S2:Ep5 – Navigating the COVID-19 Pandemic as a Migraine Patient
Voice-over: Welcome to Spotlight on Migraine, hosted by the Association of Migraine Disorders. Join us for fresh perspectives by medical experts and advocates as we explore the spectrum of migraine and dig deeper into this complex disease. This episode is brought to you in part by our generous sponsors Amgen and Novartis.
Hear the perspectives of a doctor, an advocate, and a patient on how the COVID-19 pandemic is impacting the migraine community. Our guests — Dr. Rick Godley, Joe Coe, and Nancy Bonk — discuss alternatives to receiving care during quarantine, new healthcare and insurance leniencies, and implications of working from home.
Since 2015, Amgen and Novartis have been working together to develop pioneering therapies in Alzheimer’s disease and migraine. Together, Amgen and Novartis share in a mission to fight migraine and the stereotypes and misconceptions surrounding this debilitating disease.
Molly O’Brien: Hello and welcome to Spotlight on Migraine. I’m your host, Molly O’Brien. As we’re all trying to navigate our way through the coronavirus pandemic, many migraine patients are left wondering, “How will this affect me?”
So today, we’re talking to a few guests to try to figure out how we will be affected. I’d like to welcome Dr. Rick Godley, with the Association of Migraine Disorders; Joe Coe, with Global Healthy Living Foundation; and Nancy Bonk, with Health Union, who runs Migraine.com. Thank you all so much for joining us today.
Dr. Rick Godley: Thank you.
Molly: Well, we’re excited to have you and have this conversation going. Obviously, a lot of information is changing as we figure out how to navigate this new world with the coronavirus. Dr. Godley, let’s start off with you. How is this affecting you and your patients?
Dr. Godley: Well, I think the issue for most of my patients with migraine is access to care. In the state of Rhode Island, there’s been an encouragement for many of the medical practices to at least temporarily shut down to reduce the exposure of patient-to-patient contact. In our specific office, we’ve chosen to not close down completely, but to have a blend of people that we need to see that you actually have to do a physical exam or deliver something in person. But wherever possible, we’re giving patients the option and encouraging them to use telemedicine.
And for the state of Rhode Island, I can at least say that the rules around HIPAA have been relaxed. So we have a secure video system in place for our office, but unfortunately, a lot of patients are not comfortable with that technology. So we now have the options of either FaceTiming or just having a telephone conversation.
Molly: That’s really interesting. Let’s talk about telemedicine. Some patients might be super familiar with it, especially migraine patients who might not be OK with going outside the house might already use it. But telemedicine’s sort of a new term to a lot of folks and not typically covered by insurance. Are you seeing that change as the coronavirus continues to grow and expand?
Dr. Godley: Absolutely. Telemedicine was really hampered by the fact that unlike, let’s say, a lawyer, when a physician was providing medical information over telephone, there was almost no reimbursement associated with that. The federal government took an early lead in this in providing reimbursement at a level at least of a low established-visit reimbursement rate, and that has allowed the private insurers to follow suit.
And this is changing on a pretty rapid basis. For instance, this morning, Blue Cross Blue Shield of Rhode Island had agreed to pay the same rate that they would if it was an in-person office visit, and they eliminated co-pays so the patient’s not now responsible for any payment, and that is a huge barrier to overcome. So we’re hoping that this will really encourage patients to use this type of access for medical advice.
Molly: That’s excellent news for people who need to seek medical care but are being restricted. And have you been in talk with anyone, or have you seen — for those migraine patients that aren’t able to get to the doctor, or have worries or concerns about getting treatment in terms of Botox, or if they need an actual procedure done, but they’re nervous about actually getting into the doctor, or just appointments aren’t being provided. Has there been any talk about that?
Dr. Godley: Well, it varies from office to office. In our office, we would screen those patients, and if they needed to be seen in person, we would see them.
Molly: So it sounds like the best point here is you need to get in touch with your doctor and have a conversation.
Dr. Godley: Yes.
Molly: Let’s move on and chat with Joe Coe, with the Global Healthy Living Foundation. And Joe, you live with migraine, like myself and also like Nancy. That’s my understanding. Talk to us a little bit about what you do and what’s being done to help those with migraine navigate their way through this.
Joe Coe: Sure, happy to. So Global Healthy Living Foundation takes our charge serious of helping people with chronic disease, and that includes people living with migraine. Some of the things that we’ve done so far — we created a one-stop-shop resource that you can find at GHLF.org that we are expanding. We started initially with a landing page on CreakyJoints, which is an autoimmune arthritis community, and we’re expanding on GHLF for all chronic diseases that have questions about coronavirus and the impact
And there you can find patient stories. You can find resources, up-to-date information. We’re really trying to report out what the chronic disease community needs. Often, folks felt isolated, alone, and invisibilized even further by this disease, that their concerns weren’t being taken seriously. So we really listen to community leaders and patient activists to ensure that this program’s informed by those voices.
Molly: I can understand what it’s like to feel isolated and alone. I think a lot of migraine patients can relate to that, and then with further precautions taken to help stop the spread of COVID-19, left feeling a little bit more isolated. Can you talk to us a little bit about what some of the support networks are doing within the Global Healthy Living Foundation?
Joe: Sure. So we’re tackling this problem on multiple fronts. So from an advocacy position, we’re calling on common-sense pieces of legislation or policy changes that could make access to treatments easier, like allowing a 90-day supply for all medications as opposed to a 30-day supply. We’re working to ensure that prior authorization and reauthorization doesn’t — you don’t need to go into the physical doctor’s office to do that, to fill out the forms, that that is being pushed through quicker. And we’re also urging state and federal governments to look at allowing non-formulary prescription drugs to be used in case the formulary drug is not available due to shortages, and also the ability to use out-of-network pharmacy providers to access those treatments.
From a support perspective, we have been engaging in community-building activities via Twitter, Facebook, Instagram, hosting Twitter chats, cohosting them with organizations. We cohosted Spoonie Chat last week. We helped support and launch with a ton of patient leaders a hashtag that was trending and was picked up by Huffington Post and Forbes called #HighRiskCOVID19.
And then education. At GHLF.org, you can find the most up-to-date information that we have for chronic-disease patients or high-risk COVID patients to access that information in a way that’s accessible and user friendly.
Molly: Sounds like you’re doing quite a bit there over at the Global Healthy Living Foundation. Before asking the next question, I do want to bring Dr. Godley back in just for a quick follow-up.
What they’re doing, Dr. Godley, trying to make medications more accessible during this time — it looks like making 30-day prescriptions easily accessible for 90-day prescriptions and kind of loosening up a couple of regulations with medication — do you think that can be more helpful if those regulations are less restricted for migraine patients and for doctors to help their migraine patients?
Dr. Godley: Absolutely. Again, one tries to find some positive outcomes from this crisis, and certainly, loosening some of the restrictions artificially put in place by insurance companies would be a big long-term advance in healthcare. So I applaud any of these changes that are implemented.
Molly: Lots of changes happening, hopefully for the better within the medical system, as patients working to get better access and Global Healthy Living Foundation doing their part, along with policy, education, and advocacy.
Joe, I want to go back over to you. Is there support that friends and family of people with chronic illness can find on Global Healthy Living Foundation website?
Joe: Definitely. So something that I wanted to raise that Dr. Godley brought up and I know that Nancy can speak to and ties into this question is we’re learning that society can adapt very quickly to needs when healthy people are impacted. A lot of these changes that folks are asking for — working from home, livestreaming events, doing all of these different things that we are having to do because of social distancing — chronic disease patients, migraine patients, all of us have advocated for those types of changes.
And I think there’s a really good opportunity here to show the empathy and connect the struggle with the anxiety that people without chronic disease are facing now with this threat, and help us help them better understand the struggles that people with chronic disease go through, because they’re feeling that anxiety and that pressure of not being able to leave and live their lives and do things that migraine patients live with on a daily basis and live through.
So you can find empathetic resources that caregivers can use. A lot of the patient stories that are written are written in ways that caregivers can use to better understand and inform how they connect with their loved one. And in the past, we’ve published — which you can find on GHLF as well — migraine caregiver guidelines that are general guidelines around how you can be a supportive loved one, family member, friend of a person living with migraine disease.
Molly: Excellent. Any advice that you have if someone might lose their job during this difficult time, whether they have migraine or not? Any resources?
Joe: We don’t have any direct resources for that. We would recommend that folks reach out, obviously, to their unemployment offices and elected officials. I think that we need to really look at those that are impacted by the economic ramifications of this disease, and the federal government and state governments really need to step in to support those folks, many of which live paycheck to paycheck, to ensure that they can continue to provide for themselves; continue to access the treatments that they need to not be in miserable, horrible pain; and continue to have some semblance of what was life before this outbreak.
Molly: And what’s tough too is a lot of people losing their job, unfortunately, or their job being put on hold because of this outbreak. And when you have a chronic illness, if your insurance is stopped or you’re not having an income, you can’t pay for your medication or your treatment. So the ramification is being spread much further than just the actual outbreak itself, so that’s tough.
Do you have any special recommendations for immune-compromised patients?
Joe: Oh yeah. I mean, we’ve been doing a lot of research and information gathering and spoke to infectious disease experts, rheumatologists, epidemiologists. And essentially, you are considered at high risk for complications if you’re immune compromised, and that means that you need to take special precautions and really heed the advice of social distancing and social isolation, for lack of a better word — two different terms, but depending on how serious your disease is, you should really speak with your doctor and healthcare team to figure out the right plan for you.
What we’re hearing from folks is that they understand that — the person that has the compromised immune system — but friends and family might not. And I think that it’s all of our jobs to really educate and push that message home that, I mean, it’s our responsibility as people who might not be that impacted to do what we can to protect those — and they’re not just our grandparents. They’re people that look like me, that look like you, that are children, that have diabetes, that have heart disease, that have autoimmune diseases.
And we all need to do our part to reduce the amount of cases that are going to overwhelm hospital systems. And that’s what we’re hearing, that if we don’t engage in these very drastic measures, that hospital systems will be just overwhelmed with cases and won’t be able to adequately treat folks.
Molly: We really appreciate all that you’re doing and information gathering to put out all this great information for those with chronic illness, with chronic migraine as well. So it sounds like a ton of great information available and resources out there with Global Healthy Living Foundation and Joe, so I appreciate that.
And you mentioned earlier you wanted to link Nancy in because it sounds like the both of you do have a ton of information and really getting kind of a pulse on what’s happening out there with those who have migraine.
So, Nancy, I do want to talk to you as well, kind of link you into this conversation. It’s my understanding you’re also living with migraine. I just want to check in with you on how you’re doing. And you also work with Health Union, who runs Migraine.com. What are people feeling? What are you hearing that people are talking about, those who are impacted by migraine?
Nancy Bonk: The majority of us are talking about being worried that we’re not going to get our treatment. For my example, I had Botox this morning, and I worried probably for the last week until I heard from the doctor. “Are they going to cancel? What happens if they cancel?” Then I’m going to be pushed back on my treatment, and Botox has pretty much reduced my migraine attacks by half.
So they called mid-week to see if I was feeling okay and, yes, that they were going to see me. Then they called again on Friday and prescreened me, asking if I had a fever, cough, was exposed, traveled. They called again and left me a message on Sunday night asking if anything had changed. And then when I went into the office this morning, there was only one other patient, and I was again asked about prescreening.
All the nurses, all the employees were gloved, masked, and gowned. One nurse did say she’d been wearing the same mask for four days. I felt bad for her. But I was able to get my Botox.
Now, on the other hand, I’ve spoken with a lot of patients whose offices are just closing down and not giving them any answers about when they’ll be able to have Botox. So that’s very alarming and anxiety provoking.
Molly: I have a surge of anxiety right now just hearing you tell that story, so I think many of us with migraine can relate to that on some level, and I’m sure many out there are checking their calendar to see when their next treatment is.
Molly: So I’m grateful and thankful that you were able to get in and see your care provider and hope that you are feeling well and okay right now. But yeah, a lot of anxiety surrounding this, so glad that we’re able to talk to you.
What else are you seeing in your community? How else do you think people living with migraine have been impacted by the COVID-19 outbreak?
Nancy: Well, it’s interesting. I’m hearing a lot regarding isolation. As a community, we feel pretty isolated, and it’s kind of like “same old, same old” almost. But it’s interesting because now that we’re seeing the general public catch on to isolation or self-quarantine or whatever we’re calling it, it’s interesting because we know how to deal with isolation. We’ve dealt with the delivery services. We deal with FaceTiming each other, Netflix parties, so it’s almost trying to relax others who are in this situation, that you can get through it. We’ve been going through it for years.
Molly: I can totally relate to that as well. I don’t know if it ever makes it easier when there’s more people also isolating. I don’t know if it ever makes it easier.
Molly: Have you had any talk or have you heard from anyone, of those people who are working from home, if they’re having any trouble dealing with looking at a computer screen all day, because instead of working out in the real world, you have to work more with technology or be on a computer or stay in one location, or having to deal with — anything having to change up their work schedule or causing any problems like that, or possibly cleaning solutions, because we’re using a lot more of those, so having to be exposed to different smell, lights, that kind of stuff. In your travels, are anybody talking about that kind of stuff?
Nancy: Well, what’s interesting, people who are home working with computers, they can alter their backgrounds to make the lighting just exactly what they need, so on that respect, it’s better than being in the office. You can put shades over your lamps, just make everything a little softer, a little quieter, turn down the lighting on your computer screen. So on that regard, people are — I’m not going to say “enjoying”; that’s not the right word — but that’s okay for them.
The cleaning products is tough because bleach — I’m not exactly sure what cleans what as far as killing the virus and bacteria, but we know a lot of strong odors trigger a bad migraine attack for many people. So I haven’t heard anyone be able to combat that yet, but I’m sure they’re out there. I just haven’t heard from them.
Molly: And that wraps up our episode of Spotlight on Migraine. I’d like to thank our guests, Dr. Rick Godley, Joe Coe, and Nancy Bonk. Thank you so much for joining us. Until next time, I’m Molly O’Brien.
Thank you for tuning in to Spotlight on Migraine. For more information on migraine disease, please visit MigraineDisorders.org.
This podcast is sponsored in part by Amgen/Novartis.
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