Lupus Awareness & Education

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WIG & Lupus: Recent Actions Featured Sessions in WIG’s 2010-2011

Conferences 12th 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

17th 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 DisabilityEffects 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]

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]

An estimated 1.5 million Americans have lupus, with an additional 16,000 developing the disease each year.[3]

Only one drug has been approved for the treatment of lupus in the past 50 years.

[1] http://www.lupus.org/webmodules/webarticlesnet/templates/new_newsroomreporters.aspx?articleid=247&zoneid=60[2] http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnunderstanding.aspx?articleid=2237&zoneid=523[3] http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnunderstanding.aspx?articleid=2237&zoneid=523

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 http://womeningovernment.org/ Provide materials to enhance lupus

awareness and a springboard for legislator action Sample legislation FAQ Sample constituent letter and op/ed And more!