CLEVELAND - No one wants their home in an area where a higher percentage of adults and children get cancer, leukemia, multiple sclerosis and more. These areas are called disease clusters. There are five in Ohio, including one in Lorain County. Now, a senator and an environmental activist are urging new action to help people who live in disease clusters.
Sen. Sherrod Brown (D-OH) is co-sponsoring a new bill, and Erin Brockovich testified at a senate committee hearing Tuesday. They both want more done about quickly identifying disease clusters, and helping people in those clusters find out what made them sick.
Sen. Brown's proposed bill would get more federal resources to five Ohio areas identified as disease clusters. He said if it passed, the bill would "provide more federal support to communities that have been afflicted by high rates of diseases like cancer and multiple sclerosis."
These new developments follow a new report out on Monday that compiled a list of disease clusters across the United States, highlighting five in Ohio, including two in northern Ohio. Disease clusters are confirmed reports of concentrated cases of illness in a specific geographic area.
Families affected within a cluster zone struggle to stay healthy as they wait for answers on what, exactly, made them sick. Are businesses to blame? What about government regulators, who potentially do not catch possible violations?
Theories on what causes disease clusters are difficult to prove. Research takes years and the expense is large. Ask some families in Lorain County. They've been waiting for more than a decade for answers to their questions about the illnesses of loved ones. Later this year – a new report is expected by federal health and environmental investigators. But it's been a long road to this point, and still may not provide answers.
Joyce Hansel has had multiple sclerosis since 1982. She had to quit her job as a nurse because of her incurable disease.
"It was weird to become the patient and to need care, than to be the one giving care to others," she said.
Hansel is one of 25 confirmed cases of MS in a six block area of Wellington.
"People started noticing on their streets – all these people (who) had MS."
The initial investigation into a disease cluster in Lorain County began in 1998 with the local health department, due to several new cases of multiple sclerosis and some cases of other diseases, such as cancer.
Federal records show a village of Wellington resident petitioned the U.S. Department of Health and Human Services to conduct an investigation in 2003. Later that year, the department agreed to send teams for on site visits to look into the elevated cases of MS.
The petitioner was concerned about three specific industries as potentially releasing harmful toxins into the local environment that were making some people develop multiple sclerosis, and other people to develop health problems, such as cancer, fibromyalgia and lupus.
But the main concern was MS. It's an inflammatory autoimmune disorder that destroys a fatty layer around nerve fibers in the central nervous system. It affects twice as many women as men, and usually occurs in a person's 30s or 40s. Genetic studies show MS occurs more often in family members than in the general population.
In 2005, the Agency for Toxic Substances and Disease Registry, or ATDSR, issued a "health consultation" – which is not a final determination on the cause of a disease cluster, but the report did recognize Wellington as having an MS disease cluster. The health consultation also acted as a launching point to another study that started that same year. This ongoing study is examining genetic and environmental factors of the cluster. There is still no guarantee a cause will be identified when results are released later this year.
Meanwhile, Monday's compilation of disease clusters is from the non-profit National Resources Defense Council, and the National Disease Clusters Alliance. In addition to highlighting the problem in Wellington, four other clusters are pointed out in Ohio. In Sandusky County, Clyde has an elevated number of cases of childhood cancer. In Union and Marion counties, Marysville and Middletown, respectively, have confirmed elevated cases of leukemia.
But again, the causes for these disease clusters are elusive.
The compilation report by NRDC highlights points out disease clusters that have occurred since 1976, when the Toxic Substance Control Act was passed to regulate the use of toxic chemicals in industrial, commercial and consumer products.
Dr. Gina Solomon is the NRDC senior scientist and co-author of the issue paper. Solomon said communities deserve timely answers on the causes of disease clusters.
"The faster we can identify such clusters, and the sooner we can figure out the causes, the better we can protect residents living in the affected communities," Solomon said in a press release.
Erin Brockovich, the activist who fought
to document a disease cluster in a California town, spoke at a Senate hearing Tuesday. Her story became more well-known after it was turned into a movie starring actress Julia Roberts.
"Thousands of Americans contact me every month asking for help and telling me about unexplained diseases in their neighborhood or on their streets," Brockovich said at the hearing. She urged lawmakers to do more. You can watch the entire hearing here http://1.usa.gov/fOWWye
Meanwhile, people in Lorain County and four other Ohio counties, continue to wait for answers on what made them, and their families, sick.
People like Joyce Hansel, who still holds on to hope to find out why she has MS.
"Somebody like this organization that's out there doing these studies are going to give a lot of people peace of mind if they get the proper attention."