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Checking In

Worried emails come in whenever I’m quiet for long, so here’s a brief update. My mood is pretty good and my migraines have been a bit better (though I have an ugly one right now). Wellbutrin is still making me dizzy when I work on the computer, so I’m not writing much. I’ve chugged a Tolerex with breakfast the last two days, which seems to have kept the dizziness at bay. My fingers are crossed that I’ll be fully functional again soon.

I’m now 38 and had a lovely, low-migraine birthday (though Hart had a migraine that day!). I decided to indulge in dinner out and homemade yellow cake with buttercream frosting. A migraine followed, but it was mild and worth it.

If you’re looking for new writing from me, Migraine.com is a good place to check. They have a backlog of articles from me that they publish as needed and usually post one new one from me each week. Here are some recently published posts:

I apologize for letting your comments languish; I hope to reply this week. And I hope to get at least one new post up this week. I hope you’re doing as well as possible!

 

 

 

 

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I’m Out of Cope Due to Depression

After posting Food and Migraine Frustrations: I’m All Out of Cope, I finally looked at all the pieces that were frustrating me (and how I was overreacting to everything and felt helpless) and realized they added up to depression. I was still waffling until the day I woke up and didn’t want to get out of bed. Then I knew it was time to increase my Wellbutrin.

I started feeling better almost immediately. It’s highly unlikely that the Wellbutrin made such a difference so fast, but recognizing what was happening and taking steps to change it was a big relief. I’m also seeing some improvement in my diet and pinpointing the foods (and possibly a supplement) that have been problematic. And one day out of every four is (usually) trigger-free.

Unfortunately, I’m not getting enough calories to support 300 mg of Wellbutrin without side effects. Like happened when I was on Tolerex in December, I get dizzy looking down or working at the computer. Once again, it’s keeping me from working much.

I’m still frustrated, but no longer feel helpless or overwhelmed. I’m taking each hour as it comes and trusting I’ll figure this out eventually. (That sounds so trite, but it’s totally true.) I’m not sure what “this” looks like, how long it will take or how many migraines a week (or day) it will mean. And that’s OK.

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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.”

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Food and Migraine Frustrations: I’m All Out of Cope

I’m glad I published Full of Hope About the Future of Migraine Treatment Wednesday because my hope has been stretched thin every day since then. The DAO is still working great, but I keep developing reactions (read: migraines) to foods that were once OK. If I could still take DAO eat the same 10 foods I ate this spring, I have no doubt I’d still be feeling great. But now over half of those are migraine triggers.

I’m definitely doing better than I was pre-DAO, especially on days 3 and 4 of the rotation diet, but I’m still having at least one migraine, usually two or three, every day.  Beyond frustration with having more migraines, I want to know why in the world my body thinks a migraine is the appropriate reaction to most foods I consume — and why something can be OK for months, then becomes a migraine trigger every single time i eat it after that.

I’m not looking suggestions in writing this post, I just need to vent. I’m in the process of scheduling with my dietician, though I expect more speculation and dietary experiments rather than answers. I’m frustrated and exhausted and so sick of not being able to eat normal food. And really not happy to once again be considering Tolerex for some portion of my calories/nutrition because I know I’d feel great if I just didn’t eat.

I’m trying to cope and not doing so very successfully. I apologize for still not getting to blog comments following my time off. I will as soon as I have a little cope to spare.

(“All out of cope” is a phrase I stole from Hart. Isn’t it great?)

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Full of Hope About the Future of Migraine Treatment

I just left my headache specialist’s office and have more hope for the future of migraine treatment than I have ever had – not just for myself, but for all of us. There are exciting treatments on the horizon, like transcranial magnetic stimulation, vagus nerve stimulation and monoclonal antibodies (the CGRP drugs), but most of my hope comes from something my headache specialist mentioned offhand at the end of my appointment: Neurologists worldwide are becoming increasingly interested in treating migraine.

That’s right, there is growing interest among neurologists throughout the world who want to treat patients with migraine. My headache specialist described general neurologists who have spent their careers treating a wide variety of neurological disorders other than migraine who are now seeing migraineurs as half their patients. The switch is partly because of those exciting treatments I mentioned above as well as Botox and Topamax.

It got me thinking. Maybe a reason there have been so few doctors treating migraine and headache is because there haven’t been very good treatments. If you were in medical school and choosing a specialty, would you want to enter a field where you had to tell so many patients, “Sorry, I can’t help you,” while also knowing there were few treatments in development and next to no research funding to investigate the physiological mechanisms of the disorder? Beyond those with a personal interest, I expect most people choosing that work would have to thrive on challenge.

Thankfully, some people fit that bill. They’re the doctors I have relied on so heavily. They’re the ones who have brought the field to a place where the future is beginning to brighten. It isn’t perfect, of course, and much work remains. Migraine research continues to be underfunded and treatments options are relatively sparse, even with the new ones in the pipeline, which could fizzle out before they get to patients.

Still, I like how the pieces add up:

the research that’s in progress
+
genetic discoveries about migraine
+
an increase in academic headache centers in the U.S.
+
more doctors knowledgeable enough to treat migraine patients successfully
+
fundraising for research
+
awareness-raising
=
hope many more migraine patients will find relief in the near future

And I hope that an increased interest in migraine means more attention for all headache disorders. Migraineurs may be the majority, but we’re not the only ones who know what it’s like to have our lives turned upside down by a poorly understood illness with limited treatment options. In fact, we’re better off on those fronts than people with many other headache disorders.