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Talking About Migraine at Work: Your Thoughts?

migraine-at-workWhat’s your take on this statement?: “The key to managing migraines and work is communication. It’s important to let coworkers and managers know about your condition and educate them about it.”

That comes from Migraine at Work on UCLA Health’s migraine information page. The article’s recommendations for “initiating effective communication” include (paraphrased):

  • Educate your coworkers—because they don’t know what migraine is, they don’t know how disabling an attack can be. The article recommends getting pamphlets from your doctor to share with coworkers.
  • Talk to your manager—to reduce triggers by modifying your work environment and gain access to a dark, quiet room during an attack.
  • Be honest—say that migraine attacks can be disabling and you hate to miss work. Tell coworkers that you miss out on fun activities, too, not just work.

I haven’t worked in an office in 13 years, but these recommendations strike me as idealistic and tone-deaf. Other than the suggestion to be honest that you don’t like to miss work because of a migraine attack, this advice raised more questions for me that it resolved: Is it really a good idea to tell your coworkers and manager that migraine attacks can be massively debilitating? Is a person with migraine responsible for educating coworkers? Will pamphlets be fodder for gossip? Do coworkers even listen to attempts at awareness-raising? Are managers receptive to requests for accommodations? Do coworkers care if your migraine attacks prevent you from enjoying leisure activities?

I’d love to know what you think. Please leave a comment below (or if you get posts by email, reply to the email with your response).

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Soaring Prescription Drug Prices: Pharmaceutical Companies Pressured to Justify Pricing

Drug Prices Soar, Prompting Calls for Justification

prescription_drug_pricesWhat a welcome headline from the New York Times. The cash prices of prescription drugs have always seemed eye-poppingly expensive, but in recent years, the pricing is closer to heart-stoppingly exorbitant. (Obviously that’s hyperbole, but it feels close to the truth. I’ve been researching triptan costs this week. Treximet, a combination of a (relatively) inexpensive generic triptan and an OTC painkiller, costs $71.10 per pill! That’s with a discount with a prescription card.)

Pressure is mounting for pharmaceutical companies to disclose drug development costs, profits for specific medications, and how prices are set, according to the New York Times article. It’s coming from a wide range of sources: doctors, patients, patient organizations, state and federal politicians, the U.A.W. Retiree Medical Benefits Trust, and even Bill Clinton. At least six states have introduced bills in the last year to require drug companies to justify pricing.

More than 100 prominent oncologists call for a grassroots movement to stop the rapid price increases of cancer drugs in an article that will be published in the journal Mayo Clinic Proceedings tomorrow. “There is no relief in sight because drug companies keep challenging the market with even higher prices. This raises the question of whether current pricing of cancer drugs is based on reasonable expectation of return on investment or whether it is based on what prices the market can bear,” they wrote. Although the focus is cancer drugs, these problems apply to all prescription drugs.

Unsurprisingly, pharmaceutical and biotech companies are balking. You’ve heard the explanations: research and development is expensive, something has to cover the cost of all the drugs that don’t make it to market, and  drugs can lower health care spending in other areas. That’s not the whole story, of course. This anonymous comment from the director of a multiple sclerosis drug developer is telling: “We all look at each other and keep pace with each other. Honestly, there is no science to it.” There’s also the fact that Medicare is legally barred from negotiating drug prices—they must pay whatever drug companies charge.

I’m probably more sympathetic to pharmaceutical companies than many patients are. Drug development is expensive and some drugs have a narrow market limited by a small number of patients with a disease. Publicly traded companies have to earn profits.

And yet. How much of pricing is determined by the fact that the person recommending the drug and the one taking the drug usually don’t even know how much it costs? How much of it is price gouging simply for the sake that it can be done? This article only addresses brand name prescription drugs; generic drug prices are also ridiculously high (and rising).

The media has been covering high prescription drug prices with increasing alarm over the last few years. This coverage and awareness-raising are critical first steps, but what do we do next? How can patients fight back? We can sign this petition, which is focused on cancer drugs, and email our state and federal representatives. But what else? I want to DO something, not wait for lawmakers to maybe, hopefully fix the problem. Boycotting the drugs feels like our only potential source of power. Even the most principled of us are unlikely to forgo medication we need to function or live to make a point. I feel trapped and powerless… which, for pharmaceutical companies, is the perfect place for patients to be.

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Showing Others What Migraine is Like in a Game

14 DaysWe’ve all wished we could place someone else in our migraine shoes so they can see what it’s really like to juggle the demands of the illness. 14 Days, a tabletop game, is attempting to do just that. In this two-person game, players try to manage their time and responsibilities in a two-week period never knowing when a migraine will strike. When a migraine hits, they then have to decide if it’s worth taking meds from a limited supply and what falls through the cracks.

14 Days is a narrative game. The Kickstarter description explains it as: “On migraine days, the other player will ask you a question about how migraines impacted your day. Something like, ‘Who felt let down by you today?’ ‘What promise did you make to yourself today?’ and ‘What new ‘cure’ did someone share with you today?'” Reading that description, I thought, A game that requires me think about how I let people down? No thanks, I already do that every day. But my gut reaction was overshadowed by the games tremendous potential for awareness-raising.

The game provides the chance to really talk about the difficulties of managing migraine (or many other chronic illnesses) and to let someone experience, to a small extent, the daily frustrations we face. Then it encourages players to talk about the impact of migraine and how we cope. In an interview I did with Hannah Shaffer, the game designer, she said that playtesting the game has helped her talk about migraine in ways she never could before.

All that and the game looks like it will be fun, the artwork is gorgeous, and it helps support another person with migraine who is doing great work to raise awareness.

Learn more about the game and hear more from Hannah in my writeup on Migraine.com: Putting Others in Your Migraine Shoes… With a Game. The Kickstarter campaign for 14 Days runs through July 28—just four more days. Pledging $8 will get you a PDF copy of the game when it is released; $25 will get you a full boxed version. With 259 backers, Hannah and her team have met their initial goal; now their stretch goals are within reach. Even if supporting the game isn’t in your budget right now, it’s worth taking a look at this creative approach to raising awareness about the impact of migraine.

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Your 30 Things Headache Disorder/Migraine Meme

Your response to the 30 Things About My Invisible Illness You May Not Know meme from Invisible Illness Awareness Week last year was so enthusiastic that I’ve adopted and adapted the idea for Migraine and Headache Awareness Month. Since not all headache disorders are the same, I’ve come up with slightly different lists for different types. If you fit multiple categories, you’re welcome to respond all those categories. Links to each set of questions are available at the end of this post.

You can submit your responses to be published on The Daily Headache. Each one will have a unique URL so you can share it any way you’d like. Directions follow. I’ll be highlighting some answers through Migraine and Headache Awareness Month, which starts June 1.

Even if you don’t wish to share your answers, answering them is a helpful way to think about how having a headache disorder has affected your life in both good and bad ways. Filling mine out made me cry happy and sad tears. It also reminded me of the incredible feat of living with a headache disorder, which made me feel proud.

To post your 30 things on The Daily Headache…

  1. Follow the link below to the set of questions you wish to answer.
  2. Enter your name and email address (neither will be published and I promise I won’t send you spam).
  3. Fill in the title field—it can be as simple as “30 Things About Mike’s Life With Chronic Daily Headache.”
  4. Read through the questions
  5. Find the submission form at the bottom of each list of questions.
  6. Copy and paste the questions and your responses into that form.
  7. Before clicking “submit post,” be sure you’ve filled in every field. Your post will not be submitted unless every field is filled in.
  8. Within 24 hours, I will moderate your submission (to prove it’s not spam) and it will be published as an individual post with a URL you can share. Check the 30 Things Meme category for your post then click on your post title to get the URL.

Links to questions…

30 Things About Your Life With Migraine

30 Things About Your Life With Cluster Headache

30 Things About Your Life With New Daily Persistent Headache 

30 Things About Your Life With Chronic Daily Headache

30 Things About Your Life With Tension-Type Headache

30 Things About Your Life With a Headache Disorder

I hope I haven’t made this too complicated in the name of inclusivity! Please let me know if you have any questions. Many thanks to Invisible Illness Awareness Week for this great idea.

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A Health Insurance Rant

health-insurance-rantTearing up over a headline on the cover of People magazine, which I happened to glance at when I walked past it at the pharmacy, was the telltale sign that depression symptoms had returned. I was already pretty sure they were back, it’s why I was at the pharmacy.

Although I was perfectly mostly happy with Wellbutrin, I had to reduce my dose because, thanks to a migraine attack, my brain is now so sensitive to Wellbutrin’s side effects that I am massively dizzy on the dose that manages my depression. Cutting my dose back, the dizziness finally became manageable (though still present) on Monday… at the same time it stopped keeping the depression at bay.

I’m already frustrated by the needs of my ever-changing brain, but I was hopeful a new antidepressant would help me balance all my competing needs. Or I was until my insurance denied coverage. Now my doctor has to jump through constantly moving hoops to prove that, yes, this is the drug I need.

While I wait to see if her appeal will be approved, I can either be so dizzy that I can’t move my head and can’t look at the computer or I can let my depression symptoms build so that I have no motivation to get out of bed and cry at everything. Either way, I can’t work, can’t run errands, and can’t do anything around the house. I could try another yet another generic antidepressant, though I’ve already tried many, and would have to decide which I prefer, potentially gaining a ton of weight or losing interest in sex.

I don’t have much faith in my doctor’s authorization being accepted. Since the first of the year, Hart’s been working on a getting a doctor’s authorization approved for a drug that I was told would definitely be covered under our plan. It’s a drug he’d been taking for months, paid for by the same insurance company, until the rules changed with the turn of the calendar page. Now he’s without a drug he needs. There is a replacement, a replacement that he’s already tried. Last time it increased his migraine frequency so much that I lost sleeping worrying that he was developing chronic migraine.

I miss the days when my doctor and I got to weigh all the relevant medical factors and decide which medication was right for me. Yes, I could pay for these drugs out-of-pocket (assuming I could afford them), but I already pay a small fortune for health insurance each month. Being told a service will cover what I need, tethering myself to that service for a year, and still having to wheedle and cajole to get what that service supposedly includes is absurd. Especially when all that time spent on the phone and submitting paperwork is unlikely to result in me getting the coverage I thought I was paying for. Tell me up front whether the treatment I need will be covered so I can make a fully informed decision, don’t lock me into something then change the rules.

That’s what I’m angriest about. I understand why insurance companies don’t cover certain drugs or treatments. Yet I did everything I could possibly do to make an informed decision, including 17 hours of research, questions for my insurance broker, and hours on the phone with the insurance company. Now I have a yearlong commitment to a health insurance plan that’s not providing the coverage I was assured they would provide.

I get that health insurance is a mess right now. I get that companies are scrambling to make a profit now that they have to provide coverage to people like me. And I am grateful to be able to have any insurance coverage for my entrepreneur/freelancer household. But how is that companies are able to provide only basic information for a consumer to use to choose a plan, give half-truths (or lie outright) when asked questions, then delay coverage for months? I can’t think of another consumer service that operates this way successfully. Certainly not one that requires a commitment to paying thousands of dollars over the course of the year, then telling the customer, “Oh, wait, we’ve changed our minds.”

How is this OK? How can that happen without repercussions?