Tuesday, 04 April 2017 17:37

OM testing vote a curious exercise

Written by  Lee Sullivan

These are some facts to consider as the effort to learn more about ocular melanoma (OM) cases in the Huntersville area continues.

• Despite the Town of Huntersville’s eagerness to invest part of a $100,000 research grant in initial environmental testing at and around Hopewell High School and other areas in town, the highly regarded Hart-Hickman consulting firm in Charlotte — the company in position to be paid for the work no matter what they did or did not find — concluded that digging holes and taking samples would not be an efficient use of the town’s funds without more information about exactly what to look for

• Despite initially being ignored when they recommended a direct evaluation of and communication with OM patients and their families — through personal interviews, geospatial analysis, tissue sampling and other research-based practices — would be the best first steps to create a baseline of information about the local cases, a vast network of cancer, eye care and research specialists stayed committed and continued their voluntary efforts to expand their network to incorporate more insight and professional opinions about the Huntersville cases

• Despite their insistence that the local cases deserve attention, and that the mystery surrounding the occurrence of 12 known cases of OM in and around Huntersville in a 10-year year period — for a disease that statistically impacts only 5 or 6 people out of one million each year in the entire country — demands intense scrutiny, the individuals and families directly impacted by the disease do not share a common belief about the best approach research should take. For proof, consider that while Janie and Scot Slusarick, the parents of a 23-year-old OM patient, were addressing the Town Board Monday night to encourage environmental testing, other local OM patients and families were talking to Dr. Michael Brennan about scheduling meetings with a geospatial researcher due in town this weekend.

With that in mind, let’s consider what happened Monday night at the Huntersville Town Board meeting.

During public comments, the Slusaricks shared their beliefs that research funds should be targeted to test soil, water and air near Hopewell, where three of the local residents later diagnosed with OM, including their daughter, Summer Heath, attended school and near where several other OM patients lived. It was an understandably compassionate and moving presentation, enhanced by the haunting fact that every six months Summer and her parents must endure a check up to see if her cancer has grown.

Soon after, Mayor John Aneralla, after admitting he has been on the “periphery” of discussions about the issue, commandeered what was supposed to be consideration of two proposals submitted for scientific and medical research about the Huntersville cases to declare his support for environmental testing, dismissing the fact that the company hired to do just that has stated that testing, without more information, would be non-productive.

In the absence of more detailed information about the research proposals and an explanation of how they tied in with a master plan proposed by the volunteer network of physicians and researchers, Huntersville commissioners voted to delay a decision on the proposals, which put the first phase of the research — the detailed geospatial and epidemiological analysis of the community and OM patients scheduled to start next week — in limbo. (Soon after the meeting, a process began to authorize the geospatial studies, but at the Citizen’s deadline, no decision had been announced.)

Aneralla and the commissioners apparently didn’t know the proposed schedule for the geospatial process (even though the submitted paperwork indicated work would start the week of April 10) and they apparently didn’t know that the geospatial aspect endorsed by the medical experts was also considered by many (including the Hart-Hickman firm) an ideal precursor to productive environmental testing.

Some of that can be blamed on the absence of Commissioner Rob Kidwell, who has been the primary liaison between the town and the vast network of those involved in the OM effort but was not at Monday’s meeting because of work responsibilities. But Kidwell shared information about the proposals last week in e-mails distributed to several people including Aneralla and members of the media. In those messages, Kidwell clearly stated that “soil sample testing, based off the results from the Geospatial information gathered” was still part of the overall plan.

How all these factors converged into a Town Board decision to take no action remains troubling, but it’s also important to point out that no one expects the commissioners to be experts in these complicated fields. The environmental consultants have made their position clear, and the medical experts have provided their advice free of charge. It seems like the best approach at this point is for the mayor and the commissioners to listen to them.

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