For many of us, one of the scariest possible complications of diabetes is vision loss -- knowing that no matter how well we manage our blood sugars there's no guarantee we won't someday experience some form of eye disease. While injections and laser treatments exist to help halt the progression, there's currently nothing that can actually restore vision once it's lost as a result of diabetes.
A collaboration of researchers and experts hope to change that, with a new research initiative called "Restoring Vision: A Moonshot Initiative" led by JDRF, with Mary Tyler Moore's husband S. Robert Levine, and key researchers in the eye health field. With November being both Diabetes Awareness Month and Diabetes Eye Disease Month, it's a very timely initiative indeed.
The aim is to transform the understanding and tools we have about diabetes-related eye disease, both for prevention and regeneration of sight for affected PWDs (people with diabetes).
"That's our moonshot, to bring back vision to those who've lost it," says Dr. Sanjoy Dutta, JDRF's VP of research and international partnerships. "That word isn't used just because it's sexy, but because this is very challenging. We aren't daunted, but this is a very ambitious goal and it takes a lot to galvanize something like this."
Inspired by the Late Mary Tyler Moore
The idea of getting aggressive on this difficult task came together recently as a way to honor the late T1 advocate and actress Mary Tyler Moore, who left a decades-long legacy in diabetes through her work with the JDRF and beyond. She passed away in early 2017, and it's public knowledge that she spent the latter years of her life dealing with vision loss as a type 1 diabetes complication.
Her husband, Dr. S. Robert Levine, approached JDRF after her death with the desire to do something to push research forward in this important area. The kickoff came in January 2018 (which happened to be the one-year anniversary of Mary's death), when JDRF and the Mary Tyler Moore and S. Robert Levine Foundation held a first-of-its kind brainstorming workshop that included numerous other orgs and partners from across the globe.
“In the decades Mary worked with JDRF to help relieve the burdens of type 1 diabetes for others, T1D had a devastating impact on her life, stealing her joy and independence due to significant visual loss from diabetes-related eye disease,” Levine said. “This moonshot is about restoring the independence lost by our loved ones due to low vision. Achieving these goals will require a willingness to open doors to new thinking, take risks, marshal diverse resources, create an executable plan and undertake specific actions, together. If we can do this, I am confident we will see Mary’s vision of a cure for this diabetes-related complication made real.”
Some key things to know about D-related eye disease:
- Roughly 40-45% of PWDs with T1D develop some type of eye disease, whether that leads to vision loss or not. Recent research from 2018 shows a global stat of ~35% of all PWD experiencing related eye disease.
- While it's the leading cause of blindness in working age adults, D-related eye disease doesn't always lead to vision loss in the case of lesser-impacting diabetes retinopathy.
- However, no treatment exists to reverse the clinical effects, and most research to date has been primarily focused on preventive therapies for early intervention before any vision loss sets in.
I know personally how scary this can be, as I was diagnosed with mild retinopathy back in my mid-20s and have been working to manage it through best-possible BG control and a healthier lifestyle through the years. Luckily, my retinopathy hasn't progressed to a point where anything more is needed as of now -- though it terrifies me to the bone every single time I think about it.
That's why this initiative is so darn important for our D-Community.
Restoring Vision: An Important Moonshot
The January 2018 brainstorming workshop brought together 50+ global experts in diabetes-related eye diseases as well as many experts from outside of diabetes -- physicians, cell biologists, tech developers, clinical researchers, non-profits and government. That meeting led to the development of a tentative blueprint for moving forward, but we're told the summary isn't yet finalized and will likely make the rounds in scientific journals starting in 2019.
At a high level, this is what they discussed:
- delineating key factors that lead to visual loss in T1D
- acknowledging the limits of current diagnostics and treatments
- analyzing the landscape of current state-of-the-art approaches in development to restore vision
- learning from next-gen approaches in development in other disease areas
- identifying new approaches with potential to reverse diabetes-related eye disease from advanced stages
- generating a prioritized list of approaches based on potential impact and feasibility
If you're familiar with the term moonshot, you know it refers to bold, exploratory, ground-breaking projects often undertaken for the sheer sake of trying to accomplish the near-impossible -- without any expectation of near-term profitability or benefit.
That should tell us something about what this group of experts believes they're up against. But clearly, there's consensus that more CAN and SHOULD be done about the current approach to diabetes-related eye disease.
“When you ask patients with diabetes what they fear the most, it’s losing their vision,” said Dr. Thomas Gardner, chair of JDRF’s Restoring Vision workshop who is a professor of ophthalmology and visual sciences at the University of Michigan Medical School. “More research is imperative to fill treatment gaps and fundamentally understand why diabetes affects vision loss and how we can reverse it.”
No doubt, Dr. Gardner.
While the above list of "goals" may be quite high-level and abstract at this point, there are also some intriguing ideas for more tangible action already being floated:
- an organ donation program specific to those who've developed or experience d diabetes-related eye disease, including retinopathy (something along the lines of JDRF's nPod for organ donation)
- possibly using stem cells to regenerate retinal function and eye tissue where it's been lost
- technology could be used to help make life easier for people with vision loss -- like allowing them to read 10-15 words a minute rather than zero now, or being able to move around around their home without bumping into furniture, and walk outside navigating by light and dark instead of complete darkness
- gene therapy that makes it possible to reach those milestones and improve lives, short of "curing" vision loss for PWDs who've lost it. This research is already happening in the UK with Dr. Peter Coffey's work there.
JDRF's Dr. Dutta tells us there is a lot of hope associated with this new intiative but it's going to take time -- and significant funding -- to move the ball forward. Aside from the Mary Tyler Moore and S. Robert Levine Foundation, the JDRF is working with groups like the National Eye Institute, Research for the Prevention of Blindness and New York Stem Cell Foundation, as well as Pharma companies, data-players like Google-Verily and Onduo, Glooko and IBM Watson on the machine learning front, and many others.
"There are ways we can do a lot more than we have in this area, with all the developments in Artificial Intelligence and machine learning. From there, we're putting a cohesive strategy together and we're setting the groundwork for more as we move ahead," Dutta says.
In the next year, he expects to see more discussion on this initiative and also more specific focus groups on certain areas -- from pre-clinical research, funding aspects, resourcing, and clinical trial design.
Down the road, Dutta says our patient community feedback will be critical in assessing Quality of Life (QoL) measures and what community members want to see come from this kind of research initiative.
"We don't know what the timetable may be on this, but it's not just a two-year plan... this takes time," he says. "We have to prepare for this and don't want to fail at the outset."
We're excited to see this happening, even at the early stages of developing an action plan. Especially for all of us who've experienced retinopathy and other forms of vision loss, it's a very personal issue and we look forward to hearing what materializes before long!