Global Health Matters

Star struck by women fighting neglected diseases

Global Health Matters
21st April 2017
By Thomas B. Cueni

After 30 years in the world of policymaking and business, there is not much that can faze me; but it is fair to say that nothing could have prepared me for meeting Agnes.

This has been a week when Geneva played host to ministers, scientists, WHO officials, philanthropists and business who met to take stock of efforts to improve the lives of more than one billion people who are affected by ancient diseases called “neglected tropical diseases” – NTDs for short.   There is good news.   After 5 years of coordinated donations on such a massive scale, that they warranted a Guinness Book of Records for the most medicines ever donated in 24 hours (some 207,169,292 doses).  In 2015, nearly one billion people are being treated for painful, debilitating and stigmatising diseases, which are the cause of so much poverty in 111 countries around the world.

In just one day, we heard from Dr Chan of the World Health Organization who joined Bill Gates in his praise for the pharmaceutical companies who are living up to their pledge to provide 14 billion donated treatments over 10 years to control or eliminate these neglected diseases.  Ministers (too many to mention) lined up on various stages to declare new commitments of support or renewed ambition to eliminate diseases.  Kofi Annan, former UN Secretary-General, commended all involved for their tireless support to eliminating NTDs.  President  Jimmy Carter and Dr Young Kim of the World Bank spoke alongside healthcare workers, and showed us worms over 10 meters long that grow in a child’s stomach.  We saw videos of waters being cleared of larvae so that they can’t bury themselves into people’s skin and cause blindness or deformities. We heard from people living with elephantiasis, leprosy, river blindness, schistosomiasis, and other tongue-twisting diseases.

But the real stars of this NTD summit, that touched and overwhelmed me, were the amazing, selfless, courageous women, like Agnes. She and others were recognised by Uniting to Combat Neglected Diseases at an award ceremony for the women who are at the front line of tackling neglected diseases.    I had the honour of announcing the award for women working in their communities. I painted a picture of the winner who began to suffer from onchocerciasis  – or river blindness –  over 30 years ago. The parasites destroyed her skin, causing indescribable itching and severe depigmentation, in patterns often called “leopard skin” because of their striking contrasts. Her husband left her and her community shunned her, and she was left to care for two young children.  This was more than enough to break many of us, but not this lady.  She not only took care of her family and herself (and was treated with the Nobel Prize winning donated Ivermectin).  She went on to use her own experience to help others, becoming a Community Drug Distributor, and reaching out to other women who were at risk of exclusion like herself.  Then the big moment came:  I announced her name –  Agnes Ochai from Enugu, Nigeria! This true force of nature, literally took over the stage and won the audience over within seconds with her personality, laughter and poignant story of unwavering personal courage and strength, in unimaginably hard circumstances.

Then other equally amazing women took to the stage. They were disarming in their honesty and poignancy but also total dedication.  Edridah from Uganda received the Likezo Mubila Award for leadership.  Edridah’s daughter once said that having a mother who worked for “neglected diseases” meant that her family was a “neglected family” such is Edridah’s dedication to her job.  Dr Dhekra Annuzaili from war-torn Yemen explained how she overcomes male prejudice in her work, and is able to continue her work thanks to a team that has not been paid for months, and whose families are going hungry.

The real stars in fighting neglected diseases – day in day out, in their homes and communities, in their work – are thousands of amazing women.   There really should be a Guinness Book of Records for them.