Toward a More Collaborative Federal Responseto Chronic Kidney DiseaseAndrew S. Narva,* Michael Briggs,† Regina Jordan,† Meda E. Pavkov,†Nilka Rios Burrows,† and Desmond E. Williams†

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Chronic kidney disease (CKD) is a significant public health problem in the United States. However, data

from the United States Renal Data System and other sources suggest that care for people with CKD

does not meet recommended standards. The Federal government has developed the infrastructure

to promote population-based interventions which have reduced the burden of other chronic illnesses.

An effective, coordinated response by Federal health agencies to the public health challenge of CKD

could have a significant effect on the morbidity, mortality, and costs associated with CKD. In recent

years, initiatives undertaken by three Federal agencies have made important advances in coordinating

efforts. The Centers for Disease Control and Prevention has begun to develop public health infrastruc-

ture for monitoring the burden of CKD. The Centers for Medicare and Medicaid Services has, through

the successful Fistula First Breakthrough Initiative (FFBI) and inclusion of CKD in the scope of work

of Quality Improvement Organizations, promoted earlier diagnosis and treatment of CKD. The National

Institute of Diabetes and Digestive and Kidney Diseases, through its National Kidney Disease Education

Program, has reinvigorated and expanded the Kidney Interagency Coordinating Committee so that it is

a robust vehicle to share information about activities, identify and disseminate promising practices and

tools, and foster cross-agency collaboration. Collaboration among Federal health agencies has the po-

tential to enhance efforts to reduce the burden of CKD.

Published by the National Kidney Foundation, Inc.

Key Words: Chronic kidney disease, Fistula First, Surveillance, Quality improvement organizations,

CDC, CMS, NIDDK, NKDEP

Over the past 20 years, chronic kidneydisease (CKD) has become recognized as

a significant public health problem in theUnited States. It is a common and costly dis-ease: it is estimated that CKD may affect 23.2million Americans aged .20 years1; in 2006,costs for Medicare patients with kidneydisease exceeded $49 billion, or nearly one-quarter of all Medicare spending.2

CKD is generally easy to diagnose, and ef-fective treatments exist.3-5 National objectivesreflecting quality of CKD care were includedfor the first time in Healthy People 2010.6 De-spite this recognition, publication of severalclinical guidelines, and significant effort onthe part of voluntary health organizations

m *National Institute of Diabetes and Digestive and

Diseases, National Institutes of Health, Bethesda MD;ivision of Diabetes Translation, National Center for

c Disease Prevention and Health Promotion, Centers

ease Control, Atlanta, GA.

dress correspondence to Nilka Rios Burrows, MPH, 4770Hwy NE, Mailstop K10, Atlanta, GA 30341. E-mail:

cdc.gov

blished by the National Kidney Foundation, Inc.8-5595/10/1703-0010$36.00/0

:10.1053/j.ackd.2010.03.006

Advances in Chronic Kidney Disease, Vol

and professional groups, data from the UnitedStates Renal Data System (USRDS) and othersources suggest that much work remains tobe done to achieve acceptable levels of recom-mended care. In 2006, ,35% of people withdiabetes and kidney disease received basiccare (ie, an eye examination, lipid evaluation,and two measurements of hemoglobin A1c).7

Seventy-three percent were treated withrenin-angiotensin system antagonists, a levellittle improved over the previous 5 years.7

Blood pressure control for CKD patients waspoor; nearly half of the hypertensive patientsin the National Health and Nutrition Exami-nation Survey (NHANES) had uncontrolledblood pressure, and another quarter were un-aware of their condition or left it untreated.7

Fewer than 40% of patients with an estimatedglomerular filtration rate ,30 mL/min/1.732

were coded with a CKD diagnosis.8 One-third of patients do not see a nephrologistbefore initiation of renal replacement therapy,and only 13% have seen a dietitian before ini-tiation.7 Approximately half of patients withno pre-dialysis nephrology care had pre-initiation hemoglobin levels ,10 g/dL, com-pared with 35% of patients with more than 1year of nephrologic care.7 For more than 80%

17, No 3 (May), 2010: pp 282-288

Federal Response to CKD 283

of patients initiating hemodialysis, vascularaccess was provided by a catheter.7

As guardian of the nation’s health, the Federalgovernment has developed the infrastructure topromote population-based interventions whichhave proven effective in reducing the burden ofother chronic illnesses, such as stroke and cancer.In addition, the Federalgovernmenthasa uniquerole in addressing the morbidity associated withCKD through funding care for people with end-stage renal disease (ESRD). An effective, coordi-nated response by Federal health agencies to thepublic health challenge of CKD could have a sig-nificant effect on the morbidity, mortality, andcost associated with CKD.

Current Federal efforts span a range of mis-sions, including surveillance, professional andpatient education, outreach to high-risk popu-lations, quality improvement, and delivery of,as well as payment for, CKD treatment. Suchactivities are conducted by programs acrossseveral Federal health agencies. The Federalgovernment, considered as a whole, appearsto have a fairly comprehensive approach toCKD management.

However, Federal agencies do not functionas a comprehensive system or, indeed, as a sys-tem at all. Many programs operate indepen-dently of each other, which increases the riskof contradictions, redundancies, and gaps.Even though agencies are doing excellentand needed work on CKD issues—indeed,this article highlights several notable exam-ples—the collective reach and effect of theseprograms fall short of their true potential. Im-proving communication and coordinationamong Federal CKD programs would, there-fore, be a key step in improving the overallFederal response to CKD.

The barriers to achieving greater effective-ness begin with poor visibility. Federal pro-gram managers experience difficulty inlearning about, or staying abreast of, whatother Federal agencies do related to CKD.

Lack of coordination is among the sequelaeof poor visibility: if program managers are un-aware of what is happening, it becomes diffi-cult for them to work together. If duplicatedefforts are not visible, they cannot be avoided;if opportunities for collaboration are not iden-tified, they cannot be capitalized upon; if pop-ulations of focus are not clearly defined,

communities in need can fall through thecracks. What might otherwise be a well-coordinated group of Federal programs, withaligned objectives and clear divisions of labor,has historically been a band marching to thebeats of different drummers.

In recent years, however, initiatives under-taken by three Federal agencies have madeimportant advances in coordinating efforts.The Centers for Disease Control and Preven-tion (CDC) has begun to develop a surveil-lance system and public health analyses thatrequire dialogue and coordination among nu-merous agencies. The Centers for Medicareand Medicaid Services (CMS) has, throughthe successful Fistula First Breakthrough Ini-tiative (FFBI) and inclusion of CKD in thescope of work of Quality Improvement Orga-nizations (QIOs), helped build relationshipsand infrastructure that support earlier diagno-sis and treatment of CKD. The National Insti-tute of Diabetes and Digestive and KidneyDiseases (NIDDK), through its National Kid-ney Disease Education Program (NKDEP),has reinvigorated and expanded the KidneyInteragency Coordinating Committee inways that make it a robust vehicle to share in-formation about activities, identify and dis-seminate promising practices and tools, andfoster cross-agency collaboration.

Centers for Disease Control andPrevention

In 2006, Congress appropriated funds to de-velop capacity and infrastructure at CDC fora kidney disease surveillance, epidemiology,and health outcomes program. These fundsseeded what has now become the CDC CKDinitiative. The CKD initiative is designed todevelop and implement public health strate-gies for promoting kidney health. These strat-egies seek to prevent and reduce theprogression of CKD, raise awareness aboutCKD and its risk factors, promote early diag-nosis, and improve outcomes and quality oflife for those living with CKD. CDC has devel-oped collaborative relationships with researchinstitutions, other Federal agencies, andnational organizations that are currentlyengaged in CKD action. The activities ofCDC are designed to provide fundamental

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and timely public health information for theCKD professional and public audience.

CDC—in collaboration with the Universityof Michigan, University of California at SanFrancisco, and Johns Hopkins University—isattempting to establish a national surveillancesystem for CKD in the United States.9 The sur-veillance system currently uses existing localand national sources of CKD data to quantifythe CKD burden, identify gaps and defi-ciencies in existing data sources, and proposecreative solutions and remedies to fill gapsand deficiencies. The surveillance projectalso is developing a plan to integrate all datasources into a functional surveillance system.This surveillance system will be made avail-able through an interactive web-based inter-face that would provide current and trenddata on the state of CKD.

CDC is collaborating with other Federalagencies, academia, national organizations,and the public to develop a CKD fact sheetthat will provide definitive information onthe burden and consequences of CKD in theUnited States that can be used by all partners.In collaboration with the National Institute ofHealth’s (NIH) NIDDK, and CDC’s NationalCenter for Health Statistics, the CKD initiativesupports the development, refinement, andcollection of kidney measures in the NHANESsurvey of American adults and children.10

CKD Health Evaluation Risk InformationSharing (CHERISH), a collaborative projectof CDC and the National Kidney Foundation,is a free health screening to identify individ-uals who have CKD or are at increased riskfor developing CKD. Screening participantscan learn if they have kidney disease or areat risk for kidney disease; they receive refer-rals if their results are outside of normalranges, as well as a follow-up survey to assesstheir care after the screening.

CHERISH has developed an algorithm usingdata from NHANES that maximizes the yield ofCKD detection and screening programs. CHER-ISH will assess the burden of kidney disease ina high-risk targeted population, determine theindividual’s subsequent access to care, and ad-dress the likelihood of disease progression inthose with evidence of CKD. This study is cur-rently being conducted in eight sites in fourstates to test the feasibility of implementing

such a program. Preliminary data suggeststrong participation rates from the public; pre-liminary results were presented at October2009 American Society of Nephrology meetingin San Diego.11,12

CDC also collaborates with the Departmentof Veterans Affairs (VA) - Puget Sound HealthCare System - to examine the natural historyof CKD and evaluate the rate of progressionthrough the stages of CKD and developmentof complications using national VA datasources.13

The CKD Cost-Effectiveness Study, con-ducted by CDC in collaboration with theResearch Triangle Institute, has developed andvalidated a lifetime simulation model to predictthe development and progression of CKD in theUnited States.14 The program is now using themodel to assess the cost-effectiveness of variouspublic health interventions to prevent, delay,and manage CKD and its complications. Thefirst application of the model was to test thecost-effectiveness of screening and early treat-ment of CKD.15 CDC is also researching the di-rect and indirect economic cost of CKD throughits Cost of Illness Study.16

CDC continues to work in close collabora-tion with other Federal agencies. Its activitiessupport CMS in its activities related to theMedicare Improvements for Patients and Pro-viders Act of 2008 (see later in the text), andCDC is collaborating with NIDDK to leadthe development of new kidney objectivesfor Healthy People 2020.

Centers for Medicare and MedicaidServices

In 2004, each person with CKD annually costMedicare $20,668, a 5.3% increase over the pre-vious year, and 41% more than in 1993. Medi-care expenditures for ESRD in 2006 were anadditional $22.7 billion17; they are projectedto more than double to $55.6 billion by 2020.18

Because the average cost of providing care fora dialysis patient is $72,000 per year,19 thereare significant potential cost savings associatedwith implementation of interventions that helpslow the progression of CKD. According to theUSRDS, Medicare saves $250,000 for each pa-tient who does not progress to dialysis (basedon $65,000 annual cost of Medicare ESRD

Federal Response to CKD 285

services and a 4-year life expectancy).19 Pa-tients with CKD, diabetes, and hypertension,either alone or in combination, represent thegreatest disease burden to the Medicare pro-gram. In 2007, patients with CKD made up9.8% of the general Medicare population, butexpenditures associated with CKD amountedto 27.6% of costs.20 There is a clear need formedical interventions that help slow the pro-gression of CKD and reduce costs.

Quality Improvement Organizations

Created by Congress in 1982, QIOs work toimprove the quality of services provided toMedicare beneficiaries. CMS interprets thisto include a broad range of proactive initia-tives that promote quality care. Included inits scope of work for the program are tasksthat direct QIOs to provide technical assis-tance, including information exchanges, toMedicare providers to help them improvethe quality of care they provide.21

The ninth Scope of Work, currently in effect,tasks QIOs with improving detection and careof CKD, with the aim of decreasing progres-sion of CKD among Medicare beneficiaries.Specifically, CMS asks QIOs to focus on threeareas: annual testing to determine the rate ofkidney failure because of diabetes; use of an-giotensin converting enzyme (ACE) inhibitorsand/or angiotensin receptor blockers to slowprogression of CKD in patients with diabetesand hypertension; and timely placement ofan arteriovenous fistula.22

Although these are important objectives inthemselves, the strategies that QIOs use toachieve them help advance a more compre-hensive and coordinated approach to CKDmanagement. CMS directs QIOs to increaseprovider use of tested and proven clinicalpractices, disseminate to providers andpatients tools and resources that are alreadyavailable through other Federal partners, andwork in collaboration with others to achievelasting system level changes across a varietyof care settings (eg, hospitals, nursing homes,and community health centers).22

Fistula First Breakthrough Initiative

The CMS-led Fistula First Breakthrough Initia-tive (FFBI) has achieved remarkable success

over the past 6 years—the percentage of prev-alent hemodialysis patients in the UnitedStates with an arteriovenous fistula as theirprimary vascular access increased from32.4% at the beginning of 2003 to 53.3% byAugust 2009.23 The marked increase in fistulaplacement may be an indicator of more com-prehensive and better coordinated manage-ment of CKD; additional progress will bedifficult without improvements in early detec-tion, patient education, and early referral.

Further collaboration will be required toachieve the new CMS goal of a prevalent arte-riovenous fistula utilization rate of 66%. Withleadership from CMS—and support from theESRD Networks, QIOs, and the more than 60diverse groups in the FFBI Coalition—theFFBI works to implement seven strategies toachieve this new goal.24 As with QIOs, thesestrategies demonstrate how CMS can promotea more comprehensive response to CKD. TheFFBI Strategic Plan requires a high degree ofpartnership and coordination across special-ties, practice settings, and professional com-munities. Early referral to nephrologists isa key objective; late referral has been shownto be a major determinant in the use of centralvenous catheters at hemodialysis initiation.25

The Strategic Plan seeks to engage a diversegroup of referring physicians and associatedhealthcare systems to increase awareness ofthe importance of arteriovenous (AV) fistulas,and especially the need for early referral to al-low for placement and maturation before initi-ation of hemodialysis.

The ESRD Networks and QIOs play a cru-cial role in this effort, disseminating informa-tion and providing technical assistance to thenumerous providers and partners withwhom they are already working. These part-ners are indeed a key component of the FFBI’ssuccess. By sharing information with andamong a wide variety of stakeholders (eg, re-nal and other professional associations, dialy-sis providers, vascular access surgeons,hospital and primary care associations, insur-ance providers, and community groups) theFFBI Coalition has helped reach CKD patientsand those in a position to influence practicepatterns. The six CKD educational sessionscovered under the Medicare Improvementsfor Patients and Providers Act of 2008 provide

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a new opportunity to educate patients andcaregivers on the importance of timely place-ment of vascular access.

National Institutes of Health

The NIDDK and other institutes at NIH sup-port a $523 million portfolio of kidney re-search.26 The scope of this research is broad,examining basic, clinical, and epidemiologicaspects of kidney disease. The USRDS, the an-nual NIDDK-funded analysis of data on kid-ney disease in the United States, is used inquantifying public health trends, guidingfunding priorities, and designing targetedkidney research programs. Of particular inter-est to other Federal agencies is the ChronicRenal Insufficiency Cohort Study, a longitudi-nal cohort study of 4,000 people with CKD,half of whom have diabetes.27 Longitudinaldata are just becoming available, but the studywill likely play a large role in informing effortsto predict risk for progression of CKD andguide population management interventions.

The NKDEP was established by NIDDK in2000 to reduce the morbidity and mortalitycaused by CKD and its complications. NKDEPaims to improve early detection of CKD, facil-itate identification of patients at greatest riskfor progression to kidney failure, promoteevidence-based interventions to slow progres-sion of CKD, and support the coordination ofFederal responses to CKD. To achieve itsgoals, NKDEP works in collaboration witha range of government, nonprofit, and health-care organizations to raise awareness amongpeople at risk for CKD about the need for test-ing; provide information, training, and tools tohelp health care providers better detect andtreat CKD; and support changes in the labora-tory community (eg, standardizing the mea-surement and reporting of serum creatinineand estimated glomerular filtration rate) thatyield more accurate, reliable, and accessibletest results. Central to NKDEP’s approach isthe concept that CKD should be identifiedand addressed in the primary care setting,and that managing CKD before referral canimprove patient outcomes.

As a Federal program devoted to improv-ing health outcomes associated with CKD,NKDEP is well suited to serve as a catalyst

for a coordinated Federal response to CKD.An appropriate vehicle has existed since1987: the Kidney Interagency CoordinatingCommittee, based at NIDDK and mandatedby Congress to encourage cooperation, com-munication, and collaboration among all Fed-eral agencies involved in kidney research andother activities.

Beginning in 2007, NKDEP took an activerole in coordinating the Kidney InteragencyCoordinating Committee, expanding it froma brief pro forma annual meeting into an active,multifaceted, year-round initiative. The com-mittee has been revitalized by its memberagencies and now serves as a forum to raiseawareness of the range of activities within theFederal government around CKD detectionand treatment. Improved interagency commu-nication, facilitated in part by a newsletter andWeb-based tool (see later in the text), has pro-duced gratifying efforts at collaboration, par-ticularly among the NIH, CDC, and CMS.

One novel product of the Kidney Inter-agency Coordinating Committee has beena matrix to document the range of programsundertaken by each agency. The Kidney Inter-agency Coordinating Committee (KICC) Ma-trix, shown in its concise reference form inFigure 1, is available on the National KidneyDisease Education Program (NKDEP) Website as an interactive matrix that enables Fed-eral agencies and others to easily summarizeall CKD-related activities across nine Federalagencies.28 Visitors can click on a response cat-egory (eg, Quality Improvement/Evidence ofTherapy, Scientific Research, ProfessionalEducation and Outreach) to learn aboutagency activities in that area; click on anagency name to learn about its activities acrossresponse categories; or click a Summary but-ton to quickly learn what a particular agencyis doing in a particular response category.Contact information for each agency and ini-tiative is also provided to foster additionalcollaboration.

Other Efforts

In addition to the CDC, CMS, and NIH effortsdescribed earlier, the Indian Health Service,Department of Veterans Affairs, and Depart-ment of Defense all support direct care

Figure 1. NKDEP Kidney Interagency Coordinat-ing Committee matrix.

Federal Response to CKD 287

systems which serve populations with a highprevalence of, or at high risk for, CKD. Despitelimited resources, each of these systems hasdemonstrated the ability to implement sys-tematic change to improve care in CKD, diabe-tes, and other chronic illnesses. As Federallyfunded direct-care systems, they are account-able to the public and have a strong incentiveto deliver care in the most cost-effective man-ner. The systems can be surprisingly innova-tive and effective: the VA electronic healthrecord is highly regarded, and American In-dians with diabetes appear to have reducedrates of ESRD despite growing prevalence ofdiabetes.

Recommendations for FurtherCollaboration

In addition to the improvements in communi-cation and cooperation made possible by theKidney Interagency Coordinating Commit-tee—as well as other opportunities for coordi-nated planning, such as Healthy People2020—there are several priority areas in whichFederal agencies can better align their effortsand amplify their collective impact. These in-clude a cross-agency initiative to define qual-ity improvement measures relevant to CKD;a systematic assessment of existing clinicalguidelines related to CKD, out of which mayemerge a collective effort to identify and close

gaps in knowledge about primary and second-ary CKD education; joint development anddistribution of prediction tools for progressionto kidney failure; and coordinated efforts tostrengthen educational offerings and mate-rials for primary care providers.

It will also be important to look beyondthose Federal agencies working directly onCKD toward new models of collaborationand collective planning being adopted byothers within the Federal government. Oneexample is the Clinical Decision Support(CDS) Collaboratory—a joint initiative of theOffice of the National Coordinator for HealthIT, Agency for Healthcare Research and Qual-ity, and the United States Department ofHealth and Human Services PersonalizedHealthcare Initiative—which brings togetherFederal agencies to share CDS-related infor-mation and support. Such a forum providesa vehicle for Federal agencies to work togetherto improve CDS on CKD-related issues.

Conclusion

The health agencies of the Federal governmentdevote great resources to reducing the burdenof CKD. Although these efforts, from surveil-lance of early CKD through quality improve-ment of ESRD care, are comprehensive inscope, they are not perceived as such. Thismay be due to the failure of the various agenciesto coordinate their efforts. With appropriate co-ordination, the effectiveness and coherence ofeach agency’s efforts could be enhanced and im-plementation of system changes needed to im-prove CKD outcomes could be promoted.Collaboration among Federal healthcareagencies is likely to enhance efforts to reducethe burden of CKD in the United States.

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