Two Updates on COVID-19

Interview with Dr. Michael Levy on His Experience Treating COVID-19 Patients

Over the past few weeks, a neurologist on SRNA’s Medical and Scientific Council, Dr. Michael Levy, was assigned to a COVID-19 unit at the Chelsea HealthCare Center in Massachusetts. Although neurologists are not usually the first physicians treating people with COVID-19, the Chelsea HealthCare Center was in need of extra physicians to cover the influx of COVID-19 patients. SRNA’s Associate Director of Research and Education, GG deFiebre, recently interviewed Dr. Levy on his experience at the Chelsea HealthCare Center. You can view the interview and read the transcript below.

Dr. Michael Levy is an Associate Professor at Harvard Medical School. He is the Director of the Neuromyelitis Optica Clinic and Research Laboratory, and Research Director in the Division of Neuroimmunology and Neuroinfectious Disease at Massachusetts General Hospital. Dr. Levy specializes in taking care of patients with neuroimmunologic diseases including multiple sclerosis, transverse myelitis, optic neuritis and neuromyelitis optica. In the laboratory, Dr. Levy’s research focus is on the development of neural stems for regenerative therapy in these diseases. He uses rat and mouse models to test the survival, differentiation and functional capacity of human neural stem cells to improve neurologic function in post-inflammatory conditions. The goal of his laboratory and clinical effort is to translate the basic science stem cell work to a human trial in transverse myelitis and other neuroimmunologic diseases.

Dr. Michael Levy: [00:00:06] I was assigned to duty in the coronavirus clinic in Chelsea, Massachusetts, which is a hotspot of Boston where I think,almost up to a third of residents have been exposed to the virus, and at least either developed immunity to it or have been sick. There’s a clinic there, mostly, almost entirely staffed by internists, pulmonologists and other primary care physicians. But they needed all hands on deck, and they asked every department to contribute a few people, and I got summoned.

[00:00:38] And I show up there, and first thing they do is they teach me how to gown my personal protective equipment from top to bottom. There’s somebody there who makes sure that in between every patient, as I disrobe and put on my new gown, that I’m completely covered, even my back. And they tape me up and everything, so they take every precaution. But we do reuse our N95 masks, it’s pretty much stuck to my face all day long. And then we have goggles and everything to cover up.

[00:01:08] So then we get assigned 20-minute slots per patient. I’d say that a few weeks ago when I started, most of the cases were identical. It was just, “I have fevers, I have shortness of breath, I have a cough, and I can’t smell.” And they came in for testing, and as long as they met certain criteria by the state, they were eligible for testing. Those criteria have relaxed over time, and so now, all you have to have is one symptom. A single symptom. You don’t have to have an underlying disease or anything, in the state of Massachusetts at least. And so patients would come in, get tested and, on average, at the Chelsea Health Clinic, about 40% were positive. So it was a really, really high rate.

[00:01:53] But what I really want to mention is that, over time, the patient population has changed. It’s no longer just, “I have these symptoms and I want to come in and get tested.” I would say that more than half are people who’ve already been tested, tested positive, and are coming back in because they’re having problems. So, the ones who are fine, who get the infection, they want to know they have it, they test positive, we tell them to quarantine, they go home. We don’t necessarily hear from them much anymore. Now, what we’re seeing are the folks who are getting sick, who need more intensive care.

[00:02:30] So we’ve been hospitalizing some of them, the ones who have abnormal vital signs. And then, a lot of them have super infections, so then we get a chest x-ray, we see an additional infection on top of the coronavirus pneumonia. And so then we can treat that at home. So it’s been a little bit of a shift.

[00:02:48] And then this week, several of my shifts were canceled because patients are not making as many appointments. So that was a hotspot, Chelsea, Massachusetts, and I think there’s going to be these hot spots that move around the country, and every community will go through it. And, the good thing is that as long as it doesn’t overwhelm the health system, then it’s okay that people come in and get the care that they need, and then we can treat them and then they can go home. And there is a herd immunity that develops so that they provide protection to their neighbors and loved ones.

[00:03:30] And, I think, ultimately, this is just my prediction, is that every community is going to have to go through this. They’re just going to all have to deal with the widespread infection. The ones who need care, need to get care and the ones who can handle it at home, just go home and deal with it. And then over time the community will build immunity to it. That’s my sense of how this is going.

GG deFiebre: [00:03:53] Is the clinic a walk-in clinic? Do the people make appointments? And was it people coming in with more mild symptoms getting tested? What was the setup?

Dr. Michael Levy: [00:04:06] Yeah, it’s full spectrum. So if all you want is a test now, I don’t know if you’ve seen on the news, they have these nurses and providers behind plexiglass with these arms that stick out. So that they can do multiple nose swabs without having to change their gowns. And so, we have that on the first floor. So, if you’re a walk-in, you just want to come in and get tested, that’s where you go. If you walk in and you don’t look healthy, and there are people there who kind of check on everybody, even if you’re standing in line, if you look like you’re having some shortness of breath, you get moved up. And so that’s the second floor, where I’m stationed.

[00:04:42] And they know I’m a neurologist. They’re not going to give me the most difficult cases. And then we have sort of the third-tier clinic, which is where if you have underlying conditions like heart disease, lung cancer, something like that, then you really need intensive care. They’re going to be assigned somebody who has that expertise, like a cardiologist or a pulmonologist.

[00:05:04] And so it’s a full spectrum clinic, and there’s basically around-the-clock ambulance drivers that take patients, I’d say maybe two per hour, that type of thing, that are just taking patients to the hospital, not necessarily to be hospitalized and end up in intensive care, but because they need additional care or maybe additional testing. There are a lot of people, as you may have heard in the news, who have blood clots and other complications from coronavirus, that need additional type of testing, like CT scans, to rule out blood clots in the lungs, and the clinic doesn’t offer that. So there’s basically just a circuit between the clinic and the hospital that runs all the time.

GG deFiebre: [00:05:40] Okay. As a neurologist, have you had to shift your thinking? Or has anything changed in terms of how you’re approaching patients? How has that experience been?

Dr. Michael Levy: [00:05:55] Well, I still maintain a telemedicine clinic, so all my patients have access to me through webcams. It’s not as personable or as meaningful, or you can’t examine patients, but it’s still helpful just to get through the period. I would say that we only have 20 minutes to get through some of these cases.

[00:06:17] When I have encountered a patient who has a neurological issue like multiple sclerosis or back pain or something like that, I want to ask about it but I really just don’t have time and the bandwidth. There’s really a need to get through a lot of cases in this Chelsea Clinic. So, I’ve kind of put my neurology mindset on hold for now. I’m now just an internist, and then I hope to go back to my neurology life in the future.

GG deFiebre: [00:06:48] Right, right. Makes sense. Have they given you any kind of a timeframe of how long they think this might be happening?

Dr. Michael Levy: [00:06:57] They gave us a six-week timeframe. They said after six weeks, they’ll start to pull doctors from other departments like obstetrics or wherever. And, but like I said, this week I was supposed to report to duty, and so far, they said, “No need,” you know, “We’ve got it covered. There aren’t that many patients who are making appointments.”

[00:07:16] And then the walk-ins, there’s always capacity to sort of flex. And, if they call me, of course I’ll show up, but I think it’s really good news. I’ve sort of tracked the numbers in Boston, and I think the numbers tend to be trending down. We’ve seen a few previous downtrends that have then just spiked back up, so I think it depends on the time that things get reported. But, there’s no harm in being optimistic.

GG deFiebre: [00:07:42] Right, and do you think it’s due to the people taking action, in terms of doing social distancing and the other recommendations by CDC for example?

Dr. Michael Levy: [00:07:53] Yeah, I think social distancing has probably the biggest impact. I’ve seen studies, different communities depending on where you are, that somewhere between 3% and in Chelsea, 30% of people have been exposed. That means the majority still have not, and when we relax our social distancing measures and let people back to work, there’s going to be a second surge.

[00:08:16] And I think we’re a little bit more capable of dealing with it now. We know a lot more, we can predict what would happen. We still need to make sure our healthcare system isn’t overrun, because as long as it’s not, I think, again, that’s going to end up being our track, is just going through it.

[00:08:31] If we had a vaccine or a great treatment, that would change the game, obviously. Then we wouldn’t have to worry so much. But I think the vaccine is still some time away, treatment trials have not proven spectacular, and so we’re just doing the best supportive care that we can, and doing the best.

GG deFiebre: [00:08:51] Right. And then have you had to take any precautions when going home, after leaving the clinic or anything, just to obviously protect your family, or yourself too, from getting sick?

Dr. Michael Levy: [00:09:01] Yeah. So, my family is aware when I come home. I text in advance. They leave the door open for me, so I don’t touch a thing. I just go straight upstairs, take a shower, throw my clothes in the wash, and then I wipe down my car. But I’ll also say that we’re completely covered, head to toe, in the clinic, and I’ve gotten very, very close to a lot of coronavirus-infected people, and I have not yet – well, that’s the problem is, I don’t know if I’ve been infected or not.

[00:09:30] I haven’t done my own serology test. So it’s certainly possible that I had been infected and now I’m okay. And maybe I don’t know all that personal protective gear and I don’t need to take all these precautionary measures at home. But until I know, this is what I have to do.

GG deFiebre: [00:09:48] Right, right. Okay. Is there anything else important for the community to know from your experience during this?

Dr. Michael Levy: [00:09:57] I’ve been keeping my eye on the patient population who’s immune compromised, not just in neuroimmunology, but I sit on a hospital-wide committee for transplant medicine, cancer, and rheumatology. And as of yet, there doesn’t seem to be an epidemic in those patient populations.

[00:10:16] And there are a lot of treatments that are being trialed for treatment of coronavirus at the late stages, that we also use for NMO, like Eculizumab and Inebilizumab. And so, my sense at first was that immune compromised patients would be at high risk to get infected and maybe to have a more prolonged infection, but I haven’t yet seen that yet. I’m going to take polls of people, obviously later in the summer and the fall to see if that’s really true, if immune compromised people are at higher risk for coronavirus infection. But as of yet, just my own personal experience, I just haven’t seen that yet.

GG deFiebre: [00:10:52] Okay. Great, well thank you.

Does COVID-19 lead to neurological complications?

Many individuals with rare neuroimmune disorders have concerns about the coronavirus (SARS-CoV-2) that causes COVID-19 leading to new or additional neurological complications. There is still a vast amount about COVID-19 that remains unanswered. So far, the available data indicate neurologic complications are overall rare and do not seem to be common on a population-level. There does appear to be an increased number of cases of stroke in COVID-19 patients that has also been noted in the media. The information is being monitored by public health officials, clinicians and scientists. The blood clotting problem that seems to be related to COVID-19 infection in some COVID-19 patients requires further study. There have been a few case reports of varying quality that have been published about other neurological complications after a COVID-19 diagnosis. As with all viral illnesses, there may be some cases of Guillain-Barré or acute disseminated encephalomyelitis, but again, these appear to be rare and no notable increase in the frequency of these conditions with COVID-19 has been established so far. Furthermore, it does not appear that individuals with rare neuroimmune disorders, like acute disseminated encephalomyelitis, acute flaccid myelitis, MOG antibody disease, neuromyelitis optica spectrum disorder, optic neuritis, or transverse myelitis are experiencing worse outcomes than those without these conditions.

If you or someone you know does appear to be experiencing new neurologic complications in the setting of COVID-19, or is having difficulty accessing a neurologist for consultation, please let us know via email at info@wearesrna.org. For additional information regarding neurologic complications noted in COVID-19 so far, you can review the resources below. It will take more time for the data necessary to become available to properly review and research the rare neuroimmune and other neurological disorders in the context of a COVID-19 diagnosis. As of this stage, we still don’t know enough to confirm if COVID-19 may lead to a diagnosis of a neurological disorder or worsen neurological conditions.

COVID-19: Neurologists in Italy to Colleagues in US: Look for Poorly-Defined Neurologic Conditions in Patients with the Coronavirus

Neurology Podcast – SPECIAL REPORT: Dr. Avi Nath of NINDS/NIH discusses what we need to know as neurologists about the SARS-CoV2 pandemic

Neurology Podcast – SPECIAL REPORT: Dr. Ken Tyler dispels some of the misinformation about SARS-CoV2, & gives updates on antibody testing and ongoing clinical trials.

SRNA Announces Partnership with The MOG Project

We are excited to collaborate with The MOG Project to advance our joint goals to support families affected by rare neuroimmune disorders, specifically MOG antibody disease (MOGAD). The idea of the MOG Project was born in November of 2017 by Julia Lefelar and her daughter Kristina because of Julia’s diagnosis of MOGAD and the frightening lack of information about the condition.

The MOG Project was established in December of 2017 when Cynthia Albright, another individual diagnosed with MOGAD, and Amy Ednie, decided to work together to advocate for those with MOGAD. Dr. Michael Levy, Julia’s neurologist suggested that they join The Transverse Myelitis Association (TMA), now called the Siegel Rare Neuroimmune Association (SRNA). We at SRNA worked with The MOG project to launch MOGAD advocacy as part of our wider efforts to advocate for those with rare neuroimmune disorders. The MOG project has now sought registration as a 501(c)(3) non-profit organization.

SRNA looks forward to continuing and expanding our partnership with The MOG Project to make sure the education, advocacy and research resources we offer meet the needs of the MOGAD community. We also look forward to expanding and offering more specific resources and support for this community.

Sandy Siegel, the President of SRNA, remarked, “We are grateful for the partnership with The MOG Project. Our hope is that by working together we can improve the quality of life for those in our community who have MOG antibody disease.”

Amy Ednie, President of The MOG Project said, “Over the last 2 years, with the support of SRNA we have co-produced remarkable material for the MOGAD community. We are so pleased to officially become a partner and continue this relationship for the good of a global and growing group of patients and caregivers. In partnership, we can better provide hope for a growing community navigating a new frontier in neuroimmune disorders.”

Julia Lefelar, Executive Director of The MOG Project added, “We have been blessed to be able to work with SRNA and through our common efforts have made significant progress in providing the best information to the MOGAD community. We are thankful for our strong and lasting relationship and are thrilled to continue working with such a caring organization, which can certainly only make our work together better.”

About the Siegel Rare Neuroimmune Association

SRNA was founded 25 years ago by families of loved ones affected by rare neuroimmune disorders. We advocate for, support and educate individuals and their families diagnosed with a spectrum of related rare neuroimmune disorders – acute disseminated encephalomyelitis, acute flaccid myelitis, MOG antibody disease, neuromyelitis optica spectrum disorder, optic neuritis and transverse myelitis. We invest in scientific research, therapy development and training of clinician-scientists dedicated to these disorders. We have over 14,000 members and are active in 111 countries. We offer an up-to-date accurate website, resource library of over 300 publications, a patient registry, “Ask the Expert” podcasts, education symposia, the Myelitis Helpline, Quality of Life Family camps, clinician-scientist training Fellowship and a support group network. SRNA is a registered nonprofit organization recognized by the U.S. Internal Revenue Service as a 501(c)(3) non-profit organization with a Guidestar Gold Seal of Transparency.

About The MOG Project

The MOG Project was founded 2 years ago because of the lack of accurate and up-to-date information and the inability to connect with others trying to find answers to what can be expected with a diagnosis of MOGAD. The MOG Project was established to connect people in the hopes that no one will ever go without the latest information pertaining to their diagnosis. The MOG Project is devoted to raising awareness, educating doctors, patients and caregivers, advancing research through expert collaboration and fundraising, and providing support and advocacy for our community in hopes of finding a cure.

COVID-19 and Rare Neuroimmune Disorders

Updated on March 17th, 2020.

Click here for SRNA’s coronavirus page, which will be updated with all the latest developments.

The information and resources provided here have been developed with members of SRNA’s Medical and Scientific Council. The information and resources provided are meant to be an educational resource and do not constitute medical advice. For specific information about treatments, symptoms you may be experiencing or questions about personal exposure as someone with a rare neuroimmune disorder or as a caregiver, please contact your physician directly.

As the spread of COVID-19 continues across the world, it’s important our community knows and understands the risks associated with this virus in the setting of a rare neuroimmune disorder. Risk factors associated with COVID-19 may vary significantly for each individual diagnosed with a rare neuroimmune disorder. Although many who live with these diagnoses are healthy individuals, there are many with compromised or suppressed immune systems, respiratory concerns, and other factors that make their susceptibility to illness more significant. Each individual and family should know their risks and take appropriate precautions relative to their diagnosis and, if in doubt, consult your treating physician.

Since the situation is rapidly changing, it is essential to check the frequent updates posted on the Centers for Disease Control and Prevention website and the website of your state’s Department of Health. A list of resources is available below.

Symptoms of COVID-19

The most common symptoms are cough, fever, and shortness of breath, starting 2 – 14 days after an exposure (the average is 4 days). Some patients with COVID-19 do not have a fever at the beginning of the illness. It is important to report these symptoms to your local physicians (e.g., your primary care doctor), although these are common symptoms that occur with many types of infections, including other viruses like influenza and some bacterial infections.

General Recommendations from SRNA’s Medical and Scientific Council

Please note these are general recommendations and are not medical advice. The information is provided for general information purposes and should not be relied on as a substitute for professional medical advice, care, treatment or for diagnosis. Do not change your medication or regime without talking to your doctor first.

Recommendations for those with rare neuroimmune disorders do not differ much from guidelines given to the general population, although many individuals in our community may be considered high risk. Anybody with respiratory deficits or weakness in the chest or diaphragm, which can occur after damage to the spinal cord, will be at high risk of complications because of the difficulties generated by the pneumonia, hypoventilation or respiratory distress. Dr. Benjamin Greenberg of the University of Texas Southwestern noted, “It is important for all patients on immunosuppressive regimens to take precautions against being exposed to the circulating Coronavirus. Frequent hand washing, reduced public exposure, and social distancing are all recommended. Stay up to date with NORD and CDC recommendations and discuss specific concerns with your health care providers. If you develop fevers or respiratory symptoms, seek care as dictated by your local providers.”

Long-term treatments for Neuroimmune Disorders and COVID-19

Although there is no evidence or data about how COVID-19 may affect patients on long-term treatments for multiple sclerosis (MS), NMOSD, or MOGAD, at the present our view is that people with these conditions would not normally need to stop taking a disease-modifying treatment as a result of the threat of the virus. For patients taking medications for MS such as Glatiramer Acetate (Copaxone® and Glatopa®) and beta interferons (Avonex, Plegridy, Rebif or Betaseron), which are not immunosuppressive medications, the risk is theoretically low.

If you are on immunosuppressive medications such as Mycophenolate (Cellcept®), azathioprine (Imuran®), methotrexate or other steroid-sparing medications, please make sure you update the safety laboratory testing (e.g., Complete blood cell count and differential, liver function test and immunoglobulins).

For patients on Tysabri, or B-cell therapies such as Rituximab or Ocrelizumab (Ocrevus®), a similar update of safety blood tests is recommended.

Glatiramer acetate (brand name: Copaxone), teriflunomide (brand name: Aubagio), dimethyl fumarate (brand name: Tecfidera) and beta-interferons (various brand names) are generally likely to be safer than the other DMTs as they are not considered to be generalized immunosuppressive therapies. We likewise recommend that people with MS who are taking natalizumab (Tysabri) continue as normal, noting that we will be closely monitoring the developing situation.

Recommendations from CDC for High Risk Individuals

CDC recommends that patients with high risk, which includes patients with neuroinflammatory diseases:

  • Stock up on supplies including medications. Let your provider know if you need refills.
  • Avoid close contact with people who are sick.
  • Take every day preventative actions: clean hands often and avoid touching your face, nose, eyes, etc.
  • When you go out in public, keep away from others who are sick, limit close contact and wash your hands often.
  • Avoid crowds, especially in poorly ventilated spaces. This would include airplane travel and public transportation. Your risk of exposure to respiratory viruses like COVID-19 may increase in crowded, closed-in settings with little air circulation if there are people in the crowd who are sick.

Resources

Please take the time to familiarize yourself with the resources below. Bookmark these links and refer back to them as the situation is continuously developing and quickly changing. Be proactive and cautious, act with knowledge and not out of fear.

Centers for Disease Control and Prevention (CDC)

National Institutes of Health (NIH)

World Health Organization (WHO)

National Organization for Rare Disorders (NORD)

Shepherd Center

Massachusetts General Hospital Department of Neurology  COVID 19 (Coronavirus) Patient Information Bulletin

Center for Disability Rights: Action Steps for Attendant Service Users in Response to Coronavirus Disease 2019 (COVID-19)

2020 Rare Disease Month

Rare Disease Day is February 29, 2020. Throughout the month of February, the Siegel Rare Neuroimmune Association would like to generate awareness for ADEM, AFM, MOGAD, NMOSD, ON, and TM through sharing stories, information, and hope. Having a rare disorder can make anyone feel alone; however, over the past twenty-five years, SRNA has built a community of people who are here to ensure that no one has to go through this diagnosis by themselves. This month, we encourage you to share your story and get involved in spreading awareness for rare neuroimmune disorders! If you are interested in joining us for Rare Disease Month by sharing your story, please email us at info@wearesrna.org.

The President of SRNA, Sandy Siegel, PhD, describes below the power of a rare disease organization to find strength in community.

Our lives become structured in such routine ways. We each have so many different rituals throughout the day. We engage in them almost unconsciously, and we certainly take for granted our ability to live our lives in this way. We take for granted our normal. Living so much of our lives in an unconscious way gives us the freedom to think about so many other things. And we take that for granted as well.

Being diagnosed with a condition changes the normal. It often steals your freedom to think about anything else.

Who is grateful about the ability to pee?
Who is grateful for the ability to walk?
Who is grateful for being able to breathe?

No one… until they can’t.

Being diagnosed with a condition changes everything, regardless of the illness.

And then, having a rare disease is an entirely different phenomenon. It is way more than just the diagnosis. No one wants to get a diagnosis of cancer or heart disease or diabetes. But when they do, they are most likely going to know other people in their lives, including family members, who have had these same diagnoses. We have a good idea about what it means to have one of these diseases and how these diagnoses are going to change one’s life. You are going to be seen by a doctor who knows what you have and has a lot of experience treating it.

None of it is good, but it is known.

Having a rare disease often means that you are going to experience so much more than just the diagnosis. You aren’t going to know people with the same diagnosis. You aren’t going to be able to think about what it means for you, how your life is going to change. There are going to be so many unanswered questions. It becomes very difficult to think about the future. Having a rare disease creates so many psychological and emotional challenges. And if you are a parent of a child with one of these rare disorders, the challenges are going to be magnified.

This experience is intensified by how rapid these disorders happen. Pauline was healthy one moment and was paralyzed within seconds. A mother put her healthy child to sleep and they woke up unable to move any part of their body. And then everyone goes through the process of the complicated diagnosis and apparent lack of information and experience by medical professionals. The most important question – am I going to get better? – isn’t able to be answered. It is hard. Getting one of these rare disorders can be psychologically traumatic.

There’s so much SRNA does to help a person deal with having one of these rare disorders. Our education, our advocacy, our medical professional network, and our physician and researcher training are fundamental to the work we do every day.

One of the least appreciated and most important things SRNA offers is a community that helps you go through your experience without having to do it alone. We understand what it means to have a rare disorder and all of what you are going through… because we’ve gone through this ourselves. SRNA was founded by people with one of these disorders and their family members. We created a community from the empathy we felt through our own experiences.

In so many ways, we’ve created a community that is going to help you through the challenges you experience every day. Through our website, social media, Smart Patients, our support groups, our quality of life camp, and our awareness events, we give you access to other people who know what it means to have one of these rare disorders.

We give you ways to think about what it means to get better. We help you think about what it means to make the most of your life, regardless of what your own recovery will look like. And we help you to understand that recovery is a lifelong journey. And we work to give you the tools to maximize that recovery.

We give you access to people from your community who will help you think about what is possible for you, what your future might look like, and what hope can mean for you.

We’ll help you meet people who have regained the ability to walk such that you can’t tell they were ever paralyzed, or who regained the ability to urinate on their own, or who went from having excruciating pain to not having anything but the most mild sensations.

And then we will introduce you to people like Jim, Maggie and GG. Jim has been a quadriplegic and ventilator dependent since he was twenty-one years old. He’s not experienced anything but the most minor recovery in the many decades since. Jim has lived a full and incredible life. It is most definitely a different life than the one he would have had were it not for transverse myelitis, but in so many ways, it has been a wonderful life. Jim wakes up every day and he does what he loves. He has done more than anyone to make a positive difference for the people in our community. Jim was recognized as the New Mobility Person of the Year in 1999 for his work for the quadriplegic and ventilator dependent community and for his work for the Transverse Myelitis Association (now SRNA).

Maggie is a quadriplegic who lives in a very small town. Since becoming paralyzed from the neck down, she’s raised two sons, fallen in love with a wonderful man, completed a college education, and gotten involved in disability advocacy work. She serves on her state’s disability task force and travels across the country representing her state and governor in this work.

GG was diagnosed with transverse myelitis and became quadriplegic while in her senior year of college. Since being diagnosed, GG has earned a master’s degree in public health and is nearing completion of her doctorate. She lives alone in a large metropolitan area, depends entirely on public transportation, takes care of two cats that she takes more photographs of than I do my grandchildren, and is surrounded by wonderful family and friends.

Jim, Maggie and GG have experienced some or no recovery from the most debilitating symptoms from these disorders. Jim, Maggie and GG have created a new normal for themselves, and they find ways to live their lives to the fullest.

We know that what you deal with every day with a rare disease is more of a challenge than most people could every understand and appreciate. Those of us at SRNA do understand, and we are working every day to make a difference in your life, to help you find the highest quality of life possible, and to do what we can so that you aren’t on this journey alone.

Happy Holidays and a Healthy New Year!

From all of us at the Siegel Rare Neuroimmune Association, we want to wish you and your families a very happy holiday season and a happy and healthy New Year!

Happy Thanksgiving from SRNA!

Dear SRNA Family,

In this season of thankfulness, we are grateful for the dedication, commitment and perseverance from our community of advocates, physicians, researchers, friends, families and all those diagnosed with a rare neuroimmune disorder. Thank you for supporting our cause and making 2019 such an incredible year.

In this light, we wanted to remind you that December 3rd is #GivingTuesday. On this day we want to raise $25,000 to help us kick off our year-end campaign.

Two incredibly generous partners, the Rachel Williams Foundation and Tee it up for TM, have agreed to match all donations, for up to $25,000, on #GivingTuesday across all fundraisers or donations made on Facebook, through our website, or through this form for our international supporters. This means that if you give on #GivingTuesday, your donation will be DOUBLED!

You can help us in the following ways:

  1. Create a Fundraiser on Facebook or donate to our Giving Tuesday Facebook Challenge
  2. Donate directly through our website (international supporters can do so here)
  3. Create a Fundraiser on our website to share with friends and family

The funds you give or raise will make it possible to connect thousands of people to the help they need, care for all those that are affected, and further our work of finding a cure by training clinician-scientists, developing novel therapies, investing in academic centers of excellence, and funding innovative research.

We at SRNA wish you a peaceful and happy Thanksgiving, and we hope you are able to share this day with those you are most thankful for in your life. We are filled with gratitude for the support of our community and are excited to take the next step toward ending rare neuroimmune disorders, together.

– The Siegel Rare Neuroimmune Association

Q&A Regarding IVIG Shortage

A nationwide shortage of a potentially life-saving treatment, IVIG (intravenous immunoglobulin), has been an increasing concern throughout 2019. The shortage started to become more evident in late 2018 and has continued to impact patient populations across the country. IVIG is often used by the rare neuroimmune disorder community as an acute treatment therapy, as well as an ongoing method of treatment for disorders in which recurrence of inflammatory attacks is a likely concern.  SRNA has received many questions from community members about this shortage. These questions have come from various members representing each of the disorders, and especially from those who’ve been turned away from their appointments or told they must change their ongoing treatment for MOG antibody disease (MOGAD) because IVIG isn’t available. We asked members of our Medical and Scientific Council for their input and perspective of this ongoing concern as it relates to our community.

Why is there a shortage of IVIG? Is it only due to production concerns? Is it a high-demand product? Does a lack of or shortage in blood or plasma donations have anything to do with the shortage?  

There is more demand for immunoglobulin products than there is an available supply. IVIG is used to treat many conditions across multiple specialties (e.g., rheumatology, immunology, hematology/oncology, pediatrics, neurology). The product starts with the donation of plasma but then goes through a complicated, long manufacturing process that ultimately leads to IVIG or other immunoglobulin products. Most of the manufacturers of the product are reporting a shortage, but this varies by region and medical institution. One neurologist in SRNA’s network was told by his pharmacy that one of the main manufacturing companies cut their manufacturing in order to produce other products. He has not, however, been able to verify this via official reports. Donation of plasma may help the problem, but it will take time before an increase in donations leads to an increase in the supply, and the facilities that do the manufacturing must be available. The problem is primarily a manufacturing issue and not because of a lack of donations, although donations of blood and plasma are always needed.

How long is this expected to impact the SRNA community?  

 

The shortage is expected to last well into 2020. Many areas and hospitals are still able to get some IVIG and have developed protocols about which patients receive the treatment. Diagnoses for which there is robust evidence supporting its benefits and diagnoses for which there are no other treatment options are getting priority (e.g., Kawasaki Disease). The shortage is concerning as we look towards 2020 when we anticipate an increase in cases of acute flaccid myelitis (AFM). IVIG has antibodies that may have an effect on limiting inflammation or neutralization or replication of enteroviruses and is widely used in treating AFM. It is also used as a maintenance treatment in MOGAD where it has shown to be well-tolerated and in one study, reduced the median annualized relapse rate (AAR). As it has not been approved for MOG-Ab positive patients, it has become difficult to continue these patients on IVIG. As with all typical acute treatments for the rare neuroimmune disorders, because placebo-controlled trials are difficult to perform, particularly on acute treatment therapies, there are no placebo-controlled data confirming the efficacy of IVIG in this population, but it remains a commonly used treatment option for consideration.

What implications does it have for those who rely on IVIG as continuous therapy for their rare neuroimmune disorder (e.g. MOGAD)? What consequences does it have for those newly diagnosed and needing it as an acute treatment (applicable to all of the rare neuroimmune disorders including AFM, TM, etc.)?  

Medical professionals are continuing to use IVIG for acute treatments. Many hospitals and physicians have developed protocols for the use of IVIG and established which patients and disorders are given priority for receiving it as an acute treatment. For patients that are receiving this for long-term treatments, we are attempting to get them on a product with a reliable supply (e.g., private infusion clinics, in-home nursing, etc.). If that is not an option (typically insurance-limited), we are forced to look at other treatment options, such as immunosuppressant drugs (e.g., Rituximab, Mycophenolate mofetil, or azathioprine).

 

How are providers deciding which patients receive IVIG?  

Hospital systems may set up a multi-disciplinary group in order to discuss which patients need IVIG as a life-saving drug. These include children with immunodeficiencies, cancers, Kawasaki disease and a few other rare disorders. Children who present with acute, life-threatening disorders such as Guillain-Barré, encephalitis, myelitis, etc., are given IVIG when appropriate (for example, when plasmapheresis is not feasible). Physicians and hospitals are also working to assess patients who may need it urgently versus those who could potentially use other therapies, or safely have a change in dosage.

Some families are being turned away from their infusion appointments because their hospital doesn’t have IVIG – what are they to do in these situations? Should they look elsewhere for the same product or do they need to consider other options?  

It is recommended that they look into other supply companies or home infusion companies. There are several home infusion and supply companies (varies by region) that have reported they are not currently in shortage of IVIG products. Some physicians have been able to switch patients receiving repeated IVIG infusions onto home infusions. Insurance approval for this may be a limiting factor in some cases.

Are there institutions that aren’t impacted by the shortage because they have enough of a supply? 

Again this, varies by region and changes frequently. The manufacturers supply the entire country and when there is a shortage, it affects the entire supply line. We are not aware of exactly how many suppliers/manufacturers of IVIG there currently are in the U.S./North America. FDA published an article in August, 2019, which noted eight manufacturers of IG products.

Can someone with a rare neuroimmune disorder donate blood and/or plasma? Should they if there isn’t another medical reason for them not to do so?  

SRNA is working on finding additional answers from those working specifically in hematology. It is recommended that anyone with a rare neuroimmune disorder discuss blood or plasma donations with their various physicians and come to an individual, medically appropriate conclusion as to whether blood and/or plasma donations is safe for them.

What can a community member or patient using IVIG do to impact change in this area?

It is the general medical community’s understanding that it is a manufacturing and demand issue, not an issue related to donations. We recommend speaking with your specific medical facility to find out about their supply and with your physician to discuss your individual treatment options. It may also be of benefit to bring awareness to this issue by writing your state and federal legislators. As stated previously, the problem is primarily a manufacturing issue and not because of a lack of donations, although donations of blood and plasma are always needed.

 

If you have additional questions, or if you’ve been personally or professionally impacted by the shortage, we’d like to hear from you about your experience. Please email us at info@wearesrna.org at any time.

Together We are Stronger, Together We are SRNA

We are excited to announce that we have changed our name to the Siegel Rare Neuroimmune Association (SRNA), effective November 1, 2019.  Our new name honors our founders, Pauline and Sandy Siegel, and now represents all the people we serve and have diligently advocated for over the past 25 years: those affected by rare neuroimmune disorders of the central nervous system including Acute Disseminated Encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON), and Transverse Myelitis (TM).

We are still the same organization, on a mission to connect people, care for those who are impacted, and to further our work of finding a cure and ending rare neuroimmune disorders for good; just like we have for the past 25 years. As the Siegel Rare Neuroimmune Association, we will continue to support, educate, and advocate for anyone affected by rare neuroimmune conditions. Our new name amplifies this mission, as we continue to work together to connect, care, and cure.

We asked members of our community, some of whom attended the 2019 Rare Neuroimmune Disorder Symposium in Columbus, OH from September 19-21, to share their thoughts on our new name and our message of “stronger together.”

“There is comfort and encouragement in togetherness. It builds strength and motivation.”

  • Amanda Stuckey, TM

“Meeting fellow rare neuroimmune diagnosed patients is heartwarming and encouraging in the healing process.”

– Robin Kaminski, NMOSD

“A rare neuroimmune disease is not something to take on alone. SRNA has connected our family with other families facing the same challenges, as well as support and medical professionals that we otherwise may not have found. Together we can further research on these conditions and have a better chance on finding treatments and cures. We can also support each other during a family’s most difficult times.”

– Jason and Rebecca Clark, Parents of Addison Clark, MOGAD

“We are stronger together because we need as many people to come together for one cause so we can get our voices heard, so we can advocate for all of us that have a rare neuroimmune disorder and not just one thing. We can do this. We will do this! Stronger together.”

– Amy Shultz, TM

“Our particular disease, ADEM, is so rare that to be able to be a part of an organization that brings together doctors, nurses, therapists, and other families is remarkable. We are honored to be a part of the SRNA family. We were not put on this earth to be alone but to join together with others and help each other. By doing so, we are a group of individuals, alone we are weak, but when we are together — we are stronger together!”

– Maxwell Clark, ADEM

All of these diagnoses are so rare and having a group of people who have had similar experiences is invaluable.”

– Thomas Griffith, MOGAD

“As a parent of a child with Acute Flaccid Myelitis, the support and resources the Transverse Myelitis Association has provided to us over the years have been invaluable–and this name change is an outward sign of their commitment to all rare neuroimmune diseases! We’re so grateful for SRNA and their ongoing fight for those affected by AFM.”

– Rachel Scott, mother of Braden, AFM

“Stronger Together because “it takes a village”!”

– Kimberly Mazur, caregiver/mother to Jordan, Longitudinal Extensive TM

We are so grateful and humbled by the support of our community. We could not accomplish our work without your generosity and care. SRNA is excited to take this next step in our journey with you, and we hope that you are excited too! If you would like to tell us why you believe we are stronger together, please email us at info@wearesrna.org.

An Urgent Call to Rapidly Recognize and Report AFM Cases

On Tuesday, July 9, 2019, the latest CDC Vital Signs report was released, focusing on acute flaccid myelitis (AFM) and the critical importance of timely diagnosis, treatment, and reporting of the condition by clinicians to local health departments. It marks the beginning of a significant awareness campaign that we all may take part in to enhance knowledge of this rare neuroimmune disorder. Since AFM typically spikes in the late summer and fall months, now is the time to be especially aware of the signs and symptoms of AFM.

As an organization, parents of children diagnosed with these rare disorders, researchers, public health officials, and individuals who understand and know the drastic impacts of AFM, we ask you to please take time to review the latest report and the detailed information from CDC, located here. Share it with your clinicians, schools, health departments, family, and communities.

The CDC Vital Signs report includes an overview of AFM (both written and video), current statistics, infographics, a press release, and more. How you can help is by printing or forwarding the detailed information to your contacts. You can also use the press release as a reference to follow-up with your local news outlets about this urgent CDC request. It is also an opportunity to check-in with your state and federal legislators to ask for their support in requesting state and federal funding for AFM research and reporting, and increasing awareness.

To further your awareness and knowledge of AFM, an AFM Information Sheet and valuable resources about the disorder are available on the Transverse Myelitis Association website. You may find them in our Resource Library. Our partners at the Acute Flaccid Myelitis Association (AFMA) also offer resources and support for families facing an AFM diagnosis.

The Siegel Rare Neuroimmune Association also offers a direct resource specifically for physicians who may suspect an AFM case. The AFM Physician Consult and Support Portal provides 24/7 peer-to-peer consult for clinical support from our partner physicians at the University of Texas Southwestern’s Transverse Myelitis Center or the Johns Hopkins Transverse Myelitis Center.

Being aware of the possibilities as we come into peak season for viruses associated with AFM, being able to recognize the signs and symptoms of AFM, and helping to ensure timely and accurate diagnoses are our first steps in ultimately stopping this rare neuroimmune disorder from striking our children and families.

Stay tuned as we continue to create awareness with CDC and the AFMA of this rare but often devastating neuroimmune disorder.

SRNA Announces Partnership with AFMA

We are excited to collaborate with the newly formed Acute Flaccid Myelitis Association (AFMA) to advance our joint goals to support families affected by rare neuroimmune disorders, specifically Acute Flaccid Myelitis (AFM). The AFMA was borne from a meeting of parents impacted by AFM and advocates to increase awareness and gain public assistance for this disorder. The AFMA provides support for parents, caregivers, and those with AFM.

We at SRNA look forward to partnering with the AFMA to ensure the education, advocacy and research resources we offer meet the needs of the AFM community. We also hope to expand and offer more AFM-specific resources jointly as co-branded documents under this partnership. As part of our partnership, AFM families can become members of the AFMA and SRNA through the SRNA membership form by selecting to give permission to share information with both organizations and participate and benefit from programs offered by SRNA and the AFMA.

Chitra Krishnan, the Executive Director of SRNA, remarked, “By joining forces, and working together, we can achieve so much in raising awareness, improving education, resources, support, and research so we can improve the quality of life of families affected by AFM.”

Director for AFMA, Katie Bustamante, also noted, “We look forward to this partnership with the hope that our combined efforts will have a growing impact on public awareness, advocacy, and support for those affected by Acute Flaccid Myelitis.”

About The Siegel Rare Neuroimmune Association

SRNA was founded 25 years ago by families of loved ones affected by rare neuroimmune disorders. We advocate for, support and educate individuals and their families diagnosed with a spectrum of related rare neuroimmune disorders – acute disseminated encephalomyelitis, acute flaccid myelitis, MOG antibody disease, neuromyelitis optica spectrum disorder, optic neuritis and transverse myelitis. We invest in scientific research, therapy development and training of clinician-scientists dedicated to these disorders. We have over 13,000 members and are active in 111 countries. We offer an up-to-date accurate website, resource library of over 300 publications, a patient registry, “Ask the Expert” podcasts, education symposia, the Myelitis Helpline, Quality of Life Family camps, clinician-scientist training Fellowship and a support group network. SRNA is a registered nonprofit organization recognized by the U.S. Internal Revenue Service as a 501(c)(3) non-profit organization with a Guidestar Silver Seal of Transparency.

About The Acute Flaccid Myelitis Association

The Acute Flaccid Myelitis Association was borne from a meeting of parents impacted by AFM. The AFMA is a resource for those that are personally affected by AFM. We provide shared information based on the experiences and treatments that families have faced as well as grants to patients in need of financial assistance for medical treatment. Additionally, the AFMA works to increase public awareness to this rising public health issue in an effort to promote advocacy for research. The AFMA is a 501(c)(3) registered non-profit association.

Should you have any questions at all about our partnership, programs, resources, or support we offer, please reach out to us at info@wearesrna.org, tmakids@wearesrna.org, or via phone at (855) 380-3330.