Sometimes clarity arrives without warning. For me, it came November 8, 2002, the day my father-in-law was diagnosed with mesothelioma, an aggressive cancer with a median survival time of eight to 18 months. It was then I clearly saw the nurse's role as advocate.
Les struggled against the disease, valiantly and with humor and warmth. He was exposed to asbestos while doing various jobs in his family's tile and granite business. This hardworking father of eight passed away just seven months after diagnosis, despite immediate referral to a large cancer center for surgery. Les was 68 years old.
Mesothelioma attacks the lining of the lungs, heart, or abdomen; there are no standards of treatment. The disease can be latent 15 to 50 years from the time of asbestos exposure. There has been a 50% increase in the number of cases over the last decade, rising 2,000 to 3,000 cases per year in the United States, a rate that's not expected to stabilize for another 20 years.
As I researched the disease, I was saddened and appalled to discover that treatment outcomes haven't changed in 20 years. While I realized that mesothelioma accounts for a small percentage of all lung cancers, and that research is sometimes funded according to the prevalence of a disease, I found it frightening that today options are so few and outcomes so dismal.
A bill in the Senate, the Fairness in Asbestos Injury Resolution (FAIR) Act of 2003 (S 1125), aims to provide a privately financed trust to compensate victims of asbestos-related diseases. An amendment also requires the Environmental Protection Agency to finalize rules banning the use of asbestos within two years of the act's passage. The amendment resembles portions of the Ban Asbestos in America Act of 2003 (S 1115) that Senator Patty Murray (D-WA) has championed since 2002. Her legislation aims to create a national mesothelioma registry and funding for research and mesothelioma treatment centers. It hasn't yet reached Congress.
The FAIR Act of 2003 is designed to eliminate asbestos-related lawsuits. It does not provide funding for research or prevention. It certainly solves the needs of corporate America: asbestos manufacturers and insurers that have issued asbestos liability policies will contribute to the fund (victims will be compensated according to a set scale), most likely resulting in lower "costs" to them than would individual court settlements.
Harvey Pass, MD, chairman of the Science Advisory Board for the Mesothelioma Applied Research Foundation (MARF), estimates that $135 million could support research, early detection, and prevention (see http://www.marf.org)-that's a small percentage of the $114 billion planned for victim compensation.
Money can't bring back a loved one. But it can provide hope for future patients. According to Chris Hahn, executive director of MARF, "It's time to move beyond the question of how much the companies responsible should pay and how much the victims should be 'compensated.' We need to lessen the misery in the first place by funding research to prevent or treat mesothelioma."
In addition to providing knowledgeable and compassionate care, nurses must act as political advocates-a phone call, an e-mail, or a fax supporting research may seem inconsequential, but added to many, it will have an impact (see http://www.senate.gov). All nurses should urge the Senate to incorporate funding for research into any asbestos compensation legislation. Nurses should seize this opportunity to make a difference in the lives of the patients we will one day care for. It's up to us to put a human face on this disease rather than a price tag.
Les had three brothers and 11 children and stepchildren who have most likely been exposed to asbestos. I'm worried that our family will again be dealing with mesothelioma. If so, I want treatment options. I want hope. Right now, all hope lies in research.