Raising awareness and advocacy to improve access to HCV screening, diagnosis and treatment in Manipur.
Community Network for Empowerment (CoNE) is a network of community-based organisations/groups of people who use drugs (PUDs) in Manipur state, India. The network was officially launched in June 2011 and its mission is to promote a self-sustainable network owned by PUDs that works for reduction in stigma, harassment and discrimination of PUDs, as well as to improve their standard of living.
By Nalinikanta Rajkumar, President of Community Network for Empowerment (CoNE)
An estimated 12 million people live with chronic hepatitis C infection in India. Many are believed to be from marginalised populations, such as people who use drugs (PUDs). Such populations have been historically difficult to reach and get tested. However, our model, as a network of people who use drugs, works to ensure key populations are included in diagnosis efforts, meaning the time between testing and treatment is kept as short as possible and patients are not lost.
We started our hepatitis C screening activities in 2014, in partnership with the Directorate of Health Services, Government of Manipur across the nine districts of Manipur. Key aims of the programme include to improve awareness and willingness to get tested amongst PUDs and their spouses. As well as to make sure that those who are found to be living with hepatitis C are linked to care.
Since 2014, we have screened and tested PUD populations across Manipur and have undertaken five screening and testing sessions inside prisons, targeting inmates with drug use backgrounds. Of the 147 inmates we screened, we found 58 to be living with hepatitis C.
Throughout, we have developed our work by consulting with and collecting feedback from our target populations. We have worked with them to identify where to find target populations and specify which populations to work with and who to prioritise. The majority of our activities are led and facilitated by our service users too. We have also sought input from technical experts within and outside Manipur state, through constant networking and the sharing of our activities. It is through this collaboration with local services and stakeholders that we have been able to develop our activities.
Between 2014 and 2018, we screened and tested 5,629 PUDs and their spouses, finding a 49.52% prevalence rate of hepatitis C infection amongst them.
Our activity shows the PUD community can play a vital role in mobilising people for testing and that historically unreachable populations are key to reaching others.
Top tips for success
The key factors that have helped us successfully implement our activities include:
- Collaboration between local services and stakeholders to ensure maximum possible reach
- Consistent and effective advocacy with different stakeholders.
- Effective functioning of network branches in every district of Manipur.
- Being a community-based organisation which is able to mobilise target populations.
- Having the resources available to support activity implementation.
- We often face issues and problems when mobilising for screening camps because there is no support mechanism in place for providing hepatitis C testing kits and the majority of those who we seek to test cannot pay themselves.
- In Manipur, patients living with hepatitis C infection must send their blood samples for a confirmatory test either outside the state or to the private local diagnostics centre. This is unaffordable for most and it can take as long as ten to fifteen days to get a report back. Delays in accessing diagnostics puts many people off treatment. To get around this, we have negotiated with different laboratories for diagnostics price reduction and signed an agreement. This means we can now link patients to confirm their diagnosis at a preferential price.
- Since there is no state specific policy on hepatitis C diagnosis and treatment, advocacy towards government officials often gets delayed as government department staff keeps on changing. We therefore continuously advocate government officials and build rapports with each new official.
- The majority of the human resources engaged in our activities need to be consistently supported as most of them are part of the PUDs community, and not professionals.
Achievements to date
Our work has achieved a lot over the last few years, including:
- We conducted the only state-wide hepatitis C serological study among PWIDs and their partners in Manipur by obtaining ethical clearance from the Research Ethics Board (REB) and the Regional Institute of Medical Sciences (RIMS).
- We conducted five hepatitis B and C screening and testing sessions at the Central Jail in Sajiwa, Imphal, screening 147 people. 58 were found to be living with hepatitis C. 45 of them have been given free treatment with Direct Acting Antivirals DAAs. 40 were provided with 12-week therapy and five placed on 24-week therapy.
- We produced a booklet on “Understanding of hepatitis C screening, diagnosis & treatment” which has been recommended by the state government to train government healthcare workers.
- We developed a State specific Standard of Procedure (SoP) on hepatitis C prevention, screening, diagnosis and treatment, which is now being adopted by the Manipur state government.
- We released a documentary film titled “Hepatitis and insight”.
- We have produced locally relevant Information and Education Communication (IEC) materials on hepatitis C screening, diagnosis and treatment, and disseminated these among high risk populations and state healthcare providers.
- We have facilitated the training of 53 physicians from all nine districts of Manipur on treatment for hepatitis C and HIV co-infection using Direct Acting Antivirals (DAAs).
- With an aim of strengthening skills and understanding of Health care workers on hepatitis C, we have facilitated six training sessions using the module on “Understanding of Hepatitis C Screening, diagnosis & treatment”. Altogether 215 healthcare workers, including nurses, tab technicians, addiction counselors and female health workers have been trained.
- Between 2014 and February 2019, we have reached 6,412 people screening 5,646 of them. 2,801 have been found to be living with hepatitis C infection.
- One of our representatives was selected with full scholarship to present at the 4th International Symposium on Hepatitis in Substance Users (INHSU) held in 2015 in Sydney. Moreover, our work on addressing hepatitis C was featured in the “Change project” conducted by the INHSU in 2015.
- Our community-led hepatitis C testing model was awarded as one of the top five models in the global hepatitis testing innovation contest organized by the World Health Organisation (WHO) in 2016. One of our representatives was invited by WHO to speak about this at the 2016 International Liver Congress, in Barcelona.
- As of December 2018, we are able to support the free diagnosis and treatment of 300 people living with hepatitis C, including prison inmates, people co-infected with HIV, widows and PUDs, thanks to mobilising resources from philanthropists and well-wishers.
- Advocacy should be done consistently; it is an ongoing process and not a onetime event.
- All activities must be carried out on the basis of need assessment findings.
- Local settings need to be properly understood for the successful implementation of any activity.
Find out more
If you’re interested in finding out more about carrying out similar work with local services to offer testing and treatment, contact CoNE on firstname.lastname@example.org.