Yesterday, Jane talked about how little we’ve heard from survivors of the health care system in the debate about health reforms. Insurance lobbyists, industry reps, chamber of commerce folks, all have gotten their say.

But survivors, regular Americans, and family members of those who haven’t survived the current system of bureaucratic health care rationing by profit-seeking bean counters in the insurance industry? They’ve been left to the side.

We’re trying to change that. You can tell your side of the story here. And we’ll make certain that your elected representatives hear from you.

Some folks survive their battle for health care. Others aren’t so lucky.

Nikki White was 32 years of age when she died of complications from lupus. But her journey from her diagnosis to her death is a perfect illustration of why current "health care" is neither good for our nation’s health nor geared toward care.

I’ve said this before: the current system is about maximizing profits because it is being run as a for profit business. Insurance companies, as publicly traded entities or private for-profit companies, have an overriding duty to do just that: maximize profits for their shareholders and investors.

But back to Nikki White, whose story is the perfect illustration of why what we are doing now does not work:

The CT scan would cost Ms. White at least $2,000 if TennCare wouldn’t pay. Each visit to the rheumatologist would cost another $80 and each blood test at least $183. Ms. White had been too sick to work regularly for four years, and she told her primary physician that she couldn’t afford to see the specialist again.

Many Americans have health insurance, and 47 million don’t. But lots of people are in a messy middle — sometimes insured by employers, sometimes by government, sometimes not at all. Ms. White was left without health insurance just as her disease took a turn for the worse. While battling to stay alive and going from doctor to doctor, she had to navigate among government programs, private insurance rules and hospital charity. . . .

The video above is from a Frontline investigative report on health care in America and around the world. Nikki’s story was featured, and starts at about the 34:00 mark.

This was a girl in college, hoping to become a doctor. She had to drop out of school because she aged off her parent’s insurance plan in order to find a job which offered insurance coverage just to get necessary medications for her lupus. But at that point, she was trying to find insurance with a pre-existing condition diagnosis as a strike against her.

As someone who lives with the same disease, I can tell you that if you do not take your daily medication when your lupus is not in remission, the pain can be excruciating and the disease only worsens from there without regular treatment. But with treatment? It can be manageable for most people.

Nikki was given a choice: your education or your health. Because finding a job with health benefits comes at a cost, too, since those are usually full-time positions.

And once her condition worsened — as it can do with lupus if yours is the fatal kind that begins to attack a major organ — and she was unable to work? What then?

Think about it: in most states, you lose your job, you lose your health care coverage. Think about how many Americans have been laid off, downsized or had their workplace simply vanish the last few years in this economy. And then tell me this isn’t a problem in this country.

We do ration health care here already: if you have, you have health care. And if you have not? You are on your own.

Medicare might kick in with a chronic illness, but you often have to wait months and months for that to happen. And if you need health care in between? The public either pays for your emergency room visit or you do without and suffer.

What if your illness is a communicable one that could infect anyone with whom you come in contact? Well, that’s just a risk we all take every day, isn’t it?

We cannot afford to continue health care as it is today. The only people who truly benefit from it are the ones walking away with the profits.

(For more on lupus: The NYTimes recently featured a series on lupus including patient voices about the disease (their video starts up immediately upon clicking, to forewarn you), a medical perspective and some baseline information about this chronic autoimmune disease. Even more information is available at the Lupus Foundation website.)

Yesterday, Jane talked about how little we’ve heard from survivors of the health care system in the debate about health reforms. Insurance lobbyists, industry reps, chamber of commerce folks, all have gotten their say.

But survivors, regular Americans, and family members of those who haven’t survived the current system of bureaucratic health care rationing by profit-seeking bean counters in the insurance industry?  They’ve been left to the side.

We’re trying to change that.  You can tell your side of the story here.  And we’ll make certain that your elected representatives hear from you.

Some folks survive their battle for health care.  Others aren’t so lucky.

Nikki White was 32 years of age when she died of complications from lupus. But her journey from her diagnosis to her death is a perfect illustration of why current "health care" is neither good for our nation’s health nor geared toward care.

I’ve said this before: the current system is about maximizing profits because it is being run as a for profit business.  Insurance companies, as publicly traded entities or private for-profit companies, have an overriding duty to do just that:  maximize profits for their shareholders and investors.

But back to Nikki White, whose story is the perfect illustration of why what we are doing now does not work:

The CT scan would cost Ms. White at least $2,000 if TennCare wouldn’t pay. Each visit to the rheumatologist would cost another $80 and each blood test at least $183. Ms. White had been too sick to work regularly for four years, and she told her primary physician that she couldn’t afford to see the specialist again.

Many Americans have health insurance, and 47 million don’t. But lots of people are in a messy middle — sometimes insured by employers, sometimes by government, sometimes not at all. Ms. White was left without health insurance just as her disease took a turn for the worse. While battling to stay alive and going from doctor to doctor, she had to navigate among government programs, private insurance rules and hospital charity. . . .

The video above is from a Frontline investigative report on health care in America and around the world. Nikki’s story was featured, and starts at about the 34:00 mark.

This was a girl in college, hoping to become a doctor. She had to drop out of school because she aged off her parent’s insurance plan in order to find a job which offered insurance coverage just to get necessary medications for her lupus. But at that point, she was trying to find insurance with a pre-existing condition diagnosis as a strike against her. (more…)

Christy Hardin Smith

Christy Hardin Smith

Christy is a "recovering" attorney, who earned her undergraduate degree at Smith College, in American Studies and Government, concentrating in American Foreign Policy. She then went on to graduate studies at the University of Pennsylvania in the field of political science and international relations/security studies, before attending law school at the College of Law at West Virginia University, where she was Associate Editor of the Law Review. Christy was a partner in her own firm for several years, where she practiced in a number of areas including criminal defense, child abuse and neglect representation, domestic law, civil litigation, and she was an attorney for a small municipality, before switching hats to become a state prosecutor. Christy has extensive trial experience, and has worked for years both in and out of the court system to improve the lives of at risk children.

Email: reddhedd AT firedoglake DOT com