Ignorance is Not Bliss: Why HIV-Hepatitis C Co-infection among People Who Inject Drugs is a Crisis in India
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HIV-Hepatitis C co-infection is emerging a complex and urgent problem. Umesh Sharma, executive member of the Asian Network of People who Use Drugs (ANPUD), has been working for many years to reduce HIV and drug-related stigma and discrimination. Infected with both HIV and Hepatitis C, he is known nationally and internationally for his advocacy on behalf of people who inject drugs (PWID). In the following interview with Alliance India’s Francis Joseph, Umesh shares his perspective on the problems with HIV-Hepatitis C co-infection and explores options for an improved and more impactful response to this challenge.
Q: What is your perspective on the increasing Hepatitis C problem in India?
Umesh: The situation is very alarming. One of the major factors that compounds the problem and encourages its spread is the lack of knowledge about Hepatitis C among people who inject drugs. For example, during a focus group discussion in 2011, we heard a belief in the community that “even if a person is injecting drugs without sharing for six months, the person will still get Hepatitis C.” So you can imagine how low information levels really are among community members.
Q: What are the major problems that a person living with HIV-Hepatitis C co-infection faces?
Umesh: Well, things become more challenging with co-infection. In case of a mono-infection, for example, with HIV, chances of a person getting better and improving his quality of life with ART medication is high. But with Hepatitis C co-infection, the improvement slows down.
Q: How much does the Hepatitis C treatment cost? Can the community afford it? What needs to be done to make it accessible?
Umesh: We surveyed Delhi, Manipur and three other countries in 2011 to check the prices. At the time, the price for Hepatitis C treatment for 48 weeks ranged from USD 14,000 to USD 20,000, which is obviously quite expensive. Accessible treatment depends on governments. We have seen in a country like Egypt where they have a high burden of Hepatitis C, the government has come up with a plan to get more people treated, including children.
My suggestion is to integrate Hepatitis C treatment into the HIV programme. This integration has to be not just in terms of treatment but also education so that the right messages and information go to the community. Moreover, service providers at the grassroot-level also need to be educated. One of our studies found that peer leaders inform the community about Hepatitis C, and most of their information is wrong. Working only with the national HIV programme, they’re still not aware of the basics of HIV-Hepatitis C co-infection.
Q: What can be the role of civil society organisations in this entire endeavour?
Umesh: Civil society needs to create demand and keep pushing the government for an integrated policy and for affordable treatment. Civil society is the frontrunner in this initiative, as currently we are the only ones advocating for it. We also don’t have national numbers on the prevalence of Hepatitis C in India, and getting these data are a priority.
Ignorance is Not Bliss: Why HIV-Hepatitis C Co-infection among People Who Inject Drugs is a Crisis in India
HIV-Hepatitis C co-infection is emerging a complex and urgent problem. Umesh Sharma, executive member of the Asian Network of People who Use Drugs (ANPUD), has been working for many years to reduce HIV and drug-related stigma and discrimination. Infected with both HIV and Hepatitis C, he is known nationally and internationally for his advocacy on behalf of people who inject drugs (PWID). In the following interview with Alliance India’s Francis Joseph, Umesh shares his perspective on the problems with HIV-Hepatitis C co-infection and explores options for an improved and more impactful response to this challenge.
Q: What is your perspective on the increasing Hepatitis C problem in India?
Umesh: The situation is very alarming. One of the major factors that compounds the problem and encourages its spread is the lack of knowledge about Hepatitis C among people who inject drugs. For example, during a focus group discussion in 2011, we heard a belief in the community that “even if a person is injecting drugs without sharing for six months, the person will still get Hepatitis C.” So you can imagine how low information levels really are among community members.
Q: What are the major problems that a person living with HIV-Hepatitis C co-infection faces?
Umesh: Well, things become more challenging with co-infection. In case of a mono-infection, for example, with HIV, chances of a person getting better and improving his quality of life with ART medication is high. But with Hepatitis C co-infection, the improvement slows down.
Q: How much does the Hepatitis C treatment cost? Can the community afford it? What needs to be done to make it accessible?
Umesh: We surveyed Delhi, Manipur and three other countries in 2011 to check the prices. At the time, the price for Hepatitis C treatment for 48 weeks ranged from USD 14,000 to USD 20,000, which is obviously quite expensive. Accessible treatment depends on governments. We have seen in a country like Egypt where they have a high burden of Hepatitis C, the government has come up with a plan to get more people treated, including children.
My suggestion is to integrate Hepatitis C treatment into the HIV programme. This integration has to be not just in terms of treatment but also education so that the right messages and information go to the community. Moreover, service providers at the grassroot-level also need to be educated. One of our studies found that peer leaders inform the community about Hepatitis C, and most of their information is wrong. Working only with the national HIV programme, they’re still not aware of the basics of HIV-Hepatitis C co-infection.
Q: What can be the role of civil society organisations in this entire endeavour?
Umesh: Civil society needs to create demand and keep pushing the government for an integrated policy and for affordable treatment. Civil society is the frontrunner in this initiative, as currently we are the only ones advocating for it. We also don’t have national numbers on the prevalence of Hepatitis C in India, and getting these data are a priority.