Father pushes for more funding

FALLON - It has been called the most extensive childhood leukemia cluster investigation ever conducted by the Centers for Disease Control and Prevention. It happened here, in this rural agricultural community in Northern Nevada. And it has concluded after three years of confusion and debate.

Many of those closest to the investigation are pleased with the effort, but others still call for more answers. In the Fallon childhood leukemia cluster 16 children have been diagnosed and three have died since 1997.

The expert panel on the cluster recommended that the Nevada State Health Department set up a research review panel of experts to decide who can do further research using the data and specimens collected during the three-year leukemia cluster investigation.

Jeff Braccini, father of 6-year-old Jeremy, who was diagnosed with acute lymphocytic leukemia in December 2001, said Tuesday opening the door to other researchers is fine, but the CDC should've done that a long time ago. He also has a problem with the lack of funding for this future research.

"The money is dried up," Braccini said. "There is no funding. They admitted that, no funding to do this further research. So we're not happy."

But he commended the CDC for setting out to do an environmental assessment and then doing it thoroughly.

"They did a phenomenal job finding out what is in my and my son's bodies. He is full of pollutants and chemicals . . . and then they stopped; it's not right," Braccini said.

The expert panel first came together in February 2001 to start the study into the sudden appearance of several cases of childhood leukemia in Churchill County. It consisted of experts with extensive experience in pediatric oncology, health effects of arsenic and investigation of leukemia clusters. The panel's final report on the investigation was released Monday night at a public meeting.

Families in Search of Truth, which is composed of families whose children have been diagnosed with leukemia and also concerned residents, issued a statement thanking the many organizations that were involved in the investigation.

"We believe that Fallon can and does serve as an example of what was done right and what should be done differently in a cancer cluster investigation," the release stated.

The organization vows to continue the fight to find the cause of the "excessive cancer in Churchill County."

Carinsa Rivers, whose daughter Sareynah was diagnosed with ALL in March 2000, said many people at the Monday night meeting did not understand that the state health department and the CDC are not the organizations that do all the research.

"A lot of people said something about research but I had to sit there and bite my tongue because I wanted to say 'these are not researchers,' but I understand why they asked that," she said.

Sareynah is doing wonderful, Rivers said. Just last week the 7-year-old visited her oncologist and got a clean bill of health.

"I am happy with the amount of effort they put into it (the investigation)," she said. "I'm happy they looked as much as they did. Other investigations into clusters haven't been as intense as this one has and I'm very happy with that. I'm happy they're not closing it, but they are going to move on and have a research panel on this cluster."

Rivers was chosen to be a part of the expert panel when it first was organized.

Dr. Tim Hockenberry, a Fallon physician, said finding out what to research next is the problem.

"They (CDC and other investigators) have looked into all the culprits so (we) need more research into what?" he asked. "I think more research is fine but who is going to fund it? Someone has to have an interest in the problem, get grants and funds from the government and others to fund it."

Hockenberry said one of biggest problems in this investigation are the conspiracy theorists.

"This is a group of people who think there has been a big cover-up and we don't want to find an answer, and I think they're wrong," he said.

Hockenberry added that often the people who get involved in these investigations want to find an answer to the problem and inform the public.

"The CDC and ATSDR did a really good job," he said. "They found what we assumed they probably would have, that no ALL cluster has ever been solved. They made a good effort at it."

He agrees that tungsten is one chemical that needs to be researched more.

The CDC determined in its investigation that elevated amounts of several chemicals and metals, including arsenic, tungsten and some pesticides were present in study participants. The panel reviewed the investigations conducted by the CDC, Agency for Toxic Substances and Disease Registry and the state health division and decided none of the environmental contaminants found in the investigation appears to explain the occurrence of childhood leukemia in Churchill County.

County Commissioner Lynn Pearce said the meeting showed this was the most in-depth study that could've ever been done.

"Going into it we knew it was going to be real difficult for them to link the cluster to anything specific, because to my knowledge they still don't know what causes childhood leukemia, so no finding wasn't a surprise to me," he said.