An Anniversary, Meltdowns, Blessings, and Fuel for Advocates

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Please indulge me today. I’m going to share a very personal experience I rarely think about anymore, in hopes it will propel some good advocacy.

Sometimes months go by when I barely give it any thought. Other times, like lately, it seems like everywhere I turn, I just can’t escape it. So here you go:

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Of Heroes, Trust, Discord, Arrogance, and Karma – Part I

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This year I can tell I’m finally getting beyond the trauma. It’s a feeling of freedom to some extent, but sort of a shame to another. And you know me – I always end up analyzing these things (or, perhaps over-analyzing them) – enough so that I’m going to share some of that analysis with you.

The trauma I refer to was the cancer (lymphoma) misdiagnosis in 2004 that propelled me to change careers to patient empowerment, and eventually advocacy. By trauma, I mean that I was told I that in a few short months I would be dead, and that I butted heads with the very doctors who were supposed to help me manage my diagnosis, one a most-arrogant oncologist who, in God-like fashion, told me I was foolish to waste time getting a second opinion because “no one will know any more about your cancer than I do.”

Right.

On September 20, 2004 – 12 years ago last week – after three months of doing battle with the healthcare system, I learned from a hematopathologist at the NIH that I did not have lymphoma after all. There was no evidence of any cancer in my body. None. Zip. All these years later I have never had any treatment.

Clearly, no, I wasn’t dead in a few months. They were wrong.

Further, it cost me every penny of my savings to prove I did not have cancer, despite the fact that I had health insurance. (It was crappy, high-deductible health insurance, but I was single and self-employed, and it was all I could afford.)

Since then, every year on September 20th I have mentally celebrated what has become a rebirth of sorts. I have simply taken stock of all the positive life changes that resulted. I’ve tried to use that impetus to drive me past the PTSD that remained for so many years. It seems to work; I haven’t had a meltdown in more than two years, and life just keeps getting better and better.

I know I’m getting beyond the trauma because when Tuesday, the 20th rolled around this year, it was late afternoon before I even realized what day it was. In the past, I’ve dwelled on it for days before, and sometimes after… but this year, 2016, I barely thought about it at all. Hooray!

Of course, life lessons can always be gleaned from such an experience. So today, based on my misdiagnosis odyssey, I want to focus on behavior in the face of discord, and how it can have an enormous effect on one’s reputation and success as an advocate, just like it did for those doctors involved in my misdiagnosis. Further, over time, it can have an immense ripple effect, both good and bad – the part I call karma.

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How Professional Patient Advocates Would Have Stopped Farid Fata

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On Friday, Dr. Farid Fata was sentenced to 45 years in prison in the state of Michigan.

If you read or watch the news reports you would think the reason behind his long sentence had something to do with the fact that he had diagnosed 500+ people with cancer they didn’t really have, told them they needed chemo, then treated them for those cancers they didn’t have. As a result many died, some will deal with the aftermaths of unneeded chemo for the rest of their lives, some are ruined financially in medical debt, and worse.

The headlines read things like,

Michigan doctor gets 45 years in prison for hurting patients

Farid Fata, Doctor Who Gave Chemo to Healthy Patients, Sentenced to 45 Years in Prison

Doc Told Hundreds of Healthy People They Had Cancer

He did do those things. Horrible, cruel, heinous crimes against those victims and society that hit way too close to home for me.  He is a despicable human being and deserves many more than 45 years in prison, in my not-so-humble opinion.

But here’s what most of us are missing:

Fata wasn’t found guilty, nor will be be imprisoned, because any of those people suffered. He isn’t paying the price for anything related to the heartbreak, fear, mental or emotional anguish he put those patients and their families through. His legal-guilt has nothing – NOTHING – to do with the physical, mental or emotional horrors of his crime.

No. Instead he is going to prison because he defrauded the government and Blue Cross-Blue Shield out of money. His crimes were money crimes. According to CNN, “He pleaded guilty to 13 counts of Medicare fraud, one count of conspiracy to pay or receive kickbacks and two counts of money laundering.” According to the Detroit News, the amounts total $34 million.

Could Fata have been stopped?  Yes, he most certainly could have.

In fact, I will go out on a limb and say that all 553 patients could have avoided what happened to them. Every one of them could have gotten the care they needed, and avoided the care they did not need … Continue Reading →

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