Tyendinaga parents refuse to hand over medical files to doctor

The parents of three children diagnosed with leukemia on Tyendinaga Mohawk Territory are refusing to sign a waiver allowing a doctor to examine their medical records for possibly links.

By Kenneth Jackson
APTN National News
The parents of three children diagnosed with leukemia on Tyendinaga Mohawk Territory are refusing to sign a waiver allowing a doctor to examine their medical records for possible links.

They believe the doctor picked by the band council isn’t an expert and shouldn’t be the one to look over the medical files.

“It’s hard,” said Dawn Sero-Loft, the mother of Paula, 13, who was diagnosed with acute lymphoblastic leukemia (ALL) earlier this year and died in September. “The information is there they just need to get an expert on leukemia.”

The Tyendinaga band council has come under fired in recent weeks because of the leukemia cases. The community is demanding proper water testing, including around the landfill that was closed several years ago. They don’t feel it was done properly but the band council said it was closed as per proper procedures.

The reserve has been on a boil water advisory for several years and at any given time about half the wells have undrinkable water.

The parents and community members were told at a town hall meeting in November by Dr. Richard Schabas, the medical officer of health for Hastings and Prince Edward Counties, that medical science didn’t support their theory that ALL is linked to the water.

At the meeting Schabas said while it’s a concern to have a “cluster” of cases he said it happens and it’s more of a case of chance.

He repeated his beliefs in a letter to the band council Nov. 28.

“You have informed me that his consent will not be forthcoming. As a result, my comments rely entirely on the information you have provided to me and can only pertain to childhood leukemia in general, rather than to any specific cases in your community,” said Schabas in his letter to Chief R. Donald Maracle.

At the meeting Schabas said he wasn’t an expert in leukemia and based his opinion on medical science he read and consulting with other doctors. He also said there isn’t much known about what causes ALL.

“According to Dr. Schabas he doesn’t know what causes it so what’s the point. In my understanding why give him that information if he doesn’t know what to do with it. He already said he wasn’t an expert in leukemia,” said Sero-Loft. She also said she’s refusing until the band does proper water testing.

In an interview with APTN National News, Schabas said the families don’t want an expert on leukemia but someone trained to do such an investigation.

“The expertise required to do an investigation like this is not the same as being an expert in leukemia. Someone who is an expert in leukemia is going to be an expert in the treatment of leukemia,” said Schabas. “This is doing an epidemiological investigation, which is a different thing and I think I have the full skill set to do that.”

He said anyone who did the review would work very closely with a leukemia expert.

“The key question here is, which obviously is first and foremost in everyone’s mind, are these just three separate events that happened by chance that happened together in time and space or are they somehow linked. Is there some sort of common cause or common exposure which caused these three cases,” he said. “The key to doing that is to go back and look closely at the biology of the cases.”

In a preliminary review, Schabas believes the “overwhelming likelihood” is the review would lead nowhere but is still offering to review the files.

One area that the community believes could be a cause is the chemical benzene which has been found in water on the reserve. But Schabas said it’s known to cause a different form of leukemia, acute myeloblastic leukemia. However, there has been some evidence to suggest benzene is also linked to ALL, but Schabas doesn’t give it much weight.

“Evidence linking benzene and ALL is very weak and, in my opinion, should not be considered causal,” he said in his letter.

Schabas said most childhood leukemia is ALL and there is one case per year for ever 25,000 children up to 15-years-old. Preliminary analysis showed the Tyendinaga area doesn’t have higher than average rates for leukemia over the past 27 years.

“However, a cluster of three cases of ALL in one year in a small community is very unusual,” he said.

Tyendinaga has a population of about 2,500.

Two of the children attended Quinte Mohawk School while the third attended a different school. Parents have been concerned about the water quality at Quinte. Water testing there has been questioned by the parents.

The community has gone as far as file a criminal complaint for alleged criminal negligence of the band’s handling of the water testing with the Tyendinaga police who forwarded the file to the Ontario Provincial Police.

Some children in recent weeks have also developed body sores. Parents have said doctors don’t know what’s causing the sores. Another child was recently diagnosed with brain cancer.

Schabas told Maracle he’ll be proceeding with a broader analysis of cancer rates in Tyendinaga in the next few weeks.

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