Meghan Berkenstock, M.D., an associate professor of ophthalmology and subspecialist in ocular immunology, handles a range of conditions, from cataracts to uveitis. Within the past several years, however, she has turned her focus to treating the ocular side effects of immune checkpoint inhibitors — the game changers in cancer treatment referred to as immunotherapy.
In so doing, she has become a national resource for oncologists across the country.
The opportunity to specialize in this area of medicine was not something she planned, primarily because, “These drugs weren’t out when I was in medical school. They’re new kids on the block,” says Berkenstock. Today, however, she has embraced this complex challenge that involves deep collaboration throughout Johns Hopkins Medicine.
Berkenstock began developing her expertise when she joined the multidisciplinary immune-related toxicity (IR-tox) team at Johns Hopkins Medicine, created by Laura Cappelli, M.D., M.H.S., a rheumatologist and assistant professor of medicine, and Jarushka Naidoo, M.B.B.Ch., now a thoracic oncologist at the Beaumont RCSI Cancer Centre in Dublin, Ireland, and adjunct professor of oncology at the Johns Hopkins Kimmel Cancer Center.
Cappelli and Naidoo launched the IR-tox team in 2017 because an increasing variety of immune checkpoint inhibitors were being approved for different tumor types and indications — which meant an increasing number of oncologists were prescribing this class of drugs in greater numbers and encountering a wide array of side effects in patients.
“These drugs do not have the same side effects as chemotherapy. These different side effects are immune- mediated, and they require specialty consultation,” says Cappelli. “We decided to form this immune-related toxicity team where we would connect the oncologist with the interested subspecialists to see their patients and help manage these cases,” says Cappelli.
The IR-tox team at Hopkins is one of the first organized multidisciplinary programs created to address the unique needs of patients taking immunotherapy medications. “Patients derive a great deal of benefit from having their doctors talk to each other and work together to take care of them as whole people. With the tox team, having complementary expertise at the same institution, and physicians who are committed to working together, really helps the patients get improved specialty care and streamlined care,” says Cappelli.
When Berkenstock became part of the IR-tox team, she was a new faculty member at Wilmer in the process of building her practice. Soon her schedule included seeing several patients a week with ocular side effects of immunotherapy.
“For the most common immune checkpoint inhibitor, 1% of patients have ocular side effects,” she says. “About 40% of those patients get dry eye, which is treatable. Uveitis is the second most common side effect, which can be dealt with using topical or intraocular steroids, sometimes oral steroids. Rare side effects would be problems with the orbit or even optic neuritis. So, it requires a lot of coordination with the oncologist and the general medical team.”
With an increasing number of new immunotherapy medications going through clinical trials and getting approved, more — and different — side effects can develop. It requires constant effort to keep up with the different treatments becoming available, says Berkenstock, but she finds inspiration from her patients.
“Sometimes I get a message from a local provider or an out-of-state provider that says, ‘I have never seen this before. I need your help.’ And then the patient gets here and I can say, ‘I saw this twice this last week. We can definitely help you.’ And the patient says, ‘Oh my God, you've seen somebody else like me,’” says Berkenstock. “The relief comes in multiple levels and in different ways.”
There are times, though, when the side effects outweigh the benefits of a treatment. And those managing the care of patients on immunotherapy medications must consult specialists regarding the decision to stop or continue treatment. However, not all doctors work in an institution populated with an array of specialists. That is where the National Comprehensive Cancer Network (NCCN) comes in.
The NCCN is an alliance of 32 cancer centers in the U.S. that creates clinical practice guidelines regarded to be the standard in oncology. The NCCN’s guidelines are developed and updated by 61 individual panels, comprising over 1,700 clinicians and oncology researchers from the 32 NCCN Member Institutions.
Because of Berkenstock’s experience treating so many patients with ocular side effects of immunotherapy drugs, she was asked to serve as the ophthalmologist on the NCCN’s immune-related adverse events of immunotherapy board. This entity includes one or two representatives of each medical specialty — from ophthalmology to rheumatology to urology — who set recommendations for when doctors should continue an immunotherapy treatment or cease treatment because of a patient’s side effects.
“I'm the ophthalmologist in charge of making recommendations that anybody in the United States who types in [a search bar] ‘National Comprehensive Cancer Network practice guidelines’ will see,” says Berkenstock.
She cites the example of a hypothetical doctor with a patient who has uveitis. Based on various factors, the guidelines might conclude that the risk of blindness outweighs the benefit of the particular immunotherapy drug and the recommendation is to cease the therapy. Guidelines such as this are of paramount importance to doctors practicing in places without easy access to specialists such as ophthalmologists to whom they can refer patients right away.
“It's a heavy responsibility and it requires a lot of time effort, but a lot of love as well,” says Berkenstock. “We doctor to help people,” she says. “It's gratifying not only personally but professionally to know that I’m trying to find the best way to treat people not only at Wilmer, but also across the country.”