Dr.  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),  Village  Health  and  Sanitation  Committees,  DHS    in  government  hospitals  –  limited  role  

Cont…..  � 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  Pa;ent  groups  � Universal  health  coverage  –  12th  plan  � 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  every  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  

Cont…..  �  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.  

Pa;ent  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  

Challenges  � 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  �  India  is  very  large  and  diverse  

The  movement  has  just  started  and  there  is  lots  of  work  to  do  

 THANKS