Ajay E. Kuriyan, MD, MS: Patient-centric Needs in Retina Therapy

Retina disease patients are already at a disadvantage for care before any consideration is made towards predatory clinics offering them false hope.

A study presented at the American Society of Retina Specialists (ASRS) Annual Meeting in Vancouver, BC this week reported that a few dozen US-based clinics offer non-regulated cell therapy for conditions such as age-related macular degeneration (AMD) through direct-to-consumer online marketing. These clinics most frequently market towards patients with AMD, and offer intravenous or targeted injection administration of stem cells.

Some of these clinics charge patients up to $10,000 for the procedure. Patients frequently experience adverse events—such as blindness—following the procedure.

While analyzing the investigated patterns of these clinics, lead author Ajay E. Kuriyan, MD, MS, assistant professor at the Flaum Eye Institute and Strong Memorial Hospital at the medical center, talked to MD Magazine® about what may drive patients to risky care, and what can be done to improve their access to the right therapies.

MD Mag: What burdens of ophthalmological care may drive patients to pursue riskier ‘cell therapy?’

Kuriyan: So I think the biggest thing is that there's a lot of hope that it potentially can cure or reverse vision loss. And so, a lot of the treatments that we have available right now have a limitation depending on how much damage is done to the retina already. So patients who are in the situation where our more traditional treatments are not offering further improvement really seek out other potential treatments.

And that's when they find out about these companies through web searches, and the companies have very professional-looking websites that can be very convincing. I think it's difficult for patients sometimes to discern what's a legitimate study, versus what's happening at these clinics.

And what adds another layer of complexity is that a lot of these companies potentially can list a study on clinicaltrials.gov, which is a study repository. It's not an endorsement by the government at all. It's just a listing of all studies that are available.

And so for some of the patients that we've experienced with complications from these stem cell clinics, they actually thought they were enrolling in the study, because that clinic happened to have a study that was posted on clinicaltrials.gov.

Because of the complexities surrounding retinal disease and the prevalence of falsely marketed cell therapies, is there a need for improved patient education?

I think that there is a fair amount of educational material that's available through the American Academy of Ophthalmology for patients, as well as the National Eye Institute. And the information is available.

We know we certainly need to do our part of educating the patients about their disease process. I think that the patients who are most susceptible to looking for the cell therapy clinics are those patients that just don't have a treatment available for their disease process. And I think that that's a tough message to hear for patients, very understandably.

If you feel like there's no option for you, then it's understandable why they're looking for other options. Unfortunately, I think that there is a degree of risk in looking for the treatment options at these clinics.

How important is it for biosimilars and less expensive therapies to become available for these patients?

So, in terms of the cost of healthcare, it's a very prevalent thing we see that it just keeps continuing to rise. There certainly is a demand for biosimilars that are able to produce the same results as the medications that we're using right now. And so, we have a “biosimilar” right now with bevacizumab that is very effective, and is able to get good results for our patients.

That's been very beneficial for the treatment of patients, and it would be great to have more of these in our armamentarium—especially as we look forward to more longer-lasting or extended-release types of medications. To be able to get biosimilars for those would be outstanding.

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