Marakwai Musanka was worried. Since her husband died years ago, the mother of six and grandmother of four had been the sole provider at home. A member of the Maasai community in Kenya, Musanka earned money by selling beadwork to feed and clothe her kids, and to pay for their school fees. But her ability to care for her family was at risk: she suffered from vision loss due to trachoma, a neglected tropical disease – one that if left untreated, leads to constant pain, and could leave her blind.
“I thought about being unable to cook for my children,” Musanka said, through a translator. “Even fetching firewood, I saw that it would be a big problem if I can’t light a fire to cook for my children, and with no sight.”
Through outreach from community health volunteers, Musanka was encouraged to get help. She learned that antibiotics and a routine corrective surgery could prevent her worst fear – becoming blind and being unable to provide for her family. A surgeon eventually operated on both of Musanka’s eyes, and she no longer feels the constant pain that had prevented her from doing everyday tasks.
A confluence of forces working together have helped make it possible for people like Musanka to get the care they need. Access to safe and effective healthcare is possible – even in the hardest to reach communities – with a shared vision and sustained coordinated response across private and public sectors. That includes everyone from government agencies and corporations to community health volunteers on the ground.
What is trachoma?
Trachoma is almost entirely preventable, and yet, this neglected tropical disease caused by a bacterium is the leading infectious cause of blindness globally. An estimated 1.9 million people currently suffer from visual impairment due to trachoma and about 125 million people remain at continued risk. Most live in places that are hard to reach where people face extreme poverty, impaired sanitary conditions and have limited health education access.
Repeated infections associated with trachoma can cause scars to form on the interior of the eyelid. This can lead the eyelid to turn inward, a condition known as trichiasis. Because of this, the eyelashes scratch the eye every time the person blinks, which can cause painful ulcers. Without proper intervention, such as antibiotics or surgery, a person with trichiasis will likely become permanently blind. Often, trachoma begins as a bacterial infection in childhood, which is then spread to other children and their caregivers – usually women – in the community.
The economic and social toll of trachoma on those impacted, their families and communities can be devastating. According to some estimates, the cost in terms of lost productivity from the infectious disease can be as much as $2.9bn to $5.3bn a year. When trichiasis is included, that number increases to $8bn.
Veronica Kisotu knows firsthand how trachoma can change one’s future. For the past four years, Kisotu has worked as a health volunteer in the Maasai community. Her grandmother went blind from trichiasis, and as a result, could no longer afford to pay school fees, forcing Kisotu and her younger sister to drop out. Kisotu’s sister also took on the added responsibility of becoming their grandmother’s guide. Today, Kisotu hopes to use her family’s experience to educate patients about their options and prevention – including adopting important hygiene measures such as washing their hands and face.
“That is why I volunteer, to empower these people to prevent this disease so that [it] cannot affect the family either financially or physically,” said Kisotu, who dreams of becoming a nurse one day.
Working together
Cross-sectoral partnerships and continuous coordination at all levels – local, national and international – have been critical in educating communities and eliminating trachoma from some of the most affected countries. The International Trachoma Initiative (ITI), a program of the independent not-for-profit Task Force for Global Health, is one organization that’s doing its part to reach the World Health Organization’s goal of eliminating trachoma by the end of the decade as part of its NTD 2030 roadmap – not an easy task as it effectively means bringing the number of infections down to zero in a country. ITI was co-established in 1998 by biopharmaceutical company Pfizer Inc. and the Edna McConnell Clark Foundation, and manages the allocation and distribution of Pfizer’s donated antibiotic. It was this partnership that led to a turning point in controlling trachoma transmission in areas where the disease is endemic through treatment with oral antibiotics distributed during mass drug administration.
To date, 1 billion donated doses have been delivered, reaching more than 300 million people in more than 40 countries. In June 2022, Pfizer announced the extension of its antibiotic donation through 2030, enabling continued trachoma elimination programs in more than 19 countries.
“It is a rare opportunity to be able to contribute toward the elimination of a disease that has devastated generations of people. The data show we are making incredible progress and that global elimination truly is achievable – a chance that comes perhaps once in a lifetime,” said Niesha Foster, Vice President, Product Access, Global Health and Social Impact at Pfizer.
Along with other groups and agencies, ITI plays an essential role in the World Health Organization’s (WHO) recommended SAFE strategy for trachoma control.
Quick GuideSAFE stands for:
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- Surgery to treat the blinding stage of trachoma
- Antibiotics to clear infection
- Facial cleanliness, and
- Environmental improvement, particularly improving access to water and sanitation
Each of these interventions together are critical to eliminate blinding trachoma. It’s recommended that those who are at the very advanced stage of trachoma get corrective surgery. Before many of the community outreach programs began, such as the one in Narok County, there was a fear when patients heard the word surgery, said Fridah Memusi Tiren, an ophthalmic clinical officer and eye surgeon at Narok County Referral Hospital in Kenya. Tiren’s grandmother also suffered from trachoma and lost her sight in one eye due to the disease, though the other was saved by surgery.
The fear would prevent many people from seeking help, Tiren explained, but by conducting frequent visits on a quarterly basis in the community, they were able to reach trachoma patients where they were and treat with antibiotic or perform surgery right away. As such, there are fewer trachoma/trichiasis surgeries needed since Tiren began working at Narok in 2012, she says.
“If we are able to eliminate this small backlog that is still there, for me, we’ll have saved the community from avoidable blindness,” Tiren said. “I’d like to say the future is bright.”
Looking ahead
Indeed, as a result of global elimination programs, the number of people at risk of the disease has decreased by 92% since 2002. According to WHO, 15 countries have eliminated trachoma as a public health problem. More countries in which ITI operates – including Benin, Burkina Faso, Burundi, Eritrea, Guatemala, Guinea Bissau, Mauritania, Senegal, and Vietnam – are also nearing elimination.
“I think that in the next few years, with the cross-border work and the intense activity of the Ministry of Health and the really engaged partners, trachoma is going to be gone from Narok, as it is from the rest of Kenya,” says Paul Emerson, Director of ITI. “There is no reason that a disease like trachoma should exist in the modern world.”
The effort is already having a positive effect, Kisotu remarks: “These trachoma campaigns … have really changed our community.”
ITI, Pfizer and dozens of other partners – as well as Kisotu and Tiren – continue to work toward the goal of elimination, so people like Marakwai Musanka don’t have to live in fear of losing their eyesight to trachoma.
Musanka isn’t worried anymore. And she’s counseling other women in her community to get the help they need too, before it’s too late.
“I am filled with great joy, and it has brought light into my family,” Musanka said.