Ratna Devi

India – The current scenario
 India spends only 5% annual gross domestic product

(GDP) on health care  Of this, most of the expenditure (about 80%) is private out-of-pocket.  3.1 million additional households slip to levels below the poverty line ($1 per day) per annum as a result of hospitalization expenditure.  Presence of Rogi Kalyan Samitis (RKS)(Patient welfare groups) in government hospitals – limited role

 Prescription practices are physician led with wide
   

variance in protocols Availability of over the counter drugs with no prescription Poor health literacy Wide range of practitioners. Continuum of care - ?

Health Sector Reforms and Patient groups
 Universal health coverage – 12th plan
1. 2. 3. 4. 5. 6.

Health fınancıng and fınancıal protectıon Health sector norms Human resources for health Communıty partıcıpatıon and engagement Access to medıcınes Management and Instıtutıonal reforms

 National health bill – tabled and waiting  Several national programs to address some of the

major health issues – CVDs, Diabetes, Stroke, Cancer, Mental health, HIV – all vertical  Except HIV, no patient involvement in Planning

My Experience
 Rare diseases – Hemophilia and Thallasemia groups
 Diabetes and renal groups  HIV and positive network

Hemophilia and Thallasemia groups
 Started with a small group of patients, relatives and

physicians.  Initial advocacy for availability of medicines – AHF not available in country and imports very expensive  Expanded by registering individual societies in very state – National registry created  Inclusion of PSS, Training and rehabilitation, education for children, community funds for emergency care, livelihood and job opportunities

Diabetes and renal groups
 Created small groups through village health

committees and women's groups  Linked to health centres and physicians for regular checks and medicines.  Support system for emergency management and referral.  Village patient groups involved SHGs, teachers, PRIs, VHC, Local NGOs

 School, Village and community activities for wider

dissemination of knowledge  Conducted 5 National and regional roundtables to raise awareness and include key stakeholders in decision making  Supported by Private sector (pharma companies) government and physicians themselves.

Patient groups – what worked
 Belief in the cause
 Advocates for the cause – famous personalities,

political affiliation, commitment from physician community  Donor funding for setting up awareness generation camps, training, workshops, research  Rehabilitation, livelihood options and training

 Difficult to mobilise people into groups
 Lack of funding and resources for group activities  Except for HIV, commitment from government and

other agencies still to build up  In NCDs and Mental Health mostly physician led