National Action Plan for Bone Health: Recommendations from the Summit for a National Action Plan for Bone Health

Transcription

1 Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health Natioal Coalitio for Osteoporosis ad Related Boe Diseases Draft Report

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3 Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health Natioal Coalitio for Osteoporosis ad Related Boe Diseases

4 Preface I Jue 2008, more tha 150 idividuals represetig a array of stakeholders cocered about boe health met i Washigto, DC, to develop a actio pla ad ageda to advace boe health promotio ad disease prevetio. The Natioal Coalitio for Osteoporosis ad Related Boe Diseases, which icludes the America Society for Boe ad Mieral Research, Natioal Osteoporosis Foudatio, Osteogeesis Imperfecta Foudatio, ad the Paget Foudatio, coveed the meetig. Meetig participats built o the fidigs ad recommedatios of the 2004 Surgeo Geeral s Report o Boe Health ad Osteoporosis ad o lessos leared from the developmet ad implemetatio of the Europea Actio Pla for Osteoporosis. Participats also discussed curret boe health activities ad iitiatives ad they cosidered the latest scietific advaces, policy cocers ad fidigs regardig boe health awareess, educatio ad practice. The discussios geerated umerous cocers, ideas, ad suggestios, which participats used to devise recommeded steps for advacig boe health i our atio. This Natioal Actio Pla for Boe Health is a direct result of their work ad is a testamet to the widespread commitmet to makig the issues ad importace of boe health a atioal health priority. ii Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health

5 1 Backgroud The Importace of Boe Health Boe plays a importat structural role i the body. It provides mobility, support, ad protectio for the body, ad acts as a storehouse for essetial mierals. Boe is ot static, eve i fully grow adults. Istead, it is a livig orga that goes through a process of removal ad replacemet throughout life: most of the adult skeleto is replaced about every 10 years. 1 Healthy boes are critical to overall health, ad behaviors that promote health ad disease prevetio also are key to maitaiig a strog ad healthy skeleto. These behaviors iclude, for example, gettig regular exercise, eatig a balaced diet, ot smokig, prevetig falls ad ijuries, ad drikig alcohol oly i moderatio. Promotig boe health is importat i helpig to stem the rate ad risk of osteoporosis, the most commo boe disease, which curretly afflicts 10 millio Americas over the age of Osteoporosis is characterized by a loss of boe mass, resultig i greater boe fragility, which icreases the risk of boe breakage, also kow as fracture. The fractures most commoly associated with osteoporosis occur i the hip or spie, ad ofte result i a dowward spiral i physical ad metal health, which ca greatly impair quality of life ad ca result i death. Ideed, 20 percet of older adults who suffer a hip fracture die withi 1 year. 3 Although osteoporosis typically maifests itself later i life, the roots of the disease may stretch back to early childhood ad reflect a lifetime of risks ad behaviors. Peak boe growth ad developmet occur i ifacy ad tee years. Peak boe mass is typically obtaied by the late tweties ad begis to declie after age 35. Thus, behaviors to promote boe health ad reduce boe loss eed to be uderstood ad applied at every age. I additio, the early idetificatio ad screeig of idividuals at icreased risk for osteoporosis is critical for the opportuities it offers to apply prevetive measures that ca boost boe health ad decrease the risk of fractures. Although osteoporosis is a silet disease before fractures occur, the effects of fragility fractures are profoud, ot oly for their immediate morbidity ad mortality, but also because they reduce patiets quality of life. 4 Fractures have a egative effect o the stadard measure, quality adjusted life years (QALY); this effect icreases progressively both with age ad with umber of fractures. Coversely, treatmet of osteoporosis ca improve QALY by reducig fracture risk i a cost effective maer. 5 Boe Health Basics Osteoporosis, or porous boe, is a disease characterized by low boe mass; greater boe fragility; ad higher risk of broke boes, also kow as fractures, especially of the hip, spie, ad wrist Paget s disease is a boe disease that causes skeletal deformities ad fractures Osteogeesis imperfecta is a iherited disorder that causes brittle boes ad frequet boe fractures i childhood May other diseases, such as cacer, arthritis, ad HIV/ AIDS, ad their treatmet, ca have adverse effects o boe health A hip fracture almost always requires hospitalizatio ad major surgery. It ca impair a perso s ability to walk uassisted ad may cause prologed or permaet disability or eve death. Spial or vertebral fractures also have serious cosequeces, icludig loss of height, severe back pai, ad deformity. Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health 1

6 Our uderstadig of boe health has beefitted greatly from our scrutiy of what goes wrog i the cases of rare boe diseases. Physicia, Researcher The challege i osteoporosis is that it is ofte a silet disease, ulike myocardial ifarctio, which is more obvious. Osteoporosis ca lead to mortality ad morbidity, but it is ot see as such. Patiet Advocate Other boe diseases affect the lives of may Americas ad their families. Nearly 1.5 millio people i the Uited States may have Paget s disease, the secod most commo boe disease. 6 Paget s disease is characterized by pai, skeletal deformities, icreased risk for multiple fractures, ad other complicatios such as hearig loss. Osteogeesis imperfecta is a geetic disorder that causes brittle boes that break easily. Estimates of the umbers of idividuals i the Uited States with this disorder rage from 25,000 to 50,000 exact umbers are difficult to calculate because milder forms of the disease may go udetected. 7 Although these, ad other rare boe diseases, may affect fewer idividuals tha other coditios, their importace is far reachig: the research coducted to more fully uderstad these diseases has sigificatly advaced the sciece of boe health ad icreased our potetial to address boe loss, fragility, or disease. Magitude ad Urgecy The magitude of the importace of boe health is already far greater tha is widely recogized. A estimated 1.5 millio people suffer a osteoporosis-related fracture each year, ad over their life times, half of all wome ad oe-quarter of all me ca expect to joi their raks. 8 Amog people age 65 ad older, uitetioal falls accout for 87% of all fractures treated i emergecy departmets. 9 The ecoomic costs of boe diseases, icludig medical care ad lost productivity, are substatial. For example, the total aual bill for osteoporotic fractures aloe is estimated to be $30 billio. 10,11 Added to this are the eormous persoal ad social tolls of boe diseases ad their associated fractures or disability. The lower icidece of osteoporosis ad fragility fractures i Africa Americas has led to a lack of attetio to boe health i this populatio. 12 Eve with a icidece that is half that of white wome, a substatial umber of Africa America wome are at risk for fragility fractures. 13 The fact that 10 percet or more of Africa America wome are likely to have a fragility fracture after the age of 50 is more tha sufficiet to warrat icreased attetio to diagosis ad therapy. With the agig of the Baby Boomers, the urgecy for actio to improve boe health will oly icrease. Thus, the time for actio is ow. The impact of boe disease is too great to igore, as is the potetial for reducig the risks ad cosequeces of these diseases ad improvig the health of our atio. Progress ad Promise Cotiued advaces i screeig, risk assessmet, prevetio, ad treatmet offer uprecedeted opportuities to improve boe health. However, the promises of those advaces are beig compromised by the challeges of iertia, demographic ad policy pressures, ad a lack of public ad social recogitio of the urget eed. The rate of scietific ad cliical advaces i boe health is remarkable. Medicatios ow exist that ca treat, prevet, ad reverse the effects of may boe diseases. Oce see as a ievitable part of agig, osteoporosis has become a chroic coditio that ca be largely preveted ad effectively treated. 2 Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health

7 New tools eable cliicias to assess the risk of osteoporosis, scree patiets for the disease quickly, ad refer them for treatmet or targeted prevetio measures. For example, the World Health Orgaizatio (WHO) recetly developed ad released a ew olie fracture risk assessmet tool called FRAX, which gives cliicias a quick ad easy way to measure patiets 10 year fracture risk. I additio, dual x-ray eergy absorptiometry testig (DXA) has become the gold stadard for measurig boe desity, diagosig osteoporosis ad followig chages i boe desity over time. New pharmaceutical developmets iclude mothly ad aual doses of boe stregtheig drugs, which ecourages patiets adherece to treatmet. Recetly developed drugs help the body build ew boe, ad ew atiresorptives prevet or reduce the boe loss cycle. Scietific advaces have provided a better uderstadig of boe diagoses ad treatmet. For example, geetic research has revealed the role of critical gees i particular boe diseases. Other advacemets iclude a better uderstadig of factors such as the roles of differet boe cells ad of factors such as osteocyctes ad osteoblasts, Wt sigalig ad RANKL/RANK i the formatio, growth, maturatio, ad break dow of boes. I additio, ew evidece poits to calcium ad vitami D s crucial roles i promotig ad maitaiig boe health. I additio, physical activity is ow kow to play a critical role i buildig healthy boes ad possibly prevetig some boe diseases. Ad fall prevetio remais a corerstoe of may programs seekig to reduce low-impact fractures. Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health 3

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9 2 Buildig Cosesus for a Natioal Focus o Boe Health Buildig o the Surgeo Geeral s Visio for the Future Much remais to be doe to advace boe health ad prevet ad treat boe disease. The 2004 publicatio of Boe Health ad Osteoporosis: A Report of the Surgeo Geeral 14 created hopes ad expectatios for almost immediate advaces, especially i terms of public ad cliicia awareess ad uderstadig of boe health. The report was aimed at bridgig the gap betwee the kowledge base ad the practice regardig the prevetio of boe disease ad promotio of boe health to apply cuttig-edge research fidigs to actual cliical practice. It also called for greater recogitio of the importace of boe health to geeral health ad well-beig. Boe Health ad Osteoporosis: A Report of the Surgeo Geeral specifically recommeded icreasig public ad professioal awareess of boe health ad the effectiveess of prevetio ad treatmet. It called for greater itegratio of boe health with other health prevetio issues ad iitiatives. The report also called for of fragility fractures to be recogized as setiel evets for the diagosis ad treatmet of osteoporosis, ad uderscored a eed to chage the paradigm of prevetio ad treatmet by treatig fragility fractures as red flags sigalig potetial boe disease. The Surgeo Geeral s report emphasized that meetig these recommedatios would require the participatio of ad collaboratio amog multiple stakeholders ad systems (e.g., health care providers, scietific researchers, patiets, advocates, policy makers, ad health orgaizatios). Oe of the key coclusios of the Surgeo Geeral s report was: More tha eough is kow today to get started o ay of a variety of critical actios that are eeded to ehace the boe health status of Americas. Ufortuately, the call ad challege of the 2004 Boe Health ad Osteoporosis: A Report of the Surgeo Geeral has ot bee heeded. Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health 5

10 More tha eough is kow today to get started o ay of a variety of critical actios that are eeded to ehace the boe health status of Americas. Surgeo Geeral s Report o Boe Health ad Osteoporosis, 2004 Although there have bee may federal, state, ad professioal ad volutary associatio efforts to icrease awareess of boe health ad boe diseases, their efforts have bee diffuse ad their reach has bee miimal. They have suffered from the lack of a major, coordiated atioal effort to promote boe health ad the recommedatios of the Surgeo Geeral s report. The results are tellig: Surveys of cliicias ad patiets idicate that boe health awareess has ot icreased 15 The coectios amog boe health, healthy eatig ad physical activity, ad prevetig falls ad ijury have ot bee successfully itegrated with other major health campaigs, such as those desiged to stem risig obesity rates or prevet heart disease ad diabetes Fidigs from the atioal Healthcare Effectiveess Data ad Iformatio Set (HEDIS) suggest that follow-up treatmet for osteoporotic fractures has chaged very little, idicatig that physicias are o more likely tha they were 4 years ago to treat low-impact fractures as setiel evets 16,17 DXA remais uder-utilized; the Iteratioal Society for Cliical Desitometry estimates that curretly, oly 13 percet of eligible Medicare beeficiaries receive DXA testig 8 You are ever too old or too youg to improve your boe health. Richard Carmoa, M.D. Former Surgeo Geeral Challeges Facig Boe Health Advocates Oe of the persistet challeges facig boe health advocates ad efforts is the stigma associated with agig, frailty, ad deformity. I our youth-obsessed culture, osteoporosis ad other boe diseases call forth egative images of fragility, depedece, ad disability. Older wome themselves are reluctat to admit or ackowledge that they are sufferig from a old perso s disease. Moreover, the geeral public does ot uderstad that boe health spas every age ad ethic group, ad that me ad wome are both at risk for developig boe diseases. Ideed, the rates of fatal hip fractures i me are o the rise: icreasig by 10 percet from 2000 to Although osteoporosis is ot a geriatric disease, it may be see as the geriatric cosequece of a full life s worth of health predictors ad behaviors, risks ad choices; still, that message is ot widely uderstood. Most idividuals cotiue to perceive osteoporosis as a disease of elderly white wome whe i fact, me, youger persos, ad people of color also ca develop osteoporosis ad other boe diseases. Eve more importatly, people do ot uderstad that prevetive measures ad healthy behaviors early i life ad through adulthood ca have a sigificat effect o boe health i later life. New challeges have arise sice the publicatio of the Surgeo Geeral s report. Foremost amog these are legislative reductios to Medicare reimbursemet rates to physicias for DXA screeig, which threate to couter key advacemets i the detectio, assessmet, ad ultimately treatmet of osteoporosis. The atioal average for the Medicare reimbursemet of DXA to physicias was reduced from $139 i 2006 to $82 i 2007, with further cuts plaed through , 21 Curret estimates suggest that the average cost of performig a DXA sca is $134, thus the reimbursemet rate will be far below the break-eve poit for physicias servig as a strog disicetive for them to cotiue offerig this test Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health

11 The promotio of prevetio ad treatmet measures for idividuals with osteoporosis, Paget s disease, or low boe mass also suffered a setback with the widespread media coverage of possible associatios betwee the use of bisphosphoates commoly used to ihibit boe loss i idividuals with or at risk of boe disease, ad a coditio called osteoecrosis of the jaw (ONJ). ONJ ivolves the exposure of the boe of the upper or lower jaw due to detal extractio or trauma, causig a paiful woud that does ot heal. More tha 90% of cases of ONJ occur i patiets who have bee give multiple doses of itraveous bisphosphoates to prevet or treat boe metastases. A ASBMR task force reviewed available iformatio ad estimated that the risk of ONJ associated with bisphosphoate treatmet for osteoporosis is low, betwee 1 to 10 per 100,000 patiet treatmet years. 23 The risk of ONJ i cacer patiets treated with high doses of itraveous bisphosphoates is much higher, i the rage of 1to 10 per 100 patiets. Although the risk of ONJ with bisphosphoate use i osteoporosis is very low, the perceived risk is high due to media attetio. As a result, the rate of bisphosphoate prescriptios ad use has dropped, ad may detists o loger treat patiets who are takig bisphosphoates. Balaced iformatio o this problem is essetial so that the beefits of therapy will ot be deied to patiets at risk for fractures. Recet research regardig rates of vitami D isufficiecy idicates a challege ad a opportuity. Evidece shows that i the Uited States ad aroud the world, vitami D isufficiecy may be oe of the most commoly urecogized medical coditios oe that exposes idividuals to a greater risk of boe disease ad fracture due to the critical coectio betwee vitami D ad the body s ability to absorb calcium ad phosphorous. 24 These fidigs preset a opportuity to revisit the recommedatios regardig vitami D itake or supplemetatio ad explore strategies for icreasig daily itake. May people do t realize that boe is a livig orga, ad ot just a stick. To help people uderstad the importace of boe health, we eed to put a huma face o boe disease. Media Expert The geeral public does ot uderstad that boe health spas every age ad ethic or racial group, ad that me ad wome are both at risk for developig boe disease. Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health 7

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13 3 Developig a Natioal Actio Pla for Boe Health Assessig Progress ad Chartig a Course I 2008, the Natioal Coalitio for Osteoporosis ad Related Boe Diseases (also kow as the Boe Coalitio ) commissioed several studies, icludig a evirometal sca ad a literature review, to assess progress made toward reachig the goals of the 2004 Surgeo Geeral s report. I iterviews with 24 opiio leaders, the study foud that while progress had bee made i buildig the sciece base, much less had bee accomplished i terms of icreasig awareess, itegratig messages, or chagig paradigms. Evirometal Sca Key Fidigs Positive achievemets icluded the followig: Developmet of pharmaceuticals to maitai or icrease boe desity Use of DXA screeig Advaces i the assessmet of risk factors, such as developmet of the FRAX tool Icreased recogitio of the importace of vitami D i promotig boe health Greater uderstadig of the factors regulatig boe cells ad developmet of moocloal atibody therapy Negative fidigs icluded the followig: Little has bee doe to chage the treatmet paradigm Public educatio programs have bee iadequate i raisig public awareess Health care professioals receive iadequate traiig about boe health Little has bee doe to itegrate messages about boe health with broader messages about the importace of healthy lifestyles i prevetig a array of chroic disease problems Natioal Coalitio for Osteoporosis ad Related Boe Diseases America Society for Boe ad Mieral Research Natioal Osteoporosis Foudatio Osteogeesis Imperfecta Foudatio The Paget Foudatio Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health 9

14 Summit for a Natioal Actio Pla for Boe Health Based o these fidigs, ad a cosesus that the field eeded guidace ad focus to direct its efforts, the Natioal Coalitio for Osteoporosis ad Related Boe Diseases sposored a 2-day summit i Jue 2008, i Washigto, DC. This meetig was desiged to: Develop a atioal actio pla to icrease awareess amog professioals ad the public about prevetio, diagosis, ad treatmet of osteoporosis ad other boe diseases Establish priorities for policies ad programs for health care providers, health systems, ad populatio-based approaches Egage key stakeholders i parterships to advace actio Iitiate log-term implemetatio ad evaluatio efforts coordiated by a plaig group of public ad private orgaizatios The summit brought together approximately 150 represetatives of major stakeholder groups, icludig those from research ad academia, professioal ad volutary health orgaizatios, trade orgaizatios, idustry, ad govermet, to discuss strategies ad ideas to create a atioal actio pla to advace the Surgeo Geeral s goals. Stakeholders met i small, facilitator-led workgroups to propose ad discuss key strategies ad activities that would serve as the uderpiigs of a Natioal Actio Pla for Boe Health. Stakeholders first met i groups focused o issues specific to the actio steps outlied by the Surgeo Geeral s report (e.g., icreasig awareess, buildig the sciece base, chagig the paradigm, itegratig health messages). Usig strategies developed durig these work sessios, stakeholders met to discuss how their particular fields or disciplies (e.g., volutary health orgaizatios, professioals, govermet) could implemet or advace those strategies. The followig actio pla is a distillatio of these recommedatios ad ideas, with a particular focus o the themes that emerged as the most overarchig ad most pressig. 10 Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health

15 4A Natioal Actio Pla for Boe Health: Recommeded Strategies Summit participats codesed dozes of ideas ito specific steps for improvig the atio s boe health. For the actio pla, the recommedatios were grouped ito four priority areas: 1. Develop a boe health alliace 2. Promote boe health ad prevet disease 3. Improve diagosis ad treatmet 4. Ehace research, surveillace, ad evaluatio Each of these four priority areas icludes several actio steps to be take by the boe health commuity. Next steps for the actio pla iclude seekig more iput ad guidace from stakeholder groups, with a focus o determiig more specifically how to accomplish these steps ad who will take resposibility for doig so. The followig sectio focuses o key recommedatios that emerged across all 14 workgroup sessios ad provides the cotext i which the recommedatios were made. Alliace ad Ifrastructure Promotio ad Prevetio Screeig, Diagosis ad Treatmet Research, Surveillace, ad Evaluatio Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health 11

16 Priority Oe: Develop A Boe Health Alliace A collaborative, ogoig ifrastructure is eeded to chage the paradigm to icrease awareess of boe health amog the public ad professioals, treat fractures as part of the cotiuum of boe health ad disease, ad develop prevetio ad treatmet approaches. This effort also must iclude a focus by the boe health commuity o itegratig health educatio messages about healthy lifestyles at two levels: (1) boe health orgaizatios themselves should cosider itegratig messages so that they are uiform ad cosistet, ad (2) boe health orgaizatios should work with other chroic disease agecies ad oprofit orgaizatios to support liked messages focused o healthy lifestyle choices. Strategy Actio Steps Stakeholders Forge a atioal alliace focused o boe health issues Collaborate with orgaizatios whose messages about healthy lifestyles dovetail with messages about improvig boe health Create a orgaizatioal structure ad cotiue mometum from the Summit forward Work with existig federally focused clearighouse to coordiate govermet ad ogovermetal boe healthrelated iformatio Develop social marketig for boe health messages Highlight successful programs Agree o key set of messages about beefits to boe health of utritio, exercise ad fall prevetio Develop itegrated ad coordiated messages ad programs All stakeholders ivolved i the Boe Health Coalitio Represetatives from other chroic coditio orgaizatios with leaders of boe health advocacy, cosumers, ad professioal orgaizatios Forge a atioal alliace focused o boe health issues. A atioal Alliace for boe health, with a shared missio ad visio for promotig boe health issues, should be formed. Such a Alliace is essetial to itegratig, focusig, ad promotig a array of relevat issues ad cocers. Key steps to forgig this Alliace iclude determiig where it would be housed amog existig boe health orgaizatios ad idetifyig ad recruitig key stakeholder orgaizatios. The orgaizatio would eed to develop a charter ad set the course for shared priorities, which would primarily focus o implemetig the Natioal Actio Pla. Oce the structure has bee created, the Alliace could be charged with carryig the mometum of the Summit for a Natioal Actio Pla for Boe Health forward by: Sposorig advocacy activities, capitalizig o issues aroud which there is cosesus, ad advacig policy ad legislatio to ecourage ad promote boe health Providig leadership i areas aroud which orgaizatios share commo iterests ad goals, such as spearheadig efforts to address decliig levels of DXA reimbursemet or cocers about appropriate levels of vitami D itake 12 Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health

17 Developig boe health educatio messages for social marketig campaigs, such as those that focus o healthy lifestyle choices ad ijury prevetio Keepig boe health issues at the forefrot of the missio ad visio of all boe health orgaizatios by sposorig joit sessios, cofereces, ad evets to coicide with the aual meetigs of professioal orgaizatios such as the America Society for Boe ad Mieral Research, the America Academy of Orthopaedic Surgeos, the America Orthopaedic Associatio, the America Associatio of Cliical Edocriologists, ad the America College of Rheumatology The Alliace also could coordiate with the existig federal boe health clearighouse the NIH Osteoporosis ad Related Boe Disease~Natioal Resource Ceter to provide olie ad prit iformatio from a rage of govermetal ad ogovermetal orgaizatios to professioals ad to the public, to track ad evaluate programs ad policies, to call for research fudig, ad to advocate for chage ad improvemet i public policy. More could be doe to track state, local, ad private programs devoted to boe health, ad to lik health care cosumers to resources ad iformatio. Fially, the Alliace could focus attetio o social marketig for boe health messages, first by ivetoryig existig programs ad their effect, ad the by developig ad evaluatig ew messages ad programs. May orgaizatios ad agecies ow promote programs about boe health, with messages that target ot oly wome at high risk but also childre, tees, me, people of color, ad disadvataged populatios. Examples of these programs iclude the U.S. Boe ad Joit Decade s Fit to a T campaig, which educates people about the importace of kowig their T-score ad the Office o Wome s Health Powerful Boes Powerful Girls campaig, which targets youg girls with messages about physical activity, utritio, ad boe health. May State ad local ijury prevetio programs iclude a focus o fall prevetio for older adults, i part to stem the rate of low-impact fractures. 26 Lessos could be leared from the successes of other public health iformatio ad awareess campaigs, such as those that have reduced smokig or promoted the use of seatbelts ad bicycle helmets. Lessos could be leared from the successes of other public health iformatio ad awareess campaigs such as those that have reduced smokig or promoted traffic safety. Ay campaig developed would eed to target multiple audieces with a array of eeds a rage of strategies ad materials would eed to reflect the cotiuum o which people eed boe health iformatio, targetig all ages ad all phases of boe health. These programs would ecessarily reflect cultural ad geder issues i developmet of messages ad materials. Collaborate with orgaizatios whose messages about healthy lifestyles dovetail with messages about improvig boe health. May disease-based orgaizatios share with boe health a focus o healthy lifestyle messages aroud good utritio ad exercise as well as ijury prevetio. To date, however, the boe health commuity has ot worked effectively to itegrate its messages of good utritio, physical activity, ad fall prevetio with more overarchig messages that promote healthy lifestyles i geeral. Such collaboratio ad itegratio may be a particularly effective way to educate populatios that may ot see themselves at risk me, youger persos, ad people of color as well as the providers with whom they iteract. Boe health orgaizatios should first look at existig programs ad campaigs that promote similar messages (e.g., programs o obesity prevetio, diabetes prevetio Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health 13

18 There is a serious gap betwee what we kow we ca ad should do ad what we are doig i the commuity. Physicia, Researcher ad treatmet, cardiovascular health) to fid commo groud aroud which to build campaigs ad messages. Creatig a ivetory of existig or successful programs ad their sposors, both federal ad private, is essetial. This ivetory could form the basis for a database or listig of messages most prevalet i media ad educatioal materials. The process would examie successful programs, especially those that have bee evaluated for effectiveess. A iterdiscipliary medical advisory group could also be coveed to agree o a key set of messages about utritio ad exercise beefits for boe health. From here, effective messages for a array of audieces could be developed ad implemeted. This ivetory should iclude a look at direct-to-cosumer advertisig for boe health products, ad how those products are marketed ad positioed to cosumers ad health care professioals. Such messages should begi with clear hooks, such as iformatio about vitami D isufficiecy ad adequate itake or ijury ad fall prevetio, to egage ad iform the public ad providers. These messages could the be promoted by the proposed atioal Alliace, by idividual boe health orgaizatios ad by other orgaizatios with a iterest i disease prevetio ad health promotio. The atioal Alliace would aim to foster coectios to other chroic disease ad professioal orgaizatios with which it would share commo messages about prevetio, treatmet, ad diagosis; ad to work with these orgaizatios to forge itegrated ad coordiated messages ad programs about healthy lifestyles. The Alliace could work closely with orgaizatios such as the Natioal Associatio of Chroic Disease Directors (NACDD), which has advocacy ad educatio programs focused o osteoporosis. 14 Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health

19 Priority Two: Promote Boe Health Ad Prevet Disease Developig ad maitaiig strog, healthy boes is a lifelog process, oe that begis at birth ad cotiues throughout the lifespa. Adults ad childre alike beefit from utritio ad exercise that promote boe health ad growth. As oted by the Surgeo Geeral, idividuals ad families play a role i uderstadig ad promotig boe health, ot oly for their childre, but for their middle-aged ad agig parets. Health care providers ad other key stakeholders also must play a critical role i promotig boe health ad prevetig boe disease. Strategy Actio Steps Stakeholders Build capacity of health care providers to focus o boe health across the lifespa Work with leadership of medical orgaizatios to develop ad implemet behavior chage strategies withi primary care, emergecy departmets, ad orthopedic practices Leaders at schools of medicie ad ursig, as well as allied health professioal educatioal programs Professioal societies Health care professioals Promote adequate vitami D ad calcium itake, with a focus o revisig the adequate itake level for vitami D Support curret efforts Ehace patiet educatio Develop cosistet messages Re-evaluate vitami D requiremets Boe health experts Researchers ad scietists academicias Professioal ad volutary orgaizatios Policymakers Icrease advocacy activities at the federal ad state levels Develop stadards or guidelies of care ad performace measures Review ad revise model state legislatio Coordiate with other orgaizatios to coduct Capitol Hill Days Focus advocacy efforts o topics where there is cosesus i the boe health commuity Ivetory existig stadards ad guidelies Develop atioal cosesus Develop ad implemet mechaisms for moitorig use of stadards ad guidelies Cosumer ad volutary health orgaizatios Professioal societies ad orgaizatios Health care professioals Policymakers Professioal orgaizatios Health care purchasers/ isurers Federal agecies Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health 15

20 Build capacity of health care providers to focus o boe health across the lifespa. Although idividuals are resposible for makig lifestyle chages, all health care professioals from pediatricias to geriatricias ad everyoe i betwee have a part to play i workig with patiets to uderstad boe health ad egage i healthy lifestyles for boe health, ragig from iformatio about utritio ad exercise to steps idividuals ca take to prevet falls. The boe health commuity must work with umbrella orgaizatios ad the leadership of professioal associatios to help esure that: Primary care providers, icludig physicias, urse practitioers, ad physicia assistats pay close attetio to boe health issues ad emphasize the basics of good boe health ad fall prevetio durig iteractios with patiets Health care professioals i emergecy departmets ad orthopedic practices recogize that may boe fractures sigal the potetial for metabolic boe disease ad to go beyod fixig patiets boes by referrig them to a appropriate health care professioal for further evaluatio Oe way to ecourage health care professioals ad orgaizatios to atted to messages about boe health is to work with the Joit Commissio (Joit Commissio o Accreditatio of Healthcare Orgaizatios) ad other orgaizatios (such as the America Academy of Orthopaedic Surgeos, America Medical Associatio, America Academy of Pediatrics, ad the America College of Emergecy Physicias) to develop practice stadards to be used durig the accreditatio process. These stadards could, for example, require hospitals ad ursig homes to view low trauma fractures as a setiel evet for treatmet of osteoporosis ad develop a pla of actio. Promote adequate vitami D ad calcium itake, with a focus o revisig the adequate itake level for vitami D Adequate calcium ad vitami D itake are critical to maitaiig health ad prevetig illesses. Calcium plays a key role i buildig stroger, deser boes early i life ad keepig them strog throughout the life spa. Vitami D is ecessary for the absorptio of calcium. Yet, fidigs suggest that 70 percet of Americas over age 2 do ot get eough calcium o a daily basis (1,000 mg for adults uder age 50, ad 1,200 for those over 50). 25 Similarly, curret research suggests that a miimum of 25 percet of adolescets ad adults i the Uited States may ot have sufficiet levels of vitami D, with higher rates of isufficiecy amog Africa Americas, the homeboud, ad the elderly. 26, 27 Emergig research poits to a role for vitami D i a array of illesses, beyod its well-kow effects o osteoporosis ad boe disease; vitami D isufficiecy may play a role i depressio, diabetes, certai cacers, ad impaired euromuscular fuctio. For boe health i particular, calcium parters with vitami D; a deficiecy of either ca cotribute to the mechaism of boe loss. Efforts to address this issue may iclude several approaches: Ecouragig cliicias to ask patiets about their daily calcium itake ad to cotiue to test patiets at risk for vitami D isufficiecy (e.g., those over the age of 50, those with limited su exposure, those who are obese) prescribig appropriate therapeutic doses for those with low levels 16 Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health

21 Ecouragig orgaizatios ad academic istitutios to educate providers ad patiets about calcium ad vitami D their roles, how to recogize deficiecies, recommeded itake levels, ad ways to esure a appropriate daily itake of these utriets Icorporatig messages ito existig programs about the importace of calcium ad vitami D ad ways to esure adequate daily itake particularly messages targetig utritio, obesity prevetio, ad healthy lifestyles (icludig physical activity) Developig cosistet messagig regardig vitami D mixed messages ad recommedatios cofuse the public ad cofoud professioals. The Agecy for Healthcare Research ad Quality published a August 2007 evidece-based report, Effectiveess ad Safety of Vitami D i Relatio to Boe Health 28, which foud that the largest body of evidece o vitami D status ad boe health was i older adults with a lack of studies i premeopausal wome ad ifats, childre, ad adolescets. The quality of radomized cliical trials (RCTs) was highest i the vitami D efficacy trials for prevetio of falls ad/or fractures i older adults. 29 The NIH Office of Dietary Supplemets Director oted, This idepedet, systematic review is timely because there are mixed messages ad recommedatios to cosumers regardig the beefits ad harms of vitami D itake. The federal govermet is udertakig a ew review of evidece, which precedes ay chage i recommeded itakes of vitami D, curretly 400 I.U. to 600 I.U. for healthy adults over 50. The U.S. Departmet of Agriculture (USDA) ad the Natioal Istitutes of Health (NIH) are workig with the Istitute of Medicie (IOM) to complete this review, which icludes a pael of experts selected by the IOM. The USDA Nutriet Data Laboratory is workig o projects to reaalyze the amout of vitami D i foods ad beverages. Icrease advocacy activities at the federal ad state levels. The public ad professioals eed to advocate for better screeig, detectio, ad treatmet ad for public policy that promotes the importace of boe health. Advocacy efforts ca ecompass may activities, from urgig state ad federal lawmakers to eact legislatio ad develop public policy, to raisig public awareess of boe health. Specifically, model state legislatio should be reviewed ad revised so that states could eact legislatio that addresses priority issues such as the eed for isurers ad Medicare to cover the costs of effective, evidece-based treatmets. A variety of promisig models exist. May states have laws ad regulatios that address particular boe health issues. A 2008 ivetory of state osteoporosis activities reported that 35 states ad Puerto Rico have eacted laws related to osteoporosis. The majority establish statewide educatio, public awareess, ad prevetio programs. Fourtee states madate isurace coverage for osteoporosis-related diagostic ad treatmet services. 30 Recet State Laws A 2006 Arizoa bill made grat appropriatios for services related to osteoporosis, icludig a effort to foster collaboratio amog iterested orgaizatios to create a statewide etwork for coductig osteoporosis screeigs, with a special focus o rural ad uderserved areas A 2006 Ketucky bill established a multigeeratioal prevetio ad educatio program that icludes a focus o educatig health care professioals about atioal cliical guidelies A 2005 Maie bill provided prescriptio drug beefits uder the elderly low-cost drug program to iclude the coverage of drugs to treat osteoporosis Providers, patiets ad families ca be galvaized to advocate for better care through membership orgaizatio-sposored collaborative Capitol Hill Days. May oprofit health groups brig voluteer members to Washigto, DC, for traiig o how to approach their elected officials, followed by visits to Capitol Hill. Orgaizatios should collaborate ad coordiate with oe aother to leverage their resources ad efforts for these activities. They also ca orgaize similar activities to promote boe health legislative actio at the state level. Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health 17

22 To maximize efforts, advocates should capitalize o topics aroud which there is cosesus i the boe health commuity, such as: Revisig guidelies for calcium ad vitami D supplemetatio Promotig adequate reimbursemet rates for evidece-based tests, such as restorig DXA reimbursemet rates Icreasig fudig for basic ad cliical research Icreasig focus o traiig health care professioals i the basics of boe health ad how it relates to their practice or disciplie Icreasig awareess that boe health is a public health issue Promotig awareess of the role of falls i fractures ad uderstadig of how to prevet uitetioal falls ad ijuries Creatig a comprehesive atioal program for osteoporosis ad other boe diseases withi CDC to provide for cotrol, prevetio ad surveillace of osteoporosis, icludig expaded data collectio, icreased evaluatio programs, ad icreased umbers of state grats. This program should also establish boe health goals ad objectives for Healthy People Icreased fudig over the ext decade is ecessary to meet these objectives. Boe health orgaizatios also should reach out to all boe health ad chroic disease agecies to make boe health part of their advocacy ageda. Federal ad state agecies also have a critical role to play i advocatig for more iteragecy collaboratio ad coordiatio. These agecies eed to advocate for more cocerted efforts to alig boe health promotio programs with those for other chroic coditios. Several states have implemeted successful programs targetig osteoporosis educatio ad boe health promotio. Ketucky, New Jersey, Michiga, ad West Virgiia have successfully fuded programs that target educatio ad prevetio strategies. New Jersey has fuded a program that provides traiers to three regioal hospitals to maage Project Healthy Boe. The state of Michiga fuds programs that provide boe desity Existig Guidelies For Cliical Practice The Agecy for Health Research ad Quality, a cliicia s summary guide: Fracture Prevetio Treatmets for Postmeopausal Wome with Osteoporosis ( e=sg&processid=8&docid=95) The America Associatio of Cliical Edocriologists: Medical Guidelies for Cliical Practice for the Prevetio ad Treatmet of Postmeopausal Osteoporosis, 2001 editio with selected updates for 2003 ( osteoporosis2001revised.pdf) The America College of Obstetricias ad Gyecologists: Cliical Maagemet Guidelies for Obstetricias ad Gyecologists, reprit/103/1/203 The America College of Physicias, Screeig for Osteoporosis i Me: A Cliical Practice Guidelie ( abstract/148/9/680) The Natioal Osteoporosis Foudatio: Cliicia s Guide to Prevetio ad Treatmet of Osteoporosis, professioals/cliicias_guide.htm The North America Meopause Society positio statemet: Maagemet of Osteoporosis i Postmeopausal Wome ( Cotet/PDF/psosteo06.pdf) 18 Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health

23 screeig ad referral for uderserved, high-risk populatios, as well as commuity educatio programs for self-maagemet traiig, icludig a fall-prevetio program called A Matter of Balace. These state programs are models to other states o how fudig might be used to promote a boe health ageda. Develop ad cotiuously improve stadards or guidelies of care ad performace measures. No established stadard of care exists for the prevetio ad treatmet of osteoporosis ad other boe diseases. There is o medical specialty for osteoporosis. The Natioal Osteoporosis Foudatio ad may physicia orgaizatios offer cliical guidelies. A recet search of the Natioal Guidelie Clearighouse (NGC) ( revealed 38 guidelies for osteoporosis care, ragig from diagosig the disease i me to prevetig falls amog the elderly. The NGC offers a guidelie sythesis, Osteoporosis Part 1. Screeig ad Risk Assessmet, which compares guidelies from the America College of Obstetricias ad Gyecologists, the North America Meopause Society, ad the Uiversity of Michiga Health System. Although a variety of guidelies exists, they are complex, icosistet, ad ot widely used. A 2008 study from the Global Logitudial Registry of Osteoporosis i Wome reported wide regioal variatios i the use of boe-savig drugs. 31 A 2004 report reviewed 24 practice guidelies ad foud that screeig guidelies were lackig i uiform recommedatios, that screeig rates geerally were low ad that few itervetios to improve screeig rates have bee studied. 32 The authors oted, Osteoporosis screeig guidelies lack uiformity i their developmet ad cotet. 3 Stadards are eeded to meld the most importat quality measures with stadards ad guidelies that cliicias ca readily follow. Such guidelies would, for example, focus o idetifyig a first low-impact fracture as a setiel evet sigalig problems i boe health. Guidelies also could focus o helpig cliicias to idetify, scree, ad treat patiets most at risk for boe disease. Performace measures are eeded that create carrots ad sticks for cliicias to scree ad diagose patiets ad to follow up with appropriate treatmet ad care. To this ed, The Joit Commissio recetly released a series of volutary measures for health care orgaizatios to use to promote ad improve boe health. The measures aim to icrease the rates by which osteoporosis is diagosed ad treated, ad to decrease America Medical Associatio ad Natioal Committee for Quality Assurace Physicia Performace Measuremet Set for Osteoporosis Post fracture commuicatio with the physicia Maagig o-goig postfracture care Icreased screeig or therapy for wome aged 65 years ad older Improved maagemet followig a fracture Icreased use of pharmacologic therapy for osteoporosis Icreased couselig for vitami D ad calcium itake ad exercise More screeig for the use of glucocorticosteroids ad other secodary causes of osteoporosis Joit Commissio Volutary Measures to Promote ad Improve Boe Health 1. Screeig for females at risk (patiets aged 5. Pharmacotherapy for osteoporosis with oe or more risk factors, or 6. Risk assessmet ad treatmet for patiets over age 64 who have had at least patiets over age 49 who have had a oe DXA performed fracture, i acute care settigs 2. Screeig for secodary causes of osteoporosis 3. Boe mieral desity (BMD) testig for patiets at high risk of fracture due to glucocorticoid admiistratio 4. Educatio o exercise ad physical activity for osteoporosis patiets 7. Risk assessmet ad treatmet after fracture for patiets over 49 who have had a fracture, i o-acute care settigs 8. Smokig ad alcohol educatio for osteoporosis ad fracture patiets 9. Fall risk ad persoal safety educatio Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health 19

24 the rates by which hip ad other fragility fractures rob affected patiets of their quality of life. 34 The America Medical Associatio (AMA) ad the Natioal Committee for Quality Assurace (NCQA) developed a physicia performace measuremet set for osteoporosis. 35 The performace measures target physicias who treat patiets aged 50 ad older who have a osteoporotic fracture or who maage ogoig care of a patiet with osteoporosis. The six measures iclude improvemets i post-fracture commuicatio, follow up, ad screeig. Performace measures that have bee developed do ot appear to be i widespread use. The field must first ivetory existig stadards, guidelies, ad performace measures to see what exists, what is beig used, ad what is or ca be effective. Discussios the could move forward to explore a atioal cosesus. To move from policy to practice, icetives for use of stadards ad performace measures should be explored ad mechaisms for moitorig use ad cotiuous adaptio ad improvemet should be developed ad implemeted. The problem is that differet groups have differet measures for differet stakeholders. Physicia, Researcher The Natioal Committee o Quality Assurace (NCQA) uses its Health Pla Employer Data ad Iformatio Set (HEDIS) to publicly report iformatio about health care system performace. I 2004, HEDIS icluded the first osteoporosis-specific performace measure for Medicare maaged care plas. This measure is defied as: The percetage of wome age 67 or older who suffer a fracture who received either a BMD test or prescriptio treatmet for osteoporosis withi 6 moths of the date of fracture. I compariso to other HEDIS measures, the rates of compliace for this measure remai quite low. For istace, although 94 percet of Medicare patiets receive a beta-blocker post myocardial ifarctio, 2006 HEDIS data report that oly 22 percet of wome received osteoporosis maagemet. This rate has fluctuated slightly i recet years. 36 I ay case, i compariso to other measures, this oe remais quite low. 20 Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health

25 Priority Three: Improve Diagosis Ad Treatmet Despite sigificat advaces i the diagosis ad assessmet of boe diseases, further research is eeded to improve diagosis ad treatmet. More work is eeded to support cosumer access to importat diagostic ad treatmet modalities, ad to support adequate reimbursemet for evidece-based treatmets. Provider educatio is a essetial elemet of improvig diagosis ad treatmet. I additio, collaborative models of care, such as care maagemet models used for other chroic coditios, are essetial to improvig ogoig treatmet of boe disease. Strategy Actio Steps Stakeholders Fid better ways to diagose disease ad assess risk Cotiue research to uderstad who is at risk ad how best to iitiate treatmet Explore implemetatio ad reachig cosesus o tools (e.g., FRAX ) Govermet researchers ad academicias Cliicias Professioal societies Idustry researchers Experts o boe health Cosumer ad professioal orgaizatios ad societies Policymakers Health care purchasers/ isurers Address issues of adequate reimbursemet for diagosis ad evidece-based treatmets Focus o fracture as a setiel evet i boe health maagemet Icrease cosumer uderstadig of access ad quality issues aroud reimbursemet rates Seek more appropriate level of fudig for reimbursemet of costs to icrease patiet access ad prevet disicetives for use Support existig lobbyig efforts Develop ad implemet boe health curricula Research ad develop collaborative models of care (e.g., case maagers, multifaceted itervetios, Boe Health Teams) Cliicias ad health care professioals Professioal societies Cosumer advocacy orgaizatios Govermet researchers ad academicias Cliicias Professioal societies Idustry researchers Experts o boe health Cosumer ad professioal orgaizatios ad societies Policymakers Health care purchasers/ isurers Cliicias ad health care professioals Professioal societies Cosumer advocacy orgaizatios Natioal Actio Pla for Boe Health: Recommedatios from the Summit for a Natioal Actio Pla for Boe Health 21