HIV AIDS Care and Support

Care and Support for People Living with HIV/AIDS The President’s Emergency Plan for AIDS Relief Presenters: • Ana Bodipo-Memba, USAID, Co-Chair, USG Palliative Care Technical Workgroup • Sara Bowsky, USAID, HIV Care and Support Advisor • Julie Chitty, OGAC, HIV/AIDS Palliative Care Advisor Presentation Overview • The Emergency Plan and HIV/AIDS Care and Support • Terms and Definitions • Delivering Quality Community and Home Based Palliative Care • Country Examples President’s Emergency Plan for AIDS Relief • January 2003: President Bush announces Emergency Plan for AIDS Relief • The U.S. is devoting $15 billion to ongoing bilateral programs in more than 120 countries • Several partners carrying out these bilateral programs • Significant commitment: 5 year/$15 billion – largest international health initiative in history • Global response: – 120+ countries – 15 special focus countries Accountable: – treat 2 M, prevent 7 M, care for 10 M PLWHA & OVC • Sustainable: – fundamental approach - supporting national strategies, building future capacity “Sense of Congress” for Distribution of Funds Orphans and Vulnerable Children 10% Prevention* 20% Treatment** 55% Palliative Care 15% *33% of prevention funds should be for abstinence-until-marriage programs **75% of treatment funds should be for purchase and distribution of ARVs Source: Public Law 108-25 Terms and Definitions WHO Definition of Palliative Care ... an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual (WHO, 2002) Palliative Care is NOT • Supportive care without pain and symptom control • Pain and symptom control without supportive care - Dr. Anne Merriman, Hospice Africa Uganda Terms and Definitions Delivery Systems – – – – – Types of Palliative Care Services • Routine clinical care, incl. prevention & management of TB and other OIs, pain & symptoms, malignancies • Psychological care • Spiritual care and bereavement care • Social and community support, mobilization Home based care Community based care Facility-based care Hospices Workplace Clinical/medical care Life clos ure and end of l ife care Bereav ement care and link to OVC care Terminal Stages Death Diagnosis Psychologica l, social, spiritual, bereav ement and non-cl inica l preventive care services. Identification of OVCs and link to OVC care Evidence Based Preventive Care Interventions “Preventive Care Package” – • Cotrimoxazole prophylaxis • Malaria prevention: insecticide-treated bednets • Effective TB interventions: screening and prevention of development of active TB, INH prophylaxis • Hygiene measures: personal (hand washing, etc); safe drinking water; nutrition • Targeted nutrition support • Counseling and testing • Prevention counseling/condoms • Linking to immunizations Other Critical interventions: ART adherence support, Pain/symptom control, Psychological care, Spiritual care, Bereavement Care, Social care (including community mobilization) Community Home Based Care (CHBC) Community and Home-Based Care and Palliative Care Fundamental distinction: • Community and home-based care has existed for decades in resource poor settings, however, it is increasingly used as a delivery system for many services. • Palliative care is specialized care that is offered wherever it is applicable – in the home, community and facility and must have three essential elements: – Access to medications including opioids – Education – Government commitment, policies Community Home Based Care CHBC can be an available, affordable means of increasing access and adherence to prevention, treatment, OVC care and a broad range of palliative care services CONSTRAINTS: • Quality often poor – “neglect” • Confusion on various models & outcomes • Urgent need to scale-up and have adequate coverage • Utilizing and supporting community caregivers and building upon indigenous care practices • Missed opportunities to use CHBC programs as a mechanism to ensure the continuum of palliative care services • Inconsistent training standards • Inconsistent and lack of essential palliative care medications Community Home Based Care CHBC is often missing: • Child-specific interventions, family based approaches • Pain/symptom control • OI prevention/treatment • Bereavement counseling • Appropriate nutrition interventions and integration with food security programs • Effective “bottom up” referrals • Strong OVC , ART and prevention program integration (especially “B” messages & ART support) • Supervision systems and quality assurance mechanisms • Adequate support for caregivers Evidence: Impact of Community Home Care Models • Paradox: wealth of experience, dearth of evidence • Finding “what works” requires identification of outcomes – Improved quality of life – Reduction in morbidity and mortality – Cost effectiveness – Quality care – Delivery of palliative care vs. delivery of supportive community care Stepping Forward: Community Home Based Palliative Care • Utilize an approach that fits with the country and local context • Determine program scope, outcomes, geographic coverage within the network of available community support and health facilities • Match appropriate commodities, food, drugs, HBC kits according to program need • Expand the menu of available services via strong networks, partnerships and building active referral systems between CHBC and facility services • Expand targeted training, especially nursing skills and decision making skills at a community level • Review and support renumeration and care of providers, including incentives for community caregivers Stepping Forward: Community Home Based Palliative Care • Capacity building of NGOs/CBOs/FBOs • Develop/utilize mechanisms to assure quality – Develop/utilize minimum standards, protocols to deliver care – Supervision systems – Integrating quality measures as program deliverables – Integration of services & strengthen active referrals – HIV prevention, TB, C/T, ART, OVC, child survival interventions, social welfare, chronic disease care, etc. • Translate national policy, quality standards, guidelines into action Emergency Plan Supported Palliative Care Programs: Country Examples TASO: Pioneers in Quality Community Community Care Uganda PEPFAR-funded through USG/UGANDA Hospice Africa Uganda: Integrating pain and symptom control and end of life care into support services PEPFAR-funded through USG/UGANDA Partnership between Communities and Selian Lutheran Hospital and Hospice in Tanzania PEPFAR-funded through USG/TANZANIA CARE/TUMAINI Program Nurse Supervision, Counseling and Integration with ART and OVC Support PEPFAR-funded through the USG/Tanzania CARE/TUMAINI Program Building the Capacity of Hospices and the National Government to Delivery Quality Palliative Care -- Hospice Palliative Care Association of South Africa PEPFAR-funded through USG/South Africa Development of Quality Improvement & Accreditation Program with 70+ Member Hospices PEPFAR-funded through USG/South Africa Photos courtesy of South Coast Hospice, SA Establishment of Centers for Palliative Learning, Development of Curricula and Training Programs for Health Professionals PEPFAR-funded through USG/South Africa Photos courtesy of South Coast Hospice, SA APCA Partnership with the African Palliative Care Association (APCA) Twinning APCA and the Zambian Palliative Care Association to support palliative care training and expertise in Zambia APCA PEPFAR-funded through USG/Zambia, SUCCESS program AP CA National Palliative Care Training Partnership with the Government of Botswana Hon. Minister of Health Prof. Sheila Dinotshe Tlou 2005 National Training Launch PEPFAR-funded through USG/BOTUSA and USAID/RHAP Programs Thank you For further information, please visit: www.state.gov/s/gac