Researchers studying an unusually high incidence of mesothelioma among Iron Range miners and their families reported they are “making progress” as five-year program gets underway, according to the Star Tribune, which serves Minneapolis and St. Paul. The $4.9 million research program was funded by the Minnesota state legislature in April.

The program is being directed by the University of Minnesota. Researchers held an open meeting yesterday evening to share initial results. The program, which involves health screenings for residents of the Iron Range, particularly mine workers and their families, began in Summer 2007, but got a boost when the legislature approved the funding to expand the study significantly. The funding established the Minnesota Taconite Workers Lung Health Partnership task force.

The Star Tribune reports that the program will expand in 2009 to include a respiratory health assessment of 1,200 active and retired miners, as well as 800 spouses or partners. Participants will be selected at random. Physical testing will be handled by the Virginia Regional Medical Center, and testing is exected to run for a period of about 6-9 months.

While mesothelioma is almost exclusively associated with asbestos, researchers are investigating whether or not there is a link between taconite dust – which is produced in the Iron Range mining process – and mesothelioma. To date 58 mesothelioma deaths have been linked to the Iron Range.

According to the Star Tribune report, there are four ongoing health studies associated with this project: a mortality study under the direction of the Minnesota Department of Health related to miner deaths; a cancer rate incidence study; a respiratory health assessment for miners or former miners; and an occupational exposure study. In addition, the paper reports two environmental studies are part of the process as well, under the direction of the Natural Resources and Research Institute the University of Minnesota Duluth. These will examine sediments in lake bottoms as well as airborne particle measurements.

Researchers who have begun a five-year, $4.9 million study into an alarming number of mesothelioma cases in Minnesota will present a progress report tonight at the Mountain Iron Community Center. The study, which is operating under the direction of the University of Minnesota School of Public Health, focuses in particular on Iron Range miners. The Minnesota legislature approved funds for the research project in April.

The study is the result of concern about a high rate of mesothelioma among Iron Range workers, with 59 identified cases to date. According to a report in the Duluth News Tribune, initial data indicates 17 miners who developed mesothelioma between 1988 and 1996. Then, in 2007, it was revealed that the Minnesota Department of Health had additional information about 35 more cases of mesothelioma among the mine workers.

Mesothelioma is thought to be caused exclusively by exposure to asbestos, but the Minnesota study is examining the possibility of a link between exposure to the taconite dust released in the Iron Range mines, and mesothelioma. According to the News Tribune, researchers are conducting health screenings for miners and their spouses. They hope to screen about 2,000 people within six to nine months.

Tonight’s program will share initial findings and inform the public about the progress of health screenings, and opportunities for involvement in the screenings. It also will feature a presentation about the geological aspects of the Iron Range mine area.

If you’d like to attend, the meeting will be held at 6:30 p.m. at the Mountain Iron Community Center, at 8586 Enterprise Drive. The presentation should last about an hour.

It has been three years since Heather Von St. James chose a radical surgical treatment following her mesothelioma diagnosis. Just 36 years old at the time of the diagnosis, Heather is an anomaly in many ways in the world of meso – she’s female, and she is very young. The average meso patient is older, usually around age 60 or older, and male.

Heather also is unusual in that she is a survivor. Mesothelioma is a deadly disease, very often killing its victims within two years of diagnosis. This is partly because meso can be hard to diagnose, and is often mistaken for pneumonia or other minor ailments, until it is caught late, at an advanced stage, too late to treat effectively. There is no known cure.

A persistent fever, fatigue, and a heaviness in her chest prompted Heather to visit the doctor two months after the birth of her daughter, Lily, in August 2005. She knew her symptoms were not related to the usual exhaustion of new motherhood. By Nov. 21 Heather was diagnosed with mesothelioma, and less than a month after her diagnosis Heather was in Boston at the International Mesothelioma Program (IMP). Two months later she completed surgery, an extrapleural pneumonectomy, to remove her tumor and her left lung.

She believes that God had a hand in the quick diagnosis and treatment, allowing her to battle her mesothelioma before it was able to advance.

“I am not the norm,” she acknowledges. “Too many people die from this disease – young, old, everything in between. But more people are surviving it now. We are out there. And I think that needs to be out there more.”

Heather understands that when she tells people she is cured – a diagnosis her doctor, Dr. David J. Sugarbaker, who pioneered the mesothelioma program at IMP, cannot officially confirm – it makes some people angry. But, she says, she has to make her own choices, and part of her recovery is believing that the meso is gone for good.

“Life is a death sentence, and we all get so caught up in the death part of it. [Having meso], it’s like you sort of know your chariot home. It was sort of an eye-opener for me,” she says. “But it also made me really want to stay. I have a baby daughter. I am not ready to stop being a Mom to her. I am not anywhere near ready to go. What got me through a lot of dark times was my relationship with the Lord, and my positive attitude.”

She is eager to share her story, as much to give hope to other mesothelioma patients as to raise awareness and support for a cure.

“There is the 80 percent that don’t make it, but there is the 20 percent that does. That statistic is there for a reason, because it’s true,” she says.

Heather regularly attends new patient orientation at IMP when she returns to Boston for her check-ups, looking for the opportunity to meet other mesothelioma patients and their families. She hopes she can answer their questions, help calm fears, and provide a sense of hope.

“I’m the face of ‘after.’ That’s still rare. I want to talk to patients, to give them hope.”

A full-time social worker and two chaplains work at IMP, and there are regular support groups each week for families and patients, both while they are at IMP for surgery, and when they return for follow-up visits. Heather also attends these meetings when she is in Boston.

Additionally, last October Heather was a special guest speaker at an annual symposium hosted by Dr. Sugarbaker for IMP supporters, physicians and researchers.

“Researchers never see the real people that all these cells they’re working on are attached to. Dr. Sugarbaker wanted to give a face to all these cells,” Heather said.

Heather and her family also hold their own annual celebration on Feb. 2, the date of her surgery, dubbed Lung Leavin’ Day by her sister, Danna.

On the first anniversary of her surgery, she and her husband Cameron built a huge bonfire. Cameron collected two plates and a Sharpie marker, and they wrote their fears on the plates, then smashed them into the fire. Danna and her husband, Wayne, had their own Lung Leavin’ Day celebration at their home in Portland at the same time, in solidarity.

Last year, on the second Lung Leavin’ Day, more than 40 friends and relatives gathered to celebrate Heather’s health.

“It’s a celebration of life,” she says. “That’s the day when my life started over. My cancer was gone.”

Heather is exploring volunteer and outreach opportunities in Minnesota, where mesothelioma is literally an epidemic, responsible for the deaths of nearly 60 taconite miners in its Iron Range, and affecting dozens more. In April, the Minnesota State Legislature approved nearly $5 million for a study of the Iron Range and mesothelioma.

In another tie to her home state, the current bill before the House of Representatives that would finally call for a complete ban of asbestos in the United States is named after late Minnesota Congressman Bruce Vento, who died of mesothelioma in 2000. The Bruce Vento Ban Asbestos and Prevent Mesothelioma Act of 2008 is currently before the House Committee on Energy and Commerce.

As a result of these two issues, people in Minnesota are perhaps more aware of mesothelioma than most other places in the U.S. Heather hopes to do what she can to continue to expand the message, with the hope of saving more lives through awareness, outreach and fund raising for a cure.

“I know I’m here for a reason,” she says. “[Other cancers] get so much attention and funding. Why can’t we have a 3-day walk for mesothelioma? It needs to be out there. We’re just going to see more and more of this disease.”

In the meantime, Heather concentrates on staying healthy for her daughter, Lily, whom she calls a “fourth generation flower.” Heather’s grandmother was Rose, and her mom is Violet. So she claims cured, and counts her miracles, and keeps the fear at bay while she builds that garden.

You can contact Heather Von St. James through email at red7ro7r@hotmail.com or call her at 651-330-3614. She welcomes calls from mesothelioma patients and families.

After years of ignoring the dangers of asbestos, and the resulting nationwide epidemic of asbestos disease, including mesothelioma, there is a renewed interest in studying this deadly material. This week, the Billings Gazette announced the federal government will fund an $8 million study to understand the health effects of low-level exposure to asbestos. The study will be based in Libby, Montana, where more than 200 people have died to date as a result of asbestos mining operations in the town, and hundreds more people suffer from asbestos related diseases.

The Libby program, dubbed the Libby Amphibole Health Risk Initiative, is funded by the Environmental Protection Agency and the Department of Health and Human Services’ Agency for Toxic Substances and Disease Registry. The study is expected to span 5 years with a goal of expanding knowledge about the potential and real health issues of asbestos exposure.

Libby already has proved a tragically rich source of knowledge about long-term exposure to high levels of asbestos, as the EPA’s initial examination and cleanup of the town focused on miners with direct exposure to the substance in their jobs, as well as people who handled asbestos mineral and were exposed to asbestos dust secondarily on a daily basis.

But, the Gazette reports, too little is know about exposure to lower levels of asbestos. EPA officials hope that results of the study will benefit not only the residents of Libby, but people throughout the country.

In April, the Minnesota state legislature approved $4.9 million for its own five-year study, to be conducted under the direction of the University of Minnesota, in connection with unusually high levels of mesothelioma affecting Iron Range mine workers. A large question in the area is whether dust from the taconite mined there – a fibrous mineral similar to asbestos – could also cause mesothelioma.

A key part of the Minnesota research will be an examination of previous asbestos exposure among mine workers, which will expand the base of knowledge about the affect of asbestos on health, in addition to the new studies about the effect of taconite.

According to the Billings Gazette, among tests to be included in the Libby study are a comparison of film and digital chest X-rays to determine which is best for assessing the lungs, a comparison of the health of people exposed to Libby asbestos in childhood versus people who weren’t, an expanded evaluation of Libby residents who were exposed to asbestos, an assessment of whether the health problems related to asbestos exposure extend beyond lung disease.

Researchers in Libby also hope to make improvements to public health tracking systems and patient health record databases, to better link exposure information to health conditions, the Gazette reports.

Gayla Benefield, perhaps one of the best-known residents of Libby for her early outcry about the health effects of asbestos on the people in her town, says she is happy to see an emphasis on research.

She was a charter member of the board of directors of the Center for Asbestos Related Disease (CARD), a not-for-profit clinic governed by a volunteer community board and devoted to healthcare, outreach, and research to benefit all people impacted by exposure to Libby amphibole asbestos. She only recently retired from her position with that organization.

“This is something I’ve wanted from the onset – more study and more research,” she says. “I’ve been especially interested in how much or how little of the (asbestos) fiber can cause meso, and I’ve been really concerned about the schools having been contaminated.”

The key, Benefield says, is to detect mesothelioma at its earliest stage, when there is still time for treatment to prolong life. When people around her in Libby began being diagnosed, she says, their mesothelioma was so advanced that many died within days of the diagnosis.

“We all – everyone in Libby – live under the threat of developing mesothelioma,” she says. “They’re never going to get all that (asbestos) fiber out of Libby, or anywhere for that matter, homes with asbestos insulation, so the research is the big thing. Any and all research having to do with mesothelioma is fantastic. A dream come true.”

Monday, Minnesota Gov. Tim Pawlenty signed the bill that will provide $4.9 million for a mesothelioma research study. The bill unanimously passed the Senate, and passed by a vote of 121-1 in the House.
The 5-year study, which will be conducted under the direction of the University of Minnesota, will analyze death records and conduct screenings of current and former Iron Range mine workers and their families. The study will determine if there is a link between mesothelioma and the taconite fibers produced by the mine. To date, 58 Iron Range workers have died of mesothelioma.

The study also will include environmental research.

Funding for the program will come from a special insurance fund overseen by the Department of Commerce.

Today the Minnesota House of Representatives passed the bill that will provide $4.9 million for a mesothelioma research study, by a vote of 121-1. The bill unanimously passed the Senate on Monday. It now goes to Gov. Tim Pawlenty, who is expected to sign it.

The study, which will be conducted under the direction of the University of Minnesota, will analyze death records and conduct screenings of current and former Iron Range mine workers and their families. To date, 58 Iron Range workers have died of mesothelioma. The study also will include environmental research, and is expected to last 5 years.

Funding for the program will come from a special insurance fund overseen by the Department of Commerce.

I mentioned in my last post that a research partnership in Minnesota is using part of a $6 million grant for mesothelioma research. That was announced yesterday.

This morning, WorkDay Minnesota published a series of stories about another quest for mesothelioma research in the state. Unrelated to the first grant, a Minnesota House of Representatives committee has approved legislation to allocate $4.9 million – to come from the state’s worker’s compensation special fund in fiscal year 2008 – for a special study of Iron Range mine workers’ deaths due to mesothelioma.

Inforum News writer Scott Wente reported today that the Minnesota Health Department in 2007 linked the deaths of 58 mining industry workers to mesothelioma. The University of Minnesota plans four studies related to the mesothelioma cases and other health issues for taconite industry employees and communities, according to the Inforum News story. Data points to an abnormally high rate of the cancer among the mine workers.

WorkDay Minnesota reports that in 2007, the state Department of Health announced that 35 miners, in addition to 17 previously identified, had died from mesothelioma. The number currently stands at 58 mesothelioma deaths.

The legislation for the funding must go through another House committee before getting to the floor, and the Senate has not yet held a hearing on the bill. If approved, the funding would direct the University of Minnesota to initiate a study this year and complete work by 2013.

The university’s School of Public Health will spearhead the project and already has set up a toll-free nurse helpline for questions on taconite worker lung health (1-888-840-7590) and launched a special website.

In the meantime, WorkDay Minnesota says that Friday the federal Mine Safety and Health Administration issued new rules that increase protections for miners who may be exposed to asbestos.