An Anarchist’s View on Healthcare

This is a guestpost from Kirsten Tynan. Some of you may have caught a previous post Help a Woman Buy Herself a Tracea – Kirsten is the Montana woman seeking to help raise $5K towards purchasing the trachea Rachael Phillips needs. This her story on why she got involved. ~jhygirl

In recent weeks, the story of one Rachel Phillips came to my attention. I do not know her myself, but she is a friend of a dear friend of mine. It is through him that I came upon the details of her situation, and they break my heart.

First, this is her story in short:

Not all that long ago, Rachel was a ballet dancer with the Royal Ballet of London. She has also danced with the Kirov in Russia, the Nashville Ballet, and Ballet West in Salt Lake City. Today, though, she can barely breathe without the help of a machine. Her near constant companion is a Labradoodle named Siena who is specially trained to detect, by scent, a decline in her O2 levels and warn her when they fall below acceptable limits.

Her airways are failing from severe tracheobronchomalasia (TBM), a condition that causes trachea and bronchial airways to collapse. The underlying condition that brought about this problem in her case was Elhers-Danlos Syndrome (EDS) – a genetic, connective tissue disorder that affects the collagen in the body.

Dr. Paolo Macchiarini is the only doctor in the world who has successfully grown a trachea and bronchial branch from a person’s stem cells and transplanted it back into the patient. He has taken on Rachel’s case, and has a team of specialists working with him. They plan to take some of Rachel’s stem cells, attempt to fix defective DNA in them, grow for her a new trachea and whatnot on synthetic scaffolding, and then transplant it to replace her collapsing airways. He has done something like 10 similar transplants prior to Rachel’s, but Rachel’s will be only the second using a biosynthetic scaffolding and, I think, the first in which his team attempts to correct the genetic defect causing the collapse in the first place. Literally dozens of procedures short of this transplant have failed to restore her to functionality, and she is not expected to live another year without this life-saving procedure.

I have, of course, conveyed to you only the most minimal shadow of the actual excruciating ordeal Rachel and her husband have been through day after day, month after month. They have endured two years of bronchoscopies, failed surgeries and stent placements, emergency room visits, and sufficient oxygen intake made possibly only by a machine, and life lived moment by moment, breath by breath. If you log into Facebook (yes, I know, I hate it as well) and click on her husband Steven’s notes, which you don’t have to be friended to read, you will see how I have barely scratched the surface here.

Rachel and Steven are faced with hundreds of thousands of dollars in medical expenses. Although the Dr. Macchiarini will not be charging them for his services, the rest of the medical treatment and the bills that have already stacked up will be extremely expensive. As if all this wasn’t enough, this procedure is not approved by the federal government and cannot, as it currently stands, legally be performed in the United States. Not only does this mean that her health insurance almost certainly will not cover this, but Rachel will almost certainly have to foot the extra bills associated with traveling overseas for treatment and recovery.

Horrified by this cruel twist of fate, courtesy of the federal government and the corporations in bed with it, I am deeply moved to help her out. I have already contributed some money toward Rachel’s expenses and will add at least one more donation this month. But I wanted to see if I could raise more than I am able to contribute on my own.

Here’s my challenge for those of you who choose to accept it:

Part 1: Raise $5,000 toward Rachel’s hundreds of thousands of dollars of expenses. I will have my hair cut and send it to Locks of Love and then have the rest shaved right off.

Part 2: Raise $50,000 toward Rachel’s hundreds of thousands of dollars of expenses. In addition to the above, I will also wax off at least one eyebrow.

I’ve only commented here occasionally, but hopefully I’ve been annoying, aggravating, or abrasive enough for some of you to find one or both of the above attractive enough to chip in. :-) Details of this challenge and progress toward it are spelled out on a blog called Rachel Reinspired that I’m using to promote this effort.

Finally, here’s my personal take on the health care debacle Rachel is suffering through:

I disagree with jhwygirl on a lot of things, though probably not as much as it might seem at first glance. We certainly do bump heads, though. In this case, I don’t see that free market insurance companies have failed anyone- because I do not believe that free market insurance companies exist in this world. These companies are all corporations- legal fictions that exist ONLY because government provides them with market advantages and legal protections that would not exist in a truly free market.

In a free market, these expenses would still be daunting, of course, but at least this treatment would not be illegal in the United States as it currently is. Rachel would not be burdened even further by the insult of the added expense of going overseas for months to have the treatment and follow-up recovery care.

Thanks to Montana’s own Max Baucus, not too long from now I won’t even be able to do for Rachel what I am able to do today. As a healthy person today, I have the option of giving money I don’t need for my own health care to Rachel. As a healthy person in a few years, I will instead be forced to give that money to one of these government-privileged corporations that will not pay for the health care she and others like her so desperately need. Woohoo! Reform! Thanks, Max! What a guy!

I do agree on this with jhwygirl: death panels under nationalized healthcare? For real, Sarah Palin? That’s your argument against it? In Rachel’s case, we ALREADY have two death panels at work- the federal government that has made it illegal for her life-saving transplant to take place in the United States, and the insurance company that has every financial incentive and legal protection it needs to refuse to pay for it.

Corporations don’t take care of us. The government doesn’t take care of us. They only serve to shield us from the suffering of and from feeling deep compassion for our fellow human beings. They break our relationships with one another by allowing us the comforting illusion that someone else is caring for our fellow human beings. But it’s a lie.

In the most catastrophic of circumstances, they will not be there. They are not the social safety net. WE ARE. It is up to us to take care of one another.

That is my take on it. Your take may be different. But I truly believe Rachel’s situation transcends politics, religion, or philosophy and goes straight to the heart of what it means to be a decent society. No matter what side of which fence you are on, it is undeniable that there ARE people who -through no fault of their own- have been dealt obstacles in life that are insurmountable without help. Rachel is one of these people, and, of course, there are many others facing similar horrors.

If Rachel and others facing similarly impossible circumstances can hang on, if modern science can come through for them, what a tragedy- what an OBSCENITY – it would be if it came down to not having the money. We simply are not a decent society -not civilized people- when we let this happen.

Thank you for reading this far, and my sincere gratitude to jhwygirl for helping bring attention to this situation.




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