Why	
  do	
  we,	
  men	
  who	
  have	
  sex	
  with	
  men,	
  not	
   access	
  HIV	
  treatment	
  services?	
   	
   Challenge	
  	
   The	
  Karnataka	
  State	
  AIDS	
  Prevention	
  Society	
  (KSAPS)	
  is	
  the	
  nodal	
  agency	
  for	
   implementing	
  the	
  targeted	
  interventions	
  National	
  AIDS	
  Control	
  Programme	
   (NACP)	
  in	
  the	
  state	
  of	
  Karnataka	
  in	
  South	
  India.	
  Despite	
  KSAPS’s	
  achievements	
   in	
  the	
  scaling	
  up	
  of	
  HIV	
  care	
  and	
  support	
  services,	
  HIV	
  prevalence	
  among	
  the	
   sexual	
  minority	
  group,	
  men	
  having	
  sex	
  with	
  men	
  (MSM),	
  in	
  Karnataka	
   continued	
  to	
  show	
  an	
  increase.	
  Prevalence	
  among	
  MSM	
  at	
  5.4	
  per	
  cent	
  made	
   Karnataka	
  one	
  of	
  the	
  nine	
  states	
  in	
  the	
  country	
  with	
  over	
  five	
  per	
  cent	
   prevalence	
  in	
  this	
  group.	
  KSAPS	
  contracted	
  my	
  services	
  to	
  answer	
  the	
  question,	
   “How	
  can	
  HIV	
  prevention	
  and	
  care	
  among	
  MSM	
  in	
  the	
  state	
  be	
  made	
   more	
  effective?”	
   	
   Selection	
   Gaining	
  critical	
  insights	
  meant	
  understanding	
  the	
  ecosystem	
  in	
  which	
  the	
   delivery	
  of	
  care	
  and	
  services	
  was	
  located	
  and	
  listening	
  to	
  different	
  stakeholders.	
   In	
  particular,	
  it	
  was	
  important	
  to	
  understand	
  why	
  despite	
  a	
  decade	
  of	
  stigma	
   reduction	
  efforts,	
  MSM	
  continued	
  to	
  be	
  hesitant	
  to	
  visit	
  the	
  testing	
  and	
   treatment	
  centres	
  located	
  within	
  the	
  government	
  hospitals.	
  Journey	
  Mapping,	
   mentioned	
  in	
  The	
  Good	
  Kitchen	
  story,	
  along	
  with	
  open	
  ended	
  discussions	
   were	
  used	
  to	
  trace	
  the	
  experience	
  of	
  MSM	
  trying	
  to	
  access	
  care	
  and	
  treatment	
   services.	
  However,	
  the	
  experience	
  of	
  accessing	
  a	
  service	
  was	
  also	
  dependent	
  on	
   the	
  way	
  service	
  providers	
  engaged	
  with	
  the	
  care	
  seekers.	
  Hence,	
  discussions	
   and	
  dialogues	
  were	
  held	
  with	
  HIV	
  testing	
  centre	
  counsellors,	
  peer	
  and	
  outreach	
   workers,	
  and	
  laboratory	
  technicians	
  and	
  community	
  advocates.	
  Also,	
  MSM	
  is	
  a	
   diverse	
  group	
  in	
  itself	
  and	
  includes	
  men	
  who	
  identify	
  as	
  Panthis,	
  Kothis,	
  Hijras,	
   transvestite	
  and	
  others.	
  The	
  men	
  are	
  perceived	
  and	
  accepted	
  differently	
  in	
  their	
   communities	
  and	
  their	
  experience	
  of	
  navigating	
  the	
  healthcare	
  system	
  will	
  also	
   differ.	
  	
   	
   Application	
  	
   Across	
  three	
  districts	
  in	
  Karnataka,	
  MSM	
  with	
  different	
  self-­‐identities	
  narrated	
   their	
  stories	
  of	
  accessing	
  care,	
  starting	
  from	
  the	
  pre-­‐testing	
  process	
  to	
  accessing	
   the	
  HIV	
  treatment.	
  As	
  the	
  facilitator,	
  I	
  used	
  the	
  white	
  board	
  to	
  visually	
  trace	
   the	
  journey.	
  The	
  group	
  mapped	
  the	
  actions	
  required	
  of	
  them	
  at	
  each	
  step	
  of	
   interfacing	
  with	
  the	
  care	
  and	
  treatment	
  service	
  providers.	
  We	
  also	
  mapped	
  the	
   specific	
  barriers	
  that	
  caused	
  them	
  concern	
  and	
  discouraged	
  them	
  from	
   accessing	
  the	
  service.	
  Finally,	
  members	
  from	
  different	
  districts	
  and	
  groups	
  did	
  a	
   participatory	
  ranking	
  exercise,	
  to	
  prioritise	
  the	
  barriers.	
  Open	
  ended	
   discussions	
  and	
  dialogues	
  with	
  other	
  stakeholders	
  helped	
  gauge	
  the	
  health	
   system	
  and	
  programme	
  level	
  barriers.	
  Mind	
  Mapping,	
  which	
  looked	
  for	
   patterns	
  in	
  responses	
  showed	
  common	
  barriers	
  cited	
  by	
  different	
  stakeholders	
   and	
  three	
  levels	
  at	
  which	
  these	
  stood	
  –	
  individual,	
  programmatic	
  and	
  health	
   system.	
  Synthesis	
  of	
  insights	
  from	
  the	
  diverse	
  groups	
  helped	
  paint	
  an	
  overall

picture	
  showing	
  precisely	
  at	
  what	
  point	
  and	
  due	
  to	
  what	
  reason	
  MSM	
  tended	
  to	
   drop	
  out	
  from	
  the	
  HIV	
  treatment	
  service	
  access	
  chain.	
  	
  	
   	
   Insights	
   The	
  following	
  insights	
  emerged	
  from	
  the	
  process:

Ø Fear	
  of	
  being	
  identified	
  as	
  HIV	
  positive,	
  unwillingness	
  to	
  disclose	
  HIV

positive	
  status,	
  a	
  sense	
  of	
  fatalism,	
  lack	
  of	
  faith	
  in	
  the	
  efficacy	
  of	
  the	
   treatment	
  and	
  negative	
  perceptions	
  about	
  anti-­‐retroviral	
  treatment	
   medication	
  emerged	
  as	
  individual	
  level	
  barriers	
  to	
  accessing	
  services

Ø Procedural	
  delays	
  at	
  the	
  hospital,	
  mandatory	
  requirement	
  of	
  producing

an	
  identify	
  proof,	
  having	
  to	
  involve	
  family	
  to	
  initiate	
  treatment	
  and	
   discriminatory	
  treatment	
  by	
  the	
  paramedical	
  staff	
  at	
  the	
  centre	
  emerged	
   as	
  health	
  system	
  barriers.	
  Most	
  MSM	
  were	
  homeless	
  or	
  migrants	
  and	
   found	
  it	
  difficult	
  to	
  produce	
  proof	
  of	
  address.	
  The	
  threat	
  of	
  their	
  sexual	
   identity	
  and	
  positive	
  HIV	
  status	
  being	
  exposed	
  and	
  the	
  resultant	
  loss	
  of	
   social	
  support	
  and	
  potential	
  stigma	
  caused	
  them	
  to	
  drop	
  out	
  from	
  the	
   chain	
  of	
  treatment	
  access	
  when	
  family	
  involvement	
  was	
  necessitated.

Ø High	
  workload	
  of	
  the	
  HIV	
  counsellors	
  adversely	
  affecting	
  the	
  quality	
  of

engagement	
  with	
  the	
  MSM	
  as	
  they	
  had	
  to	
  manage	
  patients	
  at	
  multiple	
   centres	
  in	
  different	
  locations,	
  the	
  merging	
  of	
  care	
  centres	
  within	
  the	
   government	
  hospitals	
  that	
  were	
  too	
  far	
  for	
  the	
  MSM	
  to	
  access	
  and	
  high	
   attrition	
  of	
  counsellors,	
  who	
  are	
  often	
  the	
  only	
  person	
  to	
  know	
  about	
  the	
   HIV+	
  status	
  of	
  the	
  care	
  seeker	
  emerged	
  as	
  programmatic	
  barriers.

A	
  key	
  insight	
  from	
  all	
  of	
  this	
  was	
  that	
  the	
  HIV	
  treatment	
  delivery	
  system	
   had	
  not	
  succeeded	
  in	
  ensuring	
  that	
  emotional	
  needs	
  of	
  the	
  care	
  seekers,	
   such	
  as	
  their	
  need	
  to	
  be	
  treated	
  with	
  respect	
  and	
  for	
  their	
  identity	
  to	
  be	
  hidden	
   from	
  family	
  and	
  communities,	
  are	
  taken	
  care	
  of.	
  The	
  fear	
  of	
  being	
  exposed	
  as	
   men	
  who	
  have	
  sex	
  with	
  other	
  men	
  was	
  an	
  overpowering	
  emotion	
  at	
  every	
  step	
   of	
  accessing	
  the	
  treatment.	
  In	
  fact,	
  the	
  need	
  to	
  protect	
  their	
  identity	
  often	
   overrode	
  their	
  decision	
  to	
  access	
  treatment	
  even	
  when	
  they	
  understood	
  the	
   enormous	
  costs	
  involved	
  in	
  not	
  accessing	
  treatment.	
  	
  	
   	
   Approach	
  	
   Looking	
  at	
  the	
  question	
  through	
  a	
  Design	
  Thinking	
  lens	
  persuades	
  me	
  that	
  the	
   process	
  would	
  have	
  been	
  more	
  effective	
  if	
  the	
  policy	
  makers	
  and	
  the	
  HIV	
   programme	
  heads	
  were	
  involved	
  in	
  the	
  Journey	
  Mapping	
  exercise	
  and	
  the	
   open-­‐ended	
  discussions	
  with	
  the	
  MSM	
  and	
  the	
  treatment	
  centre	
  staff.	
  This	
   would	
  have	
  allowed	
  for	
  visualisation	
  and	
  co-­‐creation	
  of	
  solutions	
  by	
  those	
  who	
   design	
  and	
  fund	
  the	
  programme,	
  those	
  who	
  implement	
  it	
  and	
  finally	
  those	
  who	
   receive	
  the	
  treatment.	
  This	
  offered	
  the	
  possibility	
  of	
  generating	
  empathy	
  for	
  the	
   experience	
  of	
  MSM	
  while	
  dealing	
  with	
  the	
  health	
  system	
  and	
  ideating	
  together	
   with	
  them	
  better	
  and	
  more	
  effective	
  solutions.	
  	
   	
   	
   Submitted	
  by:	
  Jan Miah	
   Date:	
  11	
  July	
  2016


Why do we , men who have sex with men , not access HIV treatment services ? Challenge The Karnataka State AIDS Prevention Society ( KSAPS ) is the nodal agency for implementing the targeted interventions National AIDS Control Programme ( NACP ) in the state of Karnataka in South India . Despite KSAPS ’s achievements in the scaling up of HIV care and support services , HIV prevalence among the sexual minority group , men having sex with men ( MSM ) , in Karnataka continued to show an increase . Prevalence among MSM at 5.4 per cent made Karnataka one of the nine states in the country with over five per cent prevalence in this group . KSAPS contracted my services to answer the question , “ How can HIV prevention and care among MSM in the state be made more effective ? ” Selection Gaining critical insights meant understanding the ecosystem in which the delivery of care and services was located and listening to different stakeholders . In particular , it was important to understand why despite a decade of stigma reduction efforts , MSM continued to be hesitant to visit the testing and treatment centres located within the government hospitals . Journey Mapping , mentioned in The Good Kitchen story , along with open ended discussions were used to trace the experience of MSM trying to access care and treatment services . However , the experience of accessing a service was also dependent on the way service providers engaged with the care seekers . Hence , discussions and dialogues were held with HIV testing centre counsellors , peer and outreach workers , and laboratory technicians and community advocates . Also , MSM is a diverse group in itself and includes men who identify as Panthis , Kothis , Hijras , transvestite and others . The men are perceived and accepted differently in their communities and their experience of navigating the healthcare system will also differ . Application Across three districts in Karnataka , MSM with different self-­‐identities narrated their stories of accessing care , starting from the pre-­‐testing process to accessing the HIV treatment . As the facilitator , I used the white board to visually trace the journey . The group mapped the actions required of them at each step of interfacing with the care and treatment service providers . We also mapped the specific barriers that caused them concern and discouraged them from accessing the service . Finally , members from different districts and groups did a participatory ranking exercise , to prioritise the barriers . Open ended discussions and dialogues with other stakeholders helped gauge the health system and programme level barriers . Mind Mapping , which looked for patterns in responses showed common barriers cited by different stakeholders and three levels at which these stood – individual , programmatic and health system . Synthesis of insights from the diverse groups helped paint an overall picture showing precisely at what point and due to what reason MSM tended to drop out from the HIV treatment service access chain . Insights The following insights emerged from the process : Ø Fear of being identified as HIV positive , unwillingness to disclose HIV positive status , a sense of fatalism , lack of faith in the efficacy of the treatment and negative perceptions about anti-­‐retroviral treatment medication emerged as individual level barriers to accessing services Ø Procedural delays at the hospital , mandatory requirement of producing an identify proof , having to involve family to initiate treatment and discriminatory treatment by the paramedical staff at the centre emerged as health system barriers . Most MSM were homeless or migrants and found it difficult to produce proof of address . The threat of their sexual identity and positive HIV status being exposed and the resultant loss of social support and potential stigma caused them to drop out from the chain of treatment access when family involvement was necessitated . Ø High workload of the HIV counsellors adversely affecting the quality of engagement with the MSM as they had to manage patients at multiple centres in different locations , the merging of care centres within the government hospitals that were too far for the MSM to access and high attrition of counsellors , who are often the only person to know about the HIV+ status of the care seeker emerged as programmatic barriers . A key insight from all of this was that the HIV treatment delivery system had not succeeded in ensuring that emotional needs of the care seekers , such as their need to be treated with respect and for their identity to be hidden from family and communities , are taken care of . The fear of being exposed as men who have sex with other men was an overpowering emotion at every step of accessing the treatment . In fact , the need to protect their identity often overrode their decision to access treatment even when they understood the enormous costs involved in not accessing treatment . Approach Looking at the question through a Design Thinking lens persuades me that the process would have been more effective if the policy makers and the HIV programme heads were involved in the Journey Mapping exercise and the open-­‐ended discussions with the MSM and the treatment centre staff . This would have allowed for visualisation and co-­‐creation of solutions by those who design and fund the programme , those who implement it and finally those who receive the treatment . This offered the possibility of generating empathy for the experience of MSM while dealing with the health system and ideating together with them better and more effective solutions . Submitted by : Jan Miah Date : 11 July 2016