The meeting held in Boston, Massachusetts, established recommendations for improving long-term AMD patient outcomes

The Angiogenesis Foundation convened leading retina specialists, patients, caregivers and vision advocates to discuss the need to improve long-term outcomes for people living with neovascular age-related macular degeneration (AMD). The event was co-chaired by Dr. Rishi P. Singh of Cleveland Clinic and Diana Saville, Chief Innovation Officer of the Angiogenesis Foundation.

The participants gave recommendations for improving treatment pathways for AMD and discussed solutions for better long-term patient outcomes.

Age-related macular degeneration is the leading cause of blindness in people over age 50. There are two forms of AMD – wet and dry. The progression of AMD varies, but ultimately it leads to partial or complete blindness. AMD is widespread, impacting as many as 11 million people in the U.S. As the world population ages, AMD will be even more prevalent. The number of people with AMD worldwide is projected to reach 196 million by 2020.

The disease can greatly impact quality of life, making it difficult or impossible to read, drive, watch television, recognize loved ones, and to live independently. Up until 2006, there was no treatment available for people diagnosed with AMD.

Today, wet AMD is highly treatable with groundbreaking medicines called anti-VEGF therapies; these include ranibizumab and aflibercept. These anti-VEGF treatments work by blocking molecules that cause abnormal blood vessel growth in the eye and drive the progression of wet AMD. Anti-VEGF treatments have dramatically changed wet AMD patient outcomes by helping to prevent and even reverse vision loss in some cases.

While anti-VEGF therapies have been revolutionary in the treatment of wet AMD, long-term study data is showing a disparity in patient outcomes over the long term. Without regular injections and close monitoring over the long term, patients in large follow-up studies are losing the vision gains they made in clinical trial settings.

“Our mission has always been to improve the lives of people with diseases impacted by angiogenesis,” said Diana Saville. “The neovascular or wet form of age-related macular degeneration is a perfect example where a huge difference has been made, yet there is much more work to do.”

“Outcomes are significantly better [now] than in the days before we had these medicines. It’s getting to the point where some of our patients and some of the doctors are forgetting what it was like in the days before we had these medicines. It was pretty awful,” said retina specialist Dr. Carl Baker. “We do see patients generally have an improvement in their vision for a while, but our studies are showing that over time many of these improvements are going away. And there’s a lot of interest and a lot of research into figuring out why that is.”

During the summit, the doctors, patients and advocates engaged in a substantive and frank discussion about the current AMD treatment landscape and areas for future improvement. Discussion topics included the differences in short-term and long-term patient outcomes, causes for these differences in outcomes, identifying barriers to the desired future state and recommended actions.

“I’m very happy with the treatment because I still have vision and I can still do the things that I have always done. The first couple of years getting the shots was a very very stressful [thing],” said participant Dan Berkery who is living with AMD and receiving anti-VEGF treatment. “I’m hopeful that these shots continue to do the job and my greatest hope is that the researchers find a cure because there really are an awful lot of people out there that have macular degeneration.”

The full summit and a follow-up roundtable discussion will be synthesized in a white paper and published in the fall of 2017. The Foundation will convene a patient-centered AMD summit in October 2017 where more patients can share their perspectives and experiences living with age-related macular degeneration.