Opinion: How do we tackle a disease that most people don’t know they have?

"My sight went in one eye about a year ago, and then it went in the other six months later. The consultant has told me that my sight could have been saved if I'd have come here sooner. I just don’t know what I’m going to do.”

As the consultant broke the news that she had glaucoma, Madame, a mother raising a family of four in rural Senegal, was clearly distressed. She was being treated as part of a Sightsavers eye health program and is just one of millions who have received a similar diagnosis.

Glaucoma is one of the world’s leading causes of irreversible blindness, with an especially high burden in low-income countries with poor health care infrastructure. But due to the complexities in its identification and management, donor interest in the condition has historically been low and thousands of people are needlessly blinded by it every year.

This needs to change.

With the release of the World Health Organization’s “World Report on Vision” in October and clear indications that the global burden of glaucoma is set to increase, a worldwide effort is needed to confront the challenges posed by this “silent thief of sight” — a public health issue that affects millions of people across the planet.

Glaucoma is caused when pressure painlessly builds up inside the eye, damaging the optic nerve. If it’s not diagnosed and treated in time, it can lead to blindness. As much as 40% of vision can be lost without the person noticing. Glaucoma can’t be cured, and lost vision cannot be restored. But further sight loss can be prevented with medication or surgery.

An estimated 76 million people have glaucoma in 2020. Of these, 6.9 million are reported to have moderate or severe vision impairment or blindness as a result. And this is on the rise: The number of people with glaucoma has been projected to increase by more than one-third by 2030, up to 95.4 million.

One of the major problems with glaucoma is that, sadly, most people who have the condition don’t realize until it is too late and can face unnecessary but irreversible vision loss. For example, over 90% of cases in India remain undiagnosed.

In many developing countries, including in Africa — where glaucoma is most prevalent — and South Asia, resources to manage eye health are lacking. Even where they exist, many countries don’t have specialist training to diagnose and manage glaucoma properly. In Nigeria, only around 30% of ophthalmologists have access to laser equipment.

This is not just a challenge for health systems, but also a social and economic burden. Loss of vision can severely impact people’s ability to work and study, and those with disabilities often face higher rates of stigma.

But there are methods available to governments, donors, and organizations to change this and reduce the harm caused by glaucoma.

To tackle glaucoma, we need to:

• Support in-country health care systems and work with governments and local partners to ensure the integration of eye care services within primary health care to support early detection, referrals, and follow-up for people with glaucoma.

• Train primary eye care workers to screen and refer, ophthalmologists to diagnose and provide medical or surgical treatment, and other in-country health professionals to adequately deal with glaucoma.

• Raise awareness among the general public and health care workers about glaucoma through campaigns, eye screenings, community outreach, and even novel methods such as stunts. For example, Sightsavers recently held a “Walk for Glaucoma” in a project region in India.

• Encourage behavioral change such as regularly getting eye checks, which WHO says are one of the best interventions against glaucoma. Also, raise awareness of the long-term nature of glaucoma management — it is often lifelong — to reduce levels of patient dropout from treatment and encourage continued use of eyedrops.

• Ensure treatment programs are affordable and accessible to all by ensuring effective and efficient supply chains of medications to treat glaucoma and by providing funds for equipment to support health systems.

• Share learnings and cooperate globally with both ministries of health and wider development partners. Standardization of methods and practices and investment in data collection are also important.

Last year, we partnered with Allergan and the International Agency for the Prevention of Blindness to start Keep Sight, the world’s first multiyear initiative to tackle avoidable blindness from glaucoma in underserved populations.

Together, we have started pilots in two countries with the highest burden — Nigeria and India — and are working with local ministries of health to make the changes outlined above. In Nigeria, around 5% of the population has the condition, and it is the leading cause of irreversible blindness in India.

This partnership shows that change is possible. Since World Sight Day last year, we have screened over 8,000 people for glaucoma; provided training for eye health professionals to screen, diagnose, treat, and manage glaucoma; and supported the first of many surgeries. Keep Sight’s work continues, with an aim to expand to more countries in need, but it is just a small part of the global effort required for this blinding disease.

Everyone deserves an equal right to sight, no matter where they live. This World Glaucoma Week, we are calling on governments and international organizations to come together to address glaucoma as a public health issue. Together, we can tackle the silent thief of sight.

Devex, with financial support from our partner Essilor, is exploring challenges, solutions, and innovations in eye care and vision. Visit the Focus on: Vision page for more.