Childhood Cancer Awareness Month: Hall of Fame, Hall of Shame

By: Suzanne Leigh
Published on the Huffington Post

To mark September’s Childhood Cancer Awareness month, I’m identifying the heroes and the heavyweights — and the tricksters and bottom-line bureaucrats.

Hats off to …

* The students at Clearwater Middle School in Minnesota, who last year showed solidarity with lymphoma patient Tate Maurer by shaving their heads so that the 12-year-old wouldn’t be “the bald kid.” Eighty-one children “mostly boys with a few girls” agreed to go smooth-scalped. (I’m open to adopting all those kids and especially those brave girls, by the way.) And kudos to the fourth-grade classmates of brain tumor patient Travis Selinka, 10, from California, who earlier this year decided to shave their heads, too. Speaking of his friends at El Camino Creek Elementary, Travis’s mom said, “15 boys went in [the barber shop] and 15 men walked out.” (Where are my tissues?)

* When corporations choose to donate to cancer research, they invariably pick an adult one with mass appeal. Hyundai has bucked this trend with its Hope on Wheels program, in which a portion of the sales of each new vehicle sold in the U.S. is directed to pediatric cancer. Hyundai has donated more than $58 million to childhood cancer research from 1998 to 2012. Its goal is to reach $72 million by year’s end.

* Would you like to make a donation to help people with prostate cancer/breast cancer/heart disease/diabetes? Most of us have heard these requests in the check-out line at chain stores, and if you’re a cancer parent it’s hard not to feel a pang of resentment. How come childhood cancers are off the radar for those retailers hitting up their customers? But Kmart has been doing just that. One of St Jude Children’s Research Hospital’s top corporate sponsors, the department store last year made $7.5 million through point-of-sales donations and proceeds of a St. Jude bear. It has raised more than $37 million since teaming with the children’s cancer hospital in 2006.

* Not every cancer parent has voted for President Obama, but they should recognize that under his Affordable Care Act, insurance companies can no longer deny or drop coverage because of their child’s “pre-existing condition.” And they can’t put a lifetime limit on the amount of coverage they provide. Credit should also go to the late Senator Ted Kennedy, himself the father of a son diagnosed with a childhood cancer, for his efforts in spearheading health care initiatives.

In the interest of bipartisanship, thank you former President George H.W. Bush for signing the first proclamation in 1990 for National Childhood Cancer Awareness Month.

Highway salutes to …

* The executive at Ortho-McNeil Pharmaceutical (now Janssen Pharmaceuticals) for telling admin assistant Cecelia Ingraham, whose daughter had died from leukemia, that she had to stop talking about her late child because it was making her colleagues uncomfortable. He allegedly ordered her to remove pictures of her daughter displayed in her cubicle because they were a “disruption.” Ingraham quit and later filed a lawsuit against Ortho-McNeil for intentional infliction of emotional distress, constructive discharge and discrimination. She lost that lawsuit in 2011.

Note to Ortho-McNeil/Janssen: If you’re dissatisfied with an employee’s performance, keep the conversation on track with talking points on “productivity,” “meeting deadlines” and “quality of work.” You should have steered clear of any references to Ingraham’s expressions of grief.

Post facto note to Ingraham’s “uncomfortable” ex-colleagues: Deal with it.

* When friends and acquaintances found out that Natasha had cancer, their reactions were predictable. They were sorry that our child was going through this and they were probably very relieved that their own children were not. But regret and relief wouldn’t have been the response of Stephanie Weddle of Indiana and Abreail “Abby” Winkler of Utah. Eureka! What better way of getting people to write a check than to pretend their own kids had cancer? Perhaps the most heinous aspect of this scam is that both Winkler’s 4-year-old daughter and Weddle’s 10-year-old son were led to believe that they had cancer.

Weddle is currently held in county jail. Winkler’s daughter is in the custody of her father, who says he hopes she will get “a slap on the wrist.” I think she’s entitled to a bit more than that figurative wrist-slapping, don’t you?

* It’s not unusual for insurances companies to deny coverage for “investigational” or “experimental” treatments for pediatric cancer patients. (Let’s be clear, an awful lot of oncologist-recommended treatments for kids with refractory and recurrent cancers are indeed “investigational,” because it’s rare for a drug company to pony up the $1 billion-plus needed for pushing a new therapy through the FDA process when the potential returns are so paltry with a pediatric market.) That’s what happened to the family of Kyler Van Nocker, a 5-year-old from New Jersey with recurrent neuroblastoma, now deceased. HealthAmerica refused to pay for an “experimental” treatment but earlier had given the green light to another one — one that happened to be significantly cheaper.

When Lorelei Decker, an 18-year-old from Oklahoma with Hodgkin’s lymphoma failed to respond to treatment, her oncologist at MD Anderson Cancer Center in Texas recommended a stem-cell transplant, this time from a matching donor. It was denied by her insurance company – not because it was investigational, but because it wasn’t “medically necessary.” Really? Shouldn’t this be a decision made by Lorelei’s oncologist? Fortunately the company did an about-face after her family took to social media. Lorelei remains in the hospital following her transplant. Her prognosis is unknown.

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