Better Living Through Chemistry?

I’d been meaning to write a blog post about some of our recent adventures with prescription drugs. This week's kerfuffle with Turing Pharmaceuticals has prompted me to finally write it.

In case you aren’t aware, Turing Pharmaceuticals, a privately held biotech company, acquired the drug Daraprim from Impax Laboratories. The drug has been on the market for over sixty years. It’s used chiefly to treat malaria and toxoplasmosis. The latter is a problem for AIDs patients and others with compromised immune systems. Turing hiked the price of this life-saving drug from $13.50 a tablet to $750.00.

Outcry ensued, and rightly so.

Unfortunately, this is not an isolated incident.

Unfortunately, this is just another aspect of our broken healthcare system, of which Big Pharma is only a component.

I hate that it takes a case like this to get the situation the attention it deserves—though the cynical side of me wonders if even this would have received this kind of attention if it wasn’t campaign time. An even more cynical side of me looks at Turing’s almost cartoonishly eeeeevil CEO Martin Shkreli and wonders if the whole thing’s not a damn campaign stunt—notice how quickly Hillary Clinton charged in there like a white knight, saying she was going to find a way to end price gouging? In a matter of hours, Turing changed its tune and Shkreli has slinked off, locking down his Twitter account and presumably disappearing back into whatever muck that spawned him. Feels a little too pat, doesn’t it?

Not to be confused with Mr. Shkreli.

But I digress.

I want to say again how Big Pharma is not the only problem here. That our healthcare system is broken.

Did you hear that?

Big Pharma = only part of the problem.

The system = BROKEN.  

I say this as someone who lost their house and had to declare bankruptcy due to catastrophic illness.

I say this as someone who requires medication to stay functional. (Well, as functional as I get, anyway).

I say this as someone whose husband literally requires pharmaceuticals to live. He’s a transplant patient, which means he’s on immunosuppressants, which means toxoplasmosis is a real concern for us.

In the first year my husband experienced total renal failure, I had to take him to the emergency room at least a dozen times. (Honestly, I lost count after the eighth). Going into it, we had better circumstances than most-- we were DINKs with reasonably good health insurance. Even then, each ER visit carried a co-pay of $100. That was $1,200, right out of pocket.

Initially, one of the complications caused by renal failure was blood loss. Uremia, the build-up of toxins in the body, caused microbleeds along his digestive tract. The blood was passing through his stool and his body was unable to produce red blood cells fast enough to replace it. He required three transfusions, and then for about eight weeks after, he had to take an injection called Epogen to stimulate red blood cell production. Each Epogen shot was $700. The shots were weekly.

The insurance company refused to pay for them unless he was a) hospitalized, or b) his blood cell count had fallen to dangerous levels. If you’ve never seen someone with a low blood cell count, they’re paper-white and tend to pass out a lot, so there’s always a risk of falling and the trauma associated with falling.

Also, if you don’t have enough blood, you can-- y’know. Die.

So. Epogen shots for eight weeks: $5,600 price tag.

This is in addition to the $46,000 hospital I received for his first month-long hospital stay, and $60,000 for the second. 

This is in addition to the many drugs the doctors put him on, then took him off of, many of which carried hundreds of dollars in co-pays.

Then he went on dialysis. The dialysis machine was a $65,000 piece of equipment. The monthly supplies for his treatment were $12,000. Tubing, clamps, dialysate, needles, sanitizer, bandages, and I’m sure there’s other stuff I’m forgetting.  

This is in addition to the high monthly premiums we paid for health insurance in the first place, which failed us when we needed it most. A large portion of our healthcare bills were ultimately picked up by the American Kidney Foundation.

This is a capitalist society, which various politicians are always insisting we try to keep as laissez-faire as possible. The point of laissez-faire capitalism is to let the market sort itself out: inferior goods/services fail. Superior goods/services rise to the top.

So how is it possible that these companies exist, charging such outrageous prices for such shitty service? Services so shitty, in fact, that they require a nonprofit to step in to help mitigate their shittiness?

By the way-- wanna know the approximate cost for the first year of renal failure/dialysis?

Around $274,000.

That’s a conservative estimate because I don’t recall how much we paid for additional co-pays like all the specialists (nephrologist, cardiologist, gastroenterologist) and incidentals like x-rays, CT scans, colonoscopies, lab tests, etc., ad nauseum, forever and ever, amen. Also? We did home dialysis, which is cheaper than going to a clinic.

The year before, Patrick and I had made $44,000. (Slightly below our state’s median income-- and that was a good year.)

One year of healthcare = six years of income for two people.

It’s untenable.

Now that Patrick has a transplant, it doesn’t end. The new wrinkle with medication and insurance is mail order services. Earlier this year, we were informed that we could no longer use the pharmacy that we’ve been using for eight years, with pharmacists who’ve been with us every step of the way of our nightmarish medical journey. Our pharmacist knows our names and we know his. He knows our health conditions. He and his staff have done so much for us over the years—advising us on OTC medications, catching drug interactions the doctors don’t, calling us to let us know when there are manufacturer’s coupons available, and helping us navigate the maze of Medicare.

We can’t use them anymore. Our insurance company now refuses to pay for medications we take on an on-going basis from any pharmacy except their mail-order company. They tell us it’s supposed to be for our convenience, that we will save money.

So far, it has not been convenient, nor have we saved any money.

Not only do we pay more than we were paying at our old brick-and-mortar pharmacy, many of Patrick’s drugs can’t be put on auto-refill because the price fluctuates too much.

Twice, the mail-order company has failed to ship Patrick’s anti-rejection medication—the medication that we absolutely cannot fuck around with. If he does not have his medication twice a day, every day, on time, his body can begin the rejection process. Like Daraprim, this is a life-sustaining drug.

When it didn’t arrive on time, what did we do? We had to go back to our old pharmacist to get a partial fill while we waited for the mail order company to get its ass in gear.

One of Patrick’s other drugs, a phosphorus supplement, is so expensive through the mail order program, it’s actually cheaper for us to pay for it out of pocket at—you guessed it. Our old pharmacy.

On a much more minor note, the only migraine drug I’ve ever found that works on my headaches is Zomig. My doctor prescribes six pills a month, which is the maximum most insurance companies are willing to cover. My insurance only covers four.

Don’t you love that the insurance companies know better than my doctor what’s good for me? Or that they aren’t about to allow what’s good for me to get in the way of their bottom line?

The circle of blame doesn’t end there. Yes, the insurance companies and the pharmaceutical companies are neck-and-neck in the relay race of eeeeevil. They charge enormous sums for their goods and services. But the doctors and hospitals charge enormous sums as well.

Then there’s the role of our employers. Companies, like consumers, are saddled with an immense burden when it comes to healthcare costs. For some companies, presumably, this is more of a hardship than others. (Just how much responsibility should they bear?) Over the course of my time in the workplace, the premiums keep going up while the benefits keep dwindling. The employers’ options are to either pass the cost onto their workers, or to cut benefits, or both.

In the case of having to use a mail order system—we found, upon further investigation, that that’s not the insurance company’s requirement, but the employer’s. They’re trying to save costs for their bottom line.

So who’s benefiting from all the savings?

Not us.

It’s an old joke to say that if you’ve got your health, you’ve got everything. But it’s really difficult to convey how true that is to people who’ve never been sick.

The healthcare industry has a unique and uniquely awesome responsibility to their consumer base. Their business is not just a business of dollars and cents. It’s a business of blood and organs, of spirit, of ensuring families get to keep their loved ones for as long as possible. It’s about life and quality of life.

But again, I don’t expect people who’ve never suffered a major illness, or watched a loved one suffer a major illness, to really get that.

So let me put this in terms you dollars-and-cents people can grasp: keep workers healthy. Healthy workers = healthy economy.

Because he who dies with the most stuff wins. And just count yourself lucky if you get to die with all your original parts.