Rajat Agrawal, MD, MS is an ophthalmologist and retina specialist with over 25 years of experience between academia and industry. He has been published in leading ophthalmology journals, invited to present in global ophthalmology conferences, and spoken at ophthalmology departments in cities around the world. We are lucky to have him as an Industry and Scientific Advisory Board member!
We sat down with Dr. Agrawal to talk about Retina Global, an international nonprofit that provides access to retinal evaluation and treatment to communities within the United States and around the world. He shared his motivation for developing Retina Global (hint: the major force is to help underserved populations receive high-quality eye care — sounds familiar, right?)
Keep reading to learn more about how entities like Retina Global and 20/20 Onsite are changing the way the world approaches healthcare and clinical studies.
What motivated you to develop Retina Global? What was the need?
Dr. Agrawal: Retinal Global started in 2012 as an idea that we need to provide specialized eye care to underserved communities. There is a significant number of patients with cataracts, glaucoma, and cornea issues, both within the US and around the world, who need access to care and treatment. Similarly, the number of patients with retinal diseases such as diabetic retinopathy and macular degeneration is also on the increase. But with lack of availability of access to trained retina specialists as well as treatments, we realized we needed to do something about that. Which is what led to Retina Global.
With Retina Global, our work is focused on providing patients with retinal disease access to care wherever there is no retina specialist available. We also train eye specialists to become retinal specialists, who then serve the community in need. The main objective for Retina Global is to create a long-term sustainable outcome from our intervention in the communities we work in.
What recent accomplishments in the world of accessible vision care are you proud of?
In terms of what Retina Global has done, we work with retina specialists around the world who have been majorly supportive as volunteers in providing care. Pre-pandemic, we had retina specialists traveling to different places to provide care for a week or so at a time, seeing patients, doing surgeries, providing treatments, and also training people on the ground with the idea that we would be able to create new retina specialists who can then take care of the patients on the ground by themselves. That was a huge amount of focus for us, especially in the regions of Central and South America, and in Africa.
With the start of the pandemic, we realized that people from the U.S. or Europe will not be able to go into these countries. So we tweaked our programs with the help of technology. We already had ongoing telemedicine programs as part of our projects, which provided help with diagnosis and second opinion for complex cases. With lack of travel, we increased the use of these teleophthalmology programs to include training ophthalmologists in our projects, and providing them with didactic lectures and help in surgery. In addition, we took help from the local community of retina specialists - those who were reasonably close enough to the locations of our projects in Africa and in Central and South America, for them to travel to our sites on a regular basis and provide treatment to patients.
There's also a lot going on in terms of accessibility to clinical care around the world. There’s also a significant population around the world with an unmet need as participants in clinical trials. With the focus on clinical trials mostly to larger cities and regions, I think this increasing focus on the underserved communities for access to clinical trials is an excellent step in reaching out to more patients who can partake in clinical studies and thus have access to recent advances in medical care. And in this, I commend the team at 2020 Onsite for what it has achieved so far.
In terms of technology, especially with the pandemic, we have realized that technology can definitely help us in providing some amount of clinical care. Because of the difficulty to visit hospitals and clinics due to the pandemic, some patients had routine follow-ups virtually. If there was no need for the patient to visit the hospital or the clinic, this interaction between the caregiver and the patient avoided an unnecessary visit to the hospital, which was also important to help avoid overcrowding at the hospitals. New innovations are available that allow patients’ retinas to be scanned while the patient is home, which is then available for a caregiver to review in the clinic. Thus, patients can be told to come into the clinic only when there is a possible need for additional review and/or treatments. Obviously, for those patients who required injections regularly, or were scheduled for surgery, they had to come into the clinic. These new technological solutions have provided significant help to patients and clinicians, especially during this pandemic, which I believe, has and will change the way we practice clinical care, especially in the realms of ophthalmology and in retina.
Dr. Agrawal at OIS/Retina@ASRS with Jess Mays, Senior Director of Life Sciences at 20/20 Onsite, and Beth Marsh, Vice President of North America Sales and Marketing for Ophthalmology at Apellis Pharmaceuticals and Industry and Scientific Advisory Board Member.
Which demographics have you found are most at-risk for vision conditions that are left untreated?
As I mentioned earlier, there is a large population that is subserved or underserved at this time. Amongst them, we usually find that people of color and people with economic challenges are the ones who do not have easy access to care. It’s not the fault of the patients themselves, or the fault of their communities that provide care. It’s just the reality on the ground, so to speak. And so that’s the reason why we need to increase the focus on them.
In a significant number of cases, those from these underserved communities lack the economic resources to access specialized care - they are either underinsured or uninsured, which usually brings them to facilities that are not on the frontlines for advanced care or involved in clinical studies. In addition, considering some members of these communities work jobs that do not allow them specified medical leave, those affected end up delaying seeking care, thus making their ocular condition worse.
With Retina Global, we are working to provide specialized eye care to the underserved population within the US. We started the Orange County Eye Project in California, which is focused on providing regular eye care to the underserved population of Orange County, California, with help from ophthalmologists in the community and help from other individuals and institutions. We are also starting a few other projects around the country where we provide care to these patients who cannot afford to access the required care they need.
In these projects, we partner also with industry, who have been a big help with support for instrumentation and disposables. The care we provide via Retina Global at this time is a drop in the ocean so to speak; there is so much more to be done. But these are good initial steps to help make a difference in preserving sight in the underserved communities. In addition, as an 20/20 Onsite IASAB member, I am aware of and impressed by what 20/20 Onsite has achieved so far. And things will only get better in time.
Why is accessible vision care so important, and why may sponsors/biopharma companies overlook the need to create more patient-first care?
One of the issues that we face in terms of being patient-first or providing care is the challenge of who will pay for the care. It takes a lot of investment in time and money for a biopharma company to develop a product or a device. And as we all know so well, a majority of these developmental programs fail. Very few succeed and reach the market, which increases the pressure on the companies and their bottom line. At the end of the day, these companies need to be sustainable and make a profit to survive and continue to innovate.
Sponsors are looking for patients who will remain in the clinical trial to the end, and stay consistent with their visits and treatments. Hence, they seek out known clinics and hospitals that have proven to be an excellent partner in working with them to ensure significant recruitment and trial success. Again, clinical trials are expensive and patient recruitment is key, hence sponsors are uncomfortable working with new and potential partners who may not have a history of being involved in clinical studies previously, or deal with patients from underserved communities, where patient compliance is considered low.
It will require impressing upon biopharma companies and sponsors to consider underserved communities for consideration of being a participant in clinical trials - these companies are looking for patients, and if they are made aware that there are a significant number of patients who can possibly be recruited into clinical trials, they will certainly consider. And in this regard, the work of highlighting the patient/disease profile in the underserved communities by Retina Global and 20/20 Onsite is so important.
Why should retina specialists consider working with 20/20 Onsite to provide care to their patients; what are the benefits to them?
For retina specialists, practice has become pretty challenging. Every practice is strained and has economic challenges, especially with the pandemic that has strained everybody. In these tough and competitive times, retina specialists have to look at additional avenues for outreach to patients.
Hence, it is important for retina specialists to consider the fact that there are patients out there who may not be able to access their care. In this regard, working with 20/20 Onsite will bring them significant connectivity with the underserved patients. 20/20 Onsite has already proven that such patients can be accessed fairly easily. In addition, 20/20 Onsite vans are equipped with the latest equipment on board, which, along with well-trained people on board, can deliver high-quality care to patients. In addition, some of the retina specialists have challenges in terms of getting access to the latest equipment, and that's where a 20/20 Onsite mobile vision clinic can potentially play a role. Patients can be examined on the van and that's how the practice can increase its outreach to more patients.
From a clinical trial perspective, many retina specialists have patients who can potentially be part of clinical studies, but they are not aware of how to go about it. They may also lack the resources to hire clinical trial staff. That’s an additional advantage of retina specialists’ collaboration with 20/20 Onsite — their patients can get access to new treatments or be part of clinical studies, which can all help both the retina specialists and their patients in the long term.
What objections do you hear about mobile care being a fully viable option for retinal care? What does mobile care need to overcome in order to gain acceptance?
Healthcare providers have always been comfortable working within the confines of a brick-and-mortar clinic/hospital. Eye care in general and retina care, in particular, has undergone a significant change in how we provide care to our patients. We now treat patients with intraocular or intravitreal injections in the clinic setting, which was considered not possible some years back. And hence, we have to start thinking outside the box and change our mindset. 20/20 Onsite vans already provide diagnostic capabilities - maybe we can start providing lasers and even injections to patients in these vans. The van is an extension of the retina clinic - with reasonable steps to provide adequate sterility as is being done in the clinic, I feel it will be acceptable to provide some of the treatments to patients in these vans. Maybe retinal surgeries in the vans in some foreseeable future! But at this time, I think we can start with steps that are acceptable to the retina specialists while making it easier for patients to access quality care.
What are your three best tips for creating more accessible care for clinical trial patients?
I would say first is the messaging: we have to increase outreach to potential partners. Whether it’s publications, presentations in conferences, talking to various entities like nonprofits and other organizations, would definitely help increase the potential access.
The second would be building bridges with the stakeholders. The two important stakeholders here would be the ophthalmologists/retina specialists and the patient community. While reaching out to ophthalmologists is relatively easy, outreach to patients is relatively difficult. One way is to work with nonprofit groups such as Retina Global, which can reach out to the patients they provide care for. In addition, there are large retirement communities in various states, and speaking to them will be educational to the community since a majority of eye and retinal diseases tend to be more commonly seen in the older population.
The third thing is to provide enough and reasonable evidence to the sponsors and biopharma, who play an important part in how clinical trials are run and managed. Every sponsor wants faster recruitment of eligible patients, while they also want to ensure the trials end soon. With what 20/20 Onsite has already done, it should give enough proof to the sponsors that such approaches can reap rich dividends to them.
How can Retina Global and 20/20 Onsite both make a difference in underserved communities?
The study that you referred to that 20/20 Onsite has done is a huge step forward in terms of identifying that population because that's a big deal, right? I mean, if you're able to find a population that is potentially underserved, that is the first step towards getting them involved in the provision of clinical care. So I think right now, Retina Global and 20/20 Onsite are pretty much focused on the same subset of the population.
There are avenues for both organizations to work together. At the end of the day, 20/20 Onsite is working to get patients on board in terms of provision of care but also increasing the involvement for these patients to be part of clinical studies. At Retina Global, we’re pretty much doing the same. In addition, we have been involved in organizing and conduct of clinical studies in underserved areas around the world. With similar objectives, I think both organizations can definitely work together to help make a difference.
What questions or topics do you want to discuss at the next board meeting?
One of the aspects that we would probably do from a 20/20 Onsite perspective is to showcase the fact that 20/20 Onsite on-site can get more patients on board — literally on board — and showcase that we can get access to more patients with diabetic macular edema, which is a significant focus for clinical studies or patients with macular degeneration.
I think the next step is figuring out ways to get messaging out there and speak to the community, speak at conferences, and in smaller group settings, and also write publications that could potentially increase the attention of the topic and beyond.