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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?

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Migraine Research Underfunded

U.S. medical research funding is decreasing and some diseases are horribly underfunded, according to a report published in the Journal of the American Medical Association (JAMA) last Tuesday. When it comes to migraine research, The Washington Post’s headline on the report is telling: How the U.S. Underfunds Research for Migraines, Asthma and Depression. As headache specialist Robert Shapiro, M.D. (@headachedoc) pointed out on Twitter, no major disease is as underfunded as migraine is. It’s “almost off-the-charts.” Literally. Take a look at where migraine appears on this chart.

In a related tweet, Dr. Shapiro notes that although migraine and schizophrenia have the same disease burden, NIH funding for schizophrenia is 12 times higher than it is for migraine.

It’s impossible to read those numbers and not get angry. Especially knowing these numbers:

  • Given current population statistics, nearly 38 million Americans have migraine.
  • As many as 15 million Americans have chronic migraine.
  • Migraine costs the U.S. more than 29 billion dollars a year in medical expenses and lost productivity.
  • Migraine is by far the most disabling of all neurological disorders.
  • Migraine is the third most common disorder on the planet.
  • Migraine is the seventh highest cause of disability worldwide.
  • Severe, continuous migraine is as disabling as quadriplegia, active psychosis, and dementia and is more disabling than blindness or paraplegia, according to the World Health Organization’s disease burden assessment.

Migraine is not a measly little headache. It is not inconsequential. I have lived with the devastation of severe, continuous migraine. I often wondered if it was a life worth living. Too many people with chronic migraine decide that it isn’t. Will lawmakers ever see our desperation and need? If so, will they ever act on it?


References for migraine stats:

 

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Giving Tuesday: Please Support the 36 Million Migraine Campaign

For Giving Tuesday, please consider donating to the 36 Million Migraine campaign — even $1 donations are extremely valuable. The campaign is to raise money for research, of course, but it’s also about showing lawmakers how many people are affected by migraine. The more people who donate, the more apparent it is that the allocation of research dollars impacts real people whose lives have been altered by migraine.

You can make your donation here. Donations can be designated in honor of a mentor or loved one. You can also donate using American Express reward points. And, if you work for a company that matches donations, you might be able to double your donation. All the details are available on the 36 Million Migraine donation page.

(By making a donation, you will be signed up for a weekly educational email from the American Headache Society. That was a bonus for me, but you can easily unsubscribe if you don’t want to receive it. They’ve never sent me requests for additional donations.)

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Insurance Companies Shifting Drugs to “Non-Preferred” to Raise Co-Pays

Health insurance companies can no longer deny patients coverage because of pre-existing conditions, but there’s no denying we’re expensive to insure. The latest strategy to increase profit is shifting even generic medications to “non-preferred” status, according to a story by ProPublica and The New York Times’ The Upshot. Patients pay higher co-pays for non-preferred medications. For some illness, all generics are listed as non-preferred. Migraine is mentioned in the story, which probably means triptans will be shifted to non-preferred (which could affect people with cluster headache as well).

Here’s the report in full, republished with permission:

A New Way Insurers are Shifting Costs to the Sick

By charging higher prices for generic drugs that treat certain illness, health insurers may be violating the spirit of the Affordable Care Act, which bans discrimination against those with pre-existing conditions.
by Charles Ornstein
ProPublica, Sep. 17, 2014, 11 a.m.

Health insurance companies are no longer allowed to turn away patients because of their pre-existing conditions or charge them more because of those conditions. But some health policy experts say insurers may be doing so in a more subtle way: by forcing people with a variety of illnesses — including Parkinson’s disease, diabetes and epilepsy — to pay more for their drugs.

Insurers have long tried to steer their members away from more expensive brand name drugs, labeling them as “non-preferred” and charging higher co-payments. But according to an editorial to be published Thursday in the American Journal of Managed Care, several prominent health plans have taken it a step further, applying that same concept even to generic drugs.

The Affordable Care Act bans insurance companies from discriminating against patients with health problems, but that hasn’t stopped them from seeking new and creative ways to shift costs to consumers. In the process, the plans effectively may be rendering a variety of ailments “non-preferred,” according to the editorial.

“It is sometimes argued that patients should have ‘skin in the game’ to motivate them to become more prudent consumers,” the editorial says. “One must ask, however, what sort of consumer behavior is encouraged when all generic medicines for particular diseases are ‘non-preferred’ and subject to higher co-pays.”

I recently wrote about the confusion I faced with my infant son’s generic asthma and allergy medication, which switched cost tiers from one month to the next. Until then, I hadn’t known that my plan charged two different prices for generic drugs. If your health insurer does not use such a structure, odds are that it will before long.

The editorial comes several months after two advocacy groups filed a complaint with the Office of Civil Rights of the United States Department of Health and Human Services claiming that several Florida health plans sold in the Affordable Care Act marketplace discriminated against H.I.V. patients by charging them more for drugs.

Specifically, the complaint contended that the plans placed all of their H.I.V. medications, including generics, in their highest of five cost tiers, meaning that patients had to pay 40 percent of the cost after paying a deductible. The complaint is pending.

“It seems that the plans are trying to find this wiggle room to design their benefits to prevent people who have high health needs from enrolling,” said Wayne Turner, a staff lawyer at the National Health Law Program, which filed the complaint alongside the AIDS Institute of Tampa, Fla.

Turner said he feared a “race to the bottom,” in which plans don’t want to be seen as the most attractive for sick patients. “Plans do not want that reputation.”

In July, more than 300 patient groups, covering a range of diseases, wrote to Sylvia Mathews Burwell, the secretary of health and human services, saying they were worried that health plans were trying to skirt the spirit of the law, including how they handled co-pays for drugs.

Generics, which come to the market after a name-brand drug loses its patent protection, used to have one low price in many insurance plans, typically $5 or $10. But as their prices have increased, sometimes sharply, many insurers have split the drugs into two cost groupings, as they have long done with name-brand drugs. “Non-preferred” generic drugs have higher co-pays, though they are still cheaper than brand-name drugs.

With brand names, there’s usually at least one preferred option in each disease category. Not so for generics, the authors of the editorial found.

One of the authors, Gerry Oster, a vice president at the consulting firm Policy Analysis, said he stumbled upon the issue much as I did. He went to his pharmacy to pick up a medication he had been taking for a couple of years. The prior month it cost him $5, but this time it was $20.

As he looked into it, he came to the conclusion that this phenomenon was unknown even to health policy experts. “It’s completely stealth,” he said.

In some cases, the difference in price between a preferred and non-preferred generic drug is a few dollars per prescription. In others, the difference in co-pay is $10, $15 or more.

Even small differences in price can make a difference, though, the authors said. Previous research has found that consumers are less likely to take drugs that cost more out of pocket. “There’s very strong evidence for quite some time that even a $1 difference in out-of-pocket expenditures changes Americans’ behavior” regarding their use of medical services, said the other co-author, Dr. A. Mark Fendrick, a physician and director of the University of Michigan Center for Value-Based Insurance Design.

Fendrick said the strategy also ran counter to efforts by insurance companies to tie physicians’ pay to their patients’ outcomes. “I am benchmarked on what my diabetic patients’ blood sugar control is,” he said. “I am benchmarked on whether my patients’ hypertension or angina” is under control, he said. Charging more for generic drugs to treat these conditions “flies directly in the face of a national movement to move from volume to value.”

If there are no cheaper drugs offered, patients might just skip taking their pills, Fendrick said.

The authors reviewed the drug lists, called formularies, of six prescription drugs plans: Harvard Pilgrim Health Care in Massachusetts; Blue Cross Blue Shield of Michigan; Blue Cross and Blue Shield of Illinois; Geisinger Health Plan in Pennsylvania; Aetna; and Premera Blue Cross Blue Shield of Alaska. They wanted to see how each plan handled expert-recommended generic drugs for 10 conditions.

The conditions are not all high cost like H.I.V. and Parkinson’s. They also include migraine headaches, community acquired pneumonia and high blood pressure.

Premera and Aetna had preferred generic drugs for each of the 10 conditions the authors examined. Harvard Pilgrim, a nonprofit often considered among the nation’s best, did not have a lower-cost generic in any of the 10 categories.

Four of the six plans had no preferred generic antiretroviral medication for patients with H.I.V.

In a statement to ProPublica, Harvard Pilgrim said it charges more for some generics because they are more expensive. The cheapest generics carry a $5 co-payment for a 30-day supply. More expensive generics range from $10 to $25, or 20 percent of the cost for a 30-day supply. The health plan said its members pay less for their medications than the industry average.

Blue Cross and Blue Shield of Illinois said that its preferred generics had no co-payment at all, and that non-preferred generics cost $10. “We historically only had one tier of generic drugs at a $10 co-pay,” the spokeswoman Mary Ann Schultz said in an email.

The Blue Cross Blue Shield of Michigan spokeswoman Helen Stojic said the editorial looked only at its drug plan for Medicare patients, which the government closely regulates. Under Medicare, patients can appeal a drug’s tier and seek to pay a lower co-payment, she said.

Geisinger did not respond to questions.

Health plans that participate in Medicare’s prescription drug program, known as Part D, have been moving rapidly to create two tiers of generic drugs. This year, about three-quarters of plans had them, according to an article co-written by Jack Hoadley, a health policy analyst at Georgetown University’s Health Policy Institute. The practical effect of such arrangements probably varies based on the difference in cost, he said.

Dan Mendelson, chief executive of Avalere Health, a consulting firm, has studied the way in which health insurers structure their benefits. He said the increasing number of drug tiers in some plans was confusing for patients.

“Consumers often don’t understand which drugs are where,” he said. “They don’t understand the purpose of tiering. They just get to the pharmacy counter and it gets done to them.”