Scheie Eye Institute, University of Pennsylvania
Learn the best way to avoid treatments that have limited or non-existent data to support their effectiveness for age-related macular degeneration (AMD).
Over the years, patients with AMD have asked me about various unproven therapies for AMD. As is the case for many chronic, progressive diseases with limited treatments, a number of “treatments” have been proposed, tried, and/or sold for AMD. This includes electrotherapy, magnet therapy, plasmapheresis, the Outback Vision Protocol, and, worst of all, a blinding stem cell therapy. These have limited or non-existent data to support their effectiveness, but desperate patients who are losing vision will sometimes be convinced to try them.
In contrast, there are treatments proven by clinical trials for wet AMD. These include the anti-VEGF drugs bevacizumab (Avastin®), ranibizumab (Lucentis®), aflibercept (Eylea®), and brolucizumab (Beovu®). Please discuss the benefits and risks of each option with your doctor.
For dry AMD, there is the AREDS2 vitamin formulation, which has been shown in NIH sponsored clinical trials to reduce the risk of vision loss in certain patients with AMD.
There are also drugs in clinical trials. Patients who meet enrollment criteria can enroll in these. But how do you tell the difference between a bona fide clinical trial and a scam? One way is price. Typically, real clinical trials will be paid for by a pharmaceutical company that wants to test its drug, or by a grant from the NIH or an eye research foundation. So, patients should expect not to be asked to pay anything beyond what they usually pay for the routine standard of care, or sometimes nothing at all. Profiteering clinics with unproven and, sometimes, unsafe treatments will likely charge thousands of dollars.
This was the recent case with a private clinic offering stem cell therapy for AMD. The company extracted cells from belly fat and injected them into the eyes of three patients with AMD. The patients had horrible complications as these inappropriate cells divided and caused inflammation, resulting in severe loss of vision. Even worse, both eyes were injected, so both eyes suffered this fate. Bona fide ocular clinical trials would rarely, if ever, treat both eyes. Treating only one eye ensures that the other eye will not be affected if there’s an adverse event or side effect.
Clinical trials should be reviewed prior to initiation by an independent institutional review board (IRB), and monitored by a data safety and monitoring board (DSMB). They may be conducted at university hospitals and/or private doctors’ offices.
For patients, navigating to proven, safe treatments, or well-run clinical trials can be confusing, especially in this era of unfiltered and often inaccurate information flooding the Internet.
The bottom line is that the best way to find an appropriate treatment is to follow the advice of a well-qualified, trusted doctor. If you have any doubts about the doctor’s recommendations, get a second opinion from a doctor in a different practice group or institution. Stay away from the snake oil!
Joshua Dunaief, MD, received his BA magna cum laude in Biology from Harvard (1987), MD/PhD from Columbia College of Physicians and Surgeons (1996), completed ophthalmology residency at the Wilmer Eye Institute, Johns Hopkins in 2000, and medical retina fellowship at Scheie Eye Institute, University of Pennsylvania in 2004.
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