2010.05.08 – Cancer study funded Fed research to resume on rare blood disease


2010.05.08 – Cancer study funded Fed research to resume on rare blood disease

Reported on Saturday, May 8, 2010
By JOE PLASKO jplasko@tnonline.com

Federal funding earmarked for the study of a rare cancer cluster will now be used for its intended purpose.

Through the efforts of the Tri-County Polycythemia Vera Community Action Committee (CAC), and U.S. Sen. Arlen Specter, $2.5 million in research funds that had been designated to the Center for Disease Control (CDC) towards polycythemia vera have been restored.

Polycythemia vera is a rare disorder in which the blood produces too many red blood cells. It can cause a thickening of the blood that can lead to heart disease and stroke if not treated.

An unusually high incidence rate of p. vera has been discovered in an area of Schuylkill, Carbon and Luzerne Counties, particularly along Ben Titus Road in Still Creek, Rush Township. Over 30 cases have been documented.

Research has discovered that a large majority of those with p. vera have tested positive for a mutation known as JAK-2, which appears to play a role in the onset of the cancer. Residents in the tri-county region had the chance to be tested for the JAK-2 mutation last fall.

Henry S. Cole, a consultant to the Tri-County PV CAC, which serves as a watchdog to the research project, sent out a press release on Wednesday indicating that, according to unnamed sources in the CDC, the funding for the p. vera research was in danger of being cut by as much as $2.5 million.

Specter’s assistance led to the original $5 million in funding for p.vera study, as well as the additional $2.513 million in funds directed towards the study via the Consolidated Appropriations Act of 2010.

On Wednesday, Specter drafted letters to Tom Harkin and Thad Cochran, chairman and vice chairman, respectively, of the Senate Labor, Health and Human Services and Education Appropriations Sub-committee, as well as to U.S. Secretary of Health and Human Services Katheen Sibelius, requesting that the funding remain in place.

“Federal support is needed to examine the higher than usual incidence of polycythemia vera in the Schuylkill, Carbon and Luzerne tri-county region,” wrote Specter. “This funding will continue the important research begun in 2009 to further research, support epidemiological and environmental studies related to the disease, and improve the reporting of polycythemia vera cases.

“The community is understandably very concerned about the problem and still lacks concrete answers as to why this rare blood cancer has affected the region in such high numbers. The incidence of the mutation in that population calls for further study and the community is entitled to the best answers science can give them,” continued Specter.

The CAC also mounted a campaign to keep the funding the way it was, contacting media outlets and sending a resolution to CDC Chief Dr. Thomas Frieden urging for the restoration of the p. vera funds. The CAC’s Dr. Peter Baddick, Carol Martienssen and Joe Murphy also worked to sound the alarm.

On Friday, the CAC blogsite revealed that the CDC would utilize the funding as originally intended. The following was posted on the site:

“We received word this morning that the PV funds will be available for their intended purpose and that we can proceed with the planned work. We are thus moving forward with the contract modifications-options and new projects.

“While the funding has been restored the problem remains: illness and environmental hazards.”

Specter also released a statement on Friday.

“It’s great news that the funding will be used for its original purpose: to provide the community with the best answers that science can offer,” he said. “They deserve nothing less.”