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in+care Newsletter  Nov 2011  |  Issue 2  


National Campaign to Improve Retention in HIV Care
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In This Issue
Local Quality Champions Wanted!
Upcoming Events
Journal Spotlight
Case Study: Seattle and King County

14 days

until the data submission deadline

The database is ready, so please begin entering your data at: incarecampaign.org/database

Campaign Updates
Number of providers and sub-providers that have joined the campaign:
Number of HIV patients served by participating providers (not unduplicated):
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Campaign Headquarters

National Quality Center (NQC)

New York State Department of Health AIDS Insitute


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Local Quality Champions Wanted!

The National Quality Center (NQC) is excited to offer Campaign participants this opportunity to stay abreast of Campaign news, progress, and upcoming events.

A major benefit of participating in the Campaign is the ability to meet with other providers in your region to discuss patient retention in HIV primary care. The Campaign is seeking Quality Champions who will create peer learning opportunities for HIV providers and agencies to locally meet and discuss issues related to retention in HIV care. The goal of the Quality Champion is to facilitate regional peer exchanges and to extend the reach and impact of the Campaign.

To become a Quality Champion presents a great opportunity to be involved in improving HIV on the system-level in your region. In return, Champions will be supported by NQC. Champions will be given opportunities to teleconference with all the other Champions from across the country to share successes and challenges. The structure provides both Campaign leadership and peer support for Champions throughout the duration of the Campaign.

Quality Champions will have several opportunities to be a key local player for the Campaign. They are expected to convene two face-to-face or teleconference meetings within their region with the assistance of the NQC in+care staff. Where possible, Champions should leverage existing meeting structures to build synergy between initiatives and to prevent meeting-fatigue. Finally, Champions will report all activities back to NQC as part of the ongoing evaluation process.

Take a leadership role in this important national initiative today by signing up to become a Quality Champion! If interested, please email: incare@NationalQualityCenter.org

Upcoming Events  

December Campaign Webinar:

Wednesday, December 7, 2011 at 1pm ET


Connect to the Webinar with the following information:


Dial-in#: 866.394.2346
Participant Code: TBD


Keep up-to-date with the latest in+care events through our webpage: http://incarecampaign.org/index.cfm/75283

Journal Spotlight: Gardner et al. "The Spectrum of Engagement in HIV Care and its Relevance to Test-and-Treat Strategies for Prevention of HIV Infection"

A journal spotlight from yesterday's Meet the Author event:

Gardner EM, McLees MP, Steiner JF, del Rio C, and Burman WJ, "The Spectrum of Engagement in HIV Care and its Relevance to Test-and-Treat Strategies for Prevention of HIV Infection"; Clin Infect Dis. (2011) 52 (6): 793-800.  


In this article published in the March 2011 edition of the Clinical Infectious Diseases journal Gardner et al. review current HIV/AIDS research that illustrate the spectrum of engagement in HIV care and then seek to quantify the distinct parts of the spectrum.


The first aspect of the engagement spectrum addresses the number of individuals who are unaware of their HIV status. The research cited in this review estimates that of the 1.1 million people living with HIV in the United States or 1 in 5 are unaware of their HIV status. Persons who are unaware of their status have a higher risk of transmitting HIV to others. Next, the authors move along the spectrum to highlight linkage to care. 1 in 4 individuals aware of their infection are not linked to care in a timely manner. Those individuals who experience longer delays in linking to medical care are more likely to progress to an AIDS diagnosis. Non-linked individuals may also contribute to ongoing HIV transmission within their communities. Combining the data for those unaware of their HIV status and those not linked in a timely manner, Gardner et al. estimate that 2 in 5 individuals living with HIV in the U.S. have not seen an HIV primary care doctor.  


Regarding retention in care, the authors state that 3 in 5 HIV-infected individuals are not engaged in regular HIV medical care and consequently do not have consistent access to antiretroviral therapy (ART). Lack of regular engagement is associated with poor health outcomes and increased mortality. Continuing across the engagement spectrum Gardner et al. examine the role of ART for those engaged in care and comment that 80% of those in-care should receive ART. However, 25% of those individuals are not on ART; primary reasons include prematurely stopping therapy, non-adherence, and resistance as barriers for effective ART use.


Overall, the issues that impact the HIV engagement continuum are lack of HIV diagnosis, delayed linkage to HIV care, poor retention in HIV care, and ART use and effectiveness. Gardner et al. posit that 3 out of 5 individuals living with HIV in the U.S. are not receiving regular medical care. Further, only 19% of HIV-infected persons in the U.S. have an undetectable viral load. This leaves approximately 4 in 5 individuals with HIV in the U.S. having a detectable viral load.


Based on this research it is evident that a multi-pronged approach is needed to address issues across the engagement spectrum to improve retention in care and decrease HIV incidence. Gardner et al. graphically display this point in their paper and state the result of the proposed engagement strategy for individuals with an undetectable viral load. One single strategy is not enough to impact a population. Gardner et al. call for engagement strategies across the spectrum to meet individuals where they are at in terms of their needs, which will ultimately decrease HIV transmission across the country. Taking a cue from this research, what is your multi-faceted approach?  



Seattle and King County - Coordinating Data and Providers to Bring Clients Back to Care

Communication and coordination are the two key elements that Jeff Natter, Manager of the Ryan White Part A Program for Seattle and King County, attributes to the success of the Not In Care (NOTICE) Project. This Project combines the expertise of the Part A program staff and the Epidemiological Unit from the Health Department to identify those persons living with HIV in Seattle and King County who are not retained, and bring them back into care.


In preparation for the roll out of the NOTICE Project, Jeff and staff from the Public Health's Epidemiology Unit individually contacted Ryan White medical case managers and area HIV medical providers in the county. Staff explained the NOTICE Project, listened to concerns and barriers identified by the case managers and medical providers, and stressed the importance of the health department working in conjunction with them to bring back lost to care clients. The team also worked with consumers to explore how they would feel about the health department reaching out to help them return to medical care.


At the beginning of the NOTICE Project the team utilized the power of the existing HIV surveillance system along with the State lab database. This helped determine which patients had not completed a CD4 or viral load test in the past year. For example, the system identified approximately 7,900 persons living with HIV in Seattle and King County. Of these individuals, the State lab database matched approximately 5,400 CD4 or viral load results. This left approximately 2,500 persons that had not received a CD4 or viral load test and, thus, were not retained in care.


The NOTICE Project team further investigated other data systems and held discussions with medical providers, case managers, shelter staff, support service agencies, and other Ryan White-funded programs. Through this work they discovered of the roughly 2,500 out of care patients:

  • 42 were deceased
  • 1,700 individuals moved out of the county
  • 25 were data errors (duplicates or false positives)

This left approximately 730 pending cases that were truly not retained.  


When asked how other system-level grantees could implement a similar project, Jeff stressed that laying the ground work with stakeholders is crucial to getting support and buy-in. Another key element is access to the Health Department's epidemiology staff who are willing to work with a retention team on a consistent basis. Using existing data systems rather than myriad outreach programs proved to be a successful strategy in saving money, reaffirming confidence in existing epidemiological data systems, and identifying those clients who were truly not retained in care.

Connect. With patients.
Collaborate. With a community of learners.
Change. The course of HIV. 

incarecampaign.org  |  212-417-4730