It’s not just the complexities of a rare disease that cause slow progress in the fight against mesothelioma.
It’s a lack of research money.
While the community — patients, families, friends, medical specialists, researchers — is unbelievably committed to helping, continued lack of support from the outside is restricting the pace of the progress.
“We absolutely would be closer to a cure today — we might have one — if there was more research money,” said surgeon Robert Cameron, scientific advisor for the Pacific Meso Center in Los Angeles, California. “There are some really, really good ideas out there — potential breakthroughs — but just no money to develop them.”
Research funding — the key to moving toward earlier diagnoses, innovative treatments and possibly a cure for the asbestos cancer — is a prime example of the unique hurdles facing the community today.
Doctors Raise Money
There are so few doctors who specialize in this rare but deadly cancer that they are spread thin. If your image of a mesothelioma doctor is one of a physician bouncing from operating room to operating room, meeting with patients and families about treatment decisions and studying charts and lab result, you’re partially right.
There’s also the time spent filling out paperwork to secure grant money. And the time spent on the phone asking for research funds. Oh: And the time burned up sending emails and letters to find more money to eliminate this disease.
Scalpels and chemotherapy concoctions aren’t the only tools in the shed. There are some public relations skills in there, too.
“You want to really focus on each individual patient — and we do — but when you are juggling 100 different things, sometimes there just isn’t enough time in the day for everything,” said surgeon Raja Flores, chief of thoracic surgery at Mount Sinai Medical Center in New York. “The research with mesothelioma is so important. You have to think outside the box. There is a link out there that will revolutionize treatment in the future, but we still have to find it.”
Patients and families often travel long distances at personal expense to find those specialists. Those trips usually come following a lengthy struggle to get an accurate diagnosis locally. With only 3,000 cases of this cancer being diagnosed each year in the United States, many doctors — and even good oncologists — initially fail to recognize its presence.
Families are also frustrated by issues with insurance companies. Military veterans, believed to account for one-third of all diagnosed mesothelioma cases, often need help navigating through the VA Health Care System. Jumping through hoops is just part of the routine today with mesothelioma. Those struggles only multiply if a patient lacks insurance.
“We’ve had to jump over a lot of hurdles through the years,” said John Anderson, whose wife Bonnie is a rare, 10-year survivor in New Jersey. “But we’ve also knocked on a lot of doors asking for help.”
Bonnie Anderson recently was presented with the Hope Builder Award by the Mesothelioma Applied Research Foundation (MARF), which is the most nationally recognizable support group for mesothelioma patients. One of its key missions is raising money for research, a common theme during a symposium in Washington, D.C.
$2 Million SPORE Grant?
Compared to most other cancers, mesothelioma obtains little federal funding to promote research that could lead to a cure. It’s why MARF put considerable emphasis on congressional lobbying efforts. MARF, doctors, patients and others want to narrow that funding gap.
It is also why there is considerable excitement throughout the community about a possible SPORE (Specialized Programs of Research Excellence) grant later this year. The grant could mean $2 million annually for the next five years.
For many cancers, a $2 million annual grant would be just another day. To the mesothelioma community, it would be a cause for celebration. SPORE is part of the National Cancer Institute’s (NCI) effort to promote cancer research. There are 62 active grants in the United States, and NCI never has awarded one for asbestos cancer research.
The current SPORE proposal is a collaborative effort between the University medical schools at Pennsylvania, Hawaii, New York and Minnesota. Each has a major research project ready to be launched if funding is found.
“Getting this would be big. Not only could it fund four major projects, it comes with a springboard mechanism to access more funds for other pilot programs. In the past, unfortunately, mesothelioma hasn’t had the benefit of enough federal funding like other cancers,” said Robert Kratzke, M.D., associate professor of medicine, who will spearhead the project at the University of Minnesota/Mayo Clinic. “Without real research, it’s tough to make any significant progress. And research costs a lot of money.”
For example, the University of Minnesota/Mayo Clinic is running a trial involving a strain of the measles virus, and how it might help fight mesothelioma. The trial cost is estimated at $100,000 per patient. The cost of using Pemetrexed, a chemotherapy drug, as part of a three-week trial, is $15,000 per person.
Other Cancers Outrank Mesothelioma for Money
Finding that kind of money is difficult for any cancer researcher, but those who study mesothelioma are well aware of the difficulties and frustrations of scrapping for funds when other medical professionals seem to have money thrown at their doors.
According to its website, NCI provided more than $625 million in 2011 for breast cancer research, $296 million for lung cancer, $288 for prostate cancer, $265 million for colorectal cancer and $227 million for leukemia.
There are 43 different cancers on the NCI’s Funding Research list for 2011, but mesothelioma is not one of them. Only six of the 43 cancers were awarded less than $2 million in 2011. According to MARF, NCI did award $6 million for asbestos cancer research but it was spread over four years (2004 to 2007).
The Congressionally Directed Medical Research Program (CDMRP), which is aimed at eradicating diseases in America, awarded $2.66 billion in funding for breast cancer research between 1992 and 2011. It is expected to give another $120 million for breast cancer research in 2012 alone.
By comparison, mesothelioma research received only $8.9 million total during the same period from CDMRP. For 2012, the disease is grouped with eight other cancers to split up $12.8 million.
“Funding is always the biggest issue,” said Daniel Sterman, M.D., director of the Penn Medicine Pulmonology Department and clinical director of the Thoracic Oncology Gene Therapy Program. “Mesothelioma is always five to 10 years behind the other cancers. There have been dedicated people out there spending years writing grants for mesothelioma research, only to have the rug pulled right out from under them. It can be tough.”
The average span of life after diagnosis, even with the best treatment options, is nine to 18 months, although there are a growing number of exceptions as treatments slowly improve.
According to Dr. Lee Krug, medical oncologist and director of the mesothelioma program at New York’s Memorial Sloan Kettering Hospital, NCI rejects an estimated 92 percent of all grant requests it receives, often because funds are scarce.
No one knows that better than those with an eye on mesothelioma.
MARF, Pacific Meso Center and Other Efforts for Money
The lack of federal funding for mesothelioma is why MARF, based in Washington, D.C., puts so much effort into fundraising at every level. Since its grant program began in 2000, MARF has provided $7.6 million for a variety of mesothelioma research projects.
Supporters of MARF organize and raise money with everything from Miles-for-Meso Road Races to Poker Nights. The Pacific Meso Center in Los Angeles has done everything from Wine Auctions for Mesothelioma to Mesothelioma Hikes.
Cameron often suggests finding a mechanism that provided a certain percentage of all asbestos-related lawsuits to mesothelioma research. There is, he points out, more than $36 billion in asbestos trust funds designed for those suffering from asbestos-related diseases.
He was elated recently to announce a $100,000 donation to be used specifically at the Pacific Meso Center for research in cryotherapy, which Cameron believes could change the eventual approach to treatment.
“It would be great if someone like Bill Gates (Microsoft chairman and noted philanthropist) just donated $50 million for mesothelioma research,” Kratzke said. “I think we’d find a cure pretty quickly. Until then, we’ll keep plugging away.”