Indigenous Insights – Soma’s story

Meet Soma Shekar (Somu), from the Jenu Kurba tribes of state of Karnataka, India who tells us about his fight to overcome hepatitis C.

To celebrate the International Day of the World’s Indigenous Peoples (9 August), we are raising awareness of Indigenous Peoples’ stories of living with viral hepatitis.

Soma Shekar, known affectionately as Somu by those close to him, has been battling the odds for all of his 45 years. Born in 1972, he has the blood disorder haemophilia, meaning that his blood does not clot normally, and simple bleeds or injuries could end up killing him. It has meant a life of irregular school attendance and his parents protecting him as best they could to avoid him ever getting cuts. He has, all his life, been extremely careful, since any bleed could be fatal, especially in the brain.

The 1980s saw the arrival of exciting new blood products to treat haemophilia, namely the now infamous factor VIII, which helped patients with haemophilia clot more normally. Like many others with haemophilia worldwide, Somu contracted hepatitis C from infected factor VIII, because in the 1980s it was not screened correctly for hepatitis C or HIV. Somu waswas diagnosed with hepatitis C in 1995. Many other people were also infected with HIV through factor VIII in the 1980s and 1990s, and did not survive.

After his hepatitis C diagnosis, Somu has faced stigma from certain authorities in India, with some trying to reject him from employment opportunities. However, he was undaunted, and has worked very hard to progress his career to where it is today.  He is a qualified software engineer, and part of his work is as a social entrepreneur in healthcare, designing smartphone apps to help manage haemophilia and other health conditions including sickle cell anaemia.

He is also actively involved in haemophilia advocacy, as the Founder and Vice President of the Indian Haemophilia Society Bangalore chapter. He has also designed and developed a national haemophilia registry (NHR) for the Haemophilia Federation in India, trying to keep track of every person with the condition across India.

In 2014, Somu was beginning to seriously worry about how his hepatitis C diagnosis was affecting his health. With the support of his wife Alma Grace Barla (of the Oraon tribes from Odisa State) Somu decided that he would have interferon-based treatment to try and cure himself of hepatitis C. Due to his bleeding disorder, there were fears that treatment would be more complex, and there were risks of serious bleeds. However, he carefully planned his weeks to have interferon treatment on Fridays so that he would recover from the side effects by the following Monday. After 6 months of interferon in which he suffered serious side effects, Somu was cured of hepatitis C.

Somu wishes that he could instead have taken the new directly acting antiviral drugs (DAAs) which cure hepatitis C within 12 weeks with no side effects, but even if they had been available in India in 2014, he would not have been able to afford them. Across India many people with hepatitis C are struggling to access these drugs. Somu knows of only a handful of Indians who have been cured with DAAs, through some kind of special access or clinical trials.

He also wants to promote more awareness of hepatitis across tribal peoples in India. “When I go back to Odisha with my wife, I see how little awareness there is of hepatitis and what it does to communities,” he says. “There needs to be more education and knowledge and much better access to treatment and care.”

Looking back on all he has achieved, Somu is very positive. “I remain grateful to my godfather Dr. Cecil Ross and my godmother Sarojini Alva Aunty for their love and blessings and keeping me motivated all through my life,” he says. And for now, he’s just enjoying life free from hepatitis C. “For the first time since my diagnosis, I can actually enjoy a beer,” he laughs.