LUPUS--It's Time to Take a Stand and Raise Awareness

Lupus is an acute and chronic autoimmune disease in which the immune system is unbalanced, causing inflammation and tissue damage to virtually every organ system in the body, including the lungs, heart, kidneys, blood, skin and joints, kidneys, and brain.  It is a significant, life-diminishing disease that affects an estimated 1.5 million Americans.  Its health effects include seizures, strokes, heart attacks, miscarriages, and kidney failure.  Many experts believe lupus is the prototypical autoimmune disease and that research breakthroughs in lupus may produce results that will benefit the more than 23 million Americans living with autoimmune diseases.

Ninety percent of the people living with lupus are women; however, women of all ages, as well as men and children, develop the disease.  African Americans, Hispanic/Latinas, Asians, and Native Americans are two to three times more likely to develop lupus--a disparity that remains unexplained.

Federal spending on lupus research has not kept pace with similar diseases.  Lupus annually costs the nation an estimated $31.4 billion in direct and indirect expenditures.  The estimated average annual cost per person is lupus (between the ages of 18 and 65) is $20,924.  However, each year, the National Institute of Health only invests $65 per individual.  In a study published in the Journal of the American College of Occupational and Environmental Medicine, the burden of illness for lupus was compared to the annual average per patient costs for ten other chronic diseases.  The study was conducted among employed persons at 15-20 large US employers.  The study concluded that the annual medical expenditures, absence costs, and short-term disability costs for lupus exceed the costs for asthma, diabetes, COPD, heart disease, and rheumatoid arthritis.

It has been over 50 years since the last drug was approved by the FDA for the treatment of lupus--that occurred during the Eisenhower Administration.  In part, this is due to the lack of robust investment in lupus research by the federal government.  Private industry, i.e., pharmaceutical and biotechnology companies, depend upon the scientific base of knowledge that is developed by the federal medical research enterprise--the National Institutes of Health.  The lack of a strong federal medical research effort on lupus has, in the past, deterred industry from investing in the discovery of new, safe, tolerable, and effective treatments for individuals with lupus.

This petition urges Congress to support the Congressional Message put forth by the Lupus Foundation of America on March 3, 2009.  The actual message can be viewed at the LFA's website (www.lupus.org).  The LFA is asking Congress to invest in lupus research and awareness by increasing funding to the NIH and CDC, and calls for a Surgeon General's Report on gaps in lupus research and education.

So, why is this important to me?  My mother was diagnosed with systemic lupus over ten years ago.  Since that time, my family has watched her suffer through the various stages of the disease, as well as from the many, many treatments her doctors have used to treat her all-encompassing symptoms, which have included chemotherapy to weaken her overactive immune system and opiate pain killers to alleviate some of her constant pain.  Throughout it all, the disease continuously progresses with no hope in sight.

Please, please, please support this petition and urge Congress to take action.  All it takes is one signature.

Thank you for your help

Lupus is an acute and chronic autoimmune disease in which the immune system is unbalanced, causing inflammation and tissue damage to virtually every organ system in the body, including the lungs, heart, kidneys, blood, skin and joints, kidneys, and brain.  It is a significant, life-diminishing disease that affects an estimated 1.5 million Americans.  Its health effects include seizures, strokes, heart attacks, miscarriages, and kidney failure.  Many experts believe lupus is the prototypical autoimmune disease and that research breakthroughs in lupus may produce results that will benefit the more than 23 million Americans living with autoimmune diseases.

Ninety percent of the people living with lupus are women; however, women of all ages, as well as men and children, develop the disease.  African Americans, Hispanic/Latinas, Asians, and Native Americans are two to three times more likely to develop lupus--a disparity that remains unexplained.

Federal spending on lupus research has not kept pace with similar diseases.  Lupus annually costs the nation an estimated $31.4 billion in direct and indirect expenditures.  The estimated average annual cost per person is lupus (between the ages of 18 and 65) is $20,924.  However, each year, the National Institute of Health only invests $65 per individual.  In a study published in the Journal of the American College of Occupational and Environmental Medicine, the burden of illness for lupus was compared to the annual average per patient costs for ten other chronic diseases.  The study was conducted among employed persons at 15-20 large US employers.  The study concluded that the annual medical expenditures, absence costs, and short-term disability costs for lupus exceed the costs for asthma, diabetes, COPD, heart disease, and rheumatoid arthritis.

It has been over 50 years since the last drug was approved by the FDA for the treatment of lupus--that occurred during the Eisenhower Administration.  In part, this is due to the lack of robust investment in lupus research by the federal government.  Private industry, i.e., pharmaceutical and biotechnology companies, depend upon the scientific base of knowledge that is developed by the federal medical research enterprise--the National Institutes of Health.  The lack of a strong federal medical research effort on lupus has, in the past, deterred industry from investing in the discovery of new, safe, tolerable, and effective treatments for individuals with lupus.

This petition urges Congress to support the Congressional Message put forth by the Lupus Foundation of America on March 3, 2009.  The actual message can be viewed at the LFA's website (www.lupus.org).  The LFA is asking Congress to invest in lupus research and awareness by increasing funding to the NIH and CDC, and calls for a Surgeon General's Report on gaps in lupus research and education.

So, why is this important to me?  My mother was diagnosed with systemic lupus over ten years ago.  Since that time, my family has watched her suffer through the various stages of the disease, as well as from the many, many treatments her doctors have used to treat her all-encompassing symptoms, which have included chemotherapy to weaken her overactive immune system and opiate pain killers to alleviate some of her constant pain.  Throughout it all, the disease continuously progresses with no hope in sight.

Please, please, please support this petition and urge Congress to take action.  All it takes is one signature.

Thank you for your help

We the undersigned urge President Obama and the U.S. Congress to support legislation to increase funding and resources for Lupus research and awareness, as per the Congressional Message put forth by the Lupus Foundation of America, Inc on March 3, 2009.

Lupus is an acute and chronic autoimmune disease in which the immune system is unbalanced, causing inflammation and tissue damage to virtually every organ system in the body, including the lungs, heart, kidneys, blood, skin and joints, kidneys, and brain.  It is a significant, life-diminishing disease that affects an estimated 1.5 million Americans.  Its health effects include seizures, strokes, heart attacks, miscarriages, and kidney failure.  Many experts believe lupus is the prototypical autoimmune disease and that research breakthroughs in lupus may produce results that will benefit the more than 23 million Americans living with autoimmune diseases.

Ninety percent of the people living with lupus are women; however, women of all ages, as well as men and children, develop the disease.  African Americans, Hispanic/Latinas, Asians, and Native Americans are two to three times more likely to develop lupus--a disparity that remains unexplained.

Federal spending on lupus research has not kept pace with similar diseases.  Lupus annually costs the nation an estimated $31.4 billion in direct and indirect expenditures.  The estimated average annual cost per person is lupus (between the ages of 18 and 65) is $20,924.  However, each year, the National Institute of Health only invests $65 per individual.  In a study published in the Journal of the American College of Occupational and Environmental Medicine, the burden of illness for lupus was compared to the annual average per patient costs for ten other chronic diseases.  The study was conducted among employed persons at 15-20 large US employers.  The study concluded that the annual medical expenditures, absence costs, and short-term disability costs for lupus exceed the costs for asthma, diabetes, COPD, heart disease, and rheumatoid arthritis.

It has been over 50 years since the last drug was approved by the FDA for the treatment of lupus--that occurred during the Eisenhower Administration.  In part, this is due to the lack of robust investment in lupus research by the federal government.  Private industry, i.e., pharmaceutical and biotechnology companies, depend upon the scientific base of knowledge that is developed by the federal medical research enterprise--the National Institutes of Health.  The lack of a strong federal medical research effort on lupus has, in the past, deterred industry from investing in the discovery of new, safe, tolerable, and effective treatments for individuals with lupus.

It is urgent that Congress:

**Increase funding for lupus medical research at:  the National Institutes for Health (NIH) and the Center for Disease Control and Prevention (CDC)

**Calls for a Surgeon General's Report on gaps in lupus research and education

**As per the Congressional Message issued to Congress by the Lupus Foundation of America on March 3, 2009.

Our families, friends, and communities are depending on swift and comprehensive action by Congress to ensure that new treatment options, and hopefully a cure, are available to our loved ones who are suffering with this horrible, debilitating disease.

Thank you for your time.