Lupus Awareness & Education

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WIG & Lupus: Recent Actions  Featured Sessions in WIG’s Conferences 12 th Annual Eastern Regional Conference July 21-24, 2010, Newport, Rhode Island Outreach to Vulnerable Populations August 18-19, 2010, Seattle, Washington First Annual Healthcare Summit November 17-20, 2010, Washington, DC 17 th Annual State Directors’ & Ninth Biennial First Term Legislators Conference January 6-8, 2011, Dana Point, CA

What is Lupus?  Lupus is a multi-organ disease  It is an autoimmune inflammatory disease, but not an infection  Generally “ lupus” refers to a specific type of the disease, Systemic Lupus Erythematosus, also known as SLE

Is Lupus Difficult to Diagnose?  Often starts as a “flu”- fever, aches and pains, and fatigue, but persists  Mild rash, harder to spot in dark skin, or may not be present  Often abnormalities in the routine blood tests - anemia, low WBC (like viral infection)

Lupus and Disability Effects of Medications  Cortisone toxicity – diabetes, hypertension, obesity, cataracts, osteoporosis, avascular necrosis, infections  Other immunosuppressive medications - serious infections – viral (shingles) and bacterial  Sterility (cyclophosphamide)

Lupus Facts  The Lupus Foundation of America estimates annual lupus costs for the overall healthcare system to be $31 billion.[1][1]  Women make up 90 percent of diagnosed lupus cases. The disease appears most often in women of childbearing age, between ages 15 and 44. Minority women are two to three times more likely to have lupus.[2][2]  An estimated 1.5 million Americans have lupus, with an additional 16,000 developing the disease each year.[3][3]  Only one drug has been approved for the treatment of lupus in the past 50 years. [1][1] [2][2] [3][3]

What can we do?  Introduce a resolution that will promote awareness by designating a specific month “Lupus Awareness Month,” which is federally recognized in May. Currently 18 states recognize May as Lupus Awareness month: CT, GA, HI, IL, IN, IA, ME, MN, NM, NY, ND, SD, TN, TX, UT, VA, WA, and WI Currently 18 states are in the process of designating May as Lupus Awareness month: AK, AR, AZ, CA, CO, FL, ID, KS, LA, MO, NE, NV, NH, NC, OK, OR, RI, and VT  Improve the education and awareness of lupus within their states by holding a state advocacy day. Currently nine states have an advocacy day: CT, GA, IL, KS, MO, OK, PA, TN, and VA  Introduce legislation that will not only increase general awareness among constituents, but also focus on improving the education of healthcare professionals within the state. The goal is for health professionals to better recognize and diagnose lupus. Six states have passed legislation titled The Lupus Education and Awareness Program (LEAP) or variations: CT, HI, IL, IN, MA, and OH. Two states, RI and WA, have introduced LEAP bills.

What can we do?  Sponsor legislation that will create a Lupus Research Program in the state.  Seek appropriation of funds to conduct state-wide public and professional education and awareness initiatives.  Create specialized legislation to address specific needs within the state. NY approved a program that provides a “Lupus Emergency Grant” for crisis situations and a hotline number for patients to call.  Host a town hall.  Host or speak at a health fair.  Participate and promote a lupus walk.  Write a Dear Colleague letter in support of legislation already introduced.  Remember lupus related charities to include in income tax check-off charity programs

WIG Lupus Awareness Toolkit   Provide materials to enhance lupus awareness and a springboard for legislator action Sample legislation FAQ Sample constituent letter and op/ed And more!