment just "in case" you mess up a dose, so it winds up being more expensive due to the fifth dose you aren't using every four weeks).

I have consistently had private insurance but my insurance wasn't willing to cover this medication with Zoë so we applied for medicaid, and medicaid covered it, and Zoë was born healthy at full term. Hooray.

Still, the whole story behind the cost of this medication makes me fuming mad.

According to the New York Times, 17P was "first approved by the Food and Drug Administration in 1956, it was manufactured by Bristol-Myers Squibb until 2000; now [prior to 2011] the only makers are compounding pharmacies, which charge $10 to $20 per injection — $200 to $400 for the drug’s 20-week course."

Obviously 17P had been around—and in use—for decades and since there was no patent, compound pharmacies were free to mix it as they pleased. However, there's some "Orphan Drug Act," which, "provide[s] seven years of exclusive sales rights to manufacturers who win F.D.A. approval for drugs that affect fewer than 200,000 people," and on February 3 of 2011, a company was able to do just that.

Soon after the company "announced that the price for Makena would be $1,500 per injection, or $30,000 for an entire course," which was an absolutely immoral price hike in my opinion.

Later—due to public outrage—they lowered the cost (to what it is currently) and made a vow that any woman who needed the shot would be able to get the shot, regardless of ability to pay, which, I guess, was kind of them.

When I went in for my very first appointment—in the middle of March—to date the pregnancy, my doctor and I discussed the need for 17P. Knowing that there would be a huge battle with my insurance, I applied for medicaid once again because, uh, we can't afford to spend $3,807.90 on one medication every four weeks (raise your hand high if you can). We should have qualified quickly for medicaid but there was some "technical glitch" that had to be sent to the state level to be resolved and so, long story short, my application has been living a posh life as a "help desk ticket" for about ten weeks.

Ideally I would have begun this treatment at week 16, which was about a month ago. The latest I can possibly begin the treatment is at 20 weeks and 6 days, which technically gives me about a week to finish working things out.

I have been working hard to get things ironed out for weeks.

My doctor's office neglected to have me sign the paperwork needed to petition my private insurance for coverage—paperwork I didn't know needed to happen.

They called me on Zoë's birthday—shortly after I broke my toe—and asked me to come in right then to sign the papers. I hyperventilated to them that "now's not a very good time." And instead went to the urgent care and I told my OB/GYN that I'd be in to sign the papers that Thursday.

In the meantime, I called the manufacturer "care connection", because you can apply for financial assistance...but only if your private insurance denies your claim and if you are unable to get government assistance.

They called my doctor's office to get the ball rolling but were unable to do anything because, as it turns out, my doctor's office had me sign the wrong papers. Evidently there are "new" forms and I was given the old ones to sign so they couldn't do whatever they had to do with my insurance company because of the mix up of the forms.

Andrew had taken the car to campus that day due to rain, so I told them that I wouldn't be able to come in, but when I texted Andrew about it he hopped in the car and came home so I could go to the clinic to sign the papers because time waits for no man and we had deadlines. My due date wasn't budging, that's for sure.

So I went in and signed the new form, which they promised to fax off right away.

At my next appointment I learned that the form had never made it to Makena. It had been misplaced. So I had to sign another form. I was a little caustic with the nurse when I explained that this was my third time signing the form and that I was 18 weeks and three days already and was beginning to worry that if anyone dropped any more balls we'd have a premature delivery on our hands...again.

She assured me she would personally follow the paper to the ends of the earth (or all the way to the fax machine) to make sure it made its way to the right place.

When I got home I called my Makena "care manager" to make sure this had happened and it hadn't...yet...but she called me when it did finally happen, and when it did the epic battle with my insurance finally commenced.

17P is not covered by my insurance, which I already knew, but the contracted pharmacy had to negotiate with them anyway and I learned, finally, today that my "special contracted rate" would be only $3200 for the first shipment. Awesome. That's only $800 per week, which is so much better than $950 per week (yup).

Obviously we can't afford that either, so I called my care manager back and told her what my copay was. She asked me a few questions regarding my residency status (yes, I'm legal), my pregnancy status (yes, I've delivered a preterm infant in the past), and what our annual income is (about on par with the sticker price of this medication, actually). She then informed me that she should be able to offer it to me for $25 per shipment.

In the meantime, while we're jumping through the final few hoops, an "emergency dose" was overnighted to my doctor's office and I will get my first injection tomorrow, at 19 weeks, 3 days.

After weeks upon weeks of me agonizing over this and trying to get my pharmacy and my doctor's office and the drug company and my insurance to play friends, everything clicked today just. like. that.

To say the very least, this is mind-boggling. My mind has been boggled.

I spent hours on the phone, cumulatively, between insurance and Makena Care Connection and CVS and my doctor's office and medicaid. Literal hours.

Andrew went so far as to write to our state senator, urging him to expand medicaid and not make people wade through whatever fresh layer of hell this was (Dante didn't cover the American healthcare "system" so I'm not really sure where it fits in). And the senator's office responded!

Meanwhile, in other parts of the world...

A Canadian friend of mine recently had surgery—a surgery she waited months for. It was a necessary but not emergent surgery (I suppose "semi-elective" is the term). About a month or so ago she vented on Facebook about having her surgery date be bumped again, but added that she really wasn't too upset about it because she knew the reason she was bumped was because someone else had a bigger need than she did and she was happy to give up her spot for them.

Because, see, medical professionals are in charge of weighting the lists. They are in charge of bumping patients ahead or behind. And they do it based on need, not on ability to pay.

Another Canadian friend needed a heart surgery, which her doctor scheduled for months out because, again, it was not yet emergent. In the meantime she had regular doctor appointments to assess her health and she ended up having surgery months ahead of schedule because her doctor determined that she needed her surgery sooner, so someone with a lesser need was bumped down the list.

Yet another Canadian friend wrote this week that she "was wonderful the Canadian Healthcare system is," when she woke up with chest pains. She had reason to worry because although she is young she has a few chronic health issues, so she rushed off to the ER. "Besides my health," she wrote, "My biggest concern was how good [my daughter] would be for her daddy getting her ready for school."

She continues, "I got there at 7:40. I was triaged almost immediately. I was in a bed within 10 minutes. It's 11:10 and I am home after confirming [it was something that could be cared for with my primary care provider]. I had emergency blood work, and an ECG, and an x-ray." She left "with a diagnosis, a treatment plan for the week, and...a [scheduled follow-up appointment] with my family doctor for the end of the week to ensure this small problem never becomes a big one."

And, here's the clincher, she "paid $0."

That's a lot of Canadian examples. I'm not saying that the Canadian system is the best system; I simply happen to have a lot of first- and secondhand knowledge of the Canadian healthcare system. One of the perks of being Canadian, I suppose.

I understand that there are flaws with socialized medicine. I understand there are "outrageous" wait times for medical procedures in countries with socialized medicine. And I understand that socialized medicine is not "free." But, honestly, we can't point a finger to the few places where socialized medicine is imploding (I've seen Greece mentioned multiple times) and ignore the many places where it is working (see: pretty much every other developed nation in the world).

If I had to choose where my tax dollars get spent, I would choose a form of universal healthcare over a multitude of things that our tax money gets wasted on here in the states. Seriously—look it up if you don't believe me—Canadian tax rates are about on par with American tax rates. But we get to have epic months-long battles fighting for a simple medication which our doctor says is necessary, but which no one wants to pay for—not the private insurance I pay for, and not the government I pay taxes to—and which we lack the ability to pay for because drug companies jack up the prices to astronomically high levels, on top of paying taxes already.

Something has to change because the medical system in this country is a joke. (Just like a few other things I could name...)

This past week an American friend's son woke up with a killer stomach ache. But it was a Friday night and she didn't want to rush him to the ER for a stomach ache—that's a $100 copay! So she told him to suck it up and she'd take him to the UrgentCare Clinic in the morning. But, oh snap! His appendix ended up bursting and it was a much bigger problem, which ended up in an ER visit anyway, and then a several-day stay in the hospital (all of which could have been avoided by just going to the ER anyway gotta admit that $100 is a pretty penny to spend to have someone tell you to take Pepto-Bismal if it's just indigestion).

We should not be making life and death decisions like this. We should not be wrapped up in battles over coverage and finances when we are desperately ill or dying—or even if we're just pregnant and are trying to live our life (and get ready to move across the country). There is a better way.

I thought that was the end of my rant, but I was wrong because what is with "waiting periods" for insurance. How ethical is that?

I mean, you can leave a job with insurance for another job also with insurance but end up being uninsured for up to three months while you're waiting for your new insurance to kick in.

And don't get me started on the hassle of moving across state lines. You can't take your old coverage with you. It ends pretty much immediately. But then you have to find new coverage?

I'm going to drag Canada into this one more time and say that although their medical system varies province to province, if you happen to cross a provincial line, the former province is required—by law—to continue your coverage for three months while you are going through all the proper channels to secure residency and get your coverage established in your new province. Thus, no insurance limbo worries.

I'm lucky my treatment is only for a few weeks and that it "only" costs $1000 per injection. My brother-in-law is on a clotting-factor that easily prices into hundreds of thousands, if not a million, dollars, annually. And until the Affordable Care Act arrived on the scene he was unable to get private insurance due to being deemed a "preexisting condition." I won't get into the drama of maintaining state-funded insurance because that also makes my blood boil.

All I'll say is we have a serious, serious problem in this country—a crisis, even. It's not good and it's baffling to me whenever anyone mentions anything about it being "the best in the world," because what a load of propaganda. Sure, we publish "the most" scholarly articles on medicine, sure we do "a lot" of research. I'm not saying America doesn't contribute to global health with medicinal breakthroughs. That would be ludicrous. But to say that our healthcare system is "the best" would be equally ludicrous, and I fully believe that if we adopted a universal healthcare system and that impacted our ability to research and develop new drugs and medical procedures or whatever, there are many other players around the globe who I'm sure are willing to step up and fill that role.

Let's stop the medical covfefe and get some actual medical coverage in this country!


  1. Amen and Amen! Sing it, sister! I am grateful every day for the absolutely fabulous insurance that we have with DMBA. And every day I am also feeling so guilty because so many people do not have this good fortune--even my own children!

  2. I am so glad you got the treatment you needed. Can you imagine if you had been any less diligent about getting all those phone calls made and forms signed? I sometimes wonder how many people slip through the cracks of all this bureaucracy.

  3. And oh yeah, we're coming to the US this summer and for weeks now I have been trying to find a supplemental insurance policy to cover us for the duration. It is a nightmare. Ugh.

    1. Gooood luck. It really is nightmarish. :/