Saturday, February 7, 2015

Freedom, My Ass!

It isn't just Texas that's crazy,  Mr. Hastings.
Just as Alcee Hastings, that Florida congressman who recently (and quite awesomely, I might add) messed directly with Texas by referring to it in a House Rules Committee meeting as "a crazy state," I'd argue that anyone who thinks our current profit-driven, multiple insurance payer system of American healthcare is working well is equally crazy.

Hell, it's worse than crazy or inefficient: it's downright uncivilized. Such blasphemy, coming from an American physician, right?

Fear not, though, I'm not going to bore you with my opinions on why the good old US of A would be far better off with a single-payer system like Canada, France, or the UK, you know those uncivilized countries that actually provide universal healthcare coverage for their citizens, paid for through the tax base (which is something we could easily implement if American medicine wasn't all about the $). Oops, I just said and totally meant that. Guess that makes me a socialist, LOL.

But seriously, anyone who can't admit we've got some glaring problems to fix has clearly never had to care for a sick family member.

Me and my handsome rock star sons.
Those of you who know me or have read my blog know that my twin sons both suffer from cystic fibrosis, an inherited disease that affects primarily the lungs and pancreas, the median life expectancy for which is currently around 40 years of age. Daily treatment for this disease consists of multiple inhaled and oral medications, inhaled and intravenous antibiotics, chest physiotherapy, a nutritionally dense high calorie diet, exercise, and hospitalization for pulmonary exacerbations. In other words, treatment ain't cheap or easy. Their medications alone cost thousands of dollars each month, an expense which is mostly covered by our insurance.

Fortunately, we're insured through my husband's employer, who pays 100% of all employee's premiums and provides significant reimbursement for our deductibles. That's all well and good, but what's going to happen when Nick and Rory turn 26 and can no longer be covered by our insurance? Patriotic Americans proudly refer to our country as the land of the free. Here's a question for ya. How free a society are we when job and career choices for so many of us, including my musician sons, are limited by whether or not we can afford insurance coverage?


Yep, that's my unretouched ass.
Freedom, my ass! Let me tell you a little story about how it's taken nearly a year for Humana, our insurer, to approve a standard of care chest physiotherapy device for my sons.

Our journey begins in early spring of 2014. That's when we first learned of the Afflovest, a completely self-contained, battery-operated chest physiotherapy vest which permits unrestricted freedom of ambulation whilst one is actively using it. What an amazing technological breakthrough!

Given that Nick and Rory have spent years of their lives, tethered to an older model vest and a chair for at least an hour per day, the Afflovest presented a real quality of life-enhancing opportunity. Being able to do other things during chest physiotherapy, like walking, eating, and grooming, not to mention the fact that the Afflovest can be used and charged in a car, would permit a little more time for restorative sleep, convenience while traveling and camping, and improved compliance with treatments. Wait a minute...eating while doing treatments? That would be amazeballs, given that the old vests routinely made Nick and Rory vomit if used within 2 hours following a meal.

After reading rave reviews of the Afflovest on other CFer's blogs, I checked to see if the device was covered under our Humana plan. Although it was covered, the only Afflovest provider in our region was considered out-of network. According to Humana, the provider would have to waive its out-of-network reimbursement. Why Humana couldn't have just designated the only regional provider for Afflovests as in-network is beyond me.

Nick's instrumental angry tweet
Anyhow, I contacted Scott, the Afflovest rep, and was delighted to learn that the waiver had been approved. I figured it'd all be downhill from there. In late spring, Nick and Rory's pulmonologist and respiratory therapist submitted a request for the Afflovests, the first of many. Humana repeatedly denied these requests, asserting that the Afflovest was a convenience, not a necessity, as well as being a duplicate device.

I gotta be honest...this kind of crap makes my blood boil. The people denying such claims aren't physicians; they're uneducated flunkies, armed with algorithms. Maybe a little negative publicity would help things along? #inhumana #unethical, #humanasucks, anyone?

Having recently discovered that large companies really do pay attention to their Twitter feeds, I launched an angry tweet campaign against Humana. At first, it was like magic! One minute I'd be tweeting my health insurance-related discontent, and the next, a very apologetic customer service would contact me, promising to thoroughly review and investigate our case. In the meantime, Nick and Rory's pulmonologist and respiratory therapist forwarded letters of medical necessity to Humana on their behalf. Confidence was high, but dwindled as each successive interaction hit the brick wall of rejection. Three weeks before Christmas, I was about to throw in the tweet towel. And then, Nick--who rarely even uses Twitter--chirped up and tweeted his rage against the healthcare machine. This time, Humana listened.

Spartacus & Jerney, toasting Christmas with green juice.
A Humana customer service rep contacted me, advising me to construct a letter of appeal that would "tug at the reviewer's heartstrings" and assuring me that no further documentation or letters of medical necessity would be needed. Say whaaat? This struck me as odd, especially coming from someone employed by Humana. He basically spoon-fed me every detail I needed to include in my letter, from addressing quality of life issues to the specific problems Nick and Rory encounter with their current vests to reminding Humana of its advertised goals to provide patient-centered care and improve community health by 20 percent by 2020. Naturally, I was in the midst of holiday shopping madness at IKEA during this conversation. I'm sure everyone in lighting and textiles heard me groaning at the very thought of having to compose such a letter.

On December 20, I sent my thoughtfully composed, evidence-based letter--complete with research references to support my position that the Afflovest is a necessity, not a convenience--to Humana via certified mail. It wasn't an easy letter to write, especially paragraphs like this that most parents can't imagine having to draft:

Optimal lung function in cystic fibrosis doesn’t just impact quality of life, it factors significantly into quantity of life. In other words, initiating therapy with the Afflovest means my sons would no longer have to choose between quality of life and quantity of life: they’d be afforded a fighting chance for enhancing both. 


The Afflovests are here!!!!
On January 5, I received a call from Scott. After so many prior disappointments, I was afraid to answer. "Humana has approved the vests," he said. My heart literally skipped a beat, and I was overcome by a rush of accomplishment and relief: a palpable decompression. Needless to say, Nick and Rory were equally thrilled with the news. 

Since the vests were on back order, we had to wait about a month for them to ship out. One thing CF teaches you is patience. I mean, we've spent the boys' lifetime, waiting for better treatment and hoping for a cure, so what's a month in the scheme of things, right?

Last Wednesday, as I was driving home from work, I got a text message from Rory, who works at The UPS Store. There was a photo of some boxes. I was like, "Huh, why is he taking photos of boxes at work?" The text box that followed read: "vests." Duh! I'd totally forgotten that we'd specified the vests should be shipped to his workplace since no one at our houses would be home to sign for them.

And there it was, in living color, the bright blue and yellow vest we'd fought so hard for.


Rory, rockin' his Afflovest.

This morning, the first thing I saw on Facebook was Rory's status update: "The new Afflovest rocks!" Then, I noticed that Nick had messaged me late last night, telling me, "The Afflovest is so cool. It's like freedom!"

Ah, yes, freedom...

Clearly, Nick and Rory don't take their freedom for granted. Being liberated from their clunky and restrictive old vests has got to feel pretty damn liberating.

But, the hands of time keep moving forward. Soon, they'll be 26 and too old to remain on our insurance plan. That'll be another battle for another day, and believe me, I'm prepared to go to war for them.

In the land of the free, being a musician and having health care coverage shouldn't be mutually exclusive, but unfortunately, they are.

So, until some real freedom happens, and by that I mean single-payer, publicly funded, universal health coverage for all American citizens, I'll proudly just keep baring my unpatriotic lily-white ass.