2008.10.06 – Sen. Specter vows to aid cancer cluster group

The Times Leader

Sen. Specter vows to aid cancer cluster group

By Steve Mocarskysmocarsky@timesleader.com
Staff Writer

HAZLE TWP. – U.S. Sen. Arlen Specter on Monday pressed health officials for answers on a rare blood cancer cluster in Luzerne, Carbon and Schuylkill counties that was officially recognized in a scientific study released last month.

Ruth Kester Huskey tells Sen. Arlan Specter how her parents, who lived in the Tamaqua/Hometown Area, both died five years after being diagnosed with polythemia vera, a rare blood cancer. The senator was at Genetti’s Best Western in Hazle Twp. to meet in a roundtable discussion with community members and officials.

Don Carey/Times Leader Photos

And before a meeting he arranged with various medical officials and people dealing with the disease ended at Genetti Best Western Inn & Suites, Specter said his office would work with state and federal health officials to work on “a battle plan” to find answers that he hopes will prevent further development of the disease in the area.

The Agency for Toxic Substances and Disease Registry (ATSDR) in August released a two-year study that showed a high concentration of Polycythemia Vera – 33 cases – in a 15-mile radius.

Polycythemia Vera – commonly called P-Vera – is a rare bone marrow disorder that results in overproduction of red blood cells. One in 100,000 people are expected to develop it.

Specter asked health officials exactly what the study showed, what is being done now and what else must be done to find a cause and determine prevention methods.

Dr. Stephen Ostroff, director of the state Department of Health’s Bureau of Epidemiology, said everyone recognizes “the importance of moving forward as quickly as possible to try to get an explanation as to why there’s an excess amount of this particular disease in this area.”

The first phase of work done was to answer the question of whether or not there is an excess of P-Vera cases in the area, and if so, if the victims have any features in common.

The study found there is an excess, that there were no obvious features in common among the disease victims studied, and that there were some parts of this area in which the disease is concentrated.

“The next studies that need to be done will try to get an explanation as to why that’s the case,” Ostroff said.

Ostroff said that after consultation with the ATSDR – a sister agency of the National Centers for Disease Control – and researchers, a series of studies have been proposed to find the explanation.

Ostroff said that because of the intensive nature of the studies, “they would best be done by an academic partner which could devote the time and the resources necessary to do it in the right way, to do it in an unbiased fashion, to do it in a way that the community would be accepting of the work that’s being done. And Drexel (University) has been identified to do that. Once we are able to get funding to them, we’re ready to get started,” he said.

Specter said Congress will likely approve his request for appropriating $262,000 – an approximate amount needed for the first year of the study.

“The problem is that Congress is so slow-moving – unless there’s a national disaster – to take care of these issues. But I’m behind it and I’ve got a senior position on (the) Appropriations (Committee), getting very close to being chairman of Appropriations, and I’m pushing it hard,” Specter said.

Specter said the country “has been at war with cancer since 1970. Had we pursued the war against cancer with the same diligence of other wars we wage, many people (including) my chief of staff, a beautiful, young woman of 48, wouldn’t have died of breast cancer. A good friend of mine wouldn’t have died of prostate cancer. I might not have gotten Hodgkin’s (Disease) cancer,” he said.

“It takes a lot more activity. We have $30 billion devoted to National Institutes of Health for medical research, and I’m going to push to get more devoted to this issue,” Specter said.

Dr. Paul Roda, who has been treating many P-Vera patients locally, said less than 1/100th of the effort spent on learning how to treat Hodgkin’s Disease is being spent on learning how to treat P-Vera.

Specter said the National Cancer Institute has a budget of $5 million. “I will take the issue up with them,” he said.
Disease experience detailed

Ruth Kester Huskey said her parents, who lived in Rush Township, were diagnosed with P-Vera in 2003. Her father died in January and her mother died in September, and five years was too long to confirm there was a problem that needed immediate action.

Specter said research into the local cluster has been “too slow. I’d like to see it expedited. … I’m not satisfied. I want more aggressive action.”

Dr. Peter Baddick, who practices internal and orthopedic medicine in Weatherly, said there were 114 cases of polycythemia vera listed in the cancer registry for the area, but the latest scientific study only looked at 33 cases for various reasons. “The numbers are much higher than they quoted. It’s a serious problem,” he said.

“It took (Congress) five days to issue a bailout plan to bail out the banking industry, and nobody was dying from a terminal disease on Wall Street. But it’s taken five years and we still don’t have a program to study a life-and-death matter in our country. So we have some serious problems with the bureaucracy,” Baddick said.

Linda Wertman of Tamaqua said her 63-year-old husband, Merle, was diagnosed with P-Vera in 2002 and they have no idea how he contracted it. “That’s one of the reasons we’re here. If it’s because of the environment, fix it,” she said.

Harry Kepping, 67, who was diagnosed with Mantle Cell Lymphoma – another rare cancer – in 2002, also blames the environment. He used to live in Packer Township, four miles downstream of a federal Superfund site.

Baddick and many others in the room suspect contamination at the site formerly operated by McAdoo Associates is responsible for the cancer cluster. He asked that environmental experts be included on the research team.

Debra Trently, 53, of the Old Cranberry section of Hazle Township, said she was diagnosed with P-Vera about seven years ago, and her sister, who lives near Altoona, has a more advanced stage of the disease.

Trently said the symptoms lessened for a while after she moved to this area, but worsened when a steady stream of dump trucks carrying silt dredged from the Delaware River began driving by her home on the way to cap a nearby landfill in Hazleton about two years ago.

“I want to know where I can go for some medical help. … I have no insurance right now. I do not get treated for P-Vera anymore because I don’t have the money. … I want to live more than five years,” Trently said.

Roda said Geisinger has a charitable foundation for people who don’t have insurance. Trently said she couldn’t travel to Wilkes-Barre for treatment on a regular basis, but Roda told her to call his office and his staff would work with her to provide treatment locally.
Seeking a battle plan

Specter directed one of his staffers to “shepherd a battle plan” to be prepared jointly by the state Department of Health, the CDC and the ATSDR.

“In that battle plan I want to see what are the specs in determining the incidence of this problem in other places like West Virginia. … And what kind of research is necessary to further quantify the problem, what kind of research is necessary to find the answer and what kind of funding we can find,” and what is needed by Drexel researchers, Specter said.

Forty-two-year-old Hometown resident Joe Murphy, who was diagnosed with multiple sclerosis in 2003 and believes his disease might be related to the environment, asked that disease victims and members of the community be included in future meetings on the progress of any studies.

Bill Mackey, 64, of West Penn Township, asked that monthly reports on research progress “showing how many people are working on this and what they’ve been doing” be issued.

Specter said the issuance of periodic reports was a good idea.