“Something’s not right.”
That’s the haunting assessment of Angel Myers, whose daughter has a rare, terminal brain tumor. She’s talking about Ocean Springs, where two other children have died from the tumor. Nationwide, the tumor known as diffuse intrinsic pontine glioma, affects somewhere between 300 and 400 people in a population of more than 325 million. So there are three cases in the immediate Ocean Springs area in a population of under 20,000.
No wonder the parents are scared. No wonder they are worried.
So far, health officials have said and done little to answer their questions. So we asked the officials, too.
“While the rate of DIPG in the small city was elevated over the time frame,” state epidemiologist Paul Byers emailed to the Sun Herald’s Margaret Baker, as she was reporting her excellent “Diagnosis: Death” series about the tumor cluster, “it is difficult to draw any conclusions from such small numbers of rare events.
“Because of the rarity, observation of the incidence of DIPG in a specific geographic area would need to be evaluated over a number of years to estimate a rate with any statistical stability.”
And he declined to be interviewed, agreeing to answer questions by email. His answers were far from satisfying.
He reticence about this matter strikes us as a little strange. He was outspoken in favor of vaccines earlier this year when someone put up an anti-vaccine billboard in Jackson, or when a Mississippian died from West Nile virus in July.
Doctors at the University of Mississippi Medical Center in Jackson were no more help. After the Sun Herald received authorization from the parents of the children for a doctor to talk about the tumors, Dr. Betty Herrington, the director of pediatric neuro-oncology at UMMC, suddenly reversed course and said she had no interest in being interviewed.
Another doctor called to tell Baker she was doing the right thing by looking into DIPG, but then asked not to be quoted.
Such behavior raises all sorts of questions, but mainly we wonder why all the secrecy? We would expect those charged with protecting the public’s health would be more forthcoming with the public.
Some good may eventually come of these families’ suffering. We suspect very few on the Coast had heard of DIPG. We expect there are those who feel the way we do. They want to know what they can do to help prevent any other families from enduring their pain. Our health officials should guide and lead those efforts.
Angel Myers plans to take her case to Washington, D.C., to press Congress for investigation and more money for research into DIPG and other childhood cancers. We wish her much success.
The editorial represents the views of the Sun Herald editorial board. Opinions of columnists and cartoonists are their own.