Steven and Sean on the Polar Bear Cam
Steven and Sean on the Polar Bear Cam

Friday, May 01, 2009

Kyra, the Swine Flu, and the Dramatization of Disease

I stayed with my parents last week, helping my dad out with my mom as she recovers from her recent open heart surgery.

As a rule I don't listen to any news on TV, but this week I've watched more cable news in the last three days than I've seen in the last six months.

Today there was this big news conference about the swine flu and there was video of people wearing HEPA masks and talking about their local pharmacies being sold out of antibacterial hand cleanser.

I decided to do some checking to see if I should be worried or not.

As of 30 Apr 2009 (updated 3 May), the number of laboratory confirmed swine flu cases in the U.S. is:

  Laboratory-confirmed cases Deaths
State/Country 4-30-09 5-03-09 4-30-09 5-03-09
Austria 1 1 0 0
Canada 19 70 0 0
Costa Rica 0 1 0 0
Denmark 0 1 0 0
France 0 2 0 0
Germany 3 6 0 0
Hong Kong 0 1 0 0
Ireland 0 3 0 0
Israel 2 3 0 0
Korea 0 1 0 0
Netherlands 1 1 0 0
New Zealand 3 4 0 0
Spain 13 13 0 0
Switzerland 1 1 0 0
United Kingdom 8 15 0 0
51 123 0 0
Mexico 97 7 506 19
97 506 7 19
Alabama 0 1 0 0
Arizona 1 18 0 0
California 14 26 0 0
Colorado 0 4 0 0
Connecticut 0 2 0 0
Delaware 0 10 0 0
Florida 0 3 0 0
Illinois 0 3 0 0
Indiana 1 3 0 0
Iowa 0 1 0 0
Kansas 2 2 0 0
Kentucky 0 1 0 0
Massachusetts 2 7 0 0
Michigan 1 2 0 0
Minnesota 0 1 0 0
Missouri 0 1 0 0
Nebraska 0 1 0 0
Nevada 1 1 0 0
New Hampshire 0 1 0 0
New Jersey 0 7 0 0
New Mexico 0 1 0 0
New York 50 63 0 0
Ohio 1 3 0 0
Rhode Island 0 1 0 0
South Carolina 10 15 0 0
Tennessee 0 1 0 0
Texas 26 40 1 1
Utah 0 1 0 0
Virginia 0 3 0 0
Wisconsin 0 3 0 0
TOTAL COUNTS 109 226 1 1
World Heath Oranization

The only death from swine flu in the United States so far was a a 22-month old Mexican citizen who had crossed the border with his family to visit relatives in Texas. The boy contracted the flu in Mexico and had several underlying health problems preceding the swine flu diagnosis. (source: Texas Department of State Health Services)

Almost all of the large number of swine flu cases in New York can be traced back to over 20 students from a Catholic high school who spent spring break in Cancun and came home sick. The students in New York have all been treated and released and have recovered or are recovering at home.

For the period 1972 to 2001, the number of annual deaths due to garden variety influenza averaged 41,400 per year in the U.S., but that little fact almost never makes the news. (source American Journal of Epidemiology)

I am having a hard time understanding this panic, tens of thousands of people in the U.S. die every single year from the flu and while it is great to be prudent and take precautions to prevent infectious disease, what we have right now is school closings and mass panic.

Enter brain tumors, a topic near and dear to my heart. For the period 2000-2004, an average of 15,596 people of all ages combined died per year from brain tumors. (source Central Brain Tumor Registry of the U.S.)

In 1995 the NCI reported the number of children who died from cancer, broken down by age: (source: NCI SEER data)

Age Number of Deaths
0-4 558
5-9 523
10-14 503
15-19 691
TOTAL 2,275

So in the U.S, 2,275 of our kids died from cancer in 1995, 569 of them from brain tumors. This number does not account for "benign" (non-invasive) brain tumors, which also kill our kids but in 1995 they weren't being counted.

Today, May 1st, is my niece Kyra's birthday. She would have been 18, a legal adult, but the thing is, she died in 1996 at the age of 4 from a brain tumor. My oldest son Steven was 18 months old when she left us.

We asked why. The doctors told us that pediatric brain tumors are rare, Kyra's tumor wasn't genetic, it was just the luck of the draw. In other words, sometimes sh*t just happens.

Seven years later Steven is having headaches and nausea, not severe, and we're seeing doctors who are prescribing allergy medication and we're drawing blood and finally I get hysterical and they order an MRI and the next thing we know we're staring at pictures of the baseball-sized glowing thing in his 9-year old head as he lapses into a coma.

Random chance? Air pollution? The will of God? Genetics? Too many hot dogs? Not taking the right vitamins?

Sometimes bad things just happen and we just need to bear our crosses, but in this case, nobody has even done the studies.

We know about high fat diets and lack of exercise and pesticides and cell phones but babies don't get cancer from those things.

There's a bill that was introduced late last year, The National Childhood Brain Tumor Prevention Network Act, (HR 653 / S.305). We're asking for $25 million dollars per year for 5 years ($125 million total) to conduct a comprehensive, nationwide study into the causes of pediatric brain tumors. So when a kid is diagnosed with a brain tumor, participating hospitals will take a comprehensive medical history and draw blood, maybe not just from the child but also from family members to see if there is any pattern to these monsters that come from nowhere to grow in our kids' heads.

$125 million over 5 years. $25 million a year. There are homes in San Diego County that cost that much, even in the current economic downturn. Right now our little bill is sitting in the House Committee on Energy and Commerce, waiting for co-sponsors and for someone to care enough to bring it to a vote.

On the news this week, amidst the school closings and HEPA masks and press conferences and unsubstantiated deaths, I hear that president Obama asked Congress to add an additional 1.5 billion to fight the swine flu. (source: Washington Post)

1.5 billion dollars. Just like that. For a disease that has so far affected less than 300 people internationally. A disease that has yet to kill a single American.

Here we are, our little parent groups, jumping through hoops in between doctor's appointments and trying to figure out how to save our kids' lives, trying to get someone to listen to us and give us $40 million less than than what AIG paid its top executives. For a 5-year nationwide study, to try and help the hundreds of our kids that die every year from a disease that nobody understands.

Sensationalistic news reporting is nothing new, but if I hear one more of those incompetent idiots on the cable news quoting hundreds of deaths from the swine flu with data pulled from heaven only knows where, I think I'll scream.

And despite the fact that California has declared a state of emergency and I live only 30 miles from our nation's southern border, you won't find me donning a HEPA mask to go to Costco anytime soon.

Instead, I'll be making yet yet another call to my Representative in Washington in the hope that persistence pays off and he'll put his petty little reasons why not and agree to be a co-sponsor on our little bill.

I'm not holding my breath, but I'm still got to try. For Kyra, Steven, and the too-many-to-list kids I've come to love both in heaven and on earth.

From the bottom of my heart to the tips of the stars...

Happy Birthday, Kyra, from the bottom of my heart to the tips of the stars.

- Kathleen

Swine flu information:

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Blogger K.M. Camiolo said...

Thank you, K...
I don't watch the news, either. Makes me insane. We have 5 cases in NJ now, but I told my kids (who are coming home from school in some state of alarm each day) that we will work on washing our hands and not sneezing on people, which are both Good Ideas Anyway! Something sick about my kids who have frickin' brain tumors worrying more about the disease dujour than the cross they already bear.
I already got one e-mail from someone with an article about how this is really a plot to mass-vaccinate people. Why do people send me these things? Maybe they don't Hear Me Screaming through the computer? ; )
So thank you for being a voice of reason...even if you are somewhat of a voice crying out in the wilderness!
And really, if it's super important news, John Stewart will cover it ; ) ...
I should contact someone in D.C., Loice asked me to...and then life happened, and with NF things are different. But I should.
gentle hug to your mom, and to your superhero son...and to you on Kyra's birthday.
K, G & R's mom

May 01, 2009 7:27 AM  
Blogger Mylissa said...

Thanks so much for this. Beautifully done.
Habitat for Hope

May 01, 2009 10:28 AM  
Blogger KMGheno said...


As you have done so often in the past, you have eloquently stated the painfully obvious (and infuriating) truth in a way that makes me want to both cry and act. We have been chasing down potential connections between pesticides and cancer; seems futile but gives us an outlet for our frustration, confusion, and anger.

I'll add HR 653/S.305 to the requests we have with our Honorable Jackie Speier. Thank you for your continued vigilance and the energies you expend in educating and sharing your experiences with others - I for one completely appreciate you.

Big hugs,

May 13, 2009 8:47 PM  
Blogger Unknown said...

So many.
Angry tears at the injustice.
Love, Shell

May 15, 2009 12:11 AM  
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August 25, 2009 9:00 PM  

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