NHMA s 14th Annual Conference

1. NHMA�s 14th Annual Conference March 25-28, 2010

2. Lupus Awareness Ad Council Campaign Frances E. Ashe-Goins RN, MPH Acting Director U.S. DHHS Office on Women�s Health Washington, DC

3. Overview of Lupus

4. Definition Lupus is a widespread chronic autoimmune disease Causes the immune system to attack the body�s own tissue and organs These include the joints, kidneys, heart, lungs, brain, blood and/or skin The immune system loses its ability to tell the difference between itself and foreign tissue

5. Types of Lupus Discoid Affects only the skin; i.e. rash on face, neck, and scalp Systemic (SLE) Affects the skin, joints, heart, lungs, kidneys, liver, brain, or blood. Drug-Induced Caused by taking certain medicine Mixed Connective Tissue Disease Neonatal (Rare) Occurs in the fetus of women with lupus

6. Prevalence 1, 500,000 Americans More common in women than men Nine of ten people with lupus are women 2 � 3 times more common among African Americans, Hispanics, Asians, and Native Americans

7. Female to Male Ratio Children 3:1 Adults 10 � 15:1 Elderly 8:1

8. Etiology Causes Unknown�.many theories Not infectious, rare or cancerous There is a genetic pre-disposition Environmental factors play a role in triggering lupus Other triggering factors include....infections, antibiotics, ultraviolet light, extreme stress, certain drugs, and hormones Hormonal factors may explain why it occurs more frequently in females Characterized by flares and remissions

9. Pathogenesis Not one gene, not one pathway, multi-factorial in most pathways, different pathways in different patients Common denominators are multiple autoantibidies, autoantibodies correlate with clinical features, disease activity correlates with autoab titers

10. Symptoms Fatigue, fever, pain, stiffness, swelling, redness Common----painful swollen joints, unexplained fever, extreme fatigue, red rash or color on the face, chest pain with deep breathing, pale or purple fingers or toes Additional symptoms----mouth sores, headache, depression, cognitive dysfunction, scalp hair loss, anemia, kidney disease

11. Symptoms Fatigue, fever, pain, stiffness, swelling, redness Common----painful swollen joints, unexplained fever, extreme fatigue, red rash or color on the face, chest pain with deep breathing, pale or purple fingers or toes Additional symptoms----mouth sores, headache, depression, cognitive dysfunction, scalp hair loss, anemia, kidney disease

12. Clinical Features Arthritis 55%; Skin involvement 20%, Nephritis 5%, Fever 5%, Other 10%

13. Organ Involvement Joints - 90% Skin Rashes - 70% Cardiac Manifestations - 60% Kidney - 50% Raynaud�s manifestations - 20% Mucous Membranes - 15% CNS (Seizures/Psychosis) 15%

14. Diagnosis Medical history (including family history) Complete physical examination Laboratory tests Skin and/or kidney biopsy Chest x�ray

15. 11 Common Criteria for Diagnosis Malar rash Discoid Rash Photosensitivity Oral Cancers Arthritis Serositis Kidney disorder Neurological Disorder Blood disorder Immunologic Disorder Abnormal Antinuclear Antibody (ANA) Eiusmod tempor incididunt ut

16. Treatments No cure Current therapies are based on the suppression of the entire immune system and reduction of inflammation Medicines are used to treat symptoms based on the organ and severity of disease Treatments are specialized to the patient

17. Medical Treatments Anti-inflammatory drugs Non-steroidal Anti-Inflammatory Drugs (NSAIDs), acetaminophen and aspirin Corticosteroids Antimalarials Immunosuppressive (Immune Modulators) Cytoxan, Imuran, MMF Anticoagulants Examples - CellCept (Mycophenolate Mofetil), Arava, Cyclosporin, Alpha Interferon, LPJ-394, GL-701, IV Gamma Globulin, Plasmapharaesis, Stem Cell Transplant, Cox-2 Inhibitors, ultraviolet , A-1 therapy

18. Personal Strategies Take sun precautions Ensure rest time Healthy nutrition Exercise Moist heat for mild aches/pain No smoking Lifestyle changes include....taking control of your life through patience, humor, coping, support systems, knowledge, friendships, family, etc.

19. Lupus Awareness PSAs OWH�s Relationship with Ad Council began in September 25, 2007. OWH�s Relationship with Ad Council began in September 25, 2007.

20. The Challenge Lupus is one of the least recognized life altering diseases and one of the most difficult to diagnose Limited awareness and knowledge of lupus The challenge of creating a public service advertising campaign about Lupus is the following�.The challenge of creating a public service advertising campaign about Lupus is the following�.

21. The Opportunity Raise public awareness and understanding about this chronic disease that affects young women in hopes of an early diagnosis The opportunity is what this public service advertisement campaign can provide to our target audience.The opportunity is what this public service advertisement campaign can provide to our target audience.

22. Target Audience Young minority women in their childbearing years (18-44)

23. Key Insights Healthy women are passive regarding personal health care and are not concerned about most health conditions that may affect them Many have not heard of lupus; those who have are limited in knowledge Lupus patience, while extremely involved in their treatment and care, knew nothing about the disease before diagnosed. They considered this to be a serious disadvantage on sever levels In order to provide strategic direction for the PSAs, the Ad Council and Muse Communications (our probono advertising agency on the Lupus campaign) conducted exploratory research focus groups to gain insights and information from the target audience. Groups were conducted at the end of 2007 in Los Angeles, San Antonio and Chicago. 12 sessions were conducted, 4 per market. The groups were segmented by ethnicity (African American, Latina and Caucasian) as well as by women who have Lupus and women who are not familiar with Lupus. In order to provide strategic direction for the PSAs, the Ad Council and Muse Communications (our probono advertising agency on the Lupus campaign) conducted exploratory research focus groups to gain insights and information from the target audience. Groups were conducted at the end of 2007 in Los Angeles, San Antonio and Chicago. 12 sessions were conducted, 4 per market. The groups were segmented by ethnicity (African American, Latina and Caucasian) as well as by women who have Lupus and women who are not familiar with Lupus.

24. Main Message Visit your doctor or community health center to ask the question, �Could I have lupus?� From the exploratory research we developed a creative brief which became the foundation for the development of the PSA concepts. This statement became the main message for our entire body of work. From the exploratory research we developed a creative brief which became the foundation for the development of the PSA concepts. This statement became the main message for our entire body of work.

25. The Strategy To convey a sense of urgency in all materials specifically addressing the importance of early diagnosis and treatment, thereby reducing the number of lupus related deaths To connect with our target on an emotional level and focus on women who may be experiencing the symptoms of lupus but have not yet been diagnosed To inform young minority women of the facts so that if they suspect that they have symptoms of lupus, they will take appropriate action to ask for a medical evaluation by their doctor or community health center The following slide depicts the over all campaign strategy that was implemented throughout all of our campaign materials.The following slide depicts the over all campaign strategy that was implemented throughout all of our campaign materials.

26. Campaign Elements TV Radio Print (newspaper and magazine) Outdoor (billboard and bus shelters) Web Banners Microsite This campaign is designed to put a real face on a disease that few people know about and even fewer understand. Campaign features real women who have already been diagnosed with lupus acting as women who are experiencing symptoms of the disease and searching for answers to the question, �Could I have lupus?� The following slide represents a list of all of our campaign assets. This campaign is designed to put a real face on a disease that few people know about and even fewer understand. Campaign features real women who have already been diagnosed with lupus acting as women who are experiencing symptoms of the disease and searching for answers to the question, �Could I have lupus?� The following slide represents a list of all of our campaign assets.

27. Campaign: Lupus Awareness Print (Newspaper and Magazine) Ads Agency: Muse Communications Here are two examples of the print (magazine and newspaper) PSAs, one featuring Wendy and the other Yesenia (Spanish). Here are two examples of the print (magazine and newspaper) PSAs, one featuring Wendy and the other Yesenia (Spanish).

28. Lupus Awareness Outdoor PSAs Agency: Muse Communications Here are two examples of the outdoor (billboards and bus shelters) PSAs, one featuring Jenny and the other Betty (Spanish). For those living in DC, the bus shelter versions of the PSAs above are posted all over the city including Dupont Circle, outside the Department of Treasury, on K Street, U Street (across from Ben�s Chilli Bowl) and 16th street, etc.Here are two examples of the outdoor (billboards and bus shelters) PSAs, one featuring Jenny and the other Betty (Spanish). For those living in DC, the bus shelter versions of the PSAs above are posted all over the city including Dupont Circle, outside the Department of Treasury, on K Street, U Street (across from Ben�s Chilli Bowl) and 16th street, etc.

29. Campaign: Lupus Awareness Web Banners Agency: Muse Communications Here are two examples of the web banners PSAs, one featuring Yesenia (Spanish) and the other Artranese. If you click on the banners you will be directed to the campaign�s web site, www.couldihavelupus.gov. Here are two examples of the web banners PSAs, one featuring Yesenia (Spanish) and the other Artranese. If you click on the banners you will be directed to the campaign�s web site, www.couldihavelupus.gov.

30. Campaign Fulfillment The campaign fulfills to a web site (users can choose English or Spanish) and 1-800. The image depicts our campaign microsite. Users can choose to enter the English or Spanish site, which contains the same information. The micro site contains information about Lupus, symptoms of lupus, campaign PSAs, as well as encourages visitors to upload their personal stories and post comments in an effort to initiate a dialogue about the disease among the target audiences. � The micro site also includes links to the web sites of our federal and nonprofit partners where women can find additional information on lupus and local resources. The campaign fulfills to a web site (users can choose English or Spanish) and 1-800. The image depicts our campaign microsite. Users can choose to enter the English or Spanish site, which contains the same information. The micro site contains information about Lupus, symptoms of lupus, campaign PSAs, as well as encourages visitors to upload their personal stories and post comments in an effort to initiate a dialogue about the disease among the target audiences. � The micro site also includes links to the web sites of our federal and nonprofit partners where women can find additional information on lupus and local resources.

31. Campaign Distribution � March 31, 2009 Mailed and digitally distributed the TV, radio and print to PSA directors nationwide Distributed TV PSAs to the Ad Council�s network of more than a dozen video sharing sites, including placing them on OWH�s and the Ad Council�s YouTube channel Disseminated the web banners to the Ad Council�s list of ad networks Posted more than 3,000 bus shelters, 2,000 billboards 500 mall posters to LA and 200 phone kiosks ads in New York

32. Lupus Awareness PSA CampaignResults

33. Donated Media Dollars This slide shows the overall donated media this campaign has received from March 31, 2009 to September 30, 2009. This campaign is skewing above average per quarter (7 million is average/quarter). The campaign ranked in the Top 10 in the following categories of all of our 50 Ad Council campaigns: In Q2 2009 Outdoor #1, Public Relations #2, Spanish Broadcast #7 and Spanish Broadcast #9 In Q3 2009 Outdoor #2 Spanish TV (Impressions)#2, Spanish Broadcast TV #5, Broadcast TV #10 and Spanish Radio#10 This slide shows the overall donated media this campaign has received from March 31, 2009 to September 30, 2009. This campaign is skewing above average per quarter (7 million is average/quarter). The campaign ranked in the Top 10 in the following categories of all of our 50 Ad Council campaigns: In Q2 2009 Outdoor #1, Public Relations #2, Spanish Broadcast #7 and Spanish Broadcast #9 In Q3 2009 Outdoor #2 Spanish TV (Impressions)#2, Spanish Broadcast TV #5, Broadcast TV #10 and Spanish Radio#10

34. Donated Media � Outdoor This slide shows a few photos of our outdoor work nationwide. �Lilliana� was the first outdoor placed days after we launched the cmpaign in Houston, TX �Ladan� was located in Atlanta �Wendy� was located in San Francisco on the site of a building in September. Additionally, the campaign is chosen by indoorDIRECT in Dallas to be featured on more than 1,000 TV screens in several fast food restaurants nationwide. This slide shows a few photos of our outdoor work nationwide. �Lilliana� was the first outdoor placed days after we launched the cmpaign in Houston, TX �Ladan� was located in Atlanta �Wendy� was located in San Francisco on the site of a building in September. Additionally, the campaign is chosen by indoorDIRECT in Dallas to be featured on more than 1,000 TV screens in several fast food restaurants nationwide.

35. Calls to 1-800-994-9662 This slide reprsents the number of calls to OWH�s 1-800 since the start of the campaign.This slide reprsents the number of calls to OWH�s 1-800 since the start of the campaign.

36. Web Site Statistics This slide represents the traffic to the web site since March 31, 2009. The time spent on site is very high for an Ad Council campaign micro site.This slide represents the traffic to the web site since March 31, 2009. The time spent on site is very high for an Ad Council campaign micro site.

37. MSNBC Roadblock June 6, 2009 MSNBC Roadblock resulting in over 22 million impressions Roadblock = Lupus banners only ads running on homepage. Best placement possible The Lupus Campaign was chosen to be featured as the only advertisement on MSNBC on June 6th.The Lupus Campaign was chosen to be featured as the only advertisement on MSNBC on June 6th.

38. Diary Entries - 363 to Date �Hey, my name is Lisa. I registered for this web site today after seeing it on a billboard--it may be an answer to my prayers. I have had health problems since 2006 that started the year I turned 40. I was healthy up until I contracted mono in 2006. When I should have become feeling better after it was over, I continued to feel a lot of extreme fatigue, aching all over, and no energy�I am just wondering, does anyone with confirmed lupus feel like what I have described, and could give my some advice?� �I would first like to start off by saying. Thank you God for all you have done for me and allow me to embrace the pressures life you have given me. Every day you allowed me to wake up and share my story with others.� Here are just a sampling of the 363 diary entries on the web site.Here are just a sampling of the 363 diary entries on the web site.

39. Speakout Entries - 458 to Date I have so many of these symptoms I've been reading about on this site. I came on because of a commercial I saw while watching animal planet this morning. This information I found describes me�you know it would be great to find a cause for feeling like I do. And if the test comes back fine I guess I�m just this way for no reason. Can you tell I'm aggravated?.Is this the best route to go? If any other direction, I would so appreciate it. thank for letting me vent. Myra The speakout area of the web site enables women, husbands, daughters, mothers, etc to ask questions about lupus or discuss what they are going through to seek support.The speakout area of the web site enables women, husbands, daughters, mothers, etc to ask questions about lupus or discuss what they are going through to seek support.

40. Earned Media Dollars This slide shows the public relations earned media dollars to date as a result of our campaign launch at the very last day of Q1 2009 (March 31, 2009).This slide shows the public relations earned media dollars to date as a result of our campaign launch at the very last day of Q1 2009 (March 31, 2009).

41. Public Relations Launch Date: March 31, 2009 Multimedia News Releases Satellite TV and Radio Media Tour Customized Web Package Print/Online Press Outreach Social Media Program MAT Releases for Community Newspapers Multi-media press release (with campaign materials is distributed). The MNR reaches 22.5 million people. Satellite Media Tour (SMT) and Radio Media Tour (RMT) featuring Mercedes Yvette and Frances Ashe-Goins RN MPH reaches more than 21 million people. In June, we conducted a Spanish Satellite Media Tour (SMT) and Radio Media Tour (RMT) featuring Ledia Martinez, OWH�s Regional Women�s Health Liaison, reaches nearly 24 million people. A web package � with taped intro by Frances and campaign materials � was distributed. Press outreach was conducted. Additionally we conducted blog outreach and distributed 3 MAT releases (General health, African American and Hispanic) Multi-media press release (with campaign materials is distributed). The MNR reaches 22.5 million people. Satellite Media Tour (SMT) and Radio Media Tour (RMT) featuring Mercedes Yvette and Frances Ashe-Goins RN MPH reaches more than 21 million people. In June, we conducted a Spanish Satellite Media Tour (SMT) and Radio Media Tour (RMT) featuring Ledia Martinez, OWH�s Regional Women�s Health Liaison, reaches nearly 24 million people. A web package � with taped intro by Frances and campaign materials � was distributed. Press outreach was conducted. Additionally we conducted blog outreach and distributed 3 MAT releases (General health, African American and Hispanic)

42. Public Relations (con�t) Broadcast: Segments on BET, Univision, American Urban Radio, CNN en Espanol and The Tom Joyner Show Print/Online: Reuters, Ad Age, Contra Costa Times and 200 local newspaper stories, blog coverage Launch efforts reached nearly 68 million people Broadcast bullet reflects many of the big networks that participated in our English and Spanish SMTs/RMTs. Additionally, on April 28, 2009: BET aired story about campaign. The print and Online bullet represented some of places our press release and blog outreach were placed. Broadcast bullet reflects many of the big networks that participated in our English and Spanish SMTs/RMTs. Additionally, on April 28, 2009: BET aired story about campaign. The print and Online bullet represented some of places our press release and blog outreach were placed.

43. March 2009 Tracking Survey There was minimal awareness of Lupus messaging Only 1 in 10 respondents said they have recently seen, heard, or read anything about lupus Most women demonstrated a basic understanding of lupus; but, they reported a lack of knowledge about the disease 71% of respondents correctly identified lupus as an autoimmune disease Nearly 7 in 10 respondents correctly identified women of childbearing age as those that are primarily affected by lupus The majority of women, 8 in 10 respondents, said they know little to nothing at all about lupus Less than 30% of respondents reported they know the symptoms of lupus This represents our prewave research study that we conducted in March 2009. The results showed us the urgency and need to launch the campaign so that women are more aware of the disease its symptoms and the importance of talking to their doctors or community health center if they think they may have lupus.This represents our prewave research study that we conducted in March 2009. The results showed us the urgency and need to launch the campaign so that women are more aware of the disease its symptoms and the importance of talking to their doctors or community health center if they think they may have lupus.

44. March 2009 Tracking Survey Lupus registered higher on the radar of minority populations. Although certain subgroups are more likely to demonstrate knowledge of lupus: Older women Women with higher incomes Women with higher educational attainment There is a low level of concern among the women who could potentially be affected by the disease Among a battery of medical conditions, lupus concerned women least 18% of respondents reported being a little/a lot concerned about lupus, compared to 67% for cancer and 61% for depression In terms of desired behaviors: 5% of women spoke with a doctor about lupus 10% visited a website to get more information 18% discussed lupus with friends or family Additionally our tracking survey showed us there was a minimal awareness about lupus. We look forward to seeing the postwave results next month to see if we move the needle in overall awareness about lupus and if women went to their doctor or community health center if the thought they had lupus.Additionally our tracking survey showed us there was a minimal awareness about lupus. We look forward to seeing the postwave results next month to see if we move the needle in overall awareness about lupus and if women went to their doctor or community health center if the thought they had lupus.

45. Lupus Awareness PSA CampaignMoving Forward

46. Moving Forward Promote and redistribute existing work Develop and distribute new radio PSAs (:60s and additional :30s) Update campaign microsite Implementation of public relations (PR) and social media tactics and tools Seek alternative media opportunities Conduct online post wave survey Continue to monitor PSA campaign We have already renewed the existing TV, radio, print and outdoor PSAs so we can run it in donated media for another year (through March 2011) In April: Post wave survey will be conducted and results shared. New English and Spanish radio spots distributed. Public relations, social media and web update work begins (continues through July)We have already renewed the existing TV, radio, print and outdoor PSAs so we can run it in donated media for another year (through March 2011) In April: Post wave survey will be conducted and results shared. New English and Spanish radio spots distributed. Public relations, social media and web update work begins (continues through July)

47. Thought for the Day "We are each gifted in a unique and important way. It is our privilege and our adventure to discover our own special light.� Mary Dunbar Remember, B-R-R-E-E-A-T-H-H-E, DEEPLY and OFTEN today . . . . . .

48. DHHS - OFFICE ON WOMEN�S HEALTH 200 Independence Ave., SW Washington, DC 20201 Phone: 202-690-7650 Fax: 202-401-4005 www.4woman.gov 1-800-994-9662