Women In Government Highlights May as Lupus Awareness Month

Women In Government Highlights May as Lupus Awareness Month

It is estimated that there more than 1.5 million Americans suffer with lupus, and the disease annually costs the nation over 31.4 billion dollars(1). Women In Government (WIG) is particularly interested in this issue because 90 percent of those affected with lupus are female, yet it is thought that 80 percent of women in American know little to nothing about lupus.

WIG has worked to raise awareness of lupus and address the issues concerning this difficult disease. In several of WIG’s 2010 and 2011 conferences and state briefings, speakers have discussed the impact that the debilitating chronic disease has on women's health, the organizations that work to fight the disease, and what legislators can do to help.

Lupus is an autoimmune disease that typically strikes young women of childbearing age, often causing complications in the mother’s health and increasing the risk of miscarriages, death, or premature birth. This disease of the immune system causes inflammation and damage to virtually every organ system in the body, and can be incredibly difficult to diagnose. Unfortunately, challenges in the diagnosis often stem from the lack of knowledge among health professionals and patients. Additionally, since there has been limited research on lupus, effective treatment has also been difficult. Until recently there had not been a new drug approved to treat the disease in over 52 years.

In March of 2011, however, the Food and Drug Administration (FDA) approved the drug belimumab, also known as Benlysta, as a treatment for lupus.(2) “Benlysta, when used in conjunction with other drugs, offers a way to combat a particularly difficult disease.”(3) This is a major breakthrough for those who suffer from the disease, but it does not complete the need for more research.(4)

Despite recent progress, awareness remains one of the most important issues associated with this little known disease. State legislators have worked to combat this issue by passing legislation in their states that will celebrate a specific Lupus Awareness Day or Month. May has been named national Lupus Awareness Month, and several states have also adopted resolutions proclaiming May as their state’s official awareness month.

Several Women In Government members have taken up lupus awareness in their states, including WIG State Director Senator Michelle Kidani and Treasurer of WIG Board of Directors Representative Barbara Marumoto, were responsible for passing awareness legislation in Hawaii. Please click on the following links to view the Hawaii legislation. Another WIG Board of Director Member at Large, Senator Bettye Davis, also helped pass lupus legislation by sponsoring a bill to have an awareness month in her state of Alaska.

The following states also have implemented Lupus Awareness Month legislation, or legislation designating a specific day as Lupus Advocacy Day.

  • Alaska
  • Georgia
  • Hawaii
  • Illinois
  • Indiana
  • Kansas
  • Maine
  • New York
  • Ohio
  • Oklahoma
  • Pennsylvania
  • Tennessee
  • Virginia
  • Wisconsin

WIG currently has an Autoimmune Disease Policy Resource Center containing information on lupus. In June 2011 we will be releasing a lupus toolkit, which will include sample legislation, communications materials, resources on the disease, and up-to-date information.

For more information on lupus from our partners, please visit the links below .

1. http://www.lupus.org/newsite/index.html
2. http://healthland.time.com/2011/03/10/fda-approves-the-first-new-lupus-d...
3. http://www.washingtonpost.com/wp-dyn/content/article/2011/03/09/AR201103...
4. http://healthland.time.com/2011/03/10/fda-approves-the-first-new-lupus-d...
 

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