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.


  1. Kris, congratulations on your victory over the bureaucrats! Hope the vests bring Nick and Rory both a greater quality and greater quantity of life. My daughter turns 26 this July so we're facing the same healthcare mess. Decisions, decisions! It'd all be so much easier and less worrisome if we lived in a civilized country with a civilized healthcare system. I think it'll happen eventually but until then we'll just have to deal with the mess. Great ass, by the way!

    1. Thanks,'s good to finally be able to decompress after this nearly year-long battle. I know there are more battles ahead, but for now, I'm basking in the sense of accomplishment that comes from this little victory over the bureaucrats. As far as my ass goes, I figure I may as well flaunt it while I've still got it ;-)

  2. Great blog and great picture of USDA :) AMAZING!!!

    1. John, I am hoping that maybe my blog post will help others, just as your blog review of the Afflovest helped us :-)

  3. Congrats on the vests' arrival. The world has quite obviously gone mad when these things have to be fought so hard for.
    Nick and Rory are clearly very fortunate to have you in their corner.

    1. Dale, I am hoping that in my lifetime, our country will have a single-payer system of universal coverage like you guys have over in the UK. I know there is no perfect system, but what we've got here is a real nightmare. It's ridiculous that we have to fight these fights with health insurance companies, whose primary interest lies in profit, not health.

  4. Great blog Kris! I love your passion for life and agree with your views and frustrations with the healthcare system. As someone who has been a healthcare professional for over 30 years, I am embarrassed and ashamed of the system that I am, in theory, a part of! Nothing like a mother's heart for her children to get things done! I have fought my share of battles for my son living with autism and will continue to battle and advocate for him until I draw my last breath!

  5. Bravo Kris! Agree with you 100%. Healthcare in this country is driven by greed and profit, patients are secondary to the bottom line of American medicine; it’s crazy. ”Hell, it’s worse than crazy or inefficient: it’s downright uncivilized.” Well said and so true, thank you. As a physician and mother, you have seen both sides of healthcare up close and personal; you’ve got “creds” on this issue! I’d definitely support a single-payer system and I bet most people not politically-motivated or influenced by the irrational fear of socialist medicine would support it once they understood the real benefits to patients and healthcare as a whole. (I saw the video of what Congressman Hastings said in committee, that guy has guts unlike so many lily-livered folks in Congress!)

    Big congrats and I’m so happy for you, Nick and Rory on finally getting the approval from Humana for Affovest! Your persistence with all those tweets by you and your sons and that letter you wrote finally did it. But it’s crazy that you had to fight Humana’s plan restrictions and denials by “flunkies armed with algorithms” just to get a proven technological advancement that would dramatically improve quality of life for your sons (who, btw, are truly rock stars, I’ve got 2 of their albums, awesome and talented, and so is their rock star mom!). How is that a beneficial system? You’d think something improving quality of life would be a no-brainer. “Freedom, my ass!” is right. (Your “unretouched ass” is the perfect statement here!)

    Great post, Kris!! Love all the photos. Jerney is a doll, that’s a great picture with Spartacus.

  6. Thanks for sharing your experience both on the vest itself and the process. Congratulations on getting your sons vests! I am the mom of a 21 year old daughter with CF in college and we began the frustrating process of getting an Afflovest on 1/2/15. I'm praying it won't take a year like it did with you, but we have the exact same problem. There are 129 DME providers in my insurance network within 50 miles of me, but not one of them sells the vest. I think the Afflovest company could be better about getting it out there. There's one place that sells it within hundreds of miles and they don't contract with any insurance. They are sending an appeal to my insurance, Assurant, to get out of network coverage. Luckily the company rep that I'm working with is trying very hard to get one of my covered DME providers to sell me a vest. I'm hoping it works! I think it will be worth the hours of frustration and work, but there are days when it's so disheartening and I feel so defeated by the system.

  7. WTG Betty ! Sounds like the darkest hour is just before dawn :-)

    In three years Gov. Deal will be leaving and this could be a big political issue !

  8. Congratulations on defeating the Grim Grey Ogre of Bureacracy. You rock.

    Sadly us Brits also have to deal with medical aid devised by accountants too. Only difference is, they're public service rather than corporate. Still a pain though.

    And I have to long did it take to get that paint/transfer/whatever off your bum?.

  9. I can't believe all the hoops you need to jump through to get things done, what a waste of precious manpower the US system is, not to mention all the fully educated adults bankrupted by the healthcare, or only able to function at halve capacity because of it... such a waste, and all for the sake of a few fat cats who enjoy the way the current healthcare is set up. Stinks of a totally corrupt government to me.

    government of the corporation, by the corporation, for the corporation

    Glad the boys are now enjoying all your hard work. What a mum !

  10. It must have been a nightmare. I am glad that they got the vests in the end. However, I agree with you that it should never had taking so much. It seems that corporations, and therefore, our government, are only interested in the bottom line and that to me is the decline of America. People should always come first. I have not had insurance for most of my life. I just can't afford it and have rarely had a job that provides a good policy.

  11. Yay! I'm so happy you won the battle of the vest! It sounds like it will really enhance their quality of life. Kudos to you for your diligence and well-crafted words.

    Nice ass, too. ;)

  12. As a DME provider and having a niece with CF, I understand your frustration from both sides. I am so happy your son got his vest. Affovest is a wonderful company to work with and truly make a terrific product. This vest provides therapy above and beyond. We have been working hard to get a few vest approved and of course get the run around from every insurance company we deal with! I feel like we work hard for our patients but the insurance company alway puts one more hurdle for us to jump thru. They make it almost impossible! Congratulations and Great work!!!!