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Daily Kos: Why This Election Matters: My Family Loses Our Health Insurance January 1, 2013

I have an autoimmune disorder known as Tumor Necrosis Factor Receptor Associated Periodic Syndrome. However, my disorder was not properly diagnosed in 1998 when I had to stop working. I had seen numerous specialists, all of whom had differing diagnoses on what was wrong with me. I filed a claim with my law firm’s disability insurer. Unfortunately, our disability policy was set up as an employee benefits plan, covered by ERISA, a federal law that cover many employee benefit plans. For those of you who d0on know what that means, let me explain it for you. The insurance company is the trustee of the benefits plan and can deny any claim for benefits so long as it does not act arbitrarily or capriciously a very low standard to satisfy in federal court:

When a court reviews a decision under an arbitrary and capricious standard, the court reviews the insurance company’s file to determine whether the insurance company abused it’s discretion. In the typical claim for benefits under a disability insurance policy, unless the claimant takes appropriate action, the insurance file will contain very little information in support of the application and overwhelming evidence that supports a denial of the application.

Essentially, disability insurance companies have put together a business plan that maximizes premiums and minimizes the payments of benefits to the people covered under those insurance policies. The standard claim process provides for a certification by the person’s treating physician that they are unable to perform their previous occupation. Typical forms that the physician is asked to fill out are one to three pages long and provide very little information regarding the claimant or his/her claim. Typically, an insurance company will ask for one years worth of medical records and then review this information to determine whether benefits should be paid. It is common for these companies to hire outside physicians to read these records and then write lengthy reports in support of a denial.

This is what happened to me. The lack of a definitive diagnosis and my confusing array of symptoms ranging from auto-immune inflammation of my joints and connective tissues, severe gastrointestinal symptoms, etc., allowed Insurance company who was the Trustee of our ERISA Disability Benefits Plan to send my medical records to another doctor employed by the Insurance company, a doctor I never met (and one who never discussed my case with my doctors or with me). He declared that I was not disabled. We sued and lost in Federal Court, because the Judge said that though it appeared to him I was disabled he could not say that insurance company who was the trustee for my firm’s disability benefit plan acted “arbitrarily and capriciously” since its decision as “Trustee” was based on the review by a doctor they hired who never examined me.

I didn’t apply for Social Security benefits because I was advised I had little chance to obtain those benefits after losing the suit with my disability insurer, and for much the same reason – no definitive diagnosis of my condition at that time. The fact that my disability insure had already ruled against me also hurt me.

Luckily my wife had a good job. Well, until she was diagnosed with pancreatic cancer. She had immediate surgery, and followed a regimen of radiation and two different chemotherapy medications, one while she was in radiation. This destroyed what little was left of her pancreas so she is dependent on insulin to survive. However, far worse was the damage done by one of her chemo drugs. After six months, my wife developed severe cognitive dysfunction caused by the drug she used during her radiation: Fluorouracil also known as 5FU. After some google research I learned that the use of 5FU causes the following damage to brain tissue:

We found that clinically relevant concentrations of 5-fluorouracil (5-FU; a widely used chemotherapeutic agent) were toxic for both central nervous system (CNS) progenitor cells and non-dividing oligodendrocytes in vitro and in vivo. Short-term systemic administration of 5-FU caused both acute CNS damage and a syndrome of progressively worsening delayed damage to myelinated tracts of the CNS associated with altered transcriptional regulation in oligodendrocytes and extensive myelin pathology. Functional analysis also provided the first demonstration of delayed effects of chemotherapy on the latency of impulse conduction in the auditory system, offering the possibility of non-invasive analysis of myelin damage associated with cancer treatment. Let me explain that in lay person’s terms. Myelin is a fatty substance that coats the neurons in your brain. It acts much like the insulation around electrical wiring. Once the myelin in my wife’s brain began to be stripped away, her brain essentially short circuited. Many connections between neurons from the right hemisphere of her brain to the left simply were destroyed. She literally could hold her car keys in one hand and believe she had lost them. To be blunt she incurred significant brain damage. Loss of short term memory. An inability to concentrate on even the simplest tasks, severe anxiety and mood disorders. Plus she could no longer filter out all the stimuli that your brain and mine normally ignores. She became overwhelmed in crowds, in stores, and even by conversations she couldn’t follow. This led to panic attacks, angry outbursts of raw emotion, and other issues too numerous to mention. However, since her disabilities were well documented after physiological and psychological testing,her disability claims were granted. The insurance companies and the Social Security bureaucracy had no good faith reason to deny that she was disabled. Our family’s health insurance through her company continued even after she was officially retired due to her multiple disabilities. Until now.

Two years after my wife was adjudged she was disabled, she became eligible for Medicare, but our family health plan for myself, my daughter (17) and my son (23) continued. Thank you President Obama, by the way, for getting health care reform passed so my son could continue on our insurance plan past the age of 21. I believe that my wife will still be able to receive COBRA benefits after our family health care plan is terminated by the bankruptcy court, which means we can pay for the same health care plan for a period of 18 months after December 31, 2012 (this assumes that my wife being covered by Medicare does not eliminate her right to receive COBRA benefits for our family). It isn’t a great plan but it is better than nothing. Read this blog post to understand the cost we pay out of pocket each year despite our health care coverage. To summarize, we pay about 1/5 of our gross income each year for health insurance. Under COBRA, that cost will likely go up.

But here’s where the problem for us begins. My wife is at risk if Romney wins and has a majority Republican Congress in both houses (or maybe even one), since we know the Republicans want to cut back or eliminate many Medicare services. Second, my son is at risk of immediately of losing his health care coverage if Republicans repeal the Affordable Care Act, as they have said they will do. My daughter and I would still be covered for 18 months through COBRA, but after that we’d be on our own. We both have pre-existing conditions. My daughter can probably get health insurance until she is done with college, but whether it would cover her medications for her ADHD and anxiety disorders I do not know. I would have to look for insurance as a single person with a history of various medical problems. Outside the exchanges being created by the ACA, I doubt I could find a plan we could afford.

Thus, if the ACA (i.e., Obamacare) is repealed, I’d have to go without health insurance until I became eligible for Medicare, assuming Medicare in it’s present form exists when I reach 65, or as seems likely, 67 years of age. I am currently 56. Many of the drugs I take to alleviate my symptoms lower my immune system defenses, making me more likely to get cancer or severe viral and bacterial infections. I’m not sure I would live to reach Medicare eligibility because I refuse to allow all my life’s savings to be used up to keep me alive should I get a life threatening illness. My wife will need every penny we have saved over the years for personal in home care, since she cannot care for herself. I also want to be able to pass something on to my children, because considering the likely future they will inherit, they will need all the resources possible simply to survive.

So, this election is very personal for me. I suppose it was always very personal on so many issues, but knowing that, should Romney and the Republicans prevail, my ability to obtain any health insurance for myself and my children, even crappy insurance, will probably cease to exist brought home to me the importance of this election in a way I hadn’t felt before.

And I know that many, many Americans will be in the same position as I should the “worst case scenario” occur. In 2014, millions of Americans will hopefully have access to insurance that they do not have now, thanks to the insurance exchanges the ACA requires. If those exchanges are not set up, for whatever reason, than millions of lives will be at risk, and many people without insurance will die when — not if — they get a serious, life threatening illness or injury. All because they won’t have the means to afford the care that could save their lives. To save them, to give them the chance for decent health care that people in every developed country in the world, except ours, take for granted, President Obama must be elected, and so must as many Democrats to Congress as possible.

One family’s plight doesn’t mean much in the grand scheme of things. I realize that. But we aren’t talking about one family, here, are we. So do whatever you have to do to get out the vote, to fight the well documented voter suppression efforts of the Republicans, and win this election for Democrats. Yes, Democrats are fallible, often flawed, often gutless, and often weak and timid politicians. But the Republicans would, as the President, so eloquently put it, take us back to the economic policies of the 1920′s and the social policies of the 1950′s. Mitt and his family would do very well under those circumstances, but 95% of our country would suffer horribly. More jobs lost, more wars, more income inequality, an ever declining mortality rate, and the destruction of the middle class. Only the brainwashed zealots of the far right , the tea party extremists, and billionaires who control the other major political party in this country would welcome such an outcome.

Good luck to us all.

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