NOTIONS: A kid, a shave, a health care dilemma

For the second time in his young life, 9-year-old Joey Chamness had his head shaved last week. This time, the skinhead look is voluntary. Last time, it was chemotherapy.

On a Thursday afternoon in January 2005, Joey was playing soccer when he felt pain in his left leg. He’d experienced this before, but not this bad.

So Joey’s parents called the family pediatrician to schedule an appointment. The following Monday, the doctor took a look and said it was probably growing pain. But just in case, he ordered an X-ray.

The next day, Joey’s dad got a call at the office. The pediatrician said there was something unusual on the X-ray. So he wanted Joey to have some more tests at Riley Hospital for Children.

On Wednesday, Thursday and Friday, Joey had a CT scan, a bone scan, an MRI and a biopsy.

After waiting through the weekend for results, the Chamnesses had their worst fears confirmed. Joey had cancer in the leg bone just above his knee.

Now, the Chamnesses are well-educated people with financial means and lots of connections. Briget Chamness works for Citigroup. Chuck Chamness heads the National Association of Mutual Insurance Companies.

So, within the first three days of February, they contacted a friend who’s a research physician. That doctor put them in touch with another research physician whose child had suffered cancer. Through these experts, the Chamnesses learned where and how to find information on the latest treatments and top experts in pediatric bone cancer.

With what they learned, Chuck and Briget talked with Joey’s doctors at Riley and decided to also consult with an oncologist and orthopedic surgeon at Memorial Sloan Kettering Cancer Center in New York City.

One of Briget’s aunts, a New York appellate court judge, knew someone who knew someone at Sloan Kettering. Those connections got them in the right door right away.

So within four days of diagnosis, Joey was seen by some of the nation’s top physicians for what ailed him at two leading hospitals in two cities. He began chemotherapy at Riley just a few days later, returned to Sloan Kettering for surgery in April, ended chemotherapy in October, and is now in remission.

And while Chuck and Briget Chamness regret not one string they pulled to save Joey’s leg and life, they worry about those who lack the ways and means to do the same.

“My wife and I enjoy an excellent network of friends in the medical profession, business associates, political leaders, financial resources, health insurance, etc.,” Chuck said, “yet we found the process of researching the medical options-specifically which doctors and hospitals to use-to be a daunting challenge.

“Considering that human lives are at stake, and these decisions make a difference, I can’t believe there’s no consumerfriendly national database that families like ours can use to research doctors, hospitals, number of cases treated, mortality/success rates, training, etc. We’re confident we made the right choices for Joey, but it wasn’t easy.”

Chuck and I got into this conversation in the hallway during the Indiana University Business Conference a few weeks ago. Aptly called “The Health Care Conundrum: A Call for Leadership,” it featured a panel of corporate leaders, many of whom called for just such a database.

But even if we get one (and lots of people are working it), will the research that goes into it be everything possible, given federal reductions in research funding? Will the data be understandable to average folks? If not, will there be enough primary-care doctors and nurses around to help us-given that many health care payors are cutting what front-line health professionals earn? And even if we can find our way to the best care, how will the millions of uninsured Americans afford it?

By shaving their scalps, Joey and Chuck Chamness are aiding one aspect of this dilemma. Their new dos, or lack thereof, helped raise tens of thousands of dollars for children’s cancer research through the St. Baldrick’s Foundation.

But even if that research unearths miracles, will the next Joey and his family be able to find and afford them? It’s a conundrum enough to make one’s newly shaved skin crawl.