Consider Attending Bone Marrow Failure Disorder Conference This July

The Aplastic Anemia and Myelodysplastic syndromes International Foundation Inc. (AA&MDSIF) describes itself as "dedicated to fighting bone marrow failure diseases through patient support and research."

The organization will hold a it's AA&MDSIF Patient and family Conference in Indianapolis this year from Friday July 10, to Sunday July 12. 

If you or a loved one have been diagnosed with a bone marrow failure disease such as aplastic anemia, myelodysplastic syndromes, or acute myeloid leukemia, AA&MDSIF supplied these excellent reasons why you should attend this event.

  • Hear from leading experts. Learn more about your disease, current treatments and emerging therapies.
  • Talk with fellow patients and their family members about practical matters and their personal experiences.
  • Explore a variety of topics on living well and improving your quality of life.
  • Join our Support Workshops, which are always a favorite, and connect and share with others who are coping with these rare diseases.
  • Understand how AA&MDSIF can help you through this life-changing experience.
  • Participate in our Survivors Celebration and leave with a sense of hope and a positive outlook for the future.

To register for this event click here.

Benzene Leukemia Law Blog recommends bookmarking AA&MDSIF's home page. www.aamds.org/aplastic/  

 

 

Support the Bone Marrow Failure Disease Research and Treatment Act of 2009

While a link between bone marrow failure diseases and benzene exposure has been well established, there is a great need for more research into causes and treatments for these potentially fatal disorders. 

Bone marrow failure diseases, like aplastic anemia, myelodysplastic syndromes, and acute myeloid leukemia (AML), sicken between 20,000 and 30,000 Americans each year.

On February 26, 2009 Representative Dorris O Matusi (D-CA) introduced the Bone Marrow Failure Disease Research and Treatment Act of 2009. The legislation would pool the resources of several federal agencies in order to increase understanding and treatments for the disorders.

The following summary of the bill is courtesy of the Aplastic Anemia & MDS (myelodysplastic syndromes) International Foundation, Inc. (AA&MDSIF).

The legislation directs the Health and Human Services Department to develop a comprehensive 
strategy to combat these diseases, which include: 

• A national bone marrow failure disease registry so that researchers can combine their 
data in one place, yielding more effective research designs and better results; 

• Pilot studies through the Agency for Toxic Substances and Disease Registry to 
determine which environmental factors cause people to acquire bone marrow failure 
diseases; 

• Minority-focused programs to make information on treatment options and clinical trials 
available to minority communities, particularly Hispanic and Asian American 
communities; 

• Agency for Healthcare Research and Quality grants to help improve diagnostic 
practices and quality of care for patients with bone marrow failure diseases. 

In total, the legislation authorizes $8 million annually for fiscal years 2010 through 2014. 

For more details on the bill click here.

For information on how you can take action to help pass this legislation, check out AA&MDSIF's Grass Roots Action page by clicking here.

 

 

 

 

 

 

 

 

 

 

 

 

ExxonMobil Faces New Lawsuit Over Excessive Chemical Releases

The Louisiana Environmental Action Network (LEAN) has filed a lawsuit  against ExxonMobil accusing the oil giant of trampling state environmental laws at it's Scenic Highway chemical plant, in Baton Rouge, by releasing 89,700 pounds more airborne pollution than it's permits allow since May 13, 2008.

The suit brings up multiple documented chemical leaks, and failure to maintain pollution control devices, claiming these factors illustrate a clear pattern of noncompliance with state laws, and constitute a threat to public health.

According to the lawsuit, since may 2008, the company has released pollution in excess of permitted levels, 66 times.

The suit alleges that many of the chemicals released by ExxonMobil were not even covered by permits, for example, 3,800 pounds of propylene, ethylene, and flammable vapors.

Most alarming is the defendant's report of an airborne benzene leak of "at least" 525 pounds. The leak allegedly lasted for 22 days.

Benzene is a carcinogenic organic solvent known to disrupt blood cell production in humans at exposure levels less than 1ppm. Exposure to benzene has been linked to alpastic anemia, myelodysplastic syndromes, and non-Hodgkin's lymphoma, as well as several types of leukemia including acute lymphocytic leukemia (ALL), and acute myelogenous leukemia (AML).

The LEAN vs. ExxonMobil suit seeks:

  • an injunction to stop the release of un-permitted pollution
  • civil penalties payed to the state
  • a declaration that ExxonMobil is in violation of the Louisiana Environmental Quality Act
  • plaintiff attorney and expert witness fees

Marylee Orr, executive director of LEAN said this of the continuing violations:

 “It’s affecting our public health. It’s affecting the way our children learn, it’s affecting everyone in the community, it’s a confirmation that there’s a problem.”


 

Are You At Elevated Risk of Benzene Exposure?

What is Benzene?

Benzene is a commodity chemical widely used in the industrial sector in the production of many products we use every day, such as:

  • fuels
  • plastics
  • resins
  • rubbers
  • synthetic fibers
  • lubricants
  • detergents
  • dyes
  • pesticides
  • drugs

This highly carcinogenic organic solvent has been shown disrupt blood cell production in humans, leading to a number of hematological (blood) diseases such as:

  • aplastic anemia
  • myelodysplastic syndromes
  • non-Hodgkin's lymphoma (NHL) 
  • acute myelogenous leukemia (AML)
  • acute lymphocytic leukemia (ALL)

Those who work in the industrial sector are at risk of harm from exposure to this chemical, and should be aware of the benzene exposure possibilities posed by their specific job. Thousands of workers have been needlessly sickened and killed due to exposure that could have been avoided by taking the correct precautions.

While some employers are responsible in this area, a clear pattern of neglect regarding the dangers of benzene exposure is exemplified in countless successful lawsuits which have resulted in monetary compensation for the exposed worker, or their families.

If you work in almost any industrial setting, your risk is elevated. Do not count on your employer to protect you, rather, take personal responsibility for your health by using every possible means of protection when working with or around products containing benzene.

A recent Benzene Leukemia Law Blog post, "On The Job Benzene Exposure: Know What To Do," is a useful starting point for workers seeking to educate themselves about benzene exposure.