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Navigating Insurance & Coverage for NMO – Breakout Session – 2018 NMO Patient Day

Danica Carlson:

Hi everyone. I’m Danica Carlson. You’ve probably seen me around, because I’m also a fellow NMO patient. I also happen to have expertise and a career in the health insurance world. That includes industry like biotech and pharmaceutical companies. Also, I consider myself a professional patient at this point, working for insurance companies. And then now I do consulting work. And so I’m here to hopefully lend some of my expertise to this powerful group that I really feel part of. This is my first time coming to Patient Day. Even though I’m show you this slide here, I started my journey back in 2009. So I’m coming up on nine years now of dealing with this, and I was 25 at the time. And you can see this list of treatments that I’ve tried. The list probably looks familiar to you. Here, let me get out of your way. I tried and failed throughout the years.

Danica Carlson:

And then some of my personal insurance battles that maybe you’ve gone through, or maybe you’re just now approaching. And I really feel like dealing with all this stuff has shaped me personally. It’s definitely shaped my career path. And my goal here today is to help share some of that insight with you, help you feel empowered, and find out more about maybe what your specific challenges are. If there is something that we don’t discuss and really just offer my help and support with your journey, so that … because it’s easy for me, I’m I do this professionally all the time, as far as dealing with complex insurance challenges. And I’d like to help my fellow NMO community as much as I can.

Danica Carlson:

So I put together some common challenges that I think we probably all face as NMO patients, because we are outside of the box when it comes to being a patient. When an insurance company puts together a coverage plan, they’re not thinking about an NMO patient when they do that. So the treatments that we need, the testing that we need, the medication and the doctors that we need to see very often are not considered part of that plan, and are a challenge to get for whatever reason. Out-of-network coverage, that comes up a lot, because NMO is not very well understood. So your average neurologist, yeah, there’s going to be a neurologist that’s in your coverage network, but not necessarily a neurologist that has NMO experience. I personally see a neuro-ophthalmologist. Try finding one of those. And then in addition to that, you might want to go see a specific health facility like Johns Hopkins, or Mayo. Likely, those are going to be out of your network coverage list. And therefore, it’s considered an out-of-network coverage, and you’ve got to fight with insurance to get them to pay for that, or you’re going to pay out of your own pocket, which means you’re probably not going to go.

Danica Carlson:

Another common issue is just expensive treatment. I’m on IVG, it’s about $10,000 to $15,000 an infusion, and I get those every five weeks. Rituxan, I heard for $40,000 a treatment.

Danica Carlson:

Let’s call it every six months, something like that. It’s expensive treatment. And then you’ve got stuff like regular maintenance, MRIs. Those are, I don’t know, $3,000 to $5,000. I mean, these aren’t exact numbers, but it gives you an idea of what it costs. Who’s paying for this? It’s your insurance company. And so that is why we get pushback when requesting these types of things. So it’s just good to understand. Off-label use of medications, something that actually affects all of us, whether you realize it or not.

Danica Carlson:

Everything right now, that’s on the market that we use to keep ourselves alive, none of them have neuromyelitis optica, NMO, or spectrum disease, optic neuritis, anything close to that on their product label. So I have an example of a product label for you. I find this very interesting. This is from Rituxan. A lot of us are on it, have been on it, at least know what Rituxan is. That’s what we were just talking about, $40,000 every six months. You can see the three bullets here, lymphoma, leukemia, rheumatoid arthritis. That’s the product indication. If you are not a patient that has one of those three things, you are considered off-label for this medication. Now not a big deal, because we all use it, and get it, have access to it. It’s common practice for doctors to prescribe a medication off-label because they know that it works for other things other than those three very specific bullets.

Danica Carlson:

However, the point of this is that insurance has a very valid reason to deny you. If you’re requesting Rituxan, and you don’t have one of those three things, and they deny you, they’ve got good reason to, because they can say, “Look, the FDA approved label does not say NMO. It does not say neuromyelitis optica, or anything close to what you are, or have. If you don’t have RA or these things, then we’re going to deny coverage.” So just understand that. There’s a process for fighting that and next steps to get to coverage. But that initial denial is almost expected. And it probably sounds very familiar to you. I think this is important, because when we have these new drugs coming out, that I’m very excited about. But what I heard today, one of those drugs sounds like the product label is going to say NMO, Aquaporin-4 positive. Well, I’m negative. What do you know? I’m off-label now. So I know if I want to be on that drug, I’m going to have to fight for it, because I’m not on that product label. So just be aware. It’s just something that we all have to know is out there, and is a challenge, not the end of the road by any means, just informational, really.

Danica Carlson:

So how do you combat these things? What is that next step? What do you do when you get a denial? The first thing you want to make sure that you have in place, if you don’t already is an advocate, somebody who’s going to fight for you, who knows the inner workings of the insurance world, how they function, how they process, and also who understands your story from a clinical aspect. So typically your advocate is your neurologist, or whoever you see most regularly for your NMO-related care, typically, not always. It can be designated patient advocate, who either works at your insurance company, or who works for your employer, or somewhere else. Also a case manager, that’s typically somebody who works at the insurance company. Their role is to help people, help patients that are complex. So anybody that has a lot of comorbidities, and lots of medications going on, and all sorts of stuff, they’ll step in and help you manage that. That’s another really good resource. But typically, it’s going to be your doctor because they’re going to fight for you in a way that insurance may or may not. So if you’re struggling there, you’re going to want to go to your doctor.

Danica Carlson:

If your doctor isn’t fitting the bill, they are not all cut from the same cloth, most of the doctors that … especially who we see here, and in my experience, most of them are very dedicated to their patients, and will do everything they can to fight for them, but not all of them will. I’ve changed doctors so many times. You get to the right one, then you’re good. But know that that’s normal, and it’s okay, and there’s no hurt feelings. You’ve got to do what you’ve got to do for yourself. And this is the key to success for you getting the treatment that you need to survive, and be happy, and healthy really.

Danica Carlson:

Oh wait, sorry. One last thing there. We talked about this in the big session earlier the ER visit. I just wanted to share a little, what I do with you guys for that, because I’ve had my share of ER visits that go very poorly. Namely, my very first ER visit went very poorly. And nobody knows an NMO is, and they shove you in the corner, wait for you to start fevering and sweating before they take notice. So what I did is I had my neurologist write a letter on letterhead, a very official looking letter. I had it basically talking about me, who I am, disease criteria, what NMO is. And it was done very well. And I printed a bunch of copies and took it with me everywhere. So every ER visit, I’d be like, “Here.” That’s what I did. Some people carry around big stacks of clinic notes. I’ve done that too, but I found letter to be the … so, that’s my trick.

Danica Carlson:

So when you get a denial, which again, it’s not abnormal. It’s almost to be expected. What that means is, think about that product label. All it means is that you are not one of those bullets. The insurance company looks at the criteria, those bullets. They look at your medical record. It says NMO on it, or whatever it says. The two don’t match up. So, you get a denial. That’s all they do. So it’s kind of nominal. It’s not a big deal. It’s to be expected, because we don’t fit the mold very often. So just to understand that that denial, no, means not yet. It just means, “Okay, now I’m going to go down the process. There is a process in place and I’ve got to take that road now, the appeals process.” Now you can do that appeals process as a patient, but the more successful avenue is to involve your advocate, and go down that appeals process with your advocate.

Danica Carlson:

Again, usually it’s going to be your doctor. So my first phone call, if I get a letter in the mail, or I’m checking on something by calling insurance and I hear something has been denied, call the doctor, “Please help me with this appeal. They’ve denied the treatment that you think I need. They’re denying it. And they’re saying that you can appeal it. They always can.” If you’re not asking the question, then do so, but your doctor can always appeal. And go down that road of what an appeal looks like. Stay engaged, because they are real people with busy lives, and when you ask them to go down the journey, the path of appeals for you, they don’t get paid extra. They don’t get time given to them in the day to do so. And again, our doctors generally are stellar, amazing human beings, and will make the time to fight the good fight for us. But you being engaged in that, being a participant in your health, regularly calling them to check on things. Now I say squeaky wheel gets the grease, not the annoying wheel. So just be mindful of that, be respectful.

Danica Carlson:

That process is writing detailed letters on your behalf, which are no easy thing to do, to put together. They talk about treatments that you’ve tried and failed. They talk about recent literature that’s come out, publications, and stuff that we’re talking about here, and talking about why, really justifying for the insurance company, why X, Y, or Z treatment is why you are the ideal candidate for it at this point, with everything that you’ve been through. So they’re doing that on your behalf. They also have phone calls with insurance on your behalf, where they’re talking with a doctor at the insurance company, usually a neurologist. And they talk about you for 30 minutes, specifically about your situation, all the same things that would be in that letter, but they do it verbally.

Danica Carlson:

And then they also make changes and updates to your medical record, and submit that back to insurance to clarify things, to include things that are going to be more relevant. Once you get a denial, you go, “Okay, what do I have to change? What do I have to do?” And they do all of that for you. So just know it’s a lot that goes into it, but they are still the best person to go to, to get to the care that you need. If again, your doctor is not willing to do this stuff, you might need to find a new doctor, because this is life or death for you.

Danica Carlson:

I added this in because since I got here yesterday, just the chatter, the overall feeling that I’ve gotten from everybody not asking or talking specifically about insurance, but just what was brought up in conversation is, “Oh my God, the cost of this, the medical bills, the this, the that, and it’s so overwhelming. And it’s the pressure of it all. And we’re losing our home, or all these things are happening,” and it’s all related to the cost of dealing with the treatment for this disease. Now we’ve got someone here from Australia, some people here from the UK, and they’re like, “Oh my gosh, we don’t have any of those problems.” And for me being so acutely aware of this stuff, it’s so heartbreaking that we as Americans are just so burdened with the cost of things.

Danica Carlson:

So I threw this slide in here. Just be aware, if you’re not already, most of the drugs, we’ll talk about Rituxan. And that’s the manufacturer of Rituxan is Genentech, and they have a copay program, and a free drug program. So what that means, copay is that if your copay through your insurance is $50 or more, and don’t quote that, it’s going to depend on your income level, and all sorts of things, but they will cover that copay for you. So it’ll still go through your normal insurance, but they’ll cover the copay, so it’s effectively zero for you. The free drug program is free. So you’ll get the drug completely free. It’s typically reserved for people that don’t have any kind of coverage at all. There’s an application process, and they look at your income, those kinds of things, but just know that whatever drug you’re on, those things exist. Check the website of the manufacturer. So for Rituxan, as an example, it would be Genentech, to see what programs are available like that.

Danica Carlson:

And then medical bills. There’s so many, and they can be overwhelming, and they’re coming from all over the place, and likely you feeling drowned in them, and you don’t know, you’re treading water, and worry that you’re going to go under. I just want you to know that you can ask for a discount. If you get a bill in the mail, you can ask, and you should. That should be the first thing you ask, “Can I get a discount for this?” And then you can also do payment plans. If you’re not aware, they usually offer it if you’re struggling to pay, but you can do a payment plan. Along with that payment plan comes a minimum. So let’s say you must pay at least $50 a month. Well, 50 times however many bills you have, you then again, might not be able to do it, financially. So just know, because there’s a fear of being brought to collections there with the medical bills, what they really need you to do is pay something. As long as you’re paying something, it’ll keep you out of hot water, and keeping in communication with them regularly.

Danica Carlson:

Now if that’s a lot to organize and manage, I get, but if it’s what keeps you afloat financially, it’s what we have to do with the system that we’re in, unfortunately. But know that you can pay $10. Maybe you can handle $10. Maybe you can’t handle $50, because this isn’t your only bill. There’s all these others. That’s going to keep you in the safe zone. And it’s legally a little slippery there, but these companies are required by law to send you bills. A lot of them don’t even want to, but they have to. That’s just part of the way our healthcare system is set up. So they’re not trying to send you to collections. They just have to say they are, if that makes sense.

Danica Carlson:

So that’s the end of what I put together. Because I want to have time for Q&A. Usually there’s questions, because I don’t know what your specific struggles or situations are, and I want to be of help to you. If you do come up with a question later, whether it’s right now and you don’t want to bring it up, or it’s a year down the road and you’re like, “Gosh, I wonder if she could help. I just don’t know what to do,” I’m offering myself to this lovely group of people. I’m a patient just like you, but I deal with this stuff for work every day, and it’s easy for me. So I want to help. I want to take that burden away from you if I can. And so if you want to get in contact with me, and talk through whatever it is, and we’ll just see what I can do. You go through Derek Blackway. You guys all have his email, because he was the one that sent the agenda for today. And he said, “Yeah, just have everybody contact me,” and he’ll get you in touch with me. And we’ll just do it that way for now. And yeah, that’s everything that I wanted to touch on. So I’ll open it now, in case you guys want to talk about individual stuff. We’ve still got a few minutes.

Audience:

I have question. I just really applied for Genentech last week. The billing department at the [inaudible 00:17:26] clinic told me to apply. So I’m through my husband’s health insurance, which we have pretty good insurance. I haven’t met my deductible yet, so they’re telling … I have Rituxan treatment as soon as I go back. And they said, my out-of-pocket fee will be $1,200. So will that company help me pay that? What exactly are they paying for, the medication, or helping with the deductible? Or …

Danica Carlson:

Typically the copay program is only going to cover the copay. So you’re talking about total financial cost, which it’s going to depend on your plan type. So you have a deductible that you have to meet. Let’s call it a thousand dollars, and then you have a copay on top of that. So you’ll have to max out your deductible. What is your deductible?

Audience:

$1,500.

Danica Carlson:

Okay, so you’re going to have to pay that before the insurance benefit kicks in. So no matter what, you’re going to pay $1,500. That’s just your insurance plan. Then, for every drug that you need, there’s a tiered system, but there’s a copay associated with it after that. And I don’t know what that is, but if it’s more than $50, that’s the amount that Genentech will pay for you.

Danica Carlson:

Does that make sense? Yeah, because a deductible is part of … when you’re looking big picture, and you’re like, “Well, I’m paying all this money,” but you don’t get anything until that deductible is covered. And as patients that have complex and rare disease, like we do, when you buy or choose an insurance plan, look at it from the angle of whatever that max is, I know I’m paying that, because I’m expensive. So choose a plan that you’re comfortable with paying that at minimum, because you won’t get through your probably without at least having that with the kind of stuff that we need to keep going.

Danica Carlson:

Anyone VA, military? Okay, we won’t go into that.

Audience:

My insurance will let me have 20 physical therapy appointments a year. Can you fight them for more, or you just have to go to self pay, because all along they said 20 sessions?

Danica Carlson:

So, the first thing I would say is it’s going to be your plan type, but physical therapy is considered alternative care usually. And so that’s a generally newer benefit that insurance plans have recently adopted, kind of like acupuncture, things like that, that aren’t as mainstream, as far as coverage. So just getting it covered is really great. You can request to have more. That would come from probably your neurologist, or whoever you see to say, “Look,” and to make that argument for you about why you really need more. You probably would win that battle, because if physical therapy is keeping you away from needing a trip to the ER, or whatever it might be, it’s cost benefit analysis for the insurance company. So I’d put money on them making an exception for you in that regard. But if moving forward that you need physical therapy more than 20 a year, look for a plan that has that built into it. It might not exist, but that’s what you’d want to look for. Just so that you’re avoiding this battle in the future.

Audience:

More on the suggestion that I found out than a question, but Medicare will not pay for CellCept.

Danica Carlson:

Oh.

Audience:

I mean, it’s just not …

Danica Carlson:

Really? Medicare Basic?

Audience:

I have Medicare Advantage, because they can deny preexisting conditions if you’re under retirement age. And obviously when you’re on disability, I’m expensive.

Danica Carlson:

I didn’t know that.

Audience:

So, I had to go to Medicare Advantage, but if you have the premium package, at a membership at Sam’s Club, you can get yourself set up for $40 a month, no insurance.

Danica Carlson:

Wow.

Audience:

Costco and some of those places, and that’s something I’ve been sharing in groups-

Danica Carlson:

That’s great.

Audience:

… that there are some things, because mycophenolate, the generic is, for the two grams a day I was taking, was I want to say $400 a month. And I thought, I can’t afford this if insurance isn’t going to pay it. And then someone else suggested to me that to do some calling. And it’s like, if you buy the a hundred dollar membership at Sam’s Club, you can get it for $40 a month and it doesn’t involve any insurance at all.

Danica Carlson:

That’s amazing. Yeah. It’s very smart. For pills, shop around. Right, that’s what you’re trying to say. And that’s amazing. For infusion treatments, it’s not going to work that way. So it just depends on what I’m trying to get onto, like myself after I have this baby, because it’s a class F drug, so it doesn’t work well with kids. But yeah, for that reason, because I don’t want to be beholden to needing infusions, because the cost is so high in dealing with, making sure that you have adequate coverage in place is just something I don’t want to have to do forever. But that-

Audience:

I was doing Rituxan and CellCept simultaneously. So I went and blew through my deductible and out-of-pocket for the entire year in one infusion. They billed me on January 2nd, and the rest of the year-

Danica Carlson:

And I think we can-

Audience:

It’s different on Medicare.

Danica Carlson:

We’d probably relate. What’s different on Medicare?

Audience:

You still have copays. And because of the Advantage thing is kind of like a hybrid, a lot of it is more like traditional insurance. But you’ve got your copays, and your medication tiers, and the things we won’t pay, but you have a gap period. Once your prescriptions have hit X amount, then you have this gap period where they only pay a portion of, and there’s some tiers that they’ll take care of no matter what. And then you have to have an amazing amount of out-of-pocket before then you’ll go into catastrophic.

Danica Carlson:

Mm-hmm (affirmative). I think for Medicare, anyone that is thinking about Medicare, just know that Basic Original Medicare is not going to cut it. You’re going to have to get a Medicare Advantage or Part C, as in Charlie, plan, which essentially, like you said, hybrid is your plan into being more like a commercial plan, like what you’re on now.

Audience:

That’s what I have is Medicare.

Danica Carlson:

Premiums, copays, all that kind of stuff, because the Original Medicare, it’s not good enough. It’s not good enough coverage for what we need.

Audience:

And the supplements, like I said, there’s a clause in there that says if you were under retirement age, they can deny you. They don’t have to offer you a supplemental plan, which would cover your drugs and all that stuff.

Danica Carlson:

Are you talking about a part D, as in drug, plan for supplemental?

Audience:

Well, I had to look at supplemental for regular, go straight Medicare with a supplement. Then there’s a clause in there. It’s like-

Danica Carlson:

Right. So I don’t know if Medicare is, if you’re not in that realm yet you might not care, but there’s Medicare Original, and then there’s all these different additional plans, types that you can get. There’s an option to stay with Original Medicare and do a supplement, which I guess is a really bad idea if you’re an NMO patient, because I didn’t know about the preexisting disease thing. So you instead want to get a Medicare Advantage plan, which is part C, as in Charlie, and then it acts just like normal insurance. And they cannot deny you for preexisting disease.

Audience:

Right, and they pay for the treatments that we need.

Danica Carlson:

It’s the exact same as your current. It would feel the same as from a patient perspective. They actually take your Medicare dollars that are assigned to you, and they use it to take care of you, just like through a commercial typical plan.

Audience:

My doctor is, I mean, primary care is $15, and specialists are $40. The only thing that’s horrible, you were talking about physical therapy. I can go to physical therapy as much as I want, but it’s $40 copay per session. So it’s like, I would love to go to physical therapy, but I don’t have $120 a week to go to physical therapy, which is crazy. And you would think that if they would be on the smart side, they would want me in physical therapy instead of dealing with complications and not doing physical therapy.

Danica Carlson:

Right. It’s a little different, as far as pushing the envelope, what we were talking about, making an exception, it’s a little bit different when you’re dealing with a Medicare plan, because it’s so heavily regulated by the government. Their red tape is not the same as the other red tape. They don’t have wiggle room. They have to strictly follow these guidelines. They present to the government, “This is going to be our plan. I’m Aetna, I’m Cigna. This is our plan.” They can’t deviate, whereas all the other non-Medicare people it’s Cigna or Aetna’s decision alone, and they can make those changes if they deem it appropriate. But when you’ve got Medicare involved, you’ve got big brother really far reaching that won’t allow it. So what I would do though for that is go directly to the company, the physical therapy company and say, “Hey, can I have a discount?” and then pay with no insurance, just out-of-pocket. What deal will you give me for? I would try to work out something like that, if you really feel like you need it.

Danica Carlson:

It’s just another way of looking at it. Deals are out there, shop around for the drugs. They’re out there. There are solutions to this really messy, really piecemeal system that we live in, but there is a process. There are paths forward. And I usually know what those are. I can figure them out for you if you’re not sure, but rarely are we just left basically to die. We can fight, and we can get what we need. And it really is life or death, at least I feel like it is no joking matter, really. So, yeah?

Audience:

Do patients in other countries, like she mentioned in the speech today, do they have better success rates and fewer emissions, just because their healthcare system is taking care of them better?

Danica Carlson:

Wow. That’s an amazing question. I would bet, yes, but I don’t think-

Danica Carlson:

Yeah, I don’t think anyone’s done a study on that, but I think what struck me is having these conversations, and the first thing that these people from different countries have said is, “Oh my gosh, your guys’ medical bills. Oh, that’s horrible. I can’t believe you deal with that.” And I’m like, “I know, it’s bad.” And they’re just … That’s the first thing that comes to mind is like, “I’m so lucky I don’t have to deal with it.” And so, I think that’s probably very true. I’m we also know very acutely how intimately stress is related to flares, and that kind of thing. So if you could eliminate that humongous stress of this financial burden, imagine how much better you’d feel. I mean, there isn’t a study, but there maybe there should be. I think, I mean, where my mind would go is that I would like our healthcare system overall to be more like the National Health System, or what they have in Australia, a single payer system. But I don’t know if … That’s getting political, but that’s what I think that we need, and it’s to take care of everybody.

Audience:

The only thing I hear from friends that are in Australia and England is that, “We wait.” If you have an acute flare, you are not getting in an MRI tomorrow, not going to happen. That is the trade off is that there’s fewer doctors, more patients, and that they spend more time waiting to get things in advance. Or the thing that they are envious of our systems, like, “Yeah, your insurance system is messed up, but you can get in, and get stuff done a lot quicker than we can.”

Danica Carlson:

So, we heard a talk earlier about a woman from UK. I actually was speaking with her about this, and I asked that exact same question. I’m like, “I’m really curious. Tell me what it’s like, because what I hear is that you have to wait.” And you know, they couldn’t give me exact examples, but they were basically … her and her husband were saying they didn’t experience that. If it’s emergent, it’s emergent, and they do get the care that they need pretty quickly. And they didn’t experience having to wait or anything.

Audience:

That’s great.

Danica Carlson:

So I don’t know if that was just a unique experience, but that, I was like, “Oh, so what’s to lose? Let’s be like you guys, if there’s no wait involved.” So I don’t know. I don’t know. I don’t know the answer to that. Did you have another?

Audience:

Yeah. Okay, so you’re not an advocate so that’d be your doctor, but also my insurance has assigned a nurse, who’s like my caseworker, because she works for the insurance company, which sort of seems like a conflict of interest to some degree. Because if she’s really being a nurse, or she really protecting the insurance company not paying for things. I mean, do you …

Danica Carlson:

Yeah, it seems like a conflict of interest. So these people are people just like us. They have hearts. They’re compassionate. What I’ve come to learn is usually they’re empathetic people that when they hear you on the other line and hear your story, they want nothing more than to do everything they can to help you. They’re usually those kinds of people. They’re just very working from the heart, not the mind. So what they’re going to do is everything they can within their power within the system that they’re in to help you. The problem there is there are limitations, and there’s red tape, and they don’t always have the wherewithal, or knowledge, or ability to push past that red tape, so they can only get you so far. So it depends on what the specific battle is that you’re having.

Danica Carlson:

But these are people that are fighting for you, I think almost 99% of the time. So know that they have your best interest in mind, but they have limitations. And that’s why I say go to your doctor, because your doctor’s level is … your nurse is here. Your doctor’s level is way up here, as far as who they’re talking to. And you need things to change that are outside of red tape area, which is … So again, it just depends on the specific situation. If it’s something big, like needing coverage for a medication, and you’re off-label, it might have to go straight to the top. If it’s something like out-of-network coverage, that your nurse can probably deal with that.

Danica Carlson:

But these are good people, these are. Insurance is not the devil. They have the bottom line. They have their business. And if they lose money, they don’t exist anymore, and we don’t have insurance companies. So it’s just understanding that, and just working within their process. But ultimately, we all have a fighting chance, because if we don’t get this care, we cost more. And they’re doing a cost benefit analysis. So if you don’t get the medication you need, or you don’t get the MRI, and then you have another flare, and end up in the ER, or think about everything that happens when you don’t get what you need, you cost more, and they see that if it’s brought to their attention.

 

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"Cureageous Together" NMO Patient Day Welcome, Ms. Victoria Jackson, Founder - July 10 - 2022 International NMO Patient Day