Only research can give us the answers

Posted: Tuesday 03 December 2019

A lot has changed over the last 20 years for people with macular disease. We know much more now, thanks to the generosity of our supporters who've helped fund groundbreaking research such as stem cell and gene therapies.

However, one of our members, Kate was diagnosed with macular disease 20 years ago. And while medicine has progressed a great deal since then, ultimately there is still no cure for macular disease and a diagnosis is just as devastating as it was then. We haven’t been able to stop this terrible condition from stealing people’s sight, confidence and independence.

It is more crucial than ever before that we Beat Macular Disease. Another 20 years without a cure means another 20 years of people receiving the same devastating news Kate did in 1999.

We know progress has been made, especially with treatment for wet age-related macular degeneration (AMD) seeing great strides in the last two decades. In 2006 anti-VEGF injections were introduced and Lucentis was approved by NICE in 2008. We know this alone has changed the outlook for hundreds of thousands of patients suffering with wet AMD. Now, we know there are new drugs on the horizon, which are due to be reviewed by NICE, which are longer lasting and could reduce the burden on patients travelling to frequent injections. One of these drugs is Brolucizumab and has been found to work for up to 12 weeks in approximately 50% of patients. We know too well the burden these regular appointments have on patients and their families and these new drugs could make a real life difference.

However, while there is a treatment for wet AMD the outlook for patients with dry AMD, and other types of macular disease, is far less hopeful as there is currently no treatment. But over the last 20 years our knowledge of the disease has improved greatly and there have been some exciting developments in stem cell and gene therapy research, which could be life changing for these patients. For example in February this year, we saw the first patient treated with gene therapy for dry AMD. The groundbreaking trial in Oxford will see up to 10 patients treated with this technique and we look forward to hearing more about early results, which are expected next year.

These are exciting times in macular disease research and I am hopeful we are moving in the right direction. Every piece of research is teaching us something new. But so much more must be done. We need to change the future and Beat Macular Disease for good.

Help find a cure.

Cathy Yelf, chief executive of the Macular Society

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