Hepatitis C is Asia’s silent emergency

Produced in collaboration with

Published 28 July 2021

Hepatitis C (HCV) is a life-threatening bloodborne virus that attacks the liver. Around 170 million people live with HCV today. Most live in Asia, with China, Pakistan, India, and Egypt making up 40 percent of all reported cases.

COVID-19 has made things worse by keeping people at home and hampering routine HCV testing and treatment. Those who contract hepatitis C during the pandemic may only get diagnosed much later, when HCV has become both chronic and deadly.

How many people die from infectious diseases each year?

Scroll to start the animation

Each represents 20, 000 deaths

Malaria

409, 000 deaths

HIV

690, 000 deaths

Hepatitis C

Hep C

400, 000 deaths

Tuberculosis

TB

1, 400, 000 deaths

Cholera

143, 000 deaths

A slow simmer; a fatal blow

Hepatitis C has no obvious symptoms in its early stages. Nobody knows if a HCV-infected person will succumb to sudden, debilitating liver disease or whether the virus will take its time.

This makes it hard to detect and treat. Many infected people live unaware that they are HCV carriers because several countries lack national screening mechanisms.

Without treatment, around 30 percent of those with HCV clear the infection within six months. If the virus persists, the remaining 70 percent will develop chronic HCV. It’s often only after a decade or longer, when cancer or liver failure strikes, that people realise they’ve had it this whole time.

How many people are chronically infected with hepatitis C, as compared to HIV?

Each represents 250,000 people.

HIV

38 million people

An estimated 2.3 million people are infected with both HCV and HIV. Being infected with both HCV and HIV is a major cause of death today. Both are blood-borne diseases that affect similar social groups—and patients with both often face deep stigma in their communities.

Hepatitis C

58 million people

Out of 170 million people with HCV, 58 million are chronically infected. Those who are not treated risk dying from cirrhosis (late-stage liver scarring) and liver cancer.

How does one get infected with hepatitis C?

Hepatitis C spreads when one is exposed to small quantities of blood or bodily fluids containing the virus. Unsafe injection practices, needle sharing, unscreened blood transfusions, sexual contact, and childbirth are the most common ways. Even getting a piercing or tattoo with unsterilised equipment is risky.

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Asia: A hepatitis C hotbed

In Asia, poor public awareness of HCV’s risks and transmission methods has left many people undiagnosed and untreated.

Unsafe injections in both healthcare and non-healthcare settings are the main cause of transmission here in Asia. Today, around 60 percent of intravenous drug users are infected with HCV. A third of all HCV-related deaths come from sharing needles while injecting drugs. In Asia’s resource-strapped, low-income countries, blood transfusions are also not widely available, and reusing needles and syringes for medical procedures has worsened the problem.

Culture contributes to hepatitis C’s spread

Inequality puts hepatitis C’s detection and cures out of reach

Only a fraction of the 58 million people infected with chronic HIV are receiving treatment. Outrageously high prices have put lifesaving direct-acting antiviral (DAA) drugs—a new type of oral medication for hepatitis C produced by big pharmaceutical companies—out of reach for millions in middle- and low-income countries.

For instance, American biopharmaceutical company Gilead Sciences charged a whopping $1,000 per tablet when it launched the HCV drug sofosbuvir (SOF) in 2013. Another multinational company, Bristol-Myers Squibb, charged $750 per tablet for its HCV drug daclatasvir (DCV).

Countries need high-quality rapid tests to scale up HCV screening and treat the infected in just 12 weeks. But measuring the amount of hepatitis C virus in the blood (RNA testing), is still complex and expensive. This makes it hard to identify and focus on who carries the chronic infection at a large scale—especially in countries with weak healthcare systems and financing.

Nowhere is this more stark than in Pakistan and Bangladesh, where international humanitarian organisation Médecins Sans Frontières (MSF) works to make HCV care more affordable and available to the most underprivileged communities.

Pakistan: The struggle for access to healthcare

Pakistan flag

At the edge of the Port of Karachi lies Machar Colony, a dilapidated settlement in Pakistan’s capital. Its residents, many of whom work as fishermen or labourers in the fishing industry, have little access to healthcare and basic amenities. Clean water is scarce.

10,037
people screened with rapid diagnostic tests for hepatitis C

Screened

Enrolled

Put on treatment

Completed treatment

Each represents 50 cases

Note: Data extracted from MSF's report from June 2018 to March 2021.

Approximately 8 640 000 to 17 330 000 people are infected with HCV in Pakistan. It has the second-highest number of infections (behind Egypt), and Machar is just a small part of the country’s struggles. It is estimated that 20-30 percent of patients screened at MSF’s clinic here have the virus.

At the MSF clinic, which opened in Machar in early 2015, patients come from high-risk occupational groups that use sharp equipment or are exposed to bodily fluids. These include barbers, dentists, health practitioners, fishermen, beauticians, hijamas (cupping practitioners), truck drivers, traditional birth attendants, shrimp factory labourers, and child scavengers.

Age group
5-20 21-40 41-60 61 and above

Most of those diagnosed with HCV at MSF’s clinic are above 40 years old. Over the years, HCV has damaged their livers and induced symptoms.

Contaminated blood transfusions and reused dirty needles and syringes are the leading causes of Pakistan’s high infection rate. Health workers sometimes reuse needles when resources are limited. In Machar, poor infrastructure and the lack of affordable and quality healthcare services have made an already vulnerable community even more exposed to the deadly disease.

HCV treatment is often centralised in hospitals rather than offered in local health centres. Treating HCV involves multiple check-ups, and many cannot afford to leave work and give up their daily wages for the long journey to a hospital.

MSF’s clinic in Machar Colony receives 30 to 35 patients each day and provides diagnosis, treatment, health education, and patient support services for HCV. Initiatives like this make HCV diagnosis and treatment easier and more affordable for the many who struggle with its costs.

This is what happens when someone contracts hepatitis C in the Machar Colony

The biggest hurdle for those with hepatitis C lies in getting cured. Lack of knowledge on the disease and limited access to affordable healthcare lead many to believe that HCV is a death sentence. The hidden costs of treatment also deter people from getting treated.

Living with hepatitis C can be traumatising, and patients need support from the people around them. Patients and their families deeply fear the disease’s consequences and the chance of infecting others. This severe emotional toll leaves many HCV patients anxious or depressed.

patient profile photo

Ahmed

Ahmed is part of the Bengali community in Machar Colony and works in the local fishing industry. After being diagnosed with hepatitis C, Ahmed made sure everyone in his household was tested for the virus. All the tests came back negative.

At night when I’m in bed and about to fall asleep, I feel dread and claustrophobia. I break into a sweat. The only thing that helps is going outside for a walk and having the cool, fresh air against my skin. When I come back in I start feeling anxious again and I stay awake. I have to keep going back outside to get relief, but it’s a burden on the entire household.

For a poor man it’s hard to receive treatment that can cost up to Rs150,000 (over US$2000). But I urge anyone with this illness to seek help immediately and to get themselves treated by a doctor.

patient profile photo

Juma Gul

It has been two years now since Juma Gul, 40, was cured of hepatitis C. Upon the insistence of a friend who had been cured of the disease, he enrolled and began his three-month treatment. He remembers how he had felt when he first received his diagnosis.

I knew it was a dangerous illness. I couldn’t control my breathing and started hyperventilating upon hearing that I had it. I had found out about it but what good was that going to do me? I didn’t know what would happen next. Everyone is scared of this illness, not just me. Everyone. Whoever finds out they have it, they lose their peace of mind. They wonder, what will happen now? What will become of me? I’ve seen it happen. Three or four boys with bloated stomachs [who had advanced hepatitis C] died within a few months.

patient profile photo

Asif Ali

When 19-year-old university student Asif Ali was diagnosed with hepatitis C, he was overwhelmed with fear and anxiety. One of his relatives, who had previously been diagnosed with and cured of hepatitis C, recommended that Ali visit the MSF clinic. Ali, who lived in another colony, began visiting the clinic regularly for treatment.

I was terrified. I didn’t know anything about hepatitis C. Everyone told me that this disease is something very unusual and not a regular illness. I was very scared. I have no idea about how or where I could have caught it.

patient profile photo

Noor Alam

Noor Alam is the first patient to be cured of hepatitis C at MSF’s clinic. Approximately seven years ago, Noor Alam started to experience severe pain in his body, and discovered he was infected with hepatitis C through a local clinic. He subsequently had to sell his house to pay for treatment. Despite facing financial ruin and with a young family to feed, Noor Alam was not cured after two courses of treatment, and his condition started to deteriorate. As a migrant from Bangladesh, Noor Alam does not have access to advanced medical treatment in the government health system.

Last year, Noor Alam heard about the MSF clinic in Machar and started treatment there. During this period, he was forced to send his three eldest daughters to work in the shrimp peeling market so that the family would have food for the day. The girls were unable to continue their education.

Bangladesh: The undocumented face even higher barriers to treatment

bangladesh flag

In 2015, pharmaceutical giant Gilead granted a voluntary license for poor countries to procure cheap, generic copies of sofosbuvir on one condition: patients must provide proof of citizenship and residency in their countries.

The move instantly penalises refugees and undocumented migrants, many of whom live in overcrowded refugee camps with little to no access to basic necessities.

10,037
people screened with rapid diagnostic tests for hepatitis C

Screened

Enrolled

Put on treatment

Completed treatment

Each represents 25 cases

Note: Data extracted from MSF's report from October 2020 to May 2021.

Approximately 326, 000 to 1, 630, 000 people are infected with HCV in Bangladesh. This does not include infections from the estimated 900 000 Rohingya refugees who had fled violent persecution in Myanmar.

The Rohingya were already subject to poor healthcare and harsh living conditions before they arrived in Cox’s Bazar. HCV screening and treatment remains limited to only a handful of clinics in the entire refugee camp, even though demand is high.

Without citizenship and basic legal rights, undocumented migrants and refugees face the biggest obstacles to treatment. Their suffering is tremendous, yet they remain hidden and struggling.

MSF operates three medical facilities in Cox’s Bazar, which are able to diagnose and treat patients from both the refugee and host communities.

Environmental barriers to getting healthcare

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Cox’s Bazar is home to the world’s largest refugee settlement. Around 900,000 Rohingya refugees live in the sprawling Kutupalong-Balukhali camp and the surrounding settlements in harsh conditions, after fleeing violent persecution in Myanmar’s Rakhine State.

An army road runs through the middle of the camp, while a highway curves around the border separating the refugee settlement from the outside world. People travel on these two routes by hopping on auto-rickshaws (CNGs), a popular local mode of transport and the cheapest way to get around.

Several clinics and other health facilities built by local and international NGOs operate in Cox’s Bazar—but only a few test and treat hepatitis C. Earlier this year, a massive fire destroyed MSF’s Balukhali clinic, along with homes and other humanitarian infrastructure. The flimsy materials of makeshift houses mean fires spread rapidly across the camps.

Three MSF clinics treat hepatitis C in Cox’s Bazar, including its newest facility at the settlement’s heart: the hospital on the hill. Opened in 2018, it offers a wide range of medical services to both Rohingya refugees and local Bangladeshis living in the surrounding areas.

Although camp residents can take a CNG on the main road to the hospital, most walk there or are referred to the closest clinic. These journeys on foot can take 40 minutes to an hour.

Walking to get a health check-up or access emergency medical aid is hard—and the monsoon season makes it worse. Heavy rains wash away the makeshift roads connecting the camps. People slip on mud staircases carved into steep hillsides. Extreme weather triggers deadly landslides.

Challenging Big Pharma

Hepatitis C epidemics have swept the world several times in modern history. Yet, there remains no international funding for testing and treating it. Countries must tackle the silent killer with domestic funding.

Cambodia: Simplifying the long, complex road to recovery

bangladesh flag

Patients previously had to make 8 visits to the clinic over the span of 140 days just to begin treatment. MSF’s new model of care has drastically cut the number of consultations and steps needed.

Previous model of care (2017):

Initiation (screening, testing and consultations before treatment starts)

140 days

Care pathway

Hep C treatment flow chart old model
Hep C treatment flow chart old model

Patients receiving treatment now only need 5 medical consultations instead of 16, easing the cost and stress of a drawn-out treatment period. All patients who have not reached the critical stage of cirrhosis receive the same treatment. The new model, in which nurses rather than doctors start the process, doesn’t need multiple scans and blood tests for pre-treatment analysis. This reduces the need for doctors and enhances the effective role of nurses throughout the process.

Simplified model of care (2020):

Initiation (screening, testing and consultations before treatment starts)

7 days

Care pathway

Hep C treatment flow chart new model desktop
Hep C treatment flow chart new model

It all comes down to unequal access to healthcare

MSF’s work with Asia’s most vulnerable communities has shown that a shorter and affordable model of treatment for hepatitis C is possible and scalable. Yet, many treatment regimens around the world remain unattainable. Many people still fork out huge sums for HCV drugs or make arduous journeys just to get to a hospital.

Without improved access to HCV diagnosis and treatment, stemming the spread of hepatitis C and ending the pain of those suffering remains an uphill battle.

In the long run, a decentralised model of treatment will bring treatment to people in remote areas across the region. Local clinics able to both test and treat HCV near people’s homes will save many more lives. Better health financing as well as training workers in healthcare and occupations with regular exposure to blood will help, too.

The gulf between those who can afford treatment and those who suffer in silence is at the root of the HCV epidemic. The disease can only end if the world commits to lifting the burden of unequal access to healthcare from its most deprived.

What can you do to prevent the transmission of hepatitis C?

Click on the cards to find out more.

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Get your blood screened
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Never share needles, razors and toothbrushes
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Prevent transmitting HCV to your child
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Use only sterilized needles or sharp tools
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Use condoms correctly and consistently
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Choose oral medications instead of injections

A message from our partner

Member states of the World Health Organisation have committed to eliminating HCV by 2030. To do this, people living with HCV need strong leadership from different countries to upscale HCV diagnosis and treatment. This also means implementing sustainable financing mechanisms that ensure HCV patients can access this. Pharmaceutical companies must also commit to making HCV drugs more affordable and accessible to all.

Disclaimer: Our stories have been researched and fact-checked to the best of our abilities. Should you spot mistakes, inaccuracies, or have queries about our sources, please drop us an e-mail at hello@kontinentalist.com
Credits
Code / Siti Aishah
Data / Doctors without Borders
Design / Amanda Teo
Illustration / Griselda Gabriele
Story / Zafirah Zein
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