I met and became cool with Kirsten Ott Palladino at media events, back when I was the editor of Thrillist Atlanta and she was Life & Food editor for the alternative weekly Sunday Paper. Beyond cool, she is a dedicated professional and genuine good-hearted person. But also, not really. Let me explain... Kirsten has a very rare genetic disorder called Brugada syndrome, which means that the organ that pumps blood into her veins and keeps her alive is much more fragile than mine and probably yours. According to this site, "Some are individuals who have not been sick a day in their lives until one day, they experience a cardiac arrest in their sleep, often without warning." In other words, in her case, she could say "good night" to her beautiful twin boys, go to bed and not wake up in the morning, without any explanation. Along with her wife Maria, who is co-founder of Equally Wed magazine, which Kirsten also co-founded and serves as editor-in-chief, Kirsten has been very vocal about her struggle to have her insurance company, Blue Cross Blue Shield, assist her in paying for a remedy to her situation: an implantable cardioverter defibrillator. I've been quietly following her ordeal through updates on her Facebook page, and it has definitely seemed like an unnerving situation that you wouldn't wish on someone for who you couldn't care less. On her blog, she has documented the fight she and her doctor put up with the insurance monster, only to receive a letter of rejection not long ago. Without repeating what she's already clearly and eloquently said about her battle, I'll just highlight a few quotes from her post: ...the doctor who decided my fate is not qualified in electrophysiology, but instead is a general cardiologist. I don’t think I’m going out on a limb by thinking that this doctor likely does not know that much about my rare disease, and, of course, I’m reeling that he gets to decide whether or not I shall live based on something he isn’t informed about. ...people who die from it tend to be around 40 years old, and it often strikes in the early morning while the person is sleeping. I’ll turn 36 on March 1, two days after the year anniversary of my brother’s death. I don’t want to die young. I want to watch my children grow up; to teach them to love to read and, from them, to glean patience and how to better enjoy the small details; to hold hands with my wife and share a watery glance when our boys graduate high school and then college; to help my brother’s children never forget their dedicated father who left this earth too soon; and to soak up the sunshine, walk on crisp leaves and welcome the stomach cramps from laughing with my friends. It would be far less stressful if I had a defibrillator implanted in my chest, which would shock my heart if I ever go into cardiac arrest. That’s the understood course of action for someone with Brugada syndrome: to surgically place an ICD (implantable cardioverter defibrillator) inside the chest, wiring the heart with tech-savvy skill to send electrical shocks of power to jolt my heart back into normal rhythm. I’ve heard it’s much like a horse kicking you in the chest. I’ll take that over death any day. A bug was put in Kirsten's ear that she should put her story on CNN.com's iReport under the publicly accessible assignment series entitled "Living With a Rare Disease?" She took the advice and posted the unvetted blog post she'd recently written on the national website. Since being uploaded yesterday, it has received 342 shares and 735 views. One day later, she posted this update on her Facebook page: It's wonderful news, because it means she has peace of mind and knows she's much less vulnerable--and so is her family--to her sudden cardiac arrest at some unpredictable moment on some random day. But let's not let our hearts flutter so quickly and forget that there's big, venomous snake in the room. Blue Cross Blue Shield has the money; we all know that. The association's revenue for 2008 was over $320 million, and I have a hard time believing it's that low, especially since that's "revenue" and not "net" -- either of which was surely higher in 2013. And let's not forget that it's only going to grow now that the US has an individual mandate placed on all citizens that they must carry health insurance or pay a penalty to the federal government. WellPoint, the "independent licensee" for Blue Cross Blue Shield of Georgia, is currently trading at $85.31 per share on the New York Stock Exchange. They're not broke. But you also have to remember that in order for Kirsten to even expect BCBS to help pay for her likely life-saving operation, she had to be a member, meaning she was already a paying customer. I'm sure you know that paying for four people to have health insurance is not inexpensive. There was one other point made in Kirsten's blog post that struck me as ironic to the point of being laughable, if it weren't so morally criminal, tone-deaf, and pathetic. One time, the recording told me that because of the Affordable Care Act and the increased call volume, they knew they’d be unable to answer my call that day and then I heard a dial tone. We all know the ACA had a rough rollout. We all know that many (mostly Republican) states have rejected the increase in Medicare, probably just to deny its citizens the right to fairer prices in health care that'll historically be attributed to #ThanksObama. I'll readily admit that I'm not even a fan of the individual mandate--I vividly remember Obama verbally stating his opposition to it during his primary electoral battle and debates with Hillary Clinton--but I do understand that while nobody wants to be told that they have to spend money on something because the government says so (taxes; I get it), your health is worthy of investment.
America is built on capitalism. I believe in capitalism and the system of rewarding those who produce with more compensation than those who do not. I also believe in regulation, because capitalism breeds greed and brings out the worst in some people. Some people and some companies do not mind selling you Big Macs, and soft drinks, and alcohol-laced soap, and asbestos-insulated homes with lead-painted walls, and malt liquor, and Newports, and cubic zirconia on Valentine's Day, and so on. As long as they have grass-fed filet mignon, freshly squeezed blood orange juice, tea tree body bars, Victorian mansions in the Hamptons that they tear down to build again but prettier, Opus 1 Napa Valley 2001, Cuban cigars and flawless pink diamonds, because it's Thursday. You pay, we buy; we live, you die. I'm not saying I'm not happy that my friend now has a much higher probability of living for many more decades. But I'm definitely not giddy that it had to go this far. And I worry that there are many more people out there who, unlike Kirsten and I, don't have wide reach into the media to make things happen. I have friends who have taken to social media to complain about much more trivial and disposable things, like we all do (some of my best friends are me). But they don't have do think about their twins being motherless before they enter Kindergarten, or their spouses mourning their easily avoidable passing because some dumb-ass doctor wanted to look good for end-of-year financial reports on spending for which he's accountable. They definitely aren't being told that Obama's laws are the reasons why their lights went out during this week's Snowpocalypse sequel. I hope that no snark or sarcasm comes across when I say that Kirsten may have had the perfect combination of circumstances that helped her with her dilemma and could have produced a viral news nightmare for BCBS. She's a magazine publisher, a wife and mother of two, who is also a member of the LGBT community living in Atlanta. She is highly visible and active in the fight for equality at a time when the laws are drastically changing in her and her wife's favor. And her health problems have come to light just as the nation's first African-American president, whose Attorney General is currently knocking down anti-gay marriage laws around the nation, is witnessing the hard-fought acceptance of his biggest political accomplishment (aside from being elected in the first damn place). Regardless of the setup, it is good that this is going to be resolved positively and that things have worked out in her favor, because quite honestly the whole thing has made me nervous, and aside from a few unkept promises made on Facebook to get together as East Point neighbors and have drinks while our youngins run around like lunatics, I don't even see or speak to her that often. At least now I'll have more chances. It's good to have the media on your side. It's better to have a healthy heart, and to have the people you're paying to provide a service as serious as saving your life do what they're being paid to do. If that's no longer going to happen just because some state and corporate leaders are angry that they're being forced to do something good with all this money their locked-in customer base has been giving them, then it doesn't much matter what's Affordable and what's not, because we're being shown the truth that they have not and do not Care, unless we can embarrass them in front of the country and cause them to Act.
5 Comments
Kirsten
2/13/2014 10:07:50 am
Thank you, Mike! You are, as always, quite the eloquent wordsmith. Now, let's please grab that beer soon!
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Erin White
2/13/2014 11:42:03 am
Wonderfully said. What a maze to work through. Hopefully, Kirsten's fight will help to make the next person's a little easier. I too am glad to know there will be more chances for a "run in".
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Margaret Wood
2/13/2014 11:53:25 am
I am so relieved the insurance company decided to do the right thing! Kirsten, you continue to have my prayers and good wishes!
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