Dear United States Senate, Enclosed Please Find My Medical Bills

I believe they belong to you. A petition for relief via the Dorgan Amendment to Senator Al Franken:

December 16, 2009

Signed, Sealed, Delivered--They're Yours!

Dear Senator Franken,

I am writing to you about the health reform legislation efforts currently under consideration in the Senate. Sadly, it appears my lack of faith in our elected representatives, yourself and Senator Klobuchar excepted, to truly address the needs of the people has been fully justified by what can only be truly called the “healthcare non-reform bill” being bandied about as some sort of ‘compromise.’ I guess what this means that those of us foolish enough to have been born with a chronic disease or to have lost employer-based coverage in the worst recession in American history will have to fight for any scrap of consideration we can muster. Besides the obvious amorality of a system of healthcare coverage that legally supports discrimination against the sick and poor to benefit corporate profits, I believe this is also a legal issue. I do not believe our Constitution supports discrimination and it most certainly does not support what is nothing more than passive eugenics. To suggest that those who suffer from underlying health conditions are not worth the expense to society (actually to corporate bottom lines) to care for them and therefore can be legitimately ‘culled’ from the herd through onerous insurance practices goes beyond obscene to completely amoral. That this practice continues with the majority support of the United States Congress is shameful. This point needs to be made crystal clear to those of you involved in the debate.  Without some sort of public option or real reform of health insurance industry practices, there are millions of us who have NO option for healthcare coverage.  It is not a matter of choice.  We are pariahs in a system that caters to arbitrary private insurance policies designed to raise profits and only provides a constantly shrinking safety net for the most destitute in our society.  We can provide trillions in bailouts for corporations and for ill-conceived wars, but suggest that there are Americans who need health care coverage and we become outraged by the expense. It is a form of cultural insanity that is being enabled by Congress. While there may be reasons, political and otherwise, for Congress’s decision to side with private insurers, there is no excuse for it.

Now that I have shared my absolute disgust with how this entire process has been handled, let me beg for one scrap of consideration. I know you will do your best and ask for nothing more than that. I work for a patient organization based in Minnesota called the PCD (Primary Ciliary Dyskinesia) Foundation. The PCD Foundation works closely with the National Organization for Rare Disorders (NORD), the Genetic Alliance (GA) and other patient advocacy groups representing rare diseases.  We in the rare diseases community are used to being overlooked and essentially invisible in the grand scheme of government funding (for instance, not one penny of the 10 billion dollar NIH stimulus funding was directed to the Office of Rare Diseases Research, the only government agency specifically taxed with representing the interests of the more than 30 million Americans who have one of more than 6,000 identified rare diseases).  The reality for people with rare diseases, which are often genetic and frequently chronic in nature, is that they face a lifetime of illness and of extraordinary medical bills.  People with PCD, a disease similar to cystic fibrosis, are born with lung disease and get progressively sicker for decades until they either need a lung transplant or succumb to respiratory failure.  For those who can get insurance, lifetime caps are a disaster, often negatively affecting treatment decisions and resulting in care that is less aggressive than it should be and causing tremendous fear and anxiety in patients who should be concentrating on staying healthy rather than worrying about reaching lifetime limits.  I am asking you to join Senator Byron Dorgan in passing an amendment to do away with lifetime insurance caps. Surely America’s sick deserve at least this little crumb of hope after being so mercilessly denied any real chance of relief in current reform efforts.

It would be hard for me to adequately express my absolute devastation at how American citizens have once again been abandoned in the healthcare debate.  I watch our elected officials and many of my fellow citizens fight to keep me and millions of others like me uninsured and I have to wonder when and how we lost our way?  How can we purport to be a shining beacon of “life, liberty and the pursuit of happiness” when we willing allow our own people to be subjected to a life of unnecessary pain, illness and untimely death?   I truly hope my fellow citizens understand that they are just one illness or pink slip away from suffering the fate they are so cavalierly inflicting on others.

History is going to excoriate us for our lack of values and mixed up priorities—our western allies already do.  This is another shameful and embarrassing episode in American corporate greed. As for myself, I’ve given up.  I suspect that this round of reform talks was our last chance and I clearly just have to accept the fact that I am uninsurable—period.  I don’t even have a serious chronic condition, just well-controlled hypertension. If that is enough to make me a pariah, imagine what is happening to people with conditions like PCD?  I hope and pray that I don’t get really sick, but if I do I will be presenting my bills to Congress.  Congress has had multiple chances to fix this mess and has chosen not to. They have earned both my contempt and my medical bills.


Mickey’s Musings


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