Hepatitis C is a serious concern in Manipur state, India, particularly among key populations such as people who use drugs and people living with HIV. Recent studies indicate that prevalence among people who use drugs is alarmingly high in Manipur, with some districts reporting prevalence of 45% and even 98% in the hardest hit regions. Just 25% of people living with hepatitis C are diagnosed. The disease is not currently addressed in government public health programmes so the Community Network for Empowerment (CoNE), a state level network of community based organisations of people who use drugs, works to improve access to hepatitis C testing, diagnosis and treatment across the state.
Their activities towards eliminating hepatitis C in Manipur follow a robust cascade of care:
- Community outreach and mobilisation: In the first instance, CoNE encourage people to attend awareness and screening camps by building rapport, raising awareness and conducting one-to-one and group meetings with key stakeholders including people living with HIV, local community based organisations and government officials. This helps the organisation reach out to at-risk individuals and identify hidden high risk populations.
- Awareness and confidence building camps: With support of local NGOs, diagnostic centres, people living with HIV and people who use drugs organisations and government departments, they regularly carry out awareness raising and confidence building camps. Since 2014, they have conducted 76 camps in all 9 districts of Manipur, reaching 3815 people. Each interactive camp includes sessions on basic information on hepatitis C, mode of transmission, preventative measures, importance of early testing, diagnosis and treatment options. The informative sessions are immediately followed with the option of getting tested on site.
- Hepatitis C antibody testing: Thanks to their awareness and confidence building camps, demand for testing has increased. Their screening camps follow a private-public partnership model with shared responsibilities: the state Department of Health provides space and trained professionals, generic pharmaceutical companies provide rapid testing kits and CoNE’s staff mobilise individuals to get tested. They have carried out 76 screening camps since November 2014, testing a total of 3251 people.
- Counselling: Individuals who attend the screening camp are provided with counselling services so they understand the importance of prevention and repeat testing. Those who are reactive to the antibody test are informed of the need of an RNA test as well as the importance of early diagnosis and treatment and how they can access the additional test and treatment.
- Completing diagnosis: During the counselling process, CoNE assess the individual’s ability to pay for the RNA test and treatment. CoNE then provide the test and treatment at a preferential price or free of charge, which they have been able to negotiate with diagnostics and pharmaceutical companies. Confidentiality is strictly maintained throughout the process. Since 2014, 67 people have received the RNA quantitative test free of charge and 872 at the preferential price.
- Treatment: It has proven challenging to motivate people to start treatment due to financial constraints or the fact that the patient does not consider the illness a priority since they have not experienced symptoms. CoNE’s staff overcome this by maintaining regular contact with the patient as well as involving family members to provide further support. They have initiated treatment with 405 people, 67 of which received free treatment.
Outside the cascade of care activities, CoNE also work to find the missing millions by carrying out numerous awareness and advocacy activities. This includes:
- Media outreach to raise awareness and tackle stigma and discrimination, such as workshops with print and online media, panel discussions and radio talk shows.
- Advocating to the State Government of Manipur, which has resulted in an expansion of eligibility criteria for hepatitis C treatment reimbursement to include people living with HIV.
- Training physicians to increase their understanding of hepatitis C and prescribing capacity.
- Educating healthcare workers to strengthen their ability to discuss hepatitis C with patients.
- Developing locally contextualised information and education materials that are disseminated among healthcare workers, the general population and at-risk groups. Materials specifically designed for people who use drugs are displayed in government healthcare settings and public places such as vehicle waiting sheds and public toilets.
- Developing state specific training and guidance documents in consultation with the Department of Health, physicians and state training resource centre. Their booklet ‘Understanding of Hepatitis C Screening, Diagnosis and Treatment’ is now recommended to healthcare workers by the Government of Manipur.
- Negotiating with pharma companies and diagnostics laboratories for price reduction on diagnostics and medicines.
Challenges and lesson learnt from the programme:
- The response to hepatitis C awareness among the at-risk populations is enthusiastic but CoNE face challenges encouraging people to get tested as there is limited financial support for the RNA confirmatory test.
- Since there is no state specific policy on hepatitis C diagnosis and treatment, CoNE’s advocacy must be continuous and focused on specific issues. High staff turnover at the government department further delays results from their advocacy efforts.
- A lack of timely and affordable testing results in patients sending blood samples either outside of the state or to private diagnostics centres. Delays in accessing diagnostics prevents people coming forward for treatment.
- Significant stigma and discrimination exists among healthcare workers due to low awareness of hepatitis C.
Overcoming the challenges:
- CoNE will continue to carry out hepatitis C awareness and screening camps aimed at marginalised populations and aims to scale up coverage in rural and interior partners of the state where basic healthcare facilities are not available.
- They are in the process of formalising Specific Standard of Procedure (SOP) on hepatitis C Screening, Diagnosis and Treatment for the State of Manipur. This was drafted with input from State Health Department officials, gastroenterologists and technical experts.