I SSUE B RI EF No. 032015REIMAGINING THERYAN WHITEHIV/AIDS PROGRAMJUNE 2015PROTECTING THE LEGACY — IMPROVING HIV HEALTH OUTCOMESLEVERAGINGTHE RYAN WHITEHIV/AIDS PROGRAMTO BOLSTER THE HIVCLINICAL ANDNON-CLINICALWORKFORCE
JUNE 2015Prepared by Jeffrey S. Crowley and Connie GarnerThis issue brief was developed independently of, butinformed by an expert consultation held in Washington,DC in December 2014 of approximately 30 diversestakeholders, including people with HIV, HIV medicaland non-medical providers, Ryan White grantees, andfederal HIV policy and program staff. The project isguided by an advisory group consisting of:Deloris Dockrey, Hyacinth AIDS FoundationErnest Hopkins, San Francisco AIDS FoundationConnie Garner, Foley HoagAnn Lefert, National Alliance of State and TerritorialAIDS DirectorsBill McColl, AIDS UnitedCarl Schmid, AIDS InstituteNaomi Seiler, Milken Institute School of Public Health,George Washington UniversityAndrea Weddle, HIV Medicine AssociationThe views expressed in this issue brief are those of theauthors and not necessarily those of advisory groupmembers or expert consultation participants.This project is supported by a grant fromGilead Sciences.
1LEVERAGING THE RYAN WHITE HIV/AIDS PROGRAM TO BOLSTERTHE HIV CLINICAL AND NON-CLINICAL WORKFORCETHE RYAN WHITE POLICY PROJECTseeks to generate and evaluate ideas for adapting the Ryan WhiteHIV/AIDS program to be maximally effective in a changing health system.Some might question whether we need a dedicatedHIV care and treatment program now thatthe Affordable Care Act (ACA) has prohibiteddiscrimination on the basis of health status andexpanded access to insurance coverage.Yes. Continuing the Ryan White HIV/AIDS programis necessary to maintain twenty-five years ofinvestment that has saved lives and improved HIVhealth outcomes. It has yielded a nationwide systemof clinical and non-clinical providers equipped tomeet the complex and specialized needs of peoplewith HIV in a manner that is culturally relevant andeffective. In addition, the Ryan White program providesan extraordinary example of the effectiveness of anintegrated care model in decreasing the morbidity andmortality of what would otherwise be a terminal illness.While the Ryan White program was created in the earlyyears of the epidemic as an “exceptional” response toa national crisis, this focused response to HIV remainsimportant because of the continuing serious publichealth aspects of HIV. If we do not address the careand treatment needs of people with HIV, the epidemicwill spread and increase the costs it imposes on theNation. The Ryan White program sits alongside otherprograms such as those that serve people with mentalhealth and substance abuse disorders at the SubstanceAbuse and Mental Health Services Administration(SAMHSA), programs for people with developmentaldisabilities and seniors within the Administration forCommunity Living, and special eligibility options forspecific populations within certain Federal programs.All of these were designed by past Congresses andAdministrations to provide cost-effective responses tospecific health threats facing the American people.People with HIV who are in care, on treatment, andvirally suppressed are unlikely to transmit HIV toothers. Recent data indicate that more than 60% ofHIV transmissions in the United States occur amongpeople with HIV who have been diagnosed, but arenot in regular care compared to fewer than 10% oftransmissions among people diagnosed and in care(JAMA, Skarbinski, 2015). The Ryan White programsupports people to remain engaged in care. Newanalyses from CDC and HRSA show that uninsuredpeople with HIV receiving Ryan White services aremore likely to be virally suppressed than people withHIV who have insurance, but no access to Ryan Whiteservices (CROI 2015 Abstract 1064, Bradley). Further,the same study found that people with HIV with privateinsurance or Medicaid who receive supplementalcoverage from Ryan White were more likely to beprescribed antiretroviral therapy (ART) and peoplewith HIV in Medicaid and Medicare with supplementalcoverage from Ryan White were more likely to be virallysuppressed than if they did not receive supplementalRyan White services. In 2010, more than 70% of RyanWhite program clients had Medicaid, Medicare, orprivate insurance, yet they turned to the Ryan Whiteprogram because insurance, on its own, does not meetall of their health care needs. Moreover, some peoplewith HIV remain ineligible for insurance coverage.Early experience with the ACA coverage expansionsdemonstrates that gaps remain. For example, manyhealth plans have placed all HIV medications in thehighest cost tiers. A study in 12 states found thatwhen people with HIV enrolled in these plans, theircosts were three times higher than in plans withdifferent formulary structures. Even factoring inlower premiums and the annual out-of-pocket limit,researchers concluded that persons enrolled in suchplans paid about 3,000 more each year than if theyhad enrolled in a plan with a different formularystructure (NEJM, Jacobs and Sommers, 2015). TheRyan White program serves as the essential backstoppayer of last resort for HIV health services.For background on the Ryan White HIV/AIDSProgram, see the Kaiser Family Foundation issue briefdeveloped as a collaboration between the Foundationand the O’Neill Institute: Updating The Ryan WhiteHIV/AIDS Program For A New Era: Key Issues &Questions For The Future. (Available at kff.org)
2LEVERAGING THE RYAN WHITE HIV/AIDS PROGRAM TO BOLSTERTHE HIV CLINICAL AND NON-CLINICAL WORKFORCEThe US economy depends on a strong infrastructure of roadsand bridges, modern information technology, and a well-trainedand productive workforce to sustain itself; these are also criticalelements of a vibrant response to the Nation’s HIV epidemic.We need to maintain systems of care in clinics and communities;we need to develop and improve systems to integrate, collectand use data; and we need to reward a spirit of innovationand a willingness to adapt to an evolving epidemic with newopportunities to better support people with HIV in systems ofcare. To accomplish these things, we need an energized, diverse,and qualified HIV workforce.
3LEVERAGING THE RYAN WHITE HIV/AIDS PROGRAM TO BOLSTERTHE HIV CLINICAL AND NON-CLINICAL WORKFORCEThis workforce consists of physicians, nurses,physician assistants, nurse practitioners, pharmacists,and other health professionals working in clinicalsettings. It also includes social workers, casemanagers, peer counselors, insurance navigators,community health workers, rehabilitation counselors,and others performing critical roles that supportpeople to engage and stay engaged in HIV care,working in both clinical and community settings.Importantly, people living with HIV are often bothclients of HIV programs and workforce contributors,whether as paid staff or volunteers. The Ryan WhiteHIV/AIDS Program, our primary federal programdedicated to responding to the care and treatmentneeds of people with HIV, is also the main federalprogram dedicated to maintaining and growing theHIV workforce.Responding to HIV requires providers who havethe knowledge and expertise to manage a complexand rapidly changing medical condition. Indeed, thescience of HIV evolves continuously and requiresmore regular training and updating of providersthan for many other conditions, making the needto attain and maintain current knowledge of clinicalstandards and practices a continuing challenge.Moreover, responding to HIV requires a workforceof professionals who can overcome the structuralbarriers that keep people out of care, includingpoverty, persistent stigma and discrimination, andhigh rates of co-existing medical conditions andmental health and substance abuse disorders. Further,It also requires a diverse workforce equipped tomitigate large disparities that exist in access to careand health outcomes.Once patients are retained in regular clinical care, thehealth system, with the support of the Ryan Whiteprogram, does a fairly good job of getting peoplewith HIV onto treatment and virally suppressed. Theweak link, however, is that once diagnosed, too manyare not linked to HIV clinical care or are unable tomaintain an ongoing relationship with an HIV careprovider. To do better, we need a broad range ofpaid clinical and non-clinical providers, as well ascommunity volunteers.Many people went into providing HIV care and services early in theepidemic when HIV was an emerging and frightening health problem.There is a whole generation of people (health professionals, socialservices providers, and community members alike) who have laboredheroically to bring us to the place where we are. Just as we are poisedfor so much progress, we are starting to witness a turnover where manyof these individuals are approaching the end of their careers.Today, we need to rejuvenate and re-energize the workforce by retainingand supporting existing workers and attracting new people to engage inHIV care, whether as a primary professional focus or as part of broaderefforts to meet community health care needs.
To assist policymakers in thinking about how theRyan White program can most effectively supportthe HIV workforce today and build the workforcefor the future, this brief examines three issues:1IDENTIFYING AND RESPONDINGto the needs of the HIV non-clinical workforce2RECRUITING, SUPPORTING,AND RETAINNGclinical care providers3BETTER INTEGRATINGpeople with HIV as critical contributors to the HIV workforce
5LEVERAGING THE RYAN WHITE HIV/AIDS PROGRAM TO BOLSTERTHE HIV CLINICAL AND NON-CLINICAL WORKFORCEIDENTIFYING AND RESPONDINGTO THE NEEDS OF THE HIVNON-CLINICAL WORKFORCEFor purposes of this brief, when we talk about thenon-clinical workforce, we are referencing a diverseworkforce typically employed by community basedorganizations or other entities that do not provideHIV primary care or specialty care services, as well asclinics, hospitals, and other health care entities. Thetypes of professionals includes include social workers,case managers, test counselors, peer navigators,benefits counselors, re-engagement specialists,rehabilitation counselors, and others. Ideally,these individuals do not operate independently associal services providers, but are either directly orindirectly working in support of an integrated careteam. The next phase of development of the RyanWhite program and the development of new HIVmodels of care more generally will likely involvebetter integrating HIV prevention and care providersand strengthening the integration of non-clinicalprofessionals within clinical care teams. This isneeded to support people with HIV to access healthcare services, navigate the health system, initiateantiretroviral therapy (ART), adhere to ART, take stepsto maintain health, and re-engage people who havestopped participating in regular health care.The need for non-clinical professionals is not new.What may be new, however, is an increased focus onprioritizing specific roles for these providers, suchas (a) benefits counselors who are needed as morepeople gain access to insurance and struggle withnavigating new and changing health systems, and (b)re-engagement specialists who are trained to identifyand work with clients who have stopped engaging inHIV care in order to bring people back into regularand appropriate HIV health care.We often look to community based organizations to provide leadershipin linking people to care, re-engaging people who have fallen out ofcare, and supporting people to navigate the health system and remainadherent to treatment. The most effective programs, however, often arethose where these community functions are tightly integrated with themedical care team.Our workforce training efforts need to reflect this reality and providetraining that facilitates greater integration.
6LEVERAGING THE RYAN WHITE HIV/AIDS PROGRAM TO BOLSTERTHE HIV CLINICAL AND NON-CLINICAL WORKFORCEPOLICY RECOMMENDATIONS FORTHE RYAN WHITE PROGRAMENCOURAGEASSESSENHANCEFURTHER INTEGRATIONAND CO-LOCATION OF NONCLINICAL PROVIDERS INCLINICAL CARE TEAMSTHE NEED FOR SPECIFICTYPES OF NON-CLINICALPROVIDERS AND EXPANDSTAFFING CAPACITYCOLLABORATION AMONGTHE SEPARATE RYANWHITE PROGRAMS IN THETRAINING OF NON-CLINICALPROFESSIONALSA legacy of the Ryan Whiteprogram and an ongoing partof the structure of the programis that community-based nonclinical providers often are fundedindependently of clinical providers.While some models exist or arebeing tested to bring more ofthese functions into the clinicalsetting, that is not always the bestapproach. Policymakers may wishto consider structural changesto how funding is awarded andgrant outcomes are establishedto better align responsibilities andincentives of clinical and nonclinical providers so that they workto achieve the same outcomes,benefit from collaboration, andminimize competition betweenagencies providing these essentialfunctions. As part of this type ofexercise, consideration shouldbe given to task shifting, andpotentially strengthening the roleof nurse practitioners to play anenhanced role as clinical providersand non-clinical providers to takeon expanded roles in supportingengagement and re-engagementin care.1As we seek to improveengagement in care along theHIV care continuum (whichencompasses stages of care fromHIV diagnosis to viral suppression)and as there is growingenthusiasm for more integratedcare delivery models, policymakersshould assess specific workforceneeds and prioritize training andcapacity building for specificfunctions. As more people gainaccess to insurance coverage,they often have challengesnavigating insurance systems,filing complaints or appealswhen services are denied, andtroubleshooting billing or accessissues. Trained and experiencedbenefits counselors and insurancenavigators can also support thebest, most effective use of limitedRyan White resources by ensuringfull access to insurance benefitsand other