We’ll find out if the senators who were crying in the moment will be ready to get serious about cancer

Jonathan Alter in Newsweek:

It’s too bad that Hamilton Jordan isn’t still alive to remind the media that Ted Kennedy isn’t already dead. Jordan, who died last week after surviving four different cancers for 22 years, would have loathed those funereal and, in the case of the New York Post (TED IS DYING), offensive headlines about Kennedy. So does Kennedy, no doubt …

We’ll soon find out if the senators who were choked up last week at the prospect of losing their beloved colleague will be ready to get serious about cancer. Think we’re already spending enough? Jordan sent me an e-mail toting up how we spend more in six months in Iraq ($54 billion) than we’ve spent in 30 years on the National Cancer Institute, which funds most cancer research. Today, only two in 10 grant proposals from qualified researchers are funded by the NCI, which means that plenty of possible cures die for lack of funding.

Newsweek site carries video of Sen. Robert C. Byrd (D-West Virginia) apparently weeping as he delivers a statement about Sen. Kennedy.

See earlier post.

See also: Networks join forces to fight cancer.

He was 32 at the time, the essence of cool and one of the most powerful men in America. I was 25, toiling in relative obscurity in the depths of the White House press office.

He dropped by my office occasionally to read editorials clipped from out-of-town newspapers. I tiptoed by, awestruck, as he thumbed through my files of tattered clippings, certain that the information he sought was destined for the President’s ear alone.

My earliest impressions of Hamilton Jordan, the former White House chief of staff, were shaped by those clippings. Young and brash, the press had said of him at the start. Cocky. Brilliant. A political boy wonder, he had devised the strategy that brought Jimmy Carter to Washington.

With that 80-page memo, Hamilton had changed my life and the lives of countless others, leading us to Washington under a banner of change. Years later, I told him that he got the credit for my marriage, since I never would have met my husband had I not been among the lucky ones swept into the White House in the spring of 1977.

Hamilton waggled his eyebrows and quipped that he hoped it was credit –- not blame. He then got down to what really interested him, asking many questions about our daughter’s battle with leukemia and offering encouragement with an earnest squeeze of my hand.

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About two-thirds of pediatric cancer survivors experience at least one late health effect of treatment, and for more than one-quarter of survivors it is severe or life-threatening.

From the Los Angeles Times, an extended feature about young adults who have survived childhood cancer only to find that their health is now threatened by the very treatments that once saved their lives

Cancer therapies injure, starve or kill healthy cells along with malignant ones, and as a consequence, survivors have a heightened risk of health problems, including early heart attacks, second cancers, stunted growth and infertility.

… The developing brain — and psyche — can be affected as well. Radiation to the brain can result in a drop of 20 or more IQ points, causing learning disabilities for some. And while some cured youngsters enter adulthood feeling a renewed sense of purpose, others must deal with lingering bitterness and trauma from their treatment, which can emerge as depression or anxiety when they become adults.

… Only recently is the medical community understanding the importance of lifelong health monitoring to help them avoid, or detect early, the host of medical risks that could lie in their path.

Related links:

• Programs for childhood cancer survivors
• Survivors tell of their experiences with childhood cancer

From Time magazine:

South African sprinter Oscar Pistorius, a double amputee who races on carbon blades, is named to the list of the World’s Most Influential People in Time Magazine’s annual issue. Paralympian Pistorius is challenging the rules in an attempt to compete in the Beijing Olympics. (Earlier post here.) The International Association of Athletics Federations (IAAF) ruled in January that Pistorius could not compete because his blades were said to give him an unfair advantage.

Time’s profile of Pistorius was written by Erik Weihenmayer, the only blind person to have climbed Mount Everest (earlier post here). Weihenmayer says Pistorius is “on the cusp of a paradigm shift in which disability becomes ability, disadvantage becomes advantage.”

Also featured in Time’s annual 100 issue:

• Jill Bolte Taylor, a brain researcher who studied her own stroke and became a powerful voice for brain recovery (video here);
• Cyclist and cancer survivor advocate Lance Armstrong;
• Suzanne and Robert Wright, founders of Autism Speaks

By the Associated Press in the New York Times:

Summer camps just for kids with chronic diseases are booming — places to learn about epilepsy or finally meet someone else with Tourette’s tics or slice open a cow’s heart to see what’s wrong with their own.

Now fledgling research suggests such special camps may offer more than a rite of passage these children otherwise would miss: They just might have a lasting therapeutic value.

… ”How do you live well with a chronic condition? I believe in part, the power of being amongst your peers normalizes the experience,” explains Sandra Cushner-Weinstein, a social worker at Children’s National Medical Center who founded the hospital’s weeklong camps for five illnesses, and is studying the impact on campers.

From the Vancouver Sun:

After her daughter was barred from playing on a youth soccer team because she has Down syndrome, Abbe Gates of Vancouver started a team for children with special needs.

Sadie Gates and her teammates will take the field today at McKechnie elementary in Vancouver and play soccer. There are people in this world who still believe this is out of the ordinary. This is a shame.

Newsweek reexamines anxieties surrounding autism, a mystery with no known cause. The uncertainty is fueling an ongoing vaccine debate and harsh divisions within the autism community about how to view and treat the disorder. While some feel that autism is a disease in need of a cure, others are calling for neurodiversity, the idea that differences in human behavior should be celebrated.

“Our feeling is that the autism spectrum is an intrinsic part of our personality that cannot be separated,” says [Ari] Ne’eman, [president of the Autistic Self-Advocacy Network and a 20-year-old university student with Asperger's syndrome.]

And he worries about research that might one day locate genes and other markers that could help doctors test for autism. Researchers say such knowledge would allow them to intervene early, during a critical window of development in the first year of life. Ne’eman’s fear? That autism will become like Down syndrome—essentially selected out of the population.

An accompanying chart of NIH research funding shows autism is expected to receive $128 million this year, or approximately $85.33 for each of the 1.5 million people diagnosed.

Of the conditions named, Down syndrome receives the smallest amount of research funds, both in the aggregate and on a per capita basis, with a total of $17 million or $48.57 per person diagnosed.

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