Culturally Relevant Linkages to Care Matt Ignacio, MSSW Tohono O'odham Jamie Folsom, MS Oklahoma Choctaw Project Managers - National Native American AIDS Prevention Center
National Native American AIDS Prevention Center Our Mission: To address the impact of HIV/AIDS on American Indians, Alaska Natives, and Native Hawaiians through culturally appropriate advocacy, research, education, and policy development in support of healthy Indigenous people.
NNAAPC In Fulfillment of That Mission: NNAAPC helps organizations that serve Native communities to plan, develop and manage HIV/AIDS prevention, intervention, care and treatment programs
What is meant by Linkage to Care Linkages to Care: an essential process that connects (and re-connects) HIV-positive individuals into HIV care and antiretroviral therapy. Thus, improves the holistic wellness outcomes of the patients and reduces the spread of HIV. It would be great if we could do it all, but not realistic Others have the resources and expertise to handle what you may not have the resources or expertise to do
Describe Linkages to Care Supportive services often linked to retaining HIVpositive individuals into care: Case management Mental health services Substance abuse treatment Transportation Housing assistance
Describe Linkages to Care, cont d Fundamentally, we don t want people to slip through the cracks. We want to suppress HIV viral load reduce transmission. It s an uphill battle even for those who are familiar with systems. There is help out there it s just a matter of knowing where to go.
Describe Linkages to Care, cont d Having positive results from only one HIV antibody test should not be a barrier to linkage to care to a Ryan White HIV/AIDS Program (RWHAP) funded clinic, or other HIV care providers, since the majority of people receiving a positive result from a single test have HIV infection and would benefit from quick linkage to ongoing care and prevention services. E.g. Reactive rapid test individual is counseled on the likelihood of infection and the small possibility of a false positive result. Department of Health and Human Services (2013)
Effectiveness of HIV Medication For those who are HIV-negative, what is PrEP? PrEP is short for PreExposure Prophylaxis May be part of comprehensive HIV prevention services HIV negative people who are at high risk, take antiretroviral medication daily to try to lower their chances of becoming infected (2012) www.cdc.gov/hiv/prep
Effectiveness of HIV Medication To date, PrEP has been shown to be effective in men who have sex with men (MSM) Heterosexual men and women At present, unknown if this is effective with IDUs, pregnant and breastfeeding women (negative) (2012) www.cdc.gov/hiv/prep
Why Linkages to Care? Many Native, including the general public, living with HIV/AIDS have little or no experience navigating the labyrinth of paperwork, regulations phone calls! Issues of stigma, shame, fear, homophobia and other can be a hindrance Where do I begin?
Challenges Can result in the person shutting down Results in a lost population of Native people living with HIV/AIDS who are disenfranchised at every level: Live without health care Find systems threatening Remain stuck Feel hopeless Continue to use substances Loss of life
Of persons who were diagnosed with HIV, fewer American Indian/Alaskan Natives survived, with only 88% living longer than 3 years (CDC, 2012). This is the shortest survival rate out of every racial/ethnic category.
Continuum of Engagement in Care Not in care Fully engaged Unaware of HIV status (not tested or never received results) Aware of HIV status (not referred to care; didn t keep referral) May be receiving other medical care but not HIV care Entered HIV primary medical care but dropped out (lost to followup) In and out of HIV care of infrequent user Fully engaged in HIV primary medical care
Numerous studies document high rates of attrition within the first year after enrollment in HIV care (Mugaverno, Norton and Saag, 2011) Furthermore Poor retention in care is linked with inconsistent ART receipt and adherence Challenges with receiving assistance and educating on the importance of adherence (ex. Diabetes model of adherence education) At the clinic-level, delays from initial call to initial medical visit have been associated with failure to engage in HIV care Act fast - move fast! Mugavero, M., Norton, W., & Saag, M. (2011). Health care system and policy factors influencing engagement in HIV medical care piecing together the fragments of a fractured health care deliver system. Clinical Infectious Diseases, 52(S2): S238-S246.
Additionally Lack of flexibility of clinic hours is a barrier to consistent HIV care Work schedules, dependent care, distance to travel have to be taken into consideration Non-culturally relevant services is a barrier to consistent HIV are Respectful of communication, literacy and power dynamics Remembering shame, stigma, fear, ambivalence, denial, anger are all part of the process! Challenges with patient/provider relationships is linked to adherence or non-adherence to care Need for more training activities for providers and clinic staff Ibid.
HIV TREATMENT CASCADE Content
HIV Treatment Cascade, cont d For every 100 individuals living with HIV in the U.S., it is estimated that: 80 are aware of their HIV status. 62 have been linked to HIV care. 41 stay in HIV care. 36 get antiretroviral therapy (ART). 28 are able to adhere to their treatment and sustain undetectable viral loads. http://blog.aids.gov/2012/07/hivaids-treatment-cascade-helps-identify-gaps-in-care-retention.html#sthash.nqub2cii.dpuf
HIV Treatment Cascade, cont d In short, CDC estimates that only 28% of the more than 1 million individuals in the U.S. who are living with HIV/AIDS are getting the full benefits of the treatment they need to manage their disease and keep the virus under control. In other words, only 1 out of 4 HIV positive individuals in the U.S. have a suppressed HIV viral load. http://blog.aids.gov/2012/07/hivaids-treatment-cascade-helps-identify-gaps-in-care-retention.html#sthash.nqub2cii.dpuf
Lastly, let s look at some culturally-relevant and strengths-based approaches to engaging HIV-positive individuals into care!
Linkage to Care What Can We Do? How Do We Do It?
Engagement into Care Humanizing the process Empathy Patience Roll with resistance Sitting with discomfort Can do attitude Celebrating the small successes!
We Strive to Provide Services Culturally Affirming that Are: Beyond cultural competency to cultural humility Holistic approaches to wellness (Native world views) Inclusive of spiritual, traditional and cultural needs Understanding the role of family and community
We as providers Work from a strengths-based perspective As opposed to a deficit-model Locating the problem within the individual Not taking into account the individual s environment, skill-sets, knowledge, access to, etc Non-judgmental (multiple attempts to change) Identify strengths Inherent, cultural, survival, spiritual, etc
We as providers also Work from a Client-Centered Approach Client s needs are met, not ours (e.g. timelines) Meet the client where he or she is at (e.g. motivation, drug use, sexual behaviors)
As providers, after a positive HIV Linking newly diagnosed individuals into medical services is the final step in HIV testing On-going support test Linking the individual with other services needed is part of our practice
Building trust is the key!
Linkage to Care Empowering individuals to manage their own care reduces the need for on-going case management Is this a realistic goal to start with when working with AI/AN individuals? Consider the historical implications for medical care Longstanding mistrust between western and traditional approaches to healing Services change, staff change, funding changes, services come and go Other needs first: acceptance, substance use, support systems, basic needs (food)
Positive Wellness NNAAPC is developing a Native-specific linkages to care model based in: Strengths-Based Approaches to Care Client-Centered Counseling Addressing historical factors and the reality of the lives of Native people Building trust with the community, with partner health organizations and with the clients An adaptation of the CDC LTC model ARTAS
Linkages to Care What we can do from here: Native HIV-Positive individuals: Education (explaining terms) Ongoing support for medication adherence (other health disparities have done this) Risk-reduction interventions (reducing the #) Condoms, syringes and other interventions HIV Clinical Research opportunities Ongoing support, resourcefulness, optimism
Linkages to Care What we can do: Native HIV-Negative individuals: Education (on-going) PrEP Testing Community awareness (social marketing) Risk-reduction interventions (proper use of condoms) Condoms, syringes and other interventions HIV Clinical Research opportunities Verbal support, resourcefulness and optimism
Lastly, you have the opportunity Build bonds of trust to Attend on-going cultural trainings for providers Integrate cultural strengths such as resilience, survival and reminding the individual of their role within the larger HIV-positive community, network Advocate from the front-line
Thank you! Matt Ignacio MIgnacio@NNAAPC.org Jamie Folsom JFolsom@NNAAPC.org