I cried tears of loss and rage at the World Hepatitis Summit

At this year’s World Hepatitis Summit in Lisbon, Portugal, the World Hepatitis Alliance presented me with an award that recognized my leadership as the organization’s president and my advocacy efforts to “improve the lives of people living with viral hepatitis.” As the citation was read aloud, tears started to flow — not tears of joy and pride but of loss and rage.

As I stood on the stage I thought of my mother, Helen, who was a passionate Red Cross champion in Nigeria, where we lived, ever ready to help and support women’s and children’s causes. She was a top member of the National Council for Women Societies, the largest women’s association in Nigeria. She was my first mentor in the humanitarian space, as well as my best friend and confidant, and helped me through some of the most difficult moments of my life.

I remembered the day she was first diagnosed with hepatitis C. The doctors told us not to worry, that everyone had hepatitis. But 15 years later, five short months after my wedding, my mother passed away from liver cancer, a direct result of her hepatitis. She never met her first grandchild, who was born a few months later.

I cried because I was being recognized for “improving the lives of people living with viral hepatitis” just as a World Health Organization report, released at the same conference two days earlier, told a discouraging story about this disease. Across 187 countries, deaths from viral hepatitis have been increasing, one of the few infectious diseases where the situation is getting worse, not better. The number of deaths increased from 1.1 million deaths in 2019 to 1.3 million in 2022. Of these, 83% were caused by hepatitis B and 17% by hepatitis C.

The statistics are sobering. An estimated 254 million people worldwide are living with hepatitis B, and 50 million people are living with hepatitis C. Every day, about 6,000 people are newly infected with viral hepatitis and 3,500 people die from it. That’s 3,500 of our family members, friends, neighbors, co-workers, and others.

The source of my tears turned from loss to anger because hepatitis is preventable, treatable, and curable. Yet many people do not have it diagnosed, due to many factors including low awareness and the high cost of testing. And even when it is diagnosed, the number of people receiving treatment remains incredibly low.

The World Health Organization recommends that all newborns receive a dose of the hepatitis B vaccine within 24 hours of birth. In Africa, only 18% of babies receive this “birth dose,” even though the vaccine costs a mere 30 cents. In Southeast Asia and South America, more than 90% of newborns get this vaccine. Are the lives of babies not worth 30 cents to leaders in Africa? Treatment for hepatitis B costs less than $30 per year; curing hepatitis C costs between $60 and $100.

Countries in Africa need leaders to have the courage and determination to invest in health care systems, invest in finding individuals with undiagnosed viral hepatitis, and invest in treating everyone with the disease. In 2016, governments across the world agreed that viral hepatitis is a public health priority by adopting the Global Health Sector Strategy and signed up to eliminate the disease by 2030. With six years to go, global progress toward eliminating viral hepatitis has been slow: globally, only 13% of people with hepatitis B have been diagnosed and only 2.6% are on treatment. The situation is even worse on the African continent, with only 4.6% having been diagnosed and 0.2% treated. The rates are a bit better for hepatitis C, with less success in sub-Saharan African countries.

Despite this grim outlook, the hope I still feel that helped turn off my tears. It begins with my own story: I having been living with hepatitis B since I was diagnosed in 2004. Thanks to regular treatment, I remain healthy, and my wife and five children are negative for the disease.

I am hopeful because, while there is still so much to do, some countries and governments are taking action. Egypt, for example, was recently recognized for “reaching the gold tier on the path to elimination” for hepatitis C through its investments in testing more than 60 million Egyptians to identify those infected with the disease and providing treatment at no cost to them. In my country, Nigeria, state and federal government representatives have begun to take encouraging actions. The Nasarawa State Government officially committed to eliminating hepatitis C and announced a five-year strategic plan to screen 2.5 million people for the disease and treat 141,000 people by 2025. The Taraba, Plateau, Cross Rivers, and Delta states have also developed action and strategic plans and allocated budgets for viral hepatitis care.

I am also hopeful because of the collective strength of people living with hepatitis and those working to eliminate it, who refuse to be drowned out. Together we must continue to hold leaders accountable to their commitment toward eliminating viral hepatitis by 2030. On behalf of them, I urge more governments around the world, and especially in Africa, to take responsibility and live up to declarations they have made about eliminating this scourge.

Danjuma Adda, M.P.H., is the executive director of the Centre for Initiative and Development in Nigeria and a senior fellow with Aspen Institute. He was the committee chair of the 2024 World Hepatitis Summit and the past president of the World Hepatitis Alliance.