Sickle Cell Disease Awareness and Education Strategy Development Workshop Report

Transcription

1 Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop Report Chapter Name 1

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3 Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop Report Publicatio No N Admiistrative Use Oly April 2010

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5 Ackowledgmets T he Natioal Heart, Lug, ad Blood Istitute (NHLBI) would like to thak all workshop participats, speakers, paelists ad moderators, as well as workgroup facilitators ad reporters for cotributig their expertise, ideas, ad experieces with sickle cell disease prevalece, maagemet, ad educatio to the NHLBI Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop, September 2 3, Special thaks are give to the workshop plaig committee for its cotributios to the plaig process. Ackowledgmets v

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7 Cotets Ackowledgmets... v Backgroud... 1 Workshop Goals ad Objectives... 1 About Sickle Cell Disease... 3 Sickle Cell Disease Research History... 5 Strategy Developmet Workshop Overview... 9 Charge to Workshop Participats: Small Group Sessios... 9 Workshop Recommedatios Workshop Presetatio Summaries September 2, September 3, Recommedatios for a Sickle Cell Disease Awareess ad Educatio Campaig Movig Forward Appedix A: Workshop Ageda Appedix B: Workshop Participats Cotets vii

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9 Backgroud The Natioal Heart, Lug, ad Blood Istitute (NHLBI) has log bee committed to developig ad maitaiig research efforts that im prove the lives of people who have sickle cell disease (SCD). Scietific advaces have led to effective approaches for the maagemet ad treatmet of SCD ad the prevetio of complicatios. As a result, people who have SCD live loger ad more productive lives tha they did i the past. Cosistet with goals described i its strategic pla, the NHLBI is reexamiig ad realigig its research program o SCD to embark o a revitalized research portfolio of basic, cliical, ad traslatioal research. The NHLBI is curretly developig evidecebased guidelies for the care of people who have SCD, which health care providers throughout the world ca use. I additio, the NHLBI will lauch a public awareess ad educatio campaig to raise awareess of ad brig atiowide attetio to SCD. A essetial compoet of this effort will be to educate providers ad patiets about SCD diagosis ad effective treatmet optios. maagemet, curret ad plaed research i the field, historical barriers to ad opportuities for plaig a atioal awareess ad educatio campaig, ad a overview of Federal efforts related to SCD. I a moderated talk show format, SCD patiets, family members, ad health care providers shared their persoal experieces of livig with ad maagig SCD. A pael preseted iformatio about three successful NHLBI awareess ad educatio campaigs. Workshop Goals ad Objectives Goals Provide the NHLBI with recommedatios for developig a atioal health awareess ad educatio campaig to raise awareess about SCD ad to brig atiowide attetio to its diagosis ad treatmet. Form a strog coalitio of stakeholders ad Federal Agecies to parter with the NHLBI i implemetig the SCD awareess ad educatio campaig. Objectives Provide the NHLBI with a set of comprehesive recommedatios for a atioal health awareess ad educatio campaig that: As part of the campaig s developmet, the NHLBI hosted a 2-day Strategy Developmet Workshop o September 2 3, 2009, i Bethesda, Marylad. The workshop brought together key stakeholders, icludig researchers, health care providers, advocacy orgaizatios, patiets, ad other iterested idividuals, to help the NHLBI begi plaig a atioal awareess ad educatio effort o SCD. Participats were charged with addressig key issues for a atioal campaig relatig to target audieces, messages, strategies, ad parterships. Presetatios covered the history of SCD ad its Idetifies the key target audieces. Offers cotet for key messages appropriate to each target audiece. Proposes program strategies, settigs, ad chaels for deliverig the messages that icrease awareess ad chage behaviors, alog with measures for assessig program effectiveess. Idetifies potetial parter orgaizatios ad people to work with the NHLBI i implemetig ad evaluatig the campaig, ad to expad the Istitute s reach to desired audieces. Backgroud 1

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11 About Sickle Cell Disease Sickle cell disease (SCD), also kow as sickle cell aemia, is a serious disease i which the body makes a altered form of hemoglobi, the protei i red blood cells that carries oxyge throughout the body. This geetic alteratio causes the body to produce abormal sickle- or crescet-shaped red blood cells. A commo miscoceptio is that SCD is solely a Africa America disease, but it also affects Hispaic Americas ad other emergig populatios i this coutry. The disease occurs i 1 out of every 36,000 Hispaic America births. 1 Exhibit 1. Normal ad Sickled Red Blood Cells Ulike ormal red cells that pass smoothly through the blood vessels, sickle cells are stiff ad sticky ad ted to form clumps that get stuck i the blood vessels ad obstruct blood flow. The result is episodes of extreme pai ( crises ), as well as chroic damage to vital orgas. SCD is a iherited disease. People who have the disease iherit two copies of the sickle cell gee oe from each paret. If a perso iherits oly oe copy of the sickle cell gee (from oe paret), he or she will have sickle cell trait. Sickle cell trait is differet from SCD. People who have sickle cell trait do ot have the disease, but they have oe of the gees that cause it. Like people who have SCD, people who have sickle cell trait ca pass the gee to their childre. SCD is most commo i people whose families come from Africa, South or Cetral America (especially Paama), Caribbea islads, Mediterraea coutries (such as Turkey, Greece, ad Italy), Idia, ad Saudi Arabia. I the Uited States, it is estimated that SCD affects about 70,000 to 100,000 people, primarily Africa Americas. The disease occurs i about 1 out of every 500 Africa America births. Figure A shows ormal red blood cells flowig freely i a blood vessel. The iset image shows a cross-sectio of a ormal red blood cell with ormal hemoglobi. Figure B shows abormal, sickled red blood cells clumpig ad blockig blood flow i a blood vessel. (Other cells also may play a role i this clumpig process.) The iset image shows a cross-sectio of a sickle cell with abormal hemoglobi. 1 Natioal Heart, Lug, ad Blood Istitute. (2008). Sickle cell aemia. Diseases ad Coditios Idex. Retrieved from About Sickle Cell Disease 3

12 About 2 millio Americas have sickle cell trait. 2 This coditio occurs i about 1 i 12, 3 or 8 percet, of Africa Americas. 4 5 The severity of SCD varies from perso to perso. Some people who have the disease have chroic pai ad/or fatigue. May people who have SCD face a shorteed life expectacy ad a host of recurrig, debilitatig, ad expesive health problems. 6 The effects of sickle cell crises o differet parts of the body ca cause a umber of complicatios, icludig ifectios ad orga damage. Two of the orgas most susceptible to damage are the brai ad the lugs. Strokes ad a lifethreateig respiratory problem kow as acute chest sydrome are frequet complicatios for people who have SCD. The disease also damages the splee at a very early age, which impairs the body s immue system ad makes youg childre extremely vulerable to overwhelmig bacterial ifectios. SCD has o widely available cure, although blood ad marrow stem cell trasplats or gee therapy may offer a cure i a small umber of cases. There are treatmets for the symptoms ad complicatios of the disease. Over the past 100 years, doctors have leared a great deal about SCD. They kow its causes, how it affects the body, ad how to treat may of its complicatios. Research is ogoig to lear more about SCD ad to fid ew treatmets for the disease. With proper care ad treatmet, may people who have SCD ca have improved quality of life ad reasoable health much of the time. Due to improved treatmet ad care, people who have SCD are ow livig ito their forties or fifties, or loger. 2 Natioal Heart, Lug, ad Blood Istitute. (1996). Facts about sickle cell aemia (p. 2) (NIH Publicatio No ). Bethesda, MD: U.S. Departmet of Health ad Huma Services. Retrieved from blood/sickle/sca_fact.pdf 3 Natioal Heart, Lug, ad Blood Istitute. (1996). Facts about sickle cell aemia (p. 2) (NIH Publicatio No ). Bethesda, MD: U.S. Departmet of Health ad Huma Services. Retrieved from blood/sickle/sca_fact.pdf 4 Natioal Heart, Lug, ad Blood Istitute. (.d.). Pulmoary ad vascular medicie brach. Retrieved from ih.gov/labs/pvmb/research-goals.asp? 5 Gladwi, M. T., & Vichisky, E. (2008, November 20). Pulmoary complicatios of sickle cell disease. New Eglad Joural of Medicie, 359(21), Retrieved from 6 Natioal Heart, Lug, ad Blood Istitute. (2002). Sickle cell research for treatmet ad cure (pp. 3 4) (NIH Publicatio No ). Bethesda, MD: U.S. Departmet of Health ad Huma Services. Retrieved from resources/docs/scd30/scd30.pdf 4 Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop Report

13 Sickle Cell Disease Research History I 1971, Presidet Richard Nixo made research o sickle cell disease (SCD) a atioal priority. O May 16, 1972, the Natioal Sickle Cell Aemia Cotrol Act was siged ito law. It provided for the establishmet of volutary sickle cell aemia screeig ad couselig programs, iformatio ad educatio programs for health professioals ad the public, ad research traiig i the diagosis, treatmet, ad cotrol of sickle cell aemia. Shortly after the act was passed, the Natioal Sickle Cell Disease Program was established, ad the Natioal Heart, Lug, ad Blood Istitute (NHLBI) was tasked with developig ad supportig a program of research i SCD. Sice that time, the NHLBI has committed more tha $1 billio to research o SCD. The Istitute supports a extesive research program to improve uderstadig of the pathophysiology of SCD ad to idetify effective approaches for its maagemet ad treatmet ad for prevetio of complicatios. Areas of curret iterest iclude geetic iflueces o disease maifestatios, regulatio of hemoglobi sythesis, developmet of drugs to icrease fetal hemoglobi productio, trasplatatio of blood-formig stem cells, gee therapy, ad developmet of aimal models for precliical studies. The NHLBI supports this research through ivestigator-iitiated projects ad special iitiatives. 7 This public ivestmet i SCD research has yielded sigificat returs, ragig from uderstadig fudametal biological ad pathological processes to traslatig basic discoveries ad cliical observatios ito cliical applicatios. Some examples of cliical beefits ad research discoveries iclude: The life expectacy of SCD patiets doubled betwee 1972 ad Prophylactic peicilli give to SCD patiets from birth to 5 years of age sigificatly reduced sepsis ad mortality. Trascraial Doppler (TCD) screeig idetified childre at icreased risk for stroke. Periodic blood trasfusios helped prevet first-time ad recurret stroke i childre who had SCD ad were at high risk for stroke. Hydroxyurea therapy i adults who had SCD resulted i a 50 percet reductio of the frequecy of pai, acute chest sydrome, hospitalizatios for paiful symptoms, ad uits of blood trasfused. Allogeeic boe marrow trasplats were show to cure the cliical symptoms of SCD. Despite sigificat cliical returs, a critical eed still exists for further research o SCD. This eed is summarized i the coclusios of the coferece statemet for the February 2008 Natioal Istitutes of Health Cosesus Developmet Coferece o Hydroxyurea Treatmet for Sickle Cell Disease: The burde of sufferig is tremedous amog may patiets who have sickle cell disease. These patiets experiece disease-related pai o may days of their lives ad usually do ot seek medical attetio util their symptoms 7 Natioal Heart, Lug, ad Blood Istitute. (2008). Report of the Natioal Heart, Lug, ad Blood Advisory Coucil Subcommittee Review of the NHLBI Sickle Cell Disease Program. Retrieved from scd_program.htm Sickle Cell Disease Research History 5

14 are overwhelmig. They ofte attempt to treat themselves ad thus do ot always come to the attetio of the healthcare system. Obtaiig optimal care for patiets who have sickle cell disease is challegig. May patiets are ot i a coordiated program aimed at prevetio of logterm complicatios ad acute pai crises. They rely heavily o emergecy ad acute care facilities for pai cotrol. Obtaiig specialty care ca be a sigificat challege as the umber of health professioals traied to treat the disease is limited ad the umber of professioals specializig i the treatmet of this disease is decreasig. The likelihood that patiets who have sickle cell disease have a pricipal physicia is low. Trasitioig from pediatric care to adult care poses particular challeges. May childre rely o public isurace for their care. Gaps i coverage occur, leadig to gaps i care. Exhibit 2. Selected Examples of Research NIH-Iitiated Research Ivestigator-Iitiated Research Sickle Cell Disease Cliical Research Network iitiated i fiscal year (FY) 2006 to facilitate traslatio of results from basic studies ad phase I/II cliical trials ito phase III trials i patiets who have SCD; fudig cotiues through FY Phase II/III Trial of Sildeafil for Sickle Cell Disease-Associated Pulmoary Hypertesio iitiated i FY 2006 as a complemet to ad extesio of a NHLBI itramural trial to test the effects of sildeafil therapy o exercise capacity ad elevated pulmoary artery pressure i SCD patiets who have pulmoary hypertesio. This trial was stopped i July 2009 due to safety cocers. I a iterim review of safety data, researchers foud that, compared to participats o placebo, participats takig sildeafil were more likely to have serious medical problems, icludig sickle cell crises. Pediatric Hydroxyurea Phase III Cliical Trial (BABY HUG) iitiated i FY 2000 to assess the effectiveess of hydroxyurea i prevetig chroic orga damage i youg childre who have SCD; fudig cotiues through FY Stroke With Trasfusios Chagig to Hydroxyurea (SWITCH) iitiated i FY 2005 to compare stadard therapy (trasfusios ad iro chelatio) with alterative therapy (hydroxyurea ad phlebotomy) for the prevetio of secodary stroke ad maagemet of iro overload i childre who have sickle cell aemia. Stroke Prevetio i Sickle Cell Aemia (STOP) iitiated i FY 1994 to determie whether periodic blood trasfusios were more effective at prevetig stroke tha stadard supportive care. Siblig Door Cord Blood Bakig ad Trasplatatio iitiated i FY 2001 to collect cord blood from siblig doors i families with childre who have SCD or thalassemia with the itet of future trasplatatio. Stroke Prevetio i Sickle Cell Aemia (STOP 2) iitiated i FY 2000 to determie whether blood trasfusios must cotiue or could be stopped ad whe. Comprehesive Sickle Cell Ceters iitiated i 1972 to support multidiscipliary research ad expedite developmet ad applicatio of ew kowledge for improved diagosis ad treatmet of SCD; 10 ceters were fuded through FY Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop Report

15 No populatio-based registries exist that provide good estimates of the umber of people who have sickle cell disease. Surveys idicate that a large proportio of patiets who have sickle cell disease are poor ad from uderserved commuities. Most U.S. patiets who have sickle cell disease are ethic miorities. For may, the limited resources ad lack of culturally competet care by experieced cliicias set the stage for suboptimal care. The best way to achieve optimal care for patiets who have sickle cell disease, icludig prevetive care, is for the patiets to be treated i cliics specializig i the care of this disease. All sickle cell patiets who have sickle cell disease should have a pricipal healthcare provider, ad that provider, if ot a hematologist, should be i frequet cosultatio with oe. 8 Exhibit 3. Icreases i Life Expectacy of Patiets Who Have Sickle Cell Disease All Americas Life Expectacy (years) Sickle Cell Disease The life expectacy of patiets who have sickle cell disease has doubled sice the passage of the Natioal Sickle Cell Aemia Cotrol Act Year Sickle cell diseases are idetified Cogress passes the Natioal Sickle Cell Aemia Cotrol Act The NHLBI establishes Comprehesive Sickle Cell Ceters First statewide ewbor screeig program is implemeted STOP study shows that frequet blood trasfusios ca lower rate of stroke by 90 percet NHLBI-supported researchers demostrate that boe marrow trasplatatio ca provide a cure for youg sickle cell patiets (ages 3 14) who have a matched siblig PROPS shows that prophylactic admiistratio of peicilli to childre prevets peumococcal ifectio MSH shows that hydroxyurea treatmet reduces paiful episodes i severely affected adults who have sickle cell disease Source: Natioal Heart, Lug, ad Blood Istitute. (2002). Sickle cell research for treatmet ad cure (p. 15) (NIH Publicatio No ). Bethesda, MD: U.S. Departmet of Health ad Huma Services. 8 Natioal Istitutes of Health. (2008). NIH Cosesus Developmet Coferece: Hydroxyurea treatmet for sickle cell disease. Fial statemet. Retrieved from Sickle Cell Disease Research History 7

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17 Strategy Developmet Workshop Overview The Natioal Heart, Lug, ad Blood Istitute (NHLBI) coveed a 2-day workshop i September 2009 to elicit recommedatios from sickle cell disease (SCD) stakeholders for the developmet of a atioal awareess ad educatio campaig. The NHLBI charged participats with addressig a umber of key questios that would help iform the SCD campaig. These questios cocered target audieces, messages, commuicatio strategies, ad parterships. O the first day of the workshop, the NHLBI Director, Dr. Elizabeth G. Nabel, reviewed the history of SCD ad past ad curret NHLBI research efforts. Speakers the addressed the meetig s call to actio ad historical barriers to ad opportuities for creatig a atioal campaig. They also provided a overview of other SCD educatio ad outreach efforts. Durig a moderated talk show, several people livig with SCD, a family member carig for childre who have SCD, ad cliicias providig care for SCD patiets shared their persoal experieces of livig with ad maagig the disease. A pael presetatio iformed the audiece about the health commuicatio process used i three successful NHLBI awareess ad educatio campaigs focusig o wome s heart health, chroic obstructive pulmoary disease (COPD), ad peripheral arterial disease (P.A.D.) ad the critical role of formative research i campaig desig. Fially, a overview of existig SCD campaigs ad other major educatioal efforts was preseted. Followig the presetatios, participats broke ito five small workig groups to address two key questios related to target audieces ad campaig messages. Presetatios o the secod day of the workshop covered a overview of the NHLBI s SCD research efforts i cojuctio with the Ceters for Disease Cotrol ad Prevetio (CDC) ad the Health Resources ad Services Admiistratio (HRSA). Followig these presetatios, attedees agai broke ito small workig groups to cosider two fial key questios pertaiig to strategies ad settigs for message delivery ad potetial parters. I closig, Dr. W. Keith Hoots, Director of the NHLBI Divisio of Blood Diseases ad Resources, summarized workshop activities ad outlied the NHLBI s ext steps for developig ad implemetig a atioal awareess ad educatio effort. Charge to Workshop Participats: Small Group Sessios Participats were asked to cosider the followig questios ad make related recommedatios for developig a comprehesive campaig strategy. 1. Who are the key target audieces for the campaig? The NHLBI sought to determie the audieces most i eed of iformatio ad educatio, ad those for whom outreach efforts could have the greatest effect. Participats were asked to cosider ay ad all audieces ad subsets of audieces, both public ad professioal. 2. What are the most sigificat messages for each target audiece idetified? The NHLBI sought iput o the focus of a atioal effort. Participats were asked to recommed whether the campaig should primarily have a awareess or educatio focus. Based o the recommeded focus, participats were asked to propose the most sigificat messages eeded for each target audiece idetified. Strategy Developmet Workshop Overview 9

18 3. What atioal strategies, commuity settigs, ad chaels should the NHLBI develop for a atioal awareess ad educatio campaig? The NHLBI sought recommedatios o strategies ad commuicatio chaels for effectively dissemiatig the campaig s key messages ad reachig the target audiece(s). 4. Which orgaizatios would make the best potetial parters for helpig the NHLBI implemet, sustai, ad evaluate the campaig? Parter orgaizatios ca help the NHLBI vastly expad its reach to the target audiece(s). These orgaizatios also ca serve as trusted itermediaries for the dissemiatio ad delivery of messages ad materials to desired audieces. Workshop participats were asked to idetify orgaizatios that might cotribute to the implemetatio of the SCD campaig. Workshop Recommedatios Meetig participats ethusiastically embraced their charge to develop priority recommedatios for creatig a atioal SCD awareess ad educatio campaig. As they worked i small groups, they were able to make broad recommedatios about target audieces, messages, implemetatio strategies, ad parterships. Although o sigle target audiece emerged as a priority, the followig three audieces were deemed essetial: people who have SCD ad their families, the geeral public, ad health care providers. Other geeral recommedatios stemmig from small-group discussios icluded the followig: Raise awareess amog affected populatios about treatmet ad maagemet optios. Raise awareess amog targeted segmets of the geeral public about SCD, sickle cell trait, ad their implicatios. Ecourage people affected by SCD to become empowered about their ow health ad seek appropriate medical care. Educate primary health care providers about the maagemet of ad ew stadards of care for patiets of all ages who have SCD. 10 Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop Report

19 Workshop Presetatio Summaries Presetatios at the September 2009 workshop covered past, curret, ad future plas for Federal programs ad research related to sickle cell disease (SCD), perspectives from people affected by SCD ad providers workig with SCD patiets, ad a overview of other Natioal Heart, Lug, ad Blood Istitute awareess ad educatio efforts. These presetatios were desiged to set the stage for deliberatios that would take place i the small workig group sessios. Sectios that follow provide summaries of cotet from the workshop s pleary sessios. September 2, 2009 Welcome ad Itroductio Elizabeth G. Nabel, M.D., Director, Natioal Heart, Lug, ad Blood Istitute The Natioal Heart, Lug, ad Blood Istitute (NHLBI) believes i the importace of atioal educatio campaigs ad has a history of measurably successful campaigs o topics such as heart health, asthma, ad chroic obstructive pulmoary disease (COPD). This workshop serves as a milestoe ad startig place for developmet of a dyamic ad effective sickle cell disease (SCD) awareess ad educatio effort. SCD is a extremely serious, chroic disease that affects people i the Uited States ad throughout the world. The disease is especially prevalet i Africa America, Cetral ad South America, Mediterraea, ad Saudi Arabia populatios. Although cosidered rare, it is estimated that SCD affects 70,000 to 100,000 people i the Uited States, maily Africa Americas. SCD occurs i approximately 1 out of every 500 Africa America births ad 1 out of every 36,000 Hispaic America births. I additio, about 2 millio people i the Uited States have sickle cell trait ad ca pass the sickle cell gee to their offsprig. Sickle cell has a profoud impact, ot just o the patiet, but o the whole family dyamic. Stephaie Davis, M.D. Although SCD is kow to have existed earlier, Chicago cardiologist ad professor of medicie James B. Herrick first oted the cell irregularity i his research i I 1949, Dr. Lius Paulig ad colleagues showed that SCD results from a hemoglobi molecule abormality ad coied the term molecular disease to describe SCD. By the 1970s, maagemet of the disease had grow to iclude blood trasfusios, fluid maagemet, ad aalgesic therapy. I 1972, uder the Natioal Sickle Cell Aemia Cotrol Act, the Natioal Istitutes of Health (NIH) bega SCD research studies. Fidigs from these studies led to a dramatic icrease i life expectacy for people who had SCD. Sice the, key research milestoes have icluded: 1982: Newbor screeig was established i three U.S. States. 1983: Efficacy of oral peicilli ad cofirmatio of the importace of early diagosis ad treatmet were demostrated. 1991: Compellig results were demostrated from a multisite study o treatmet with hydroxyurea. Workshop Presetatio Summaries 11

20 1995: A stroke prevetio study yielded strog evidece for the value of Doppler ultrasoud i stroke prevetio. 2000: Use of ultrasoud for stroke showed progress i reducig pai, icreasig lifespa, ad improvig quality of life for people who have SCD. Today, research has cofirmed that hydroxyurea is a valuable treatmet for adults. BABY HUG, a pediatric cliical trial for the use of hydroxyurea i babies, is just beig completed; aother, loger study is plaed. I additio, the NHLBI curretly is udertakig a major effort with the Ceters for Disease Cotrol ad Prevetio to develop ad implemet a registry ad surveillace system i hemoglobiopathies (RuSH). RuSH will be a atioal data system with a surveillace compoet, a registry system, ad a biospecime repository that will provide data to describe the epidemiologic ad cliical characteristics of people who have all geotypes of SCD, thalassemias, ad other hemoglobiopathies. The first phase of the project will be to coduct pilot studies i five to six States to test specific data collectio methods, procedures, ad orgaizatioal structures. This phase also will determie the feasibility of implemetig RuSH o a atioal level. The developmet of SCD guidelies is oe of several priority areas for the NHLBI. The NHLBI plas to commuicate the guidelies to primary health care providers ad the geeral public, people who have SCD or sickle cell trait, ad their families, advocates, ad the media. This workshop the first step i this commuicatio effort will help the NHLBI idetify key target audieces, messages, ad implemetatio strategies at local, atioal, ad iteratioal levels. The workshop also will help forge parterships to help the Istitute achieve (ad measure) success. A Call To Actio Laetta Jorda, M.D., M.P.H., M.S.P.H., Chief Medical Officer, Sickle Cell Disease Associatio of America The Sickle Cell Disease Associatio of America (SCDAA) has bee the leadig oprofit cosumer orgaizatio focusig o sickle cell disease (SCD) sice The SCDAA has worked for early four decades to develop a coordiated atioal approach ad parter with commuity-based orgaizatios to provide iformatio ad support to people affected by SCD ad their families. Childre eed to be treated differetly from adults; right ow there is a huge discoect betwee childhood ad adult treatmet for sickle cell disease. Tiffay McCoy, SCD patiet SCD is cosidered a orpha disease (poorly publicized ad ot yet adopted by the medical research ad fudig commuities) because it affects fewer tha 200,000 people atiowide. Although the medical burde of orpha diseases is great, these diseases ofte are last to receive research fudig. May historical barriers have made advacemets i SCD maagemet difficult. For example, although research shows that severe ad paiful episodes are characteristic of the disease, widespread implemetatio of pai maagemet has ot occurred. This has led to more emergecy room visits ad hospitalizatios tha should be ecessary. Although ambulatory ceters today hadle a rage of medical problems, few are equipped to 12 Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop Report

21 care for the medical eeds of patiets who have SCD. I fact, some SCD treatmet ceters have bee closed. Childhood screeig for SCD is ow madatory i all 50 States, but stadards of care ad prevetio measures that could improve quality of life are lackig. To advace ad improve the maagemet of SCD, it is ecessary to address the complexities of avigatig the health care system, resolve access issues, address health care disparities that exist at both the idividual ad istitutioal levels, ad egage the disadvataged. I m oly a patiet whe I m i the doctor s office, I m really a whole perso livig a active life; I just happe to live with sickle cell disease. Tiffay McCoy, SCD patiet This meetig s call to actio is to develop ideas for a public awareess ad educatio campaig that will improve the lives of people who have SCD by: Establishig trust of patiets ad families i the health care system. Providig health iformatio i useful, uderstadable laguage. Helpig patiets avigate the complexities of today s health care system. Deliverig powerful persoal stories to people affected by SCD via speakers bureaus, tow hall ad other meetigs, ad all forms of media ad social etworkig techologies. Creatig better alliaces amog orgaizatios. Ecouragig patiets to participate i the cliical trials process by explaiig i simple terms what this process ivolves ad why it is importat to both idividuals ad the SCD commuity as a whole. Measurable outcomes might iclude reducig complicatios from comorbidities, umber of days i the hospital, ad stigma attached to the disease. The Natioal Heart, Lug, ad Blood Istitute has led the way for other successful atioal awareess ad educatio efforts. Now is the time to focus awareess ad educatio efforts o SCD. Opportuities ad Challeges for Sickle Cell Disease Awareess i the Uited States Carlto Haywood, Jr., Ph.D., M.A., Assistat Professor of Medicie; Associate Faculty i Bioethics, Johs Hopkis Uiversity Historically, umerous barriers have hidered atioal awareess about sickle cell disease (SCD). For example, oe barrier is the low prevalece of SCD compared with may other health problems affectig the Africa America commuity, such as cardiovascular diseases, cacer, ad diabetes. Yet SCD is the most commo disease idetified i ewbor screeigs, ad people who have the disease may face a rage of medical complicatios ad a shorteed life expectacy. Ulike cystic fibrosis, a similarly rare disease, SCD has ever garered the public support required for adequate research. The uderstadig of SCD has chaged dramatically over the years. I the past, the medical commuity lacked kowledge about SCD, ad little could be doe for people who had the disease. Today scietists kow that SCD was the first molecular disease discovered ad that its iheritace patter is a classic case study i may biology/ geetics classes. Curretly, a variety of treatmets ad self-care practices are available for people who have SCD. Although Africa Americas historically have bee margialized both politically ad socially, progress has bee made. Betwee 1959 ad 1972, Workshop Presetatio Summaries 13

22 a umber of evets coverged to brig attetio to SCD, icludig a Eboy magazie feature about the disease, a heighteed awareess durig the 1960s Civil Rights Movemet of issues affectig the well-beig of Africa Americas, Presidet Nixo s February 1971 focus o cacer ad SCD as atioal health priorities, ad the May 1972 Natioal Sickle Cell Aemia Cotrol Act. As a result of this awareess, we leared: The potetial ability to capture public attetio through sharig the persoal experieces of people who have SCD. The potetial stregth of makig SCD a commuity-wide issue. The beefit of usig a powerful/prestigious perso (for example, the Presidet) to help place SCD i the atioal cosciousess. May challeges to SCD awareess still exist. For example, how to best address issues related to SCD ad carrier status (people who have sickle cell trait) geerates a log list of questios, such as: How are SCD ad sickle cell trait defied? What is the sigificace of havig sickle cell trait? Is sickle cell trait cosidered a disease or coditio? What risks are associated with sickle cell trait? What ethical questios must be addressed for people who have sickle cell trait? What public perceptios ad myths remai about people who have SCD, ad how do we rid the disease of its stigma? How does SCD affect idividuals ad social istitutios, such as health care, employmet, ad educatio? What persoal or paretal resposibilities does carrier status ivolve? We eed to kow our ow family histories. I ever kew a aut ad ucle had sickle cell disease. We eed the public ad the doctors to be better educated for the ext geeratio. Michael McCoy, father of two childre who have SCD The public is just begiig to focus o these issues. A Jue 2009 article i the America Joural of Public Health addressed cliical ad ethical issues i maagig carrier status. That same moth, the Natioal Collegiate Athletic Associatio wo a court case related to its recommedatio of testig college athletes for SCD to prevet related ijuries or deaths durig athletic activities. Racial misperceptios preset aother challege to SCD awareess. Although SCD affects people from a wide variety of ethic ad geographical areas, the myth persists that the disease oly affects Africa Americas. Additioally, withi the Africa America commuity, a eed exists to icrease the visibility ad political viability of SCD. This effort should ot perpetuate the racial myth or allow high-achievig idividuals to udermie public perceptios about the severity of the disease. The Natioal Heart, Lug, ad Blood Istitute s (NHLBI s) campaig must icrease atioal awareess of SCD without udermiig the love, carig, respect, ad appreciatio for those who live with the disease. It is critical that the NHLBI review ad lear from past efforts, address kow challeges, ad rely o the actual experieces of people livig with SCD to guide program developmet ad implemetatio. 14 Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop Report

23 Talk Show: Viewpoits I Sickle Cell Disease Moderator: Paul Berry, Paul L. Berry & Associates Paelists: Michael McCoy, father ad care provider for two childre who have sickle cell disease (SCD) Tiffay McCoy, SCD patiet J. Hoxi Joes, patiet ad cosumer advocate for the SCD commuity Stephaie Davis, M.D., primary care physicia ad assistat professor, Departmet of Family ad Commuity Medicie, Uiversity of Marylad School of Medicie Kathry Hassell, M.D., hematologist ad director of the Colorado Sickle Cell Treatmet ad Research Ceter Joseph Wright, M.D., M.P.H., pediatric emergecy medicie physicia ad seior vice presidet, Child Health Advocacy, The Child Health Advocacy Istitute, Childre s Natioal Medical Ceter It s very importat for people like me to have a role i educatig ad empowerig people about sickle cell disease. J. Hoxi Joes, SCD patiet ad advocate Durig this sessio, moderator Paul L. Berry asked paelists a rage of questios about medical, social, ad educatioal issues related to SCD. Paelists provided their perspective o livig ad/ or workig with people who have SCD. Audiece questios ad commets were ivited through the sessio. Michael McCoy is the father of paelist ad SCD patiet Tiffay McCoy. He has two other childre, oe of whom has SCD that is more severe tha Tiffay s. He spoke of his joy ad pride i seeig Tiffay grow ito a accomplished adult, college graduate, ad mother, despite the challeges of livig with SCD. Mr. McCoy also shared the profoud effect the disease has had o his etire family, icludig the shock of hearig that a child might ot live to age 16, the pai a paret edures watchig a child suffer, holidays ad precious family time spet i hospitals, ad the difficulty of esurig appropriate time ad attetio to his healthy child. Mr. McCoy expressed appreciatio for the quality of care his childre have received at both the Natioal Istitutes of Health ad The Johs Hopkis Hospital; he gave special praise to a urse who had provided cotiuig care, attetio, ad support over the years. However, Mr. McCoy also oted the lack of kowledge about SCD that his family has ecoutered i other medical settigs. He described the difficulty of fidig the iformatio ad resources eeded to uderstad ad maage the disease. Tiffay McCoy ad J. Hoxi Joes both discussed their ability to lead busy, productive lives, despite the obstacles that SCD presets. Ms. McCoy oted that SCD does ot defie her, ad it is iappropriate to cosider people who have SCD as victims. Both Ms. McCoy ad Ms. Joes discussed the eed for better access to iformatio ad support. They explaied that although a vast amout of iformatio is available, it is fragmeted ad difficult to fid. Ms. Joes, a active health advocate, expressed hope that the Natioal Heart, Lug, ad Blood Istitute (NHLBI) would target outreach efforts to the geeral public; oe educated perso ca reach out to iform others. She further stressed the eed for a culturally competet health care eviromet. Both Ms. McCoy ad Ms. Joes applauded the NHLBI for udertakig this effort ad for ivolvig the workshop participats, who were really i the SCD treches. Workshop Presetatio Summaries 15

24 The three physicia paelists Stephaie Davis, Kathry Hassell, ad Joseph Wright strogly supported the idea of a widespread atioal educatio effort. A icreasig umber of people kow about SCD, ad screeig ad geetic couselig are available i may areas. However, a lack of uderstadig about the disease ad its complicatios remais, eve amog some health care providers. There are ot eough physicias with sickle cell traiig to care for all the adults with the disease. Kathry Hassell, M.D. Paelists emphasized a umber of importat issues related to health care providers, icludig the followig: Families affected by SCD eed carig, kowledgeable providers whom they ca easily cotact. It is essetial for providers to treat the whole perso, ot just the disease. Providers eed educatio to esure that they fully uderstad SCD complicatios ad do t just treat symptoms. Curretly, patiets may be assessed icorrectly because of a erroeous assumptio that a urelated medical issue is associated with the patiet s SCD status. As childre grow ito adulthood, providers also must address psychosocial issues. Drs. Davis, Hassell, ad Wright expressed hope that the NHLBI will geerate excitemet i the field ad attract ew researchers to achieve a better uderstadig of SCD ad related therapies. The most effective health care providers for SCD patiets are those who take a comprehesive approach to care ad are educated about the most effective therapies. Campaig 101: Keys to Success Moderator: Paul Berry, Paul L. Berry & Associates Paelists: Amy Piaalto, Natioal Heart, Lug, ad Blood Istitute (NHLBI) Sue Shero, R.N., M.S., NHLBI A Taubeheim, Ph.D., M.S.N., NHLBI Jaice Bowie, Ph.D., M.P.H., The Johs Hopkis Bloomberg School of Public Health Durig this sessio, pael members described sciece-based NHLBI awareess ad educatio campaigs, reviewed the process for developig ad implemetig them, ad offered lessos leared that could be applied to a sickle cell disease (SCD) awareess ad educatio campaig. Ms. Piaalto preseted a overview of COPD Lear More Breathe Better, a awareess ad educatio campaig sposored by the NHLBI. This campaig aims to raise awareess amog the approximately 12 millio Americas who have chroic obstructive pulmoary disease (COPD), as well as the additioal 12 millio Americas who may have the disease but do ot realize it. May people who have COPD are uaware of it because they do ot recogize the symptoms. The campaig ecourages the target audiece to get diagostic testig ad treatmet for COPD. Further, campaig messages emphasize to health care providers that COPD ca be easily recogized ad diagosed, ad it should be treated aggressively. COPD Lear More Breathe Better focuses o me ad wome older tha 45, especially those who smoke or used to smoke. The campaig team produced educatioal materials COPD Lear More Breathe Better is a registered trademark of the U.S. Departmet of Health ad Huma Services (HHS). 16 Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop Report

25 for the public, icludig public service aoucemets (PSAs) for radio ad prit, fact sheets, a Web site, ad a video. The team also developed a speaker s guide, which cotais a peer-to-peer presetatio for health care providers ad talkig poits for speakers makig public presetatios. I additio, the team developed a pocket-sized referece card for health care providers. The campaig relies o a strog coalitio of volutary, State, ad local commuity orgaizatios to help dissemiate messages ad materials. Eve though people with sickle cell disease ofte preset at the emergecy room i crisis, emergecy room doctors geerally do t uderstad the disease because they see it so rarely. Joseph Wright, M.D., M.P.H. Ms. Shero described Stay i Circulatio: Take Steps to Lear About P.A.D., a atioal campaig to icrease public ad health care provider awareess of peripheral arterial disease (P.A.D.) ad its associatio with other cardiovascular diseases. The campaig targets adults older tha 50 who are at risk for P.A.D., particularly Africa Americas. For this campaig, the NHLBI partered with the P.A.D. Coalitio, other atioal ad commuitybased orgaizatios, ad oprofits ad corporatios. A commuity actio kit was developed to help parters support atioal activities. The campaig uses PSAs, a video, educatioal materials, a Web site, ad mass media to deliver messages to the public. Dr. Taubeheim spoke about The Heart Truth, a atioal campaig to raise awareess amog wome about heart disease. The campaig targets wome betwee the ages of 40 ad 60. The campaig s objectives are to raise awareess that heart disease is the #1 killer of wome, ad to urge wome to talk with their health care providers about their persoal risk for heart disease ad take actio to lower that risk. A traditioal social marketig approach, icludig a extesive formative research phase, was used to pla, implemet, ad evaluate the campaig. Iput from parter orgaizatios ad focus groups coducted with wome across the coutry also iformed the campaig s developmet. The NHLBI secured former First Lady Laura Bush as the campaig s atioal spokesperso. The Red Dress created by the NHLBI as the atioal symbol for wome ad heart disease awareess is the creative ceterpiece of the campaig. Key campaig implemetatio strategies iclude a road show, which offers heart disease risk factor screeigs; commuity programmig; partership developmet; a outreach program for wome of color; dissemiatio of educatioal materials; ad a series of keyote evets, such as Natioal Wear Red Day ad The Red Dress Collectio Fashio Show. Dr. Bowie offered a overview of the role of formative research, a critical first step that guides program developmet. The importace of formative research caot be overstated without this step, program failure is likely. Formative research helps plaers determie the most appropriate target audieces; which approaches will best reach the iteded audieces; what messages, settigs, ad delivery mechaisms will resoate with the target audieces; ad how to best determie campaig effectiveess. Formative research may iclude iput from experts, such as those attedig The Heart Truth ad The Red Dress are registered trademarks of HHS. Natioal Wear Red Day is a registered trademark of HHS ad the America Heart Associatio. Workshop Presetatio Summaries 17

26 the SCD workshop; literature reviews ad media scas; iterviews ad focus groups with target audieces; iput from potetial parter orgaizatios that ca reach the iteded audieces; ad testig of themes, messages, ad materials with iteded audieces prior to fializatio. The potetial beeficiaries of ay campaig must be ivolved i the plaig process. For the SCD awareess campaig, it will be essetial to reach out to diverse groups of stakeholders, icludig members of Africa America ad other miority groups, SCD patiets, health care providers, employers, ad others. Formative research provides the mechaism for hearig the iput of target audieces, determiig awareess level, ad uderstadig audiece beliefs ad feeligs about SCD. Fially, formative research adds credibility ad value to the effort; it reflects the eeds ad values of the target audieces ad reassures plaers that their work addresses those eeds. The NHLBI campaigs all have commo elemets that make them successful, icludig the followig: Formative research. This research ca yield sigificat ad sometimes surprisig iformatio. For example, for the COPD campaig, plaers wated to tell the target audiece to stop smokig. Research showed that the audiece would ot liste or respod to this message. Therefore, plaers ameded the message to oe the audiece would accept focusig o risk factors for COPD ad steps to take for early diagosis. Research for the P.A.D. campaig also showed that people were ufamiliar with P.A.D. As a result, the team developed campaig messages, focused the messages o the disease ad outcomes people could uderstad (e.g., heart attack ad stroke), targeted those at greatest risk (Africa Americas ad people older tha 50), ad offered actio steps. Parters. The NHLBI always relies o a strog etwork of parters to help exted the reach of its campaigs ad expad resources. Parters also are essetial for esurig sus taiability after iitial program implemetatio. Moreover, campaig parters ca be effective advocates for the issue ad fudig eeds. Resources. Regardless of the fudig level, resources are ever sufficiet. Natioal campaigs are expesive, ad determiig fudig priorities ca be difficult. Usually campaig implemetatio strategies must be approached icremetally. However, corporatios sometimes ca be egaged to support a campaig through paid advertisig, sposorship of key activities, or i-kid cotributios. For example, i 2009, i partership with The Heart Truth campaig, Diet Coke spet more tha $60 millio i promotig campaig messages o televisio ad placig the sigature Red Dress logo o 6.1 billio packages, bottles, ad cas of Diet Coke. Strategies. New techology is chagig traditioal methods for commuicatig with ad reachig audieces. Televisio ad prit PSAs are ot as useful as they oce were because of lack of cotrol over their placemet ad timig. Today, campaig plaers must icorporate vastly popular social etworkig ad Web-based approaches ito their implemetatio strategies. Well-kow spokespersos, such as Laura Bush, add prestige to ad recogitio of a health issue or disease; other examples iclude Michael J. Fox for Parkiso s disease; Magic Johso for HIV/ AIDS; ad Jerry Lewis for muscular dystrophy. Evaluatio. Each successful NHLBI campaig budgeted for process ad outcome evaluatios. Program evaluatio is a critical step i the health commuicatios process. For example, the NHLBI used a measurable objective awareess of heart disease to 18 Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop Report

27 assess the effectiveess of The Heart Truth effort. Before the campaig bega, oly 34 percet of wome kew that heart disease was the #1 killer of America wome. I 2009, that umber had grow to 68 percet. I summary, successful campaigs are built o well-established, evidece-based commuicatio priciples. Effective plaig ivolves settig priorities; doig formative research; creatig uified messages that resoate with iteded audieces; uderstadig the eeds of target audieces by askig, listeig, ad respodig; idetifyig key parters; creatively combiig both traditioal methods ad emergig health commuicatio strategies to reach target audieces; ad plaig for outcome assessmet. Overview of the Results of a Evirometal Sca o Existig Sickle Cell Disease Campaigs ad Major Educatio Efforts Edward Doell Ivy, M.D., M.P.H., Medical Officer, Ehaced Dissemiatio ad Utilizatio Brach, Divisio for the Applicatio of Research Discoveries, Natioal Heart, Lug, ad Blood Istitute As part of its preparatio for the sickle cell disease (SCD) workshop ad campaig, the Natioal Heart, Lug ad Blood Istitute (NHLBI) asked the America Istitutes for Research to coduct a evirometal sca of campaigs ad campaig evaluatios related to SCD withi the past 5 years. The process icluded a literature review ad a Web search. Thirty campaigs withi the Uited States were idetified as occurrig betwee 2004 ad 2009, alog with five publicatios relevat to campaig evaluatio. Amog the campaigs, 10 were atioal ad 20 were smaller scale, regioal campaigs. Exhibit 4 outlies the umber of campaigs that used various chaels, target audieces, ad key messages, which were idetified i the evirometal sca. Most campaigs were iteded to raise awareess of SCD or provide educatio about SCD to patiets ad families. A smaller umber of campaigs ecouraged actio through blood doatio or fudraisig. The umber of campaigs may idicate a low level of kowledge about SCD i the geeral public ad amog the specific racial ad ethic groups at icreased risk for the disease. I total, 17 campaigs targeted the geeral public, 8 focused o patiets who have SCD or families affected by SCD, 9 focused specifically o the Africa America commuity, ad 3 focused o the medical commuity, such as physicias. Campaigs focused o raisig awareess geerally targeted the overall populatio, whereas campaigs focused o patiet educatio more ofte targeted populatios at highest risk for SCD. Some campaigs focused o a specific evet, such as a aual walkatho or SCD awareess day, while others cotiued over multiple years. For example, the aual Natioal Stomp Out Sickle Cell Walk cosisted of 13 regioal walks held o the same day or durig Sickle Cell Awareess Moth (September). The campaigs have used a umber of strategies to raise awareess ad educate about SCD. These strategies iclude: Health fairs (the most frequetly used strategy), blood drives, orgaized walks or observaces focused o raisig awareess, ad other commuity evets. Music ad arts evets, icludig a jazz evet fudraiser, a CD-release party for ispiratioal music composed specifically to uplift SCD patiets, ad a display of work from cotemporary artists iteded to promote SCD awareess. Outreach i a variety of settigs, such as grocery stores, YMCAs, schools, commuity orgaizatios, ad churches. Iformatioal campaigs. Spokespersos deliverig messages about SCD to various commuities. Workshop Presetatio Summaries 19

28 Pharmaceutical maufacturer Novartis ad the Sickle Cell Disease Associatio of America sposored campaigs featurig well-kow spokespersos who did ot have the disease but were willig to help raise awareess through commuity outreach ad public speakig. However, the ratioale for usig celebrity spokespersos was ot always clear. The campaigs used multiple strategies ad methods to dissemiate iformatio. However, few provided guidace o treatmet or health maiteace optios. These campaigs also did ot appear to provide iformatio to medical ad health professioals who treat SCD patiets. I summary, the evirometal sca foud oly a limited umber of campaigs. The focus of these campaigs was primarily o geeral awareess, rather tha treatmet optios, maagemet, or prevetio of SCD complicatios. I additio, campaig results ofte lacked iformatio o the success of the evets (e.g., attedee turout or distributio volume of ay awareess materials). As the NHLBI goes forward with the SCD awareess ad educatio campaig, these fidigs uderscore the importace of defiig goals, determiig bechmarks ad measurable targets, idetifyig audiece(s) ad appropriate parters, ad developig log-term followup measures. Exhibit 4. Number of Campaigs Idetified i the Evirometal Sca Chaels Target Audieces Key Messages Regioal Total Radio: 1 News: 0 TV: 1 Public evets: 10 Spokespersos: 0 Orgaized walks ad observaces: 8 Writte materials: 2 Music ad arts: 5 Other: 3 Natioal Total Radio: 1 News: 1 TV: 0 Public evets: 3 Spokespersos: 5 Orgaized walks ad observaces: 3 Writte materials: 1 Music ad arts: 1 Other: 0 Grad Total Radio: 2 News: 1 TV: 1 Public evets: 13 Spokespersos: 5 Orgaized walks ad observaces: 11 Writte materials: 3 Music ad arts: 6 Other: 3 Geeral public: 15 Patiets: 4 Africa Americas: 5 Multiple of other ethicities: 4 Medical commuity: 2 Other groups: 2 Geeral public: 2 Patiets: 4 Africa Americas: 4 Multiple of other ethicities: 1 Medical commuity: 1 Other groups: 1 Geeral public: 17 Patiets: 8 Africa Americas: 9 Multiple of other ethicities: 5 Medical commuity: 3 Other groups: 3 Raise awareess: 13 Doate blood: 2 Raise fuds: 5 Patiet educatio: 9 Other: 2 Raise awareess: 6 Doate blood: 0 Raise fuds: 1 Patiet educatio: 6 Other: 0 Raise awareess: 19 Doate blood: 2 Raise fuds: 6 Patiet educatio: 15 Other: 2 20 Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop Report

29 September 3, 2009 Welcome, Day 2 W. Keith Hoots, M.D., Director, Divisio of Blood Diseases ad Resources, Natioal Heart, Lug, ad Blood Istitute The Natioal Heart, Lug, ad Blood Istitute (NHLBI) is committed to advacig sickle cell disease (SCD) awareess ad educatio efforts ad programmig. The Istitute recogizes that a broad eed exists for SCD research basic, traslatioal, cliical, ad comparative to examie ad compare specific therapies for efficacy ad cost. To meet this eed, the NHLBI works with Federal parters to advace kowledge about surveillace ad research priorities. Additioally, the NHLBI aims to ivoke support, egeder research, ad foster career-log traiig of the ext geeratio of hematologists ad other specialists i blood diseases. The NHLBI research ageda is global, as members of the SCD populatio are truly citizes of the world. The NHLBI s Divisio of Blood Diseases ad Resources (DBDR) supports research o the causes, prevetio, ad treatmet of omaligat blood diseases, icludig aemias, SCD, ad thalassemias; premaligat processes such as myelodysplasia ad myeloproliferative disorders; hemophilia ad other abormalities of hemostasis ad thrombosis; ad immue dysfuctio. The DBDR fuds research that rages i scope from basic biology to medical maagemet of blood diseases. Research ad traiig programs o SCD are part of the Blood Diseases Brach, led by actig brach chief Dr. Harvey Lukseburg. Uder the guidace of the Blood Diseases Brach, research o SCD covers a rage of areas, from examiig etiology ad pathophysiology to improvig disease treatmet ad maagemet. Areas of emphasis iclude geomic evaluatio of hemoglobiopathies, developmet of aimal models of disease, regulatio of hemoglobi sythesis, iro chelatio, developmet of drugs to icrease fetal hemoglobi productio, hematopoietic trasplatatio, ad gee therapy. The NHLBI s SCD research icludes basic through phase III cliical trials. Ogoig research icludes a study o hydroxyurea for the treatmet of SCD i childre (SWITCH). Upcomig trials iclude Trascraial Doppler Velocities With Trasfusio Chagig to Hydroxyurea (TWiTCH), a phase III cliical trial of a ovel therapy to reduce the risk of stroke ad prevet iro overload i childre who have sickle cell aemia. The Istitute curretly is workig o ew strategies for lauchig SCD cliical trials. SCD cliical trials require commitmets from the commuity for studyig this rare but importat disease. Additioally, the NHLBI DBDR ad the Ceters for Disease Cotrol ad Prevetio are workig together to improve the ability to idetify ad register with permissio every perso i the Uited States who has a hemoglobiopathy, to determie where to best focus research ad educatio efforts. The NHLBI also is developig guidelies for medical professioals treatig people who have SCD, which, i cojuctio with a atioal hemoglobiopathy registry, will lead to better quality of life, better care, ad easier access to care for people who have SCD atiowide. Public Health Outreach ad Sickle Cell Disease Programmig at the Ceters for Disease Cotrol ad Prevetio ad the Health Resources ad Services Admiistratio Hai Atrash, M.D., M.P.H., Director, Divisio of Blood Disorders, Ceters for Disease Cotrol ad Prevetio The Ceters for Disease Cotrol ad Prevetio s (CDC s) missio is to oversee the health of the Natio s populatio. Public health plays a major role i welless ad surveillace research, which is accomplished i collaboratio with State ad local health departmets across the coutry. As represeted i Healthy People 2010 (a framework for atioal health objectives developed Workshop Presetatio Summaries 21

30 by the U.S. Departmet of Health ad Huma Services), some criteria for weighig the importace of a health issue iclude prevalece, severity, mortality, commuity cocer, lost productivity, premature mortality, medical cost to treat, feasibility to prevet, ad disparities. These issues are all relevat to sickle cell disease (SCD). Joural publicatios have show a cosiderable icrease i attetio to SCD i recet years, particularly i coverig morbidity, mortality, ad costs associated with the disease. Util recetly, the approach to SCD has bee isolated ad sporadic. However, atioal ad iteratioal efforts have emerged to coordiate activities ad establish comprehesive programs, icludig a umber of iteratioal cofereces addressig SCD. I Europe, iterest i SCD has begu to overtake other familiar geetic diseases, such as hemophilia ad cystic fibrosis. Iteratioally, coordiated efforts are uder way to desig ad implemet equitable ad systematized programs coverig educatio ad awareess, surveillace, treatmet, couselig, ad screeig. These efforts also aim to support appropriate provider traiig ad research. I the Uited States, ew efforts also are uder way or have occurred, icludig a Health Resources ad Services Admiistratio (HRSA) grat to States to improve SCD screeig programs for ewbors, the Natioal Heart, Lug, ad Blood Istitute s (NHLBI s) 2006 workshop to develop health objectives for people who have SCD, ad a America Society of Pediatric Hematology/Ocology 1997 summit o SCD to support a visio of a adequately fuded, coordiated, comprehesive, ad itegrated atioal model for care of persos with SCD. 9 The CDC supports a approach to SCD that is comprehesive, orgaized, coordiated, istitutioalized, ad sustaiable. May other Federal I the area of sickle cell disease, the CDC s goals are to: Speak with a uified voice represetig all costituecies. Optimize access to care from kowledgeable health care providers ad create a medical home for everyoe who has the disease. Utilize populatio-based surveillace to measure outcomes. Develop overall approaches to basic, traslatioal, cliical, ad health services research. Esure the commuity s role i advocacy, educatio, service, ad fudraisig. Agecies are workig with the CDC o blood disorder services, icludig the Natioal Istitutes of Health (NIH), the HRSA, the Agecy for Healthcare Research ad Quality, ad the U.S. Food ad Drug Admiistratio. Over the years, the CDC s activities related to SCD have icluded the establishmet (with NIH support) of a hemoglobiopathy laboratory i 1972, 19 screeig ad educatio cliics, ad a atioal referece laboratory for SCD. The CDC also has developed umerous publicatios usig atioal ad State data from the Natioal Hemoglobiopathy Stadardizatio Laboratory. Today, the CDC s activities iclude a umber of iterally coordiated efforts related to epidemiology, surveillace, ad health research services; behavioral scieces ad health educatio; awareess (both iterally ad publicly through the Morbidity ad Mortality Weekly Report, joural publicatios, ad the CDC.gov Web site); ad iformatio sharig ad dissemiatio (through joural publicatios ad coferece presetatios). The CDC is workig to stregthe its partership activities with Federal Agecies, State health departmets, ad commuity-based 9 America Society of Pediatric Hematology/Ocology. (2007). Sickle cell disease summit: From cliical ad research disparity to actio. Proceedigs of the America Society of Pediatric Hematology/Ocology. Retrieved from Summit_full_proceedigs.pdf 22 Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop Report

31 orgaizatios. I additio, the CDC is establishig a multifaceted SCD program. The NHLBI is fudig a iteragecy agree met with the CDC to coduct the registry ad surveillace system for hemoglobiopathies (RuSH). RuSH is a pilot program to develop a ifrastructure for a hemoglobiopathies registry ad surveillace system ad to im prove iformatio-sharig capabilities amog the States. The CDC will issue cooperative agreemets to selected States that will coordiate the collectio ad sharig of iformatio about residets who have SCD ad thalassemia. The agreemets will be fialized very early i R. Lorraie Brow, R.N., Public Health Aalyst, Health Resources ad Services Admiistratio The HRSA is the Natio s access agecy. Its role is to improve health ad save lives by esurig that the right services are available i the right places at the right time. The HRSA supports the Natioal Hemophilia Program, the Thalassemia Comprehesive Care projects, ad the Sickle Cell Disease ad Newbor Screeig Program as models of comprehesive care for delivery of geetic services, testig, couselig, educatio, ad coordiated systems of services across the lifespa. The SCD program is part of the Materal ad Child Health Bureau s Divisio of Services for Childre With Special Health Needs. The program focuses o family ad professioal parterships; the cocept of coordiated, ogoig, comprehesive care withi a medical home; isurace; early ad cotiuous screeig; itegrated commuitybased services; ad trasitio to adult life. The HRSA s Newbor Screeig Program was started i 2002 with 15 States to ehace followup of State screeig programs. The program is i the fourth roud of fudig gratees, with six origial gratees i place throughout the 7 years of fudig. The HRSA curretly has 17 gratees focusig o ewbor screeig followup for SCD ad sickle cell trait ad is addressig outreach to emergig populatios. The HRSA-fuded pilot efforts have idetified several problem areas: lack of paretal ad provider educatio, little or o followup after screeig, ad miimal documetatio about followup. The Natioal Coordiatig ad Evaluatio Ceter for the Sickle Cell Disease ad Newbor Screeig Program, based i North Carolia ad fuded by the Sickle Cell Disease Associatio of America, is supportig the implemetatio of commuitybased projects for SCD ad ewbor screeig. This effort is desiged to educate parets ad families; stregthe parterships; improve followup activities for ewbors who have SCD or sickle cell trait; develop educatioal materials i Eglish ad Spaish for the etire SCD commuity; ad address the eeds of emergig populatios. The HRSA also fuds SCD treatmet demostratio programs to icrease the capacity ad capability of eligible ambulatory health care delivery etities that coordiate service delivery, geetic couselig, ad testig. These demostratio programs also trai health care providers i the care of people who have SCD or sickle cell trait. Four etworks are i their fial year of fudig i urba, suburba, rural, ad uiversity settigs. The programs accomplishmets to date iclude: Participatig i a learig collaborative. Completig the Medical Home Idex (MHI) tool for etworks, ad developmet of priorities based o the MHI assessmet. Erollig people i the program etwork, represetig a spectrum of ages. Likig SCD patiets to a medical home. Pilotig a care-card idetificatio system. Draftig a algorithm flowchart for pediatric ad adult care. Establishig stadards of care for adults. Developig ad testig two formats of a comprehesive care coordiatio tool. Workshop Presetatio Summaries 23

32 New legislatio, the Newbor Screeig Saves Lives Act of 2007, was established uder Title XXVI of the Childre s Health Act of 2000, Screeig for Heritable Disorders. This law reauthorized ad expaded the role of the Advisory Committee o Heritable Disorders i Newbors ad Childre, ad also expaded ewbor screeig though a grats program. The HRSA curretly is i the process of hirig staff, some of whom will coduct SCD educatio ad outreach. The program will iclude a iteragecy coordiatig committee, research o ewbor screeig techologies, maagemet of the disease detected through screeig, a Iteret-based clearighouse of iformatio for heritable disorders maaged by the HRSA, ad laboratory quality ad surveillace maaged by the CDC. The HRSA also fuds the Natioal Newbor Screeig ad Geetics Resource Ceter ad a umber of additioal educatio ad support resources for families affected by SCD. 24 Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop Report

33 Recommedatios for a Sickle Cell Disease Awareess ad Educatio Campaig Durig the 2-day workshop, participats represetig may professioal ad advocacy orgaizatios, patiets, ad family members worked i small group sessios. The charge to the small workgroups was to cosider ad report to the Natioal Heart, Lug, ad Blood Istitute (NHLBI) their priority recommedatios for developig a atioal sickle cell disease (SCD) awareess ad educatio campaig. Participats ethusiastically embraced their charge, discussig campaig target audieces, messages, implemetatio strategies, ad potetial parters. Usig a cosesus-buildig process, the workshop moderator guided the participats i arrowig their target audiece recommedatios to three broad groups: Health care providers Patiets who have SCD ad their families The geeral public Workshop participats developed broad overall recommedatios for a atioal SCD campaig. These icluded: Educate primary care providers about SCD maagemet for patiets of all ages. Raise awareess amog targeted segmets of the geeral public about SCD ad sickle cell trait ad its implicatios. Ecourage people who have SCD or sickle cell trait to become empowered about their health ad seek appropriate medical care. Participats evisioed a multiyear, multiproged effort with a scope that is atioal, regioal, ad commuity based. They also recommeded workig with well-kow atioal etertaimet, professioal, ad sports-related parter orgaizatios to help educate the public, ifluece the health behaviors of people affected by SCD, ad ecourage health care providers to use the NHLBI s upcomig SCD guidelies. Discussios were productive ad detailed, producig a large umber of recommedatios. I the small groups, participats idetified may subsets withi the recommeded broad target audieces ad geerated a variety of ideas for campaig messages ad implemetatio strategies. Participats strogly advocated for their recommedatios, particularly the critical eed to reach all three proposed target groups. However, participats did ot reach a cosesus whe asked to prioritize the target audieces or the potetial campaig messages ad parters. The workshop participats overall recommedatios were as follows: Target audieces. Broad target audiece categories ad specific subsets icluded: Health care providers ad allied health care professioals, such as primary care physicias, emergecy physicias, pulmoary specialists, emergecy room ad emergecy services persoel, urses, urse practitioers, physicia assistats, behavioral practitioers, medical studets, social workers, ad others who regularly iteract with people who have SCD. Workshop Presetatio Summaries 25

34 The geeral public, divided ito subsets that iclude differet age groups, ethicities, ad races, icludig those who have sickle cell trait. Affected populatios people who have SCD ad their families. Campaig messages. For all audieces, participats suggested messages that dispel the myth that SCD oly affects Africa Americas ad the social stigma SCD may carry. Participats recommeded researchbased messages that are tailored to each audiece ad subgroup. Messages directed at health care providers should urge them to adopt ew stadards of medical care for SCD maagemet over the lifespa. Messages directed at the public should urge awareess of SCD ad sickle cell trait. Messages for affected populatios should ecourage awareess about seekig improved medical care ad quality of life. Implemetatio strategies. Participats recommeded a rage of health commuicatio ad educatio strategies. For health care providers, strategies icluded developig ad dissemiatig medical stadards of care for SCD, educatioal toolkits, various prit items (e.g., referece cards), ad electroic tools (e.g., DVDs ad podcasts). Participats also recommeded that health care providers take advatage of cotiuig educatio programmig o SCD. For the geeral public ad patiets, participats recommeded procurig a atioally recogized spokesperso to deliver campaig messages. They also recommeded usig prit, electroic, ad Web-based media, as well as iformatio/presetatios appropriate for Black Family Reuios ad other suitable atioal ad local evets. Parterships. Parterships will be key to successful SCD outreach efforts. For health care providers, potetial parters iclude professioal orgaizatios ad societies, schools of medicie ad public health, ad accreditatio ad licesig orgaizatios. For the geeral public ad affected populatios, potetial parters iclude Federal, State, ad local govermet agecies; voluteer orgaizatios; commuity-based, sports, ad etertaimet orgaizatios; ad the media. Workshop participats emphasized the importace of establishig outcome measuremets to determie program effectiveess. I coclusio, workshop participats provided the NHLBI with a geeral framework for devel opig a SCD awareess ad educatio campaig. This framework represets their various perspectives, backgrouds, ad experieces with SCD. As the NHLBI begis to develop ad implemet the campaig, the participats recommedatios will serve as a startig poit for idetifyig ad addressig the may umet eeds of the SCD commuity. For more detailed iformatio about the participats recommedatios, see exhibit 5. Movig Forward Next Steps: Where Do We Go From Here? W. Keith Hoots, M.D., Director, Divisio of Blood Diseases ad Resources, Natioal Heart, Lug, ad Blood Istitute The Natioal Heart, Lug, ad Blood Istitute (NHLBI) has successfully developed ad implemeted other atioal awareess ad educatio campaigs, ad will draw o its breadth of experiece i developig ew educatio ad awareess strategies for sickle cell disease (SCD). As a critical first step i strategy developmet, this workshop has yielded may valuable perspectives ad recommedatios from the people most affected by SCD people who have SCD ad their families, other caregivers, ad health care providers. A writte report summarizig the workshop proceedigs ad the recommedatios geerated will be prepared ad distributed to workshop participats ad NHLBI leadership. NHLBI staff from the Office of the Director, Divisio of Blood 26 Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop Report

35 Diseases ad Resources (DBDR), Divisio for the Applicatio of Research Discoveries (DARD), ad Office of Commuicatios will carefully review all of the workshop recommedatios. The NHLBI Office of Commuicatios will take the lead i developig the Istitute s SCD atioal campaig, ad the DBDR will support the campaig developmet efforts. The campaig developmet team will work closely with the DARD, whose staff are curretly developig the NHLBI s SCD guidelies. The NHLBI will solicit proposals from experieced orgaizatios ad award a cotract for developmet ad lauch of the SCD awareess ad educatio campaig. The cotractor will work closely with NHLBI staff ad use the workshop report as a key resource for developig a strategic campaig pla. The ew SCD campaig also will ecompass the Healthy People 2020 objectives, icludig the elimiatio of health disparities. The NHLBI expects to udertake a umber of SCD-related activities i additio to support of campaig efforts, icludig the RuSH program ad several ew cliical trials. A major challege is to trai ohematologists i the patiet care ecessary for cliical trials. The Istitute will address such challeges ad work o strategies to improve participatio ad retetio i these trials. The Istitute also will work to improve the fudig of basic sciece grats pertaiig to SCD. Future research possibilities iclude both embryoic hematopoietic stem cell ad iduced pluripotet stem cell studies for possible use i trasplatatio research for treatig hemoglobiopathies. The NHLBI expects to assemble a group of Federal parters who will make a cocerted effort to develop parallel SCD activities ad programmig to coicide with the campaig lauch. The NHLBI will build o ad exted its existig parterships for this effort ad commits to keepig the SCD commuity iformed about progress. Workshop Presetatio Summaries 27

36 Exhibit 5. Workgroup Recommedatios Target Audieces Messages Implemetatio Strategies Potetial Parters Health Care Providers ad Allied Health Care Professioals Primary care physicias Emergecy physicias Pulmoary specialists Emergecy room ad emergecy services persoel Nurses, urse practitioers, ad physicia assistats Behavioral practitioers, medical studets, ad social workers Others who regularly iteract with people who have SCD SCD has may faces, ot all of which are Africa America. The disease also affects Hispaics, Caucasias, ad other populatios, icludig those from South ad Cetral America, Caribbea islads, Mediterraea coutries, ad Saudi Arabia. People who have SCD ca ow live log ad productive lives. The NHLBI is developig ew SCD guidelies for the care of people who have SCD across their lifespa. SCD patiets who are i trasitio from childhood through adolescece ito adulthood have crosscuttig medical ad psychosocial eeds. Medical home cocepts ca be effective ad efficiet i providig specialty care i oe settig for SCD patiets. Treatig acute SCD-related icidets to prevet complicatios is differet from maitaiig patiet health over a lifetime. SCD patiets presetig at emergecy settigs are ot drug seekers; they eed appropriate medical attetio, as addressed i the NHLBI s forthcomig SCD guidelies. Develop ad dissemiate ew NHLBI SCD guidelies. Develop SCD educatio materials for medical schools, residecy programs, ad schools of public health. Develop ad dissemiate comprehesive, multicompoet, professioal educatio toolkits. Create electroic fact sheets, physicia referece cards, ad other appropriate materials. Create opportuities for cotiuig medical educatio credit ad uits, board certificatio, ad accreditatio for medical ad allied health care professioals. Build a strog partership etwork to help iform the campaig ad dissemiate messages ad materials. Elist parter support for eeded policy chages. Appropriate Federal Govermet ad military orgaizatios Schools of medicie ad public health State ad local health departmets Professioal associatios ad societies Accreditatio ad licesig orgaizatios Local hospitals ad medical ceters Africa America ad Latio health orgaizatios Blood suppliers ad blood baks Medical suppliers Foudatios 28 Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop Report

37 Exhibit 5. Workgroup Recommedatios (cotiued) Target Audieces Messages Implemetatio Strategies Potetial Parters Geeral Public The geeral populatio, icludig those who have sickle cell trait Miority populatios Emergig populatios Differet groups of all ages The public should be iformed about SCD. It is importat for people to kow their carrier status (i.e., whether they have sickle cell trait) ad realize its implicatios. SCD has may faces, ot all of which are Africa America. People who have SCD ca lead log ad productive lives. The public should take this actio step to lear more (actio step to be decided). People should feel empowered to take charge of their ow health. Elist a atioally recogized spokesperso to deliver campaig messages about SCD. Cosider issuig a ew postage stamp to promote SCD awareess. Elist parter orgaizatios (corporatios, busiesses, local govermets, commuity-based orgaizatios) to promote awareess ad place educatioal iformatio o rage of products (billboards, buses, shoppig carts, movie scree advertisemets, etc.) Use prit, electroic, ad Web-based media to help dissemiate messages to targeted audieces. Make SCD iformatio available at Black Family Reuios, cocerts, local busiesses, ad other cultural evets. Elist miority-orieted parter orgaizatios to assist i awareess ad educatio efforts. Appropriate Federal Govermet orgaizatios Appropriate local govermet orgaizatios, icludig health departmets, schools, libraries, etc. Natioal voluteer ad oprofit orgaizatios focusig o SCD Natioal orgaizatios, especially those that have miority members or those seekig to icrease their miority membership Historically Black colleges ad uiversities Commuity-based groups, icludig health-based, civic, social, oprofit, faith-based, educatio, ad busiess orgaizatios (for example, barber shops, pharmacies, grocery stores, isurace compaies, child care, ad other health-related busiess orgaizatios) Hold a aual atioal SCD awareess day ad promote related activities at local health fairs, church evets, ad other commuity gatherigs Natioal sports orgaizatios Corporatios, icludig those with a miority focus Foudatios The Ad Coucil Media (prit, electroic, Web-based, social marketig, etc.) Workshop Presetatio Summaries 29

38 Exhibit 5. Workgroup Recommedatios (cotiued) Target Audieces Messages Implemetatio Strategies Potetial Parters Affected Populatios People who have SCD Families of people who have SCD People who have sickle cell trait Emergig populatios People should feel empowered to take charge of their ow health. It is importat for people who have SCD to work with health care providers who uderstad the disease. People who are affected by SCD should igore myths about the disease. People who have SCD ca lead log ad productive lives. No stigma should be attached to havig SCD or sickle cell trait. People who have sickle cell trait should take this actio step (actio step to be determied). Build a strog atioal partership etwork with ties to local, commuitybased, grassroots orgaizatios with the potetial to reach affected populatios. Create advocacy toolkits for oprofit orgaizatios. Create mechaisms for facilitatig peer-to-peer educatio ad couselig. Create educatioal products for prit, DVD, podcast, ad Web placemet. Provide regular updates for the SCD commuity o the progress of the NHLBI campaig. Commuity-based orgaizatios with existig or potetial iterest i SCD, such as civic, social, educatioal, faith-based, health-related groups, etc. Patiet groups Natioal, State, local, ad other health associatios ad societies Local medical orgaizatios, cliics, hospitals, ad physicia group practices Blood suppliers ad blood baks Local orgaizatios workig with miorities Miority-owed busiesses Natioal, regioal, ad commuity sports orgaizatios Media, such as Web-based social etworkig sites 30 Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop Report

39 Appedixes: Workshop Ageda ad Participat List

40

41 Appedix A: Workshop Ageda Natioal Heart, Lug, ad Blood Istitute Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop September 2 3, 2009 September 2, :00 8:30 a.m.: Registratio 8:30 8:45 a.m.: Welcome ad Itroductio Elizabeth G. Nabel, M.D. Director, Natioal Heart, Lug, ad Blood Istitute 8:45 9:25 a.m.: Opeig Sessio: A Call for Actio Laetta Jorda, M.D., M.P.H., M.S.P.H. Sickle Cell Disease Associatio of America 9:25 9:35 a.m.: Settig the Stage: Why We Are Here? Workshop Goals ad Objectives Workshop Moderator: Lisa Ross 9:35 9:50 a.m.: Break 9:50 11:20 a.m.: Talk Show: View Poits i Sickle Cell Disease Moderator: Paul Berry Paelists: Michael McCoy, Father ad Care Provider Tiffay McCoy, Patiet Stephaie Davis, M.D., Primary Care Physicia Kathry Hassell, M.D., Hematologist J. Hoxi Joes, Patiet Joseph Wright, M.D., M.P.H., Emergecy Room Physicia 11:20 11:50 a.m.: Opportuities ad Challeges for Sickle Cell Disease Awareess i the Uited States Carlto Haywood, Jr., Ph.D., M.A., Johs Hopkis Uiversity 11:50 12:05 p.m.: Luch Appedix A: Workshop Ageda 33

42 12:05 1:05 p.m.: Campaig 101: Keys to Success Moderator: Paul Berry Paelists: A Taubeheim, Ph.D., M.S.N., NHLBI Amy Piaalto, NHLBI Sue Shero, R.N., M.S., NHLBI Jaice Bowie, Ph.D., M.P.H., Johs Hopkis Bloomberg School of Public Health 1:05 1:20 p.m.: Overview of the Results of a Evirometal Sca o Existig Sickle Cell Disease Campaigs ad Major Educatio Efforts Edward Doell Ivy, M.D., M.P.H., NHLBI 1:20 1:30 p.m.: Breakout Group Istructios Lisa Ross 1:30 2:15 p.m.: Small Group Sessio #1: Idetify Key Target Audiece(s) for the Campaig 2:15 2:30 p.m.: Break 2:30 3:30 p.m.: Small Group Reports: Sessio #1 Moderator: Lisa Ross 3:30 3:35 p.m.: Breakout Group Istructios Lisa Ross 3:35 4:35 p.m.: Small Group Sessio #2: Key Campaig Messages for the Target Audiece(s) 4:35 5:20 p.m.: Small Group Reports: Sessio #2 Moderator: Lisa Ross 5:20 5:30 p.m.: Day Oe Wrap-up 34 Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop Report

43 September 3, :30 8:45 a.m.: Welcome W. Keith Hoots, M.D. Director, Divisio of Blood Diseases ad Resources, NHLBI 8:45 9:20 a.m.: Public Health Outreach ad Sickle Cell Disease Programmig at the Ceters for Disease Cotrol ad Prevetio ad Health Resources ad Services Admiistratio Hai Atrash, M.D., M.P.H., Ceters for Disease Cotrol ad Prevetio R. Lorraie Brow, R.N., Health Resources ad Services Admiistratio 9:20 9:30 a.m.: Breakout Group Istructios Lisa Ross 9:30 10:30 a.m.: Small Group Sessio #3: Recommedatios for Natioal Campaig Strategies, Commuity Settigs, ad Chaels for Deliverig Messages 10:30 10:45 a.m.: Break 10:45 11:45 a.m.: Small Group Reports: Sessio #3 Moderator: Lisa Ross 11:45 12:30 p.m.: Luch 12:30 12:40 p.m.: Breakout Group Istructios Lisa Ross 12:40 1:40 p.m.: Small Group Sessio #4: Idetifyig Potetial Parters To Work With the NHLBI i Implemetig ad Evaluatig the Campaig 1:40 2:40 p.m.: Small Group Reports: Sessio #4 Moderator: Lisa Ross 2:40 3:00 p.m.: Summary ad Closig: Where Do We Go From Here? W. Keith Hoots, M.D. Lisa Ross 3:00 p.m.: Adjour Appedix A: Workshop Ageda 35

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45 Appedix B: Workshop Participats Natioal Heart, Lug, ad Blood Istitute Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop September 2 3, 2009 Speakers, Moderators, ad Facilitators Hai Atrash, M.D., M.P.H. Director, Divisio of Blood Disorders Ceters for Disease Cotrol ad Prevetio 1600 Clifto Road, N.E., E-68 Atlata, GA [email protected] Phoe: Paul Berry Paul L. Berry & Associates 9920 Eagle Drive Easto, MD [email protected] Phoe: Jaice Bowie, Ph.D., M.P.H. Associate Professor Johs Hopkis Bloomberg School of Public Health 624 North Broadway Baltimore, MD [email protected] Phoe: Fax: R. Lorraie Brow, R.N. Public Health Aalyst Health Resources ad Services Admiistratio 5600 Fishers Lae Rockville, MD [email protected] Phoe: Stephaie Davis, M.D. Assistat Professor/Attedig Physicia Departmet of Family ad Commuity Medicie Uiversity of Marylad School of Medicie 29 South Paca Street Lower Level Baltimore, MD [email protected] Phoe: Fax: Kathry Hassell, M.D. Director Colorado Sickle Cell Treatmet ad Research Ceter East 17th Aveue P.O. Box 6511 Aurora, CO [email protected] Phoe: Fax: Carlto Haywood, Jr., Ph.D., M.A. Assistat Professor of Medicie; Associate Faculty i Bioethics Johs Hopkis Uiversity 624 North Broadway Hampto House, Room 355 Baltimore, MD [email protected] Phoe: Fax: Appedix B: Workshop Participats 37

46 W. Keith Hoots, M.D. Director, Divisio of Blood Diseases ad Resources Natioal Heart, Lug, ad Blood Istitute 6701 Rockledge Drive Room 9136 Bethesda, MD Phoe: Fax: Edward Doell Ivy, M.D., M.P.H. Medical Officer, Divisio for the Applicatio of Research Discoveries Natioal Heart, Lug, ad Blood Istitute 31 Ceter Drive, MSC 2480 Buildig 31, Room 4A-10 Bethesda, MD Phoe: J. Hoxi Joes Cosumer Advocate Sickle Cell Commuity 9703 Willow Street Housto, TX Phoe: Laetta Jorda, M.D., M.P.H., M.S.P.H. Director, Sickle Cell Services ad Chief Medical Officer Memorial Healthcare System/South Broward Hospital District Sickle Cell Disease Associatio of America 3501 Johso Street Hollywood, FL Phoe: Fax: Michael McCoy Welshire Drive Upper Marlboro, MD Phoe: Tiffay McCoy Welshire Drive Upper Marlboro, MD Phoe: Elizabeth G. Nabel, M.D. Director Natioal Heart, Lug, ad Blood Istitute 31 Ceter Drive Buildig 31A, Room 5A48 Bethesda, MD Phoe: Fax: Amy Piaalto Project Director, Office of Commuicatios Natioal Heart, Lug, ad Blood Istitute 31 Ceter Drive Buildig 31A, Room 4A10 Bethesda, MD Phoe: Fax: Gladys Robiso, Ph.D. Executive Director Piedmot Health Services ad Sickle Cell Agecy P.O. Box Greesboro, NC Phoe: , ext. 102 Fax: Lisa Ross Executive Vice Presidet Director, Specialized Commuicatios Ogilvy Public Relatios th Street, N.W., 10th Floor Washigto, DC Phoe: Sue Shero, R.N., M.S. Public Health Advisor, Divisio for the Applicatio of Research Discoveries Natioal Heart, Lug, ad Blood Istitute 31 Ceter Drive, MSC 2480 Bethesda, MD Phoe: Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop Report

47 A Taubeheim, Ph.D., M.S.N. Health Campaigs ad Cosumer Services Brach Chief, Office of Commuicatios Natioal Heart, Lug, ad Blood Istitute 31 Ceter Drive Buildig 31A, Room 4A31 Bethesda, MD Phoe: Joseph Telfair, Dr.P.H., M.S.W., M.P.H. Professor Uiversity of North Carolia at Greesboro 1408 Walker Aveue 437 HHP Greesboro, NC Phoe: Fax: Joseph Wright, M.D., M.P.H. Seior Vice Presidet, Child Health Advocacy The Child Health Advocacy Istitute, Childre s Natioal Medical Ceter 111 Michiga Aveue, N.W. Washigto, DC [email protected] Phoe: Participats Efa Ahmed-Williams, M.A. Director The Sickle Cell Orgaizatio 415 East 33rd Street Baltimore, MD [email protected] Phoe: Keeth Ataga, M.D. Associate Professor of Medicie Divisio of Hematology/Ocology Uiversity of North Carolia at Chapel Hill School of Medicie Physicias Office Buildig, 3rd Floor, CB# Maig Drive Chapel Hill, NC [email protected] Phoe: Fax: Bau Aygu, M.D. Assistat Member St. Jude Childre s Research Hospital 262 Day Thomas Place, MS 800 Memphis, TN [email protected] Phoe: Fax: Shaw Bediako, Ph.D. Assistat Professor Uiversity of Marylad, Baltimore Couty 1000 Hilltop Circle Baltimore, MD [email protected] Phoe: Fax: Doria Bekoe Seior Research Associate (Africa) U.S. Istitute of Peace 3228 Theodore R. Hagas Drive Washigto, DC [email protected] Phoe: Wedy Berry-West, M.B.A. Executive Director Ohio Sickle Cell ad Health Associatio 380 South 5th Street Suite G-3 Columbus, OH [email protected] Phoe: Fax: Appedix B: Workshop Participats 39

48 Wada Borders Social Services Coordiator Cetral Alabama Sickle Cell Disease Associatio of America 3813 Aveue I Birmigham, AL [email protected] Phoe: Fax: D. Jea Braa, B.S. Presidet/Chief Operatig Officer Sickle Cell Foudatio of Georgia 2391 Bejami E. Mays Drive, S.W. Atlata, GA [email protected] Phoe: , ext. 201 Fax: Gwedoly Brow Health Educator Uiversity of Ciciati, Ciciati Sickle Cell Network, Geeral Iteral Medicie 231 Albert Sabi Way Ciciati, OH [email protected] Phoe: Mary E. Brow, B.A. Presidet ad Chief Executive Officer Sickle Cell Disease Foudatio of Califoria 6133 Bristol Parkway Suite 240 Culver City, CA [email protected] Phoe: , ext. 15 Fax: Lorri Burgess Executive Director Bato Rouge Sickle Cell Aemia Foudatio 2301 North Boulevard Bato Rouge, LA [email protected] Phoe: Fax: Yvoe Carroll, R.N., J.D. Director, Patiet Services St. Jude Childre s Research Hospital 262 Day Thomas Place, MS 800 Memphis, TN [email protected] Phoe: Fax: Jim Collier Executive Director Sickle Cell Disease Associatio of America Kasas City Chapter 1734 East 63rd Street Suite 600 E Kasas City, MO [email protected] Phoe: Fax: Lori Crosby, Psy.D. Associate Professor of Pediatrics Ciciati Childre s Hospital Medical Ceter 3333 Buret Aveue, MLC 3015 Ciciati, OH [email protected] Phoe: Fax: Mady David PA-C/Program Maager Johs Hopkis Uiversity 600 North Wolfe Street Caregie Buildig 136 Baltimore, MD [email protected] Phoe: DeLisa Dawkis, B.H.S., C.L.S. Cosultat 206 Fairview Lake Way Simpsoville, SC [email protected] Phoe: Violet Dease Assistat Pastor Abyssiia Baptist Church 132 Odell Clark Place New York, NY [email protected] Phoe: , ext. 216 David Deere, M.S.W., M.Th. Agecy Director Uiversity of Arkasas for Medical Scieces 2001 Pershig Circle Suite 300 North Little Rock, AR [email protected] Phoe: Fax: Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop Report

49 Lida Drawhor, M.S., R.N. Project Maager Christia Commuity Health Ceter 9718 South Halsted Chicago, IL Phoe: Domiique Fried Author/Advocate 600 North Hartley Street, #303 York, PA Phoe: Ivoe Fuller-Bertrad, N.R.P.P., M.P.A. Associate Executive Director Natioal Medical Associatio th Street, N.W. Washigto, DC Phoe: Fax: Cythia D. Gipso, B.S., M.A. Family Advocate Howard Uiversity 2647 Carver Road Gambrills, MD Phoe: Mary Jo Goolsby, Ed.D., M.S.N., N.P. Director of Research ad Educatio America Academy of Nurse Practitioers 2600 Via Fortua Suite 100 Austi, TX Phoe: Fax: Barbara Harriso, M.S. Geetic Couselor Howard Uiversity 520 West Street, N.W. P.O. Box 75 Washigto, DC Phoe: Fax: Lewis Hsu, M.D., Ph.D. Director, Sickle Cell Program Childre s Natioal Medical Ceter 111 Michiga Aveue, N.W. West Washigto, DC [email protected] Phoe: Fax: TaLaa Hughes, M.P.H. Project Director Sickle Cell Disease Foudatio of Illiois 8100 South Wester Aveue Chicago, IL [email protected] Phoe: Fax: Theopia Jackso, Ph.D. Psychologist Childre s Hospital & Research Ceter Oaklad d Street Oaklad, CA [email protected] Phoe: , ext Fax: E. Jeae Johso, M.P.H. Assistat Director Sickle Cell Ceter of Souther Louisiaa, Tulae Uiversity Health Scieces Ceter 1440 Caal Street, TB 27 New Orleas, LA [email protected] Phoe: Fax: Gwedylo Johso, B.S., M.A., R.N.C. Nurse Coordiator Natioal Black Nurses Associatio 8702 Good Luck Road Laham, MD [email protected] Phoe: Fax: Lida Joes, R.N. Presidet Sickle Cell Disease Associatio of America Alabama State Associatio P.O. Box Mobile, AL [email protected] Phoe: Fax: Appedix B: Workshop Participats 41

50 Susa K. Joes, R.N. Cliical Research Supervisor Uiversity of North Carolia Comprehesive Sickle Cell Program Third Floor, Physicias Office Buildig 170 Maig Drive, Room 3200J Chapel Hill, NC Phoe: Fax: Nee Kalu, M.S.W. Social Worker Howard Uiversity 1840 Seveth Street, N.W. Washigto, DC Phoe: Fax: Stephaie Kart Govermet Relatios Maager America Society of Hematology 1900 M Street, N.W. Suite 200 Washigto, DC [email protected] Phoe: , ext Fax: Beth Klady, M.S., C.G.C. Geetic Couselor Childre s Hospital of Pittsburgh 45th Street ad Pe Aveue Pittsburgh, PA [email protected] Phoe: Fax: Elyse Madell, A.P.R.N., B.C. Nurse Practitioer Iteratioal Associatio of Sickle Cell Nurses ad Physicia Assistats Divisio of Hematology 75 Fracis Street Bosto, MA [email protected] Phoe: Fax: Shirley Miller Advocacy Maager Sickle Cell Disease Associatio of America Hem/Oc Sickle Cell Program 1935 Medical District Drive Dallas, TX [email protected] Phoe: Fax: Claudia Morris, M.D. Cliical Research Scietist Childre s Hospital & Research Ceter Oaklad d Street Oaklad, CA [email protected] Phoe: Fax: Brigitta Mueller, M.D. Director, Texas Childre s Sickle Cell Ceter America Academy of Pediatrics 6621 Fai Street, CCC 1410 Housto, TX [email protected] Phoe: Fax: Scott Myers, M.D., M.P.H. Assistat Professor of Pediatric Hem/Oc Lombardi Cacer Ceter (Peds Hem/Oc) Georgetow Uiversity Hospital 3800 Reservoir Road, N.W. Washigto, DC [email protected] Phoe: Catherie Nwokolo, R.N. Howard Uiversity 1840 Seveth Street, N.W., Room 204 Washigto, DC [email protected] Phoe: Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop Report

51 Temilola Odesia, Pharm.D. Global Sickle Cell Alliace, Ic. P.O. Box 1851 New Britai, CT Phoe: Fax: Jaet Ohee-Frempog, M.S. Presidet J. O. Frempog & Associates 7907 Roaele Drive Elkis Park, PA Phoe: Fax: Rosie Peterso, B.S., P.A.H.M. Director, Istitutioal Diversity Iitiatives The Uiversity of Texas at Dallas 800 West Campbell Road, MP 26 Richardso, TX Phoe: Fax: Soya Ross, B.S. Cosultat Sickle Cell Disease Associatio of America P.O. Box 1827 Owigs Mills, MD Phoe: Craigie Saders 4 Autrey Mill Circle Durham, NC [email protected] Phoe: Elizabeth Simpso Iterim Presidet ad COO Sickle Cell Disease Associatio of America 231 East Baltimore Street Suite 800 Baltimore, MD [email protected] Phoe: , ext. 15 Fax: Kim Smith-Whitley, M.D. Director, Comprehesive Sickle Cell Ceter Childre s Hospital of Philadelphia CHOP Divisio of Hematology, Fourth Floor Seashore House 34th ad Civic Ceter Boulevard Philadelphia, PA whitleyk@ .chop.edu Phoe: Fax: Joh Strouse, M.D., Ph.D. Assistat Professor Johs Hopkis Uiversity 720 Rutlad Aveue Ross 1125 Baltimore, MD [email protected] Phoe: Fax: Paula Taabe, Ph.D. Research Assistat Professor Northwester Uiversity 750 North Lake Shore Drive, 10th Floor Chicago, IL [email protected] Phoe: Trevor Thompso Chief Executive Officer Diggs-Kraus Sickle Cell Ceter 6000 Poplar Memphis, TN [email protected] Phoe: Fax: Kusum Viswaatha, M.D. Vice Chair, Departmet of Pediatrics Director, Divisio of Pediatric Hematology/ Ocology Brookdale Uiversity Hospital ad Medical Ceter Suite 346 Oe Brookdale Plaza Brookly, NY [email protected] Phoe: Fax: Appedix B: Workshop Participats 43

52 Adrea Williams Executive Director Childre s Sickle Cell Foudatio, Ic. 617 Gearig Aveue Pittsburgh, PA [email protected] Phoe: Fax: Iola Williams Presidet Sickle Cell Associatio of the Natioal Capital Area P.O. Box Washigto, DC [email protected] Phoe: Marcia Wright Executive Director Sickle Cell Disease Associatio of America, Easter North Carolia Chapter P.O. Box 5253 Jacksoville, NC [email protected] Phoe: Fax: Federal Participats Beth Bowers, M.Div., M.S.W. Metal Health Aalyst Office of Miority Health 6701 Rockledge Drive Bethesda, MD [email protected] Phoe: Rob Fulwood, Ph.D., M.S.P.H. Actig Director, Divisio for the Applicatio of Research Discoveries Natioal Heart, Lug, ad Blood Istitute 31 Ceter Drive, MSC 2480 Buildig 31, Room 4A-10 Bethesda, MD [email protected] Phoe: Fax: Joatha Goldsmith, M.D. Project Officer, Divisio of Blood Diseases ad Resources Natioal Heart, Lug, ad Blood Istitute 6701 Rockledge Drive, MSC 7950 Bethesda, MD [email protected] Phoe: Liaa Harvath, Ph.D. Special Advisor to the Director, Divisio of Blood Diseases ad Resources Natioal Heart, Lug, ad Blood Istitute 6701 Rockledge Drive Rockledge II, Nith Floor Suite 9030 Bethesda, MD [email protected] Phoe: Joylee Joh-Sowah, M.D., M.P.H. Medical Officer, Divisio for the Applicatio of Research Discoveries Natioal Heart, Lug, ad Blood Istitute 31 Ceter Drive South Suite 4A10 Bethesda, MD [email protected] Phoe: Patrick McCoell Public Health Assistat, Office of Commuicatios Natioal Heart, Lug, ad Blood Istitute 31 Ceter Drive Buildig 31A, Room 4A31 Bethesda, MD [email protected] Phoe: Fax: Sickle Cell Disease Awareess ad Educatio Strategy Developmet Workshop Report

53 Susa Shuri, M.D. Deputy Director Natioal Heart, Lug, ad Blood Istitute 31 Ceter Drive Room 5A48 Bethesda, MD Phoe: Fax: Eri Smith Cliical Trials Specialist, Divisio of Blood Diseases ad Resources Natioal Heart, Lug, ad Blood Istitute 6701 Rockledge Drive Room 9149, MSC 7950 Bethesda, MD Phoe: Elle Werer, Ph.D. Program Director, Divisio of Blood Diseases ad Resources Natioal Heart, Lug, ad Blood Istitute 6701 Rockledge Drive, MSC 7950 Bethesda, MD Phoe: Terri Williams, M.S. Program Aalyst, Office of Commuicatios Natioal Heart, Lug, ad Blood Istitute 31 Ceter Drive Buildig 31, Room 4A31 Bethesda, MD Phoe: Workshop Plaig Committee Members Beth Bowers, M.Div., M.S.W. Joatha Goldsmith, M.D. Edward Doell Ivy, M.D., M.P.H. Joylee Joh-Sowah, M.D., M.P.H. Patrick McCoell A Taubeheim, Ph.D., M.S.N. Elle Werer, Ph.D. Terri Williams, M.S. America Istitutes for Research Staff Dea Fisher Commuicatio Specialist America Istitutes for Research Columbia Pike, Suite 500 Silver Sprig, MD [email protected] Phoe: Amada Westerlig Commuicatio Associate America Istitutes for Research Columbia Pike, Suite 500 Silver Sprig, MD [email protected] Phoe: Chaet Williams Coferece Specialist America Istitutes for Research Columbia Pike, Suite 500 Silver Sprig, MD [email protected] Phoe: Richard Yelle Pricipal Commuicatio Specialist America Istitutes for Research Columbia Pike, Suite 500 Silver Sprig, MD [email protected] Phoe: Appedix B: Workshop Participats 45

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55 D ISCRIMINATION PROHIBITED: Uder provisios of applicable public laws eacted by Cogress sice 1964, o perso i the Uited States shall, o the grouds of race, color, atioal origi, hadicap, or age, be excluded from participatio i, be deied the beefits of, or be subjected to discrimiatio uder ay program or activity (or, o the basis of sex, with respect to ay educatio program ad activity) receivig Federal fiacial assistace. I additio, Executive Order prohibits discrimiatio o the basis of age by cotractors ad subcotractors i the performace of Federal cotracts, ad Executive Order States that o federally fuded cotractor may discrimiate agaist ay employee or applicat for employmet because of race, color, religio, sex, or atioal origi. Therefore, the Natioal Heart, Lug, ad Blood Istitute must be operated i compliace with these laws ad Executive Orders.

56 For More Iformatio NHLBI Health Iformatio Ceter P.O. Box Bethesda, MD Phoe: TTY: Fax: Publicatio No N Admiistrative Use Oly April 2010