Improving Hepatitis C Care in
TREAT Asia Interview: Rajkumar Nalinikanta
Published Monday, September 26, 2016
Rajkumar Nalinikanta is president of the Community Network for Empowerment (CoNE), a network of community-based organizations of people who use drugs in Manipur, a state in northeast India bordering Myanmar. CoNE’s program of hepatitis C testing, treatment, and advocacy has been twice recognized in 2016 with global awards for innovation, and the network has been invited to present its program at the 2015 and 2016 International Symposia on Hepatitis in Substance Users, the 2016 International Liver Congress, and the 2016 International AIDS Conference. CoNE is a TREAT Asia partner.
TREAT Asia Report: Why did CoNE become involved with hepatitis C treatment advocacy?
Rajkumar Nalinikanta: Among people who inject drugs (PWID) in Manipur, the rate of hepatitis C infection is as high as 98 percent in some districts. There are also many people with HIV/hepatitis C co-infection, and liver-related disease is thought to be the main cause of death for people on antiretroviral treatment in the state.
Despite the high prevalence of hepatitis C in the state, there is very little awareness among PWID about the benefit and importance of early diagnosis and treatment. And neither the national government nor the state government has addressed hepatitis C issues. Consequently, many people are dying of this curable disease. In response to this urgent situation, in 2012 CoNE began its efforts to improve awareness of hepatitis C in high-risk populations as well as access to hepatitis C prevention, screening, and treatment.
TREAT Asia Report: How did you get involved with CoNE and the kind of work the organization does?
Nalinikanta: Manipur has had a drug problem for the last three decades, and it had not been addressed by any agency or government. I was also a former drug user. CoNE is a network formed by 13 community-based organizations of people who use drugs from all nine districts in Manipur. We took the opportunity to come together to work toward protecting the health and human rights of all people who use drugs in Manipur. I was selected as president by my member organization and became involved with CoNE in 2011.
Neither the national government nor the state government has addressed hepatitis C issues. Consequently, many people are dying of this curable disease.
TREAT Asia Report: How does the problem of HIV and hepatitis C in Manipur differ from that of other areas in India?
Nalinikanta: There has been an extensive problem of injection drug use in the state, and the sharing of injecting equipment is our primary driver of HIV and hepatitis C transmission. This situation has a lot to do with the easy availability of drugs such as heroin that are transported from Myanmar.
TREAT Asia Report: Can you describe the hepatitis C-related projects that CoNE has been conducting in Manipur?
Nalinikanta: We began a network-building project in 2012 to improve hepatitis C treatment access. This project was funded by the Bill and Melinda Gates Foundation until August 2014, and since then it has been funded by TREAT Asia/amfAR.
In partnership with the State Health Department and pharmaceutical companies, in 2014 we began a statewide testing and linkage-to-treatment program that was selected this year as one of the top five models in a Global Hepatitis Innovation Testing Contest conducted by the World Health Organization (WHO) and Social Entrepreneurship for Sexual Health (SESH). This community-based testing model is also featured in the WHO hepatitis B and C testing guidelines. Our abstract describing the model was awarded Best Abstract in the community and social section of the 5th International Symposium on Hepatitis Care in Substance Users in Oslo, Norway, in September 2016.
Rajkumar Nalinikanta accepts Global Hepatitis Innovation Testing Contest award for CoNE. Presenters are (left to right) Dr. Henk Bekedam, WHO Representative to India; Dr. Gottfried Hirnschall, Director of the WHO HIV/AIDS Department and Global Hepatitis Programme; Anupriya Patel, India’s Minister of State for Health and Family Welfare; and Amitabh Bachchan, Indian film actor and humanitarian.
CoNE works to identify populations at high risk of hepatitis C infection in the state and to organize hepatitis C awareness and screening camps. Pre-and post-test counseling is provided by our volunteers in every camp we organize, and a hepatitis C treatment literacy program is offered to people who test positive. Those who want care are linked to treatment with the newer oral direct-acting antivirals (DAAs), which are the most effective and safe medicines for treating hepatitis C. Depending on the location of the patient, CoNE then refers them to doctors who partner with us to provide treatment. Because of our programs, many people are coming forward to access hepatitis C treatment.
As of now the state does not provide free hepatitis C treatment for everyone, but there is a provision for reimbursement for those below the poverty level. CoNE volunteers help people apply for this reimbursement. For people who do not qualify for this reimbursement, CoNE negotiates with pharmaceutical companies for them to provide the medicine at a discounted price. The DAAs are marketed by 15 companies in India and are easily available in Manipur if the patients can pay the discounted price that we negotiate.
TREAT Asia Report: How is your work impacting what the state government of Manipur is doing in response to the HIV and hepatitis C epidemics in general, and specifically in support of people who inject drugs?
Nalinikanta: Originally hepatitis C treatment was not included in the state health scheme. Through our advocacy efforts, it was partially covered when pegylated interferon was used. Now that DAAs are the preferred treatment it is fully covered, since DAAs cost less and the treatment duration is much shorter. As I mentioned, this coverage is currently for people who are below the poverty line only. Our work has also led to the expansion of eligibility criteria for hepatitis C treatment reimbursement, which now will include people living with HIV.
CoNE, along with the Department of Health and physicians in the state, is in the process of developing state-specific guidelines on screening, diagnosis, and treatment. We are also developing a protocol for preventing hepatitis B and C acquisition in dental healthcare settings. We are working to develop a state resource pool to train more doctors to provide hepatitis C treatment in rural and hill districts of the state. We have already formed a viral hepatitis C task force, which is chaired by the director of health services for Manipur.
Due to our advocacy efforts, beginning probably next month, free hepatitis B vaccinations will be available for people who inject drugs.
TREAT Asia Report: What do you feel are the critical barriers to scaling up hepatitis C treatment in India and the region?
Nalinikanta: A major barrier remains the lack of awareness among people living with hepatitis C about the benefits and importance of early diagnosis and treatment, coupled with inadequate provision of hepatitis C treatment literacy and education, including information about the availability of DAAs. Also free provision of the hepatitis C quantitative (viral load), fibrosis staging, and genotyping tests, which are needed to tell how severe and what kind of hepatitis C infection someone has and which medicines are best to treat it, is too often unavailable.
A major barrier remains the lack of awareness among people living with hepatitis C about the benefits and importance of early diagnosis and treatment, coupled with inadequate provision of hepatitis C treatment literacy and education.CoNE is one of the few organizations in Manipur working specifically on hepatitis C, and we are based in the capital city, Imphal. Due to limited resources, we still have trouble reaching people who live in the hill districts of the state. These areas lack doctors who are skilled in providing HCV treatment, and hepatitis C medicines also remain unaffordable for many, even at the discounted price.
TREAT Asia Report: What are CoNE’s priorities to address those barriers in the coming year?
Nalinikanta: We plan to expand upon our work to raise awareness of the benefits and importance of early diagnosis and treatment among people at risk of infection. We intend to increase the number of screening camps that we organize to encourage more people to come forward for hepatitis C testing, as well as the number of hepatitis C treatment literacy/education programs for infected patients to provide a gateway for treatment access. We will also continue to be involved in the formulation of state-specific guidelines on hepatitis C screening, diagnosis, and treatment in line with WHO guidelines.
TREAT Asia Report: Does the hepatitis C epidemic affect more men or does it affect men and women equally?
Nalinikanta: It has affected more men. But in the past month we have initiated a program to provide free treatment to 17 widows living with HIV and hepatitis C co-infection. These widows are all the spouses of men who injected drugs, although they themselves have not injected drugs. We have seen many people in Manipur infected with hepatitis C who are not from the drug-using community. According to many doctors in Manipur and many international journals, transmission of hepatitis C through sexual exposure is very limited. We are a poor state with limited resources for research. But I have suggested to our health department that they study these spouses who are infected with hepatitis C, including investigating whether specific sexual practices are associated with transmission.
TREAT Asia Report: How do you advertise to the general public?
Nalinikanta: Every year on World Hepatitis Day we organize a talk program to discuss hepatitis C on the radio or a local TV channel, and so far we have developed many information, education, and communication materials. People need to know that hepatitis C is a serious infection that can be deadly, but it can be cured.