What Do We Tell Isabelle?

By Donna Smith, American SiCKO, communications specialist, CNA/NNOC

CHICAGO – Many years ago as an undergraduate in college, I read a book titled “Disturbing the Universe” (1979) by physicist and mathematician Freeman Dyson. In the book, Dyson shares one particular recollection of his difficulty as a father talking to his then young son about the realities of nuclear weapons development and use and how Daddy’s work might contribute to that body of knowledge.

Dyson wrote that it was difficult explaining such things to a child over breakfast.  Indeed.

And as I read more and more patient horror stories that make their way to the guaranteedhealthcare.org Web page from all over the country, I have begun to think perhaps that is the test by which we should determine our future healthcare policy.  

Brandy 

How will we explain our actions toward one another in the area of healthcare to our children over breakfast?

How will Brandy Kozisek, 32, of Eugene, OR, explain to her daughter Isabelle that not only does her mom have a brain tumor for which she cannot get care but that the condition is genetic and the insurance company won’t pay to test Isabelle either? 



How do we suppose those conversations must go?

 

Brandy pays her health insurance premiums every month to the Providence Insurance Company. So when she got sick, she assumed she would be able to get the care she needed. She told us, “I have been to the emergency room more times than I can count in the last three years. At one point I stopped going to the doctor out of fear. I lost my vision and various other symptoms for a short period in April 2005. I immediately got an MRI-which showed a cavernous angioma but no one informed me of this until I had another MRI this December (2007).”

What should she tell Isabelle?

She continued, “Three years later I still cannot get anything done. I have done much research to find out that angioma's affect 1 out of 200 people, but because most people don't ever find out they have them until they are dead, doctors and insurance companies and the like call them rare. How is one out of 200 rare? For the most part they are genetic, meaning my children have a 50/50 chance of having a cavernous angioma.”

But Brandy didn’t get the information or help she needed. “I got information from the national organization for rare diseases or NORD. Brain surgery is expensive, and most people don't know they have this. Except, here is the information I got: There is a higher incidence of this brain tumor in children not adults and a larger size incidence in children and children have more of these than adults.”

How should she explain this to Isabelle?

 

“I am praying my children don't have this. I have to prove to the insurance company that two other people have this disease in my family before they will test my children -- even though I have the genetic form of it. Also I have to fight to see someone who has experience dealing with angioma patients. My doctor really saved a lot of money for that insurance company by not doing anymore tests or referring me to expensive specialist though,” Brandy mused.

But just how – exactly – should we explain this to Isabelle?

 

Should this young mother explain that profits for Providence Insurance are more important than mommy’s brain tumor?  Should Brandy tell her young daughter she might have the same tumor as mom but Providence Insurance doesn’t want to pay for the test to find out much less any surgery or treatment mom or daughter might need?

And how might we expect young Isabelle to react to that news?

 

But Brandy isn’t done fighting. “I read a story about a person with this tumor who lived in UK and they got immediate help and surgery. How is it that I can't even get to the right doctor after three years? It's a good question, and I will spend most of the rest of my life fighting for more research, genetic testing, and awareness for my condition.”

She will spend the rest of her life fighting instead of being treated and cared for and cherished for the valuable young mother that she is…

How will we all explain that to Isabelle?

 

I am going to explain it to her by protesting in San Francisco on June 19th, at the corner of 4th and Howard at noon.  I will protest on that day in that place because Brandy cannot and because I want Isabelle to know that when all the insurance company leaders who make their money denying care to her mom are sitting down to an executive style lunch in a comfortable convention center, some of us will be protesting that the money the Providence Insurance Company CEO and other administrators are spending in San Francisco to attend the AHIP (American Health Insurance Plans) conference celebrating insurance companies could have been spent on her mom’s treatment and on her testing.

Isabelle, I care and I will not stop caring and I will not stop protesting until the day when I can tell you – when we all can tell you – that your life is as valuable as any one of those insurance company bosses.

 

.

 

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insurance&The Bomb annihilate

Only by telling stories about Isabelle and countless others like her - over and over -- will we penetrate public apathy about the cruel tragedy of our insurance-profit-driven health care. You are correct. The indifferent blast of a nuclear bomb and our pay-or-die health care system have much in common. No caring exists in either of these doomsday scenarios. Notice how our nation's "leading" politicians love both our nuclear stockpiles and our non-health care system.

Repeating the message

And we'll force them to remember our stories, our faces and our votes. They still need us in the ballot box. And they still need our belief in the system of government that so richly rewards their needs. So, our elected officials will need these reminders over and over again until they get it.

Have and Have nots

It's amazing how both Nuclear Power and no insurance or underinsurance can also kill. It's also amazing how the insurance lobby and politicians, all who have insurance, want to deny those of us who don't the right to health care.

It's almost like those who have want to keep us without so we can never empower ourselves to reach their level of financial success.

People power too

Many just fail to think about those who elected them and those who pay their benefits. We must remind them over and over and over again. Just like those who lobby them with money call and write and remind them, we too must call and write and remind them about who really pays the bills -- the American taxpayers, working people with expectations of true representation and not abuses of power.

Go Donna!

Well said!

And without even noting that Brandy's condition is now on the books in regards to Isabelle, and that Providence and other insurance companies would almost certainly exclude it as a preexisting condition for new insurance.

Whether Brandy has two other relatives with it or not.

After all, marriage counseling, C-sections, etc. are preexisting conditions - no doubt a mom with a condition that you've got a 50 percent chance for counts too.

And where else might this also happen? Well, sure. Lots of places: Paraguay, Zimbabwe, Burma. I meant in the industrialized world.

Shame.

p.s. Ave Cassandra says hi.

Three cheers for the Colorado single payer effort!

Thanks for the shout out! I know my single payer colleagues in Colorado understand and are fighting this brutal system too. There is nothing -- absolutely nothing -- family friendly about a system like ours. The private health insurance companies do more to tear the fabric of the American culture we sometimes hold dear than any foreign enemy.

Thank you, Kristen, for your courage.

Brandy's plight and my wife's and mine

This is one more sad story in the thousands and thousands that nearly everyone can tell about inadequate healthcare because of money. Most people never realize how inadequate their healthcare is until they develop a serious problem, then they find out too late. My family's personal story: My wife Susan had multiple surgeries in the past for an injury received during college. She has completely recovered to the point that she no longer seeks or needs treatment for the problems that the surgery addressed. Nonetheless, she was denied when I went to get health insurance for our family. Since I pay my own health insurance, Susan had to get a separate policy from the State-sponsored plan for "uninsurable risks." I have a policy that covers my five children and myself. Ironically, the initial policies are issued by exactly the same insurance company, since the company that acted as middleman for the state-sponsored plan is Blue Cross, as is my self-paid insurance. Now, a few years later, the Blue Cross plan has been replaced by its local competitor but I could just as easily get the family's insurance (without Susan) through that competitor.
Why would a company split one person out from a family? Money--pure and simple. Adding Susan to the family plan would produce less revenue than having her insured separately, partly because of the higher rate she pays but MOSTLY BECAUSE OF THE GOVERNMENT SUBSIDY for each "uninsurable risk" that the insurer receives.
Something wrong with that?? I think so. The insurers are sucking money out of the government to boost their profits while at the same time lobbying intensively through John McSame et al (Harry and Louise redux) to convince Americans that "government health care" is the big baddddd bugaboo.
Think that's all?? NOOOOO. The insurers now recognize that universal health care is coming and they have gotten wise on how to continue their profits. It's a simple concept: they position themselves in the middle of the money stream and siphon off their 15% from a much larger river of money. That's what the plans of HillarackObamton are: a way to pretend that we have national health care when in fact we have a balkanized system of insurers getting the benefit of even more government spending, because they control the money stream. The author of both Democrat plans is Jacob Hacker and if you are a policy wonk, you can read all about the why the insurers love the Democrat plan in the latest Health Affairs (including an article by Hacker.) http://www.healthaffairs.org/
My story is not over: I have a 9 year old son with siezure disorder. Fortunately, i bought my current health insurance before his diagnosis, otherwise he too would have been excluded from coverage. But I am 58. When I turn 66 in 8 years, he will be 17 and my other kids will be younger. I will be on Medicare and will be INELIGIBLE to continue the family plan. What will my kids do? My wife cannot sponsor a family plan. The kids cannot get a family plan. Chances are, we will be buying an individual policy for each child and the 9 year old will be uninsurable, just like my wife. Terrific system we have isn't it?

To worry such fine people is a crime

Clark,

Thanks for the comment and for fighting so hard in Utah to help change this system. I find it so terrible to think that you would need to begin worrying years and years in advance of your own qualification for Medicare about what your family will do.
Every day, I dedicate myself -- as I know you do -- to changing this system so our kids and grandkids never have to go through this worry and live their lives as dictated not by their aspirations and dreams but by the rules of corporate insurance giants. We are better people than this system demonstrates. I know it and so do our friends and neighbors throughout the nation.
Together, we will change it. Together, we will fight on.

Insurance companies have bad manners, and

they don't belong in health care because they're bullies. They profit at the expense of sick people, and when hospitals and doctors and nurses ask them to pay for the care sick people need, the bullies say "no;" so then, people get sicker and die. When something is wrong, we have a responsibility to fix it.

I would tell Isabelle that we are going to do the best we can
to make sure that they never hurt anyone again. We're going to get together in San Francisco on June 19th and tell the insurance company bullies they're not welcome in the health business anymore. We're going to tell our politicians that they have a responsibility to make sure the government serves the needs of the people. We want to take care of each other. We have a duty to take care of you, Isabelle, and your mother. That's good manners, and that's good public health policy.