Retention: What It Means for You June, 2012 This presentation provides an overview and introduction to Partners in+care. Partners in+care is one part of the in+care Campaign – a national effort to improve the health of people living with HIV/AIDS by helping them stay in care or return to care. Before presenting this webinar, facilitators may want to (a) review the information available on the Partners in+care web site [www.incarecampaign.org – click on the “Partners” tab], (b) review the webinar “Retention: Partners Make It Happen” [available on the Partners in+care web site], and (c) review the articles in the Partners in+care Toolkit [available on the Partners in+care web site]. You can also contact in+care Campaign staff for assistance to help your prepare your presentation. incare@NationalQualityCenter.org or 212.41.7370. 1

Purpose for in+care Campaign Retention: What It Means for You Purpose for in+care Campaign The purpose for the in+care Campaign is to improve health and prevention by keeping and getting more people living with HIV/AIDS in care. The in+care Campaign is sponsored by the Health Resources and Services Administration HIV/AIDS Bureau in coordination with the National Quality Center. The in+care Campaign is a national effort to improve the health of people living with HIV/AIDS by helping Ryan White grantees, providers and people who use Ryan White services improve retention in HIV care. Visit www.incarecampaign.org

Five Parts of the in+care Campaign Retention: What It Means for You Five Parts of the in+care Campaign There are five parts to the in+care Campaign. One: Ryan White grantees and providers around the country are implementing quality improvement projects designed to improve retention in HIV care. They are also collecting and reporting data to measure the results of their efforts. Two. The in+care Campaign is offering a regular series of technical assistance and meet-the-author webinars to help Ryan White grantees and providers learn more about what they can do to improve their retention efforts. Three. The in+care Campaign has a team of “coaches” to work with Ryan White grantees and providers to help them implement quality improvement projects to improve retention. Four. There are groups of Ryan White grantees, providers and consumers around the country who are connecting with each other to share information and learn together about what they can do to improve retention. These groups have volunteer “champions” leading their efforts. And, finally, Five. Just as people living with HIV/AIDS need to be partners in their care, they need to be partners in the in+care Campaign. Partners in+care is designed to engage people living with HIV/AIDS and their allies in the in+care Campaign. Visit www.incarecampaign.org

Partners in+care Purpose Retention: What It Means for You Partners in+care Purpose Successful results in HIV care depend upon partnership between consumers and their providers. So does the in+care Campaign. You – people living with HIV/AIDS are important partners in your care and you are important partners in the in+care Campaign. Successful management of HIV as a chronic disease requires many working together in partnership: health care “system,” health care providers – doctor and others, HIV service providers, friend, family and others in our community, but one person who is on the job – who needs to be on task 365 days a year is the person living with HIV/AIDS.

Through Partners in+care we are trying to promote retention. Retention: What It Means for You Pop-up Question Through Partners in+care we are trying to promote retention. What is RETENTION? Question for discussion. Visit www.incarecampaign.org

1/3 to 2/3 of PLWHA in US are not in regular care Our Goal What We Want to Change 1/3 to 2/3 of PLWHA in US are not in regular care 17-40% of PLWHA who know status are not in regular care 40% of patients newly diagnosed did not see provider within 6 months Successful HIV treatment requires sustained engagement in HIV care. Opportunistic illnesses are most common in individuals who do not know their HIV status and in those who are not receiving HIV care. Summary: In summary, the problem is that way, way too many people living with HIV are not getting the regular kind of health care services they need to take full advantage of what we can do to keep them healthy and alive. We need to do better. Much better.

Continuum of Engagement Our Goal Continuum of Engagement The term “engagement” in care describes a range – a spectrum or continuum – of care for people living with HIV/AIDS. HRSA – the federal agency that promotes access to and the quality of care for people living with HIV/AIDS – represents this continnum as ranging from initial diagnosis to full engagement in care. People can move in both directions across the continuum. The goal is to achieve full engagement in care, but people may go on to drop out of care for months or years at a time. “Retention” is the name we give to the work we do to help people from dropping out of care or to help them get back into care. In other words, Retention is about helping those who are receiving some medical care, are lost to care or are using care intermittently make the changes to be “fully engaged.” While getting tested and linked to care are absolutely important parts of the continuum of engagement for HIV care, “retention” is that set of activities that we undertake to keep people connected or to get them reconnected once the initial “link” to care has been made through testing and linkage activities. Retention address those stages of engagement with the red dots or arrow. The black dots note linkage activities that are not the primary focus for retention.

Our Goal Being Engaged in Care What does it mean to be fully engaged? It means, routinely attending provider visits for primary HIV care. Generally, we are talking about attending one visit with your HIV care provider – the person who can prescribe HIV treatment medications – at least every six months. It also means persistence – making these routine visits year-after-year.yea r.

Stay in care / Return to care Our Goal What Is Retention Stay in care / Return to care Retention –having a routine for seeing your doctor/health care provider on a regular schedule Doing this persistently – year-after-year-after-year

What are the Advantages? Our Goal What are the Advantages? There is a relationship—a seemingly obvious relationship— between regular medical visits and improved health and reduced mortality. Research published in 2010 provides the first data to demonstrate the survival advantage of regular HIV care. [Giordano, 2010] Key Results: “Retention in Care: A Challenge to Survival with HIV Infection,” 2010. Giordano, et. al. -- A study of HIV retention involving persons newly identified as having HIV infection at US Department of Veterans Affairs hospitals or clinics between 1997-98. This study demonstrates that retention in care for HIV infection after starting antiretroviral therapy is often poor. Patients with poor retention in care did not achieve the same CD4 cell count, plasma HIV concentration [viral load reduction], and survival benefits as those who were retained in care. Strategies to retain persons in long-term care need to be developed, tested, and implemented to maximize the benefit from currently available medical care. Poor retention in care is associated with less improvement in CD4 cell count and less reduction plasma HIV level [viral load] at 1 year. The main outcome [for study participants who had good retention] was survival. Secondary outcomes were changes from baseline in CD4 count and plsma concentration 1 year after initiating antiretroviral therapy and retention in care.

What do you know about HIV drug “treatment adherence?. Retention: What It Means for You Pop-up Question What do you know about HIV drug “treatment adherence?. How is retention similar? Question for discussion. Visit www.incarecampaign.org

Partners in+care: You Chance to Learn More About Retention in HIV Care Our Goal Partners in+care: You Chance to Learn More About Retention in HIV Care Self-care – learning more Reaching out to others – peer-support, peer navigators, friends and family “Systems” that work with us by working with them Visit www.incarecampaign.org – “Partners” Tab

Sign up for Pi+c Network www.incarecampaign.org – “Partners” tab Visit Web www.incarecampaign.org - “Partners” tab Sign up for Pi+c Network www.incarecampaign.org – “Partners” tab Join Facebook Send email to incare@NationalQualityCenter.org – “Facebook” in subject line Campaign Headquarters: National Quality Center (NQC) 90 Church Street, 13th floor New York, NY 10007 Phone 212-417-4730 13