Monday, May 16, 2011


Once again, life at failblog has led me to make another serious post.
I was born with Neurofibromatosis. This is a degenerative disease. It is what will eventually kill me. Assuming I don't get hit by a bus first. I don't have health insurance. I can't afford it. I simply can't. What one insurance company quoted me, I wouldn't NEED the insurance! I could use that money (there was a $5,000 deductible involved) to cover nearly all of my doctors visits.
Most people who have met me wouldn't know about my condition if I didn't tell them. I'm lucky in that regard. Most of my issues area largely "invisible". But for crying out loud! What the fuck is wrong with trying to provide adequate health care to EVERYONE!? It's not like I get sick just so I can suck tax dollars out of anyone's pocket! There are so many people like me who fall through the cracks. There are so many people who are worse off than me.
There are so many people who think that folks like me are idiots and morons for saying that current health care is inadequate. They say that we don't know what we're talking about. I've lived the life. I know from what I'm talking about.
If there is a program out there to help me, they sure as hell make it as difficult as possible to get to. See, part of my issues include learning disabilities, which makes navigating the convoluted ins and outs of the system overwhelming.
It is in a word frustrating.

--Little Bird is fed up.


Chris said...

I can understand your frustation but don't get angry just because some people are ignorant. You are probably an expert on NF and health care/insurance while many others (warning: stereotypical view of US incoming) probably never heard of this concept.
There is absolutely nothing wrong with adequate healthcare for everyone.

Sheik Yerbouti said...

You're understandably and rightly frustrated. I certainly would agree that the current state of health insurance is a big problem.

However, the proposed solutions that have been thrown around in the US Federal government don't actually make anything better; if nothing else, they're draining even more resources with extra layers of regulation and bureaucracy.

A couple of questions, if you don't mind:

What kind (NF1 or NF2) do you have?

Where do you live (approximately, rather than in a stalker-ish way)? A lot of foundations/outreach programs are locally based and it may be easier for you to find help that way. If that fails, there are actually companies that (a) help you find the least expensive treatment options and (b) work at hospitals with non-insured patients to find programs that offer support (beyond the usual Medicare/Medicaid stuff).

Forgive me if I'm going down roads that have already been traveled; I'd be happy to help if you think I can.

Victoria said...

Hi Avis, I'm really sorry to hear how this is for you. Living in the States should be far...easier. Could your parents help eak out some insurance possibilities? Where you have the learning difficulty, they wouldn't, is the angle I mean....
I'm not in the states, so I can't offer clues, but I think of you daily.

little bird said...

I have NF one. My parents can't afford to provide insurance. I'm trying to figure out how to obtain SSI. And Sheik, if you read more of my posts here, and at FB1 you can figure out where I live!
I'm trying to go to the NF forum this summer in Minneapolis.

Gerry L said...

I feel for you and it sickened to me see the US' reaction to the very idea of national healthcare. It's tough in Australia but everyone has access to medicare. about 2 years ago I was injured quite badly in a fire, but thanks to our healthcare system I was looked after as soon as I got to the hospital, whether I had private healthcover or not. So our taxes are higher, I will always appreciate and be grateful that a little part of my paycheck goes to ensuring a better standard of living for all. People don't complain that their tax dollars are going to building roads...why be so upset that being taxed a little extra means that there is a fair system for all available? It shocks me that people lack the empathy to even envision what it must be like in the shoes of those less fortunate than they are. Fly to Australia little bird, marry someone here and have a chance. I'm so sorry to hear of your condition and the hand you've been dealt because of it.

Lawlzasaurus said...

Err, not to be rude, but you're making a fallacious argument from emotion and mixing two different issues.

1) As unfortunate as the disease is, its horrendous effects have no bearing on whether or not you have a "right" to have your medical bills paid by everyone else.

It's precisely the feeling of entitlement (to money, healthcare, etc.) that riles so many people up.

You didn't claim to have a right, I'm only pointing out the general tenor of the national healthcare debate.

2) Horrendous diseases and emergency surgeries are not on anyone's hit list when it comes to national healthcare. What people are generally against -- if I'm wrong please do show me where -- is having to foot the "general" medical bills of everyone else in society. Usually those who pay little to no taxes.

The view is that it isn't fair to burden one part of the population by having them pay for the health and welfare of another part of the population. Especially when the people paying must, simultaneously, pay for their own individual care.

3) Much less, the view taken by people against national healthcare is precisely that it is *not* beneficial. Either because the government is slow to act, healthcare is rationed, or because people's care is prioritized. For instance, where the elderly who need a hip replaced (as in Canada) will wait as long as a year to get one, while the money that would have been used for them goes to someone else.

In private insurance the insurer must pay, under contract, for all medical bills that are covered. Insurance companies that do not pay often find themselves on the losing end of a bad faith lawsuit.

GERRYL: "People don't complain that their tax dollars are going to building roads...why be so upset that being taxed a little extra means that there is a fair system for all available."

That's because the roads are used and enjoyed by the people paying the taxes.

A "fair" system does not take what belongs to one person in order to give it to another. One of the pitfalls of such a system is that it creates a disincentive to get off the government dole (see Britain and Germany's unemployment laws).

Granted, a fair system (everyone gets what they're due) may not be a humane one (everyone gets what they need). But don't throw around words like "justice" or "fairness" when they obviously conflict with what you're supporting.