Ignorance is Not Bliss: Why HIV-Hepatitis C Co-infection among People Who Inject Drugs is a Crisis in India

Umesh (3)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.

World Hepatitis Day 2013: Making Hepatitis C a Priority

Sixteen million people inject drugs worldwide. Three million live with HIV, and two-thirds of them live with Hepatitis C. (Photo by Francis Joseph for India HIV/AIDS Alliance)

Sixteen million people inject drugs worldwide. Three million live with HIV, and two-thirds of them live with Hepatitis C. (Photo by Francis Joseph for India HIV/AIDS Alliance)

A dear friend of mine was struggling as a single mother, working two jobs and balancing drug use. To make things simpler, she quit the jobs and started working from home. Unfortunately, her drug use turned out to be more problematic than anticipated. Her situation was further complicated when she was diagnosed as positive for Hepatitis C, a viral disease that leads to the inflammation of the liver and related complications.

With no medical insurance, she faced a financial challenge to cover the six-month long treatment. At first, she got contributions from family and friends and then a loan, and lastly she sold her jewellery. She recovered only to be hit with the virus again. This time her condition deteriorated so quickly that she was not able to make it through a second round of treatment. Only half of those who are treated actually recover. My friend’s is just one of the many stories of people struggling with Hepatitis C.

Hepatitis C represents a huge public health problem in India and globally. According to the World Health Organization about 150 million people are chronically infected with the Hepatitis C virus, and more than 350,000 people die every year from Hepatitis C-related liver diseases. The Hepatitis C virus is more infectious than HIV. An estimated 10–12 million people in India are infected with Hepatitis C, including 50 percent of people who inject drugs (PWID) nationally and 90 percent of PWID in the northeast. Left untreated, Hepatitis C can lead to liver cirrhosis, liver cancer or liver failure.

Hepatitis C is especially of concern for those co-infected with HIV, as several studies have shown that HIV-Hepatitis C co-infection leads to increased rates of disease progression. PWID are especially vulnerable to infection by both HIV and Hepatitis C; co-infection rates are as high as 93% among PWID in Manipur. However, unlike first- and now second-line HIV treatment, which is available to people living with HIV who need it in India, Hepatitis C treatment is not available in government hospitals largely due to its high cost, and health programmes for PWID typically do not screen patients for Hepatitis C due to the unavailability of treatment. Consequently, this results in high morbidity and mortality among PWID.

To address this concern, our Government of the Netherlands-supported Hridaya programme disseminates information on Hepatitis C prevention through outreach and counselling sessions at drop-in centers (DICs) in 36 sites in four states: Bihar, Jammu, Haryana and Uttarakhand. The programme also identifies clients and refers them for testing. Those found to be Hepatitis C-positive are further educated on self-care and positive prevention. The programme’s outreach team works with spouses and families of PWID, explaining Hepatitis C risk and prevention in the context of injecting drug use.

To address the growing problem of HIV-Hepatitis C co-infection among women who inject drugs, our Elton John AIDS Foundation-funded Chanura Kol project has initiated Hepatitis C interventions. Women enrolled in the project are educated about transmission risks, prevention strategies, and the importance of testing.

With both programmes, Alliance India is working to ensure that Hepatitis C prevention education and treatment literacy become a priority for PWID and a core part of this country’s efforts to improve the lives and health of PWID.

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The author of this post, Simon W. Beddoe, is Advocacy Officer: Drug Use & Harm Reduction.

With funding from European Commission, the Asia Action on Harm Reduction programme supports advocacy to increase access by people who inject drugs (PWID) in India to comprehensive harm reduction services and reduce stigma, discrimination and abuse towards this vulnerable population. The three-year programme in the beginning will primarily engage with PWID and local partners in Bihar, Haryana, Uttarakhand, Delhi and Manipur and  gradually extend its reach across India.