TRANSCRIPT:

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 by our generous sponsor, Biohaven Pharmaceuticals. 

Migraine can have a profound impact on employees and employers. Paula Dumas, president of World Health Education Foundation, explores the impact migraine can have on businesses and explains her organization’s strategy for producing healthier workplaces.

Paula Dumas: Hi, I’m Paula Dumas, and I am pleased to be a part of the 2021 Migraine Symposium, presented by the Association of Migraine Disorders. And thank you to the organizers for including me this year and addressing the topic of migraine at work.

So migraine at work is a deeply personal issue for me. I have struggled and juggled with migraine for decades now, and my career has been nearly derailed and somewhat reinvented by this disease. And so I’m pleased to share that with you, and hopefully it’ll be an encouragement to you, whether you are an employee or employer or someone who’s really just monitoring the issue and trying to understand what can change in terms of public policy to create healthier, more productive workplaces.

So I’ve titled my talk “When Work Doesn’t Work Anymore” because for me, many years, it did not work. I was really struggling to get by. Like many of the people that I’ve had the opportunity to interview, like David and Morgan and Suzanna and Linda, they are struggling with migraine. And in the workplace, it’s there; it’s just hiding in plain sight. And it has a profound impact on not just the individuals, but also on the organization.

It can mean reduced productivity from people who can’t work at their very best but feel the need to show up, like David, who would have to go home frequently from his job as an insurance agent, or Suzanna, who was a call center manager, who said she had to hold it together just to provide for her family as a single mom. That affects her results in terms of her progress in her job and her advancement, her compensation, as well as the results for the company when she can’t work and her team can’t work at their full capacity.

Morgan was a manager in a warehouse, literally driving a forklift at times, and you can imagine trying to drive a forklift with a migraine attack under way that puts the company as well as herself and her coworkers at risk. Whereas Linda, who was a school teacher, had to reinvent herself as a photographer because she was fired. Some of these stories might sound a little bit like yours or ones that you’ve encountered if you have dealt with migraine in the workplace for any period of time.

Migraine really takes a toll on the individual, but it’s the organization that picks up the bill. And that’s why it’s important for all of us to understand what’s going on and how we can address it.

As I said, this issue, for me, has been personal. I’ve had quite a roller coaster with migraine over my life, starting out in my teens, when I had daily abdominal migraine and was undiagnosed. And then I had a bike accident when I was 23, which resulted in a concussion, and that’s when I got my migraine diagnosis. I then married and had our first couple of children, but before that happened, I had four miscarriages due to migraine-related drug interactions. 

And my career began to take off, but then so did migraine, and it became chronic. You’ll see my mouse ears, which indicated my transition from working at Apple to working at Disney, and I had a lot of responsibility, opportunity. I was flying all over the world with two small children at home and dealing with migraine as much as 25 out of 30 days a month.

But do you think my employer knew it? No, they did not. It was hiding in plain sight, and it just wasn’t working so much anymore. I started to go into perimenopause, and I was still chronic — again, still with kids. And it was at that point that I decided to step out and move into nonprofit and consulting work. And I don’t think my employers had any idea out why I was leaving, because I didn’t really talk about it at the time.

And as I started to go into the menopausal phase of life, I discovered a new advocacy career as an editor, a writer, a researcher, a host, and I became episodic again by learning some of the things — by applying some of the things that I learned from world leading experts. So I say I’m a corporate executive turned advocate, and I now have the opportunity to chair the Migraine at Work steering committee — on good days and bad days. I lead the World Health Education Foundation. I produce the Migraine World Summit. I’m the founder and editor of migraineagain.com as well.

So if migraine is really such a big problem, why aren’t employers addressing it? I had back pain as well, and I got all kinds of accommodations from my employers for dealing with back pain, but nothing for migraine — because, of course, I wasn’t talking about it. It doesn’t show up in claims data for companies or organizations, and you generally don’t hear about it too much via staff complaints, and it doesn’t appear in reasons for sick leave or absences.

The good news is that there are some proven solutions for both employee and employer. It’s been written about in the Harvard Business Review and demonstrated through some migraine workplace programs. We’ve seen a 53 percent decrease in absences from migraine workplace programs and a 90 percent decrease in overall productivity loss. And that is quite significant and not very expensive or difficult to pull off.

One of the challenges is that many employers don’t understand migraine. We know. Anybody who’s listening and has dealt with migraine for a period of time might think that others trivialize it as just a bad headache, whereas that is just one of many symptoms that you might experience. 

In addition to the headache and the pain, the aura traits, the visual distortions and language deficits, the word salad that you might spit out when you’re at work, when you intended to say one thing and you wind up saying another; even being dizzy; having nausea and vomiting; sinus problems; sensitivity to light, sound, odor, touch, movement — all of these things are true for many people with migraine and make it very difficult to work and operate well. And some also experience cognitive impairments: difficulty concentrating, or with language or memory or mood. And those are things that make it difficult to do your best work.

But we — and by “we,” I mean the Migraine at Work coalition and the folks involved in it — believe that by supporting people with migraine in the workplace and their families, we can improve the inclusion of people with disabilities, DE&I; absenteeism, missed days of work; presenteeism, which is not operating or producing so well on the job; actual productivity for an organization; engagement and satisfaction in one’s job; performance; and then retention and loyalty to an organization that takes care of its people. And we also have the research to prove it, which is the really exciting part.

As I said before, migraine is hiding in plain sight, and it’s particularly true among employed women. And if you look at the bell curve of those who are most affected by migraine profoundly, it tends to happen to women in their peak career years of 33 to 55. More than one in four women in that age range is dealing with migraine. It’s the number-two leading cause of disability, and it’s more than asthma, diabetes, and epilepsy combined. So the next time you’re in the workplace, look around, and one in six adults who are surrounding you have migraine, and they’re just not talking about it.

It’s important to remember that migraine exists on a spectrum of impact. Episodic migraine, which is what most people have, might be one to three days of headache or migraine per month, whereas some of us have been in the chronic-migraine category, where it was occurring more than half the days of the month or nearly every day of the month. And that’s when it really, really begins to interfere with work. So 65 percent of people are in the zero-to-three category, and only 6 percent of us are in that chronic migraine category. But it’s still a huge number of people.

If you’re wondering how can work impact migraine and migraine impact work, there are a number of different ways that this happens: bright lighting, stressful jobs, screen time, bad posture sitting in chairs, unsociable working hours. Sharp smells or fragrances — this is a big problem, and most workplaces are not fragrance free, and it can really be bothersome. In fact, it can take an ordinary day and turn it into a completely disabling day for some people with migraine. And then poor diet if you’re working on the go. 

But the good news is that there are some cost-effective work-environment accommodations that can reduce migraine, and they don’t cost very much. Teleworking and flex time may improve people’s productivity. For me, it made a profound difference. And then good migraine management may benefit the productivity of all the employees because most of us work on teams, and when you work on a team and one person’s down, the whole team is struggling.

So it’s important, whether you’re the employee or the employer, to think about how much migraine might be costing your organization. The good news is the Integrated Benefits Institute has done some of the math on this to try to understand the impact on health and productivity of chronic conditions, including migraine and other headaches like cluster and other severe headache types. 

And so for every 1,000 employees, migraine in the workforce costs about $84,000 in excess healthcare treatments and lost work time. Most of that is actually in presenteeism. But what’s really cool to look at is to take this in any organization, and if you work for an organization — one of mine had 58,000 employees. That number — I can’t do the head math — but that number would get the attention of any CEO or CFO if there was an opportunity to reduce it or adjust it.

What’s really interesting about migraine is that there are hidden costs of what we call “presenteeism.” And most people think, “Oh, people with migraine are going to miss a day of work.” The reality is that most people with migraine who I know — and the data supports this — work through them if they can, and so they do everything they can to keep from calling in sick. But, in fact, what happens is we’re working on the job and just not working at full capacity. And that’s what’s called “presenteeism.”

And as you can see from this chart, it is much more significant when you get into the chronic migraine, the number of days per month at 15 days per month. It’s much less significant when you’re talking about less than four days per month. This is a chart that was done among blue-collar car factory workers. And you don’t want to be driving in a car when somebody is really impaired in their work and they’ve not been able to put the part in the right spot. That’s a safety hazard.

Similarly, another study was done looking at white-collar healthcare service workers, and healthcare, ironically, is one of the biggest sectors for people with migraine in terms of employment. So if you look at the percentage of health-related corporate costs due to presenteeism, to people not being able to perform well on their job, migraine and headaches are second only to allergies. And some of the other conditions, like depression and neck pain and digestive problems, that are listed here go right alongside migraine, and many people who have migraine also have those things.

A case study was done with a major global employer looking at employer benefits and employee benefits, and, for the employer, there’s a bottom-line gain of doing a wellness program. One of them found a 490 percent improvement in the first year in the return on investment for what they spent on the program versus what they got back, and a much more consistent work output. 

If you look at it from an employee lens, you saw people reporting a better quality of life: 14 net personal days per year, reduced concealment — when you don’t have to hide it, it feels so much more comfortable to go to work — and improved health.

But the win-win is right in the middle, and that’s greater productivity: 11 net working days per year and improved workplace morale — like a more migraine-friendly environment, where everybody understands what migraine is about and people can talk about it as openly as they might talk about back pain, for example — and lower employee turnover, so teams get to stay together.

So Migraine at Work really came together as a coalition of some incredible organizations — and this is not an exhaustive list — but a number of organizations who have really stepped up to do a lot in this space. The National Headache Foundation and American Migraine Foundation have both developed some great resources in conjunction with IHS Global Patient Advocacy Committee. Migraine World Summit, which I’m also involved in, has done a number of interviews on this topic in depth. CHAMP, the Coalition of Headache and Migraine Patients, has been working to bring many of the organizations together and ensure that this issue remains top of mind.

Migraineagain.com, the website that I had founded, has a number of great resources. Headache and Migraine Policy Forum has done a tremendous amount in terms of helping to shift policy among employers and federal protections for people with migraine. And the World Health Education Foundation, which I also founded, is really operating the coalition of Migraine at Work to bring these organizations together.

So our mission, for the Migraine at Work coalition, is to build healthier, stigma-free and more productive workplaces for both employers and employees. And we provide a number of resources on our website, migraineatwork.org, that you can check out that may be useful to your particular situation right now.

What do we do? Well, really five key things. First, we inform. We educate on the migraine burden and the silent costs of presenteeism, with some of the data that I’ve shared with you today and much, much more. We empower and support those people with migraine to be able to discuss it openly in the workplace at the right time and in the right way. We reduce stigma by educating all employees on migraine. I want every boss and every coworker of a person with migraine to understand the disease and stop making it a hostile work environment for people who have it.

We help you measure — to provide tools to measure the impact in the workplace. We can literally tell employers how much we believe it’s costing them in their unique environment, based on different factors: the size of the organization and the industry that they’re in. We have models that can help to project that. And we can partner with companies to help implement management programs. So there are a number of companies that are beginning to take this seriously and step forward to make a difference for their employees and for their own bottom line.

So there is a Migraine at Work program, for example, that is a 12-week program that is a starting point for many organizations that decide to do this. It includes educational modules, such as the WorkMigraine, that are medically reviewed and fact checked and up to date with the best practices. And each of these modules is 8 to 14 minutes each, something someone could complete on a work break if they wanted to or sometimes at a coffee break, for example.

And then there are educational handouts, which includes the doctor discussion guides, migraine management checklists, durable resources. There’s a live webinar with board-certified headache specialists who can do Q and A and, in some cases, do these in person in certain workplaces. And then there’s a feedback-and-evaluation loop to help measure how big the problem is in the workplace on key metrics and see how much the needle is moved by the implementation of programs that are just like this — pre- and post-program survey tools. And, of course, it can continue on and on. But this helps demonstrate the return on investment through health assessments and work limitation assessments that can help an organization justify the continued support of these types of programs.

So just a quick glimpse at one of the programs, which is the WorkMigraine modules that were developed by the National Headache Foundation — includes seven modules that provide essential information quickly. And I’ve looked at these, and they are fantastic. They are set up on things like the migraine patient, migraine triggers, diet and migraine, and so forth. And then there are additional modules specifically for Human Resources to know what to address in the workplace and for the employer to understand how to reduce costs and increase productivity. But these modules are designed specifically for employees. They have learning objectives and several references for further education that are really helpful.

So the impact on the employee experience, really, we’re trying to fully include women, people, and others with disabilities — what in many organizations is called diversity, equity, and inclusion, DE&I. We want to increase productivity, reduce the number of times you have to call in sick, or just try to work without feeling very good. And then increase the engagement, satisfaction, and morale — too many people are dropping out of the workplace or being really frustrated in the workplace because of migraine, and it affects the entire organization morale. And then improved retention and loyalty, so that people like me and many of the others who you saw earlier are able to keep the jobs that they really, really need and employers are able to keep the people in whom they’ve invested a lot of training and effort.

So if you’re curious about this and you want to know more, we would encourage you to connect with us online. We have a website, migraineatwork.org, which I showed earlier; a LinkedIn community, where we’re offering webinars. So I’d encourage you to check those out. We’re on Facebook, at Migraine at Work, and also on Instagram, @migraineatwork.

You can also reach out to me personally or my colleague, Carl Cincinnato, and ask us how we can help you and your organization improve the health, wellbeing, and productivity of you or your employees living with migraine.

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Voice-over: Thank you for tuning in to Spotlight on Migraine. For more information on migraine disease, please visit MigraineDisorders.org.

*The contents of this podcast are intended for general informational purposes only and do not constitute professional medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition. The speaker does not recommend or endorse any specific course of treatment, products, procedures, opinions, or other information that may be mentioned. Reliance on any information provided by this content is solely at your own risk.