CBJF Seminar to Address NMOSD Care, COVID-19 Concerns on March 11
At an educational seminar next month, experts will discuss advances in the diagnosis and care of neuromyelitis optica spectrum disorder (NMOSD), as well as the ongoing COVID-19 pandemic and how it is affecting the NMOSD community.
Sponsored by the Connor B. Judge Foundation (CBJF), the half-day virtual seminar, set for March 11 starting at 8:45 a.m. ET, is being presented by the Cleveland Clinic Mellen Center. Additional information and registration, required by March 9, can be found here.
“We will be discussing with the actual healthcare experts the emerging treatments for both acute relapses as well as preventative care,” Chelsey Judge, PhD, told Neuromyelitis News in a phone interview. “We’ll talk about COVID and NMO consideration, and mental health aspects of NMO and how we can at least recognize and manage them.”
Judge is the scientific adviser of the Cleveland-based CBJF, a nonprofit organization aimed at raising awareness and supporting research for NMOSD and related conditions.
The namesake of CBJF, Connor Judge, is Chelsey’s younger brother, who was diagnosed with NMOSD in 2014, at age 22, after experiencing blindness and leg paralysis. Chelsey Judge and her mom, Pam, who serves as CBJF’s secretary and treasurer, credit the many excellent doctors and healthcare facilities in the Cleveland area for Connor’s quick diagnosis and subsequent care.
This includes, in large part, the Cleveland Clinic, with which CBJF has fostered a close relationship, collaborating with the hospital on various events, including the first Ohio Rare Disease Day held last year in partnership with the National Organization for Rare Disorders.
Connor’s neuroimmunologist at the Mellen Center, Mary Rensel, MD, is among those taking part in the March 11 seminar.
“The goal here that we’ve been working toward at the CBJF is really to bring more education and awareness, not to just to the NMO patients, but their families … and anyone who wants to try to learn more about NMO and how to treat and manage it,” Judge said.
She expects the seminar will provide useful information to people living with NMOSD, as well as help their caregivers and loved ones to better understand the disease.
“So that’s really understanding appropriate triggers of relapse, how to manage them acutely, what to do in a crisis or [in case] of an acute relapse, and differentiating that from preventative treatment,” Judge said, noting that a better understanding can lead to improved quality of life and more effective use of treatments.
Judge also stressed that NMOSD’s impact goes beyond its physical toll, with symptoms that may not be immediately noticeable.
“If caregivers can more appreciate that there’s not just the physical symptoms; there’s the pathological fatigue, there’s the anxiety of having a chronic severe illness, the depression that can result from it,” she said. “A better understanding of the psychosocial burdens that not only happen to the patient, but the greater family unit could be not only validating, but hopefully very enlightening.”
COVID-19, the ‘elephant in the room’
Another major webinar topic, according to Judge, is the “elephant in the room” — the COVID-19 pandemic, which has affected rare disease populations in a variety of ways, the NMOSD community being no exception.
While NMOSD itself isn’t considered a risk factor for COVID-19, many of its treatments are immunosuppressants — medications that lower the activity of the immune system. Since the immune system is important for repelling viral invaders, immunosuppressants taken to control NMOSD can increase the risk of infection or a serious illness related to COVID-19.
“Because of that, most NMO patients, if not all, have been considered high risk and have been taking public health recommendations very seriously and potentially isolating themselves in their homes,” Judge said.
The pandemic has been largely detrimental to the mental health of the public-at-large. For those with NMOSD, where mental health difficulties are already commonplace, these effects may be magnified, according to Judge.
“I think for NMO patients, it’s really just about a legitimate fear of what the virus could do to them,” she said.
Judge advises patients to stay in touch with others during the pandemic as much as is safely possible.
“Stay strong and stay connected with other humans as best as you can safely, to cope with the isolation, to cope with the mental health issues that we know are popping up right now. Check in on your friends, not just for yourself, but for them, and that will make people feel better and more connected,” she said.
COVID-19 vaccines and NMOSD
In recent months, two vaccines for COVID-19 have been authorized for emergency use in the U.S. and elsewhere, with others poised for likely approval in the near future.
“I think NMO patients have a big question about the vaccines and their potential efficacy implications based off the type of treatments they’re on,” Judge said.
The two approved COVID-19 vaccines, one from Pfizer and the other from Moderna, are both mRNA vaccines — meaning they use messenger RNA (mRNA) to deliver the instructions to cells for making a viral protein. The cells make the viral protein and the immune system is then activated to recognize the protein, so that the immune system can more effectively mount an attack against the actual virus if it is later encountered.
Since vaccines work by activating the immune system, a concern exists that they might be less effective in people on immunosuppressants.
“For NMO patients and their clinicians, the big concern is about efficacy. We don’t have any data yet from the approved mRNA vaccines and NMO patients and those on an immunosuppressant,” Judge said.
Nonetheless, because mRNA vaccines don’t contain any live virus, current thinking is that people with weakened immune systems should still be able to safely take them.
“Most clinicians are thinking that overall safety won’t be the biggest concern,” Judge said.
According to the U.S. Centers for Disease Control and Prevention, immunocompromised people may still receive the vaccine, but the agency does caution that safety data are not yet available for these patients.
As Judge points out, the efficacy of the COVID-19 vaccines currently approved for public use has been thoroughly validated in rigorous clinical trials that tested them in tens of thousands of people.
“We know that these are very effective vaccines at preventing severe disease,” Judge said.
Because vaccines work by activating the immune system, the natural immune response to a vaccine can result in “flu-like symptoms” — fever, fatigue, aches, etc. — which are all indicative of immune activation.
“For NMO patients, this is very relevant because if you get a fever, that can worsen your neurological symptoms,” Judge said.“But that’s not a real outbreak, because an NMO relapse is worsening or new neurological symptoms lasting for at least 24 hours without presence of fever or infection.
“I think that’s something really important for NMO patients to be aware of,” she added, “and to not freak out.”
Data to date are not clear-cut as to whether vaccinations, in general, can lead to a worsening of NMOSD symptoms in specific instances. However, there is substantial evidence that infections can cause NMOSD worsening or relapsing. Since vaccines prevent infections, “the net benefits of vaccines, even in NMO patients, outweigh the potential harm,” Judge said.
As for staying properly informed and figuring out the best course of action, Judge has just one piece of advice: “Stay clear of the misinformation on the internet, and talk with your trusted healthcare provider about any scientific and medical questions.”