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Setting My Skepticism Aside

Several of you have sleuthed out which doctor I saw last week and, upon reading her website, have asked (kindly) why in the world I even saw her. “Quack” is the word that comes to mind looking at her site — her version of science is hogwash and her treatment practices are over-the-top woo. The appointment proved that she is indeed a quack.

Why is someone who understands and appreciates science, dislikes quackery, and has solid critical thinking skills seeing a doctor like this? It’s really quite simple: I want to feel better and current medical science isn’t moving quickly enough for me. If this doctor had given me even one piece of helpful information (and her credentials indicated she could), the visit would have been worth the money spent.

This is odd an odd place to be. I have the utmost respect for Western medicine and appreciate that diagnoses and treatments are well grounded in science. Pursuing treatment that has little or no empirical evidence to support it goes against my inclination. However. The most improvement I’ve had has come from a treatment that’s untested and unproven for a diagnosis that’s outside mainstream medicine.

I continue to set aside my skepticism (as long as I don’t believe a treatment to be harmful) because Western medicine hasn’t yet been able to help me much. I haven’t given up on allopathic medicine, but I’m also not sitting around waiting for it to catch up to my needs. If I had, I wouldn’t have felt better in the last nine months than I did in more than a decade.

My ability to function is more important than money or having my beliefs called into question by finding a treatment that goes against the grain. I won’t bankrupt myself for a treatment and I won’t try anything I deem potentially harmful or total bull. I evaluate every provider I see with logic and reason and, if I have to stretch my boundaries a bit sometimes, that’s OK. Time out of bed is the most precious commodity I have and I will always seek to increase it. This is my life.

(Since some of you have asked: I didn’t do any of the tests and will not be seeing this doctor ever again.)

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So-Called “Patient-Centered” M.D. & the Worst Medical Appointment of My Life

Having such severe and varied symptoms as I have had for so many years means I’ve seen A LOT of doctors. Most have been compassionate, knowledgeable and kind, with a few appalling exceptions. Yesterday’s was far worse one ever. Ironic, given that this is the first M.D. I’ve seen who specializes in functional medicine, a patient-centered approach that considers the whole person by spending time with and listening to the patient, according to the Institute of Functional Medicine.

Sounds great, right? Except that she seemed to have missed the memo. She explained that has an M.D. and practiced as a gastroenterologist for 30 years, but got into to functional medicine to consider the physical, psychological and spiritual aspects of patients, including their “roots and soil.” She then interrupted me non-stop and got aggressive and angry. A handful of examples:

  • She’d ask questions then cut into my response almost immediately to explain why what I was telling her (about my own life and experience) was wrong or inaccurate.
  • When I misunderstood a question, she let me answer for a minute, then barked, “That’s not what I asked.”
  • I tried to clarify a statement. She cut me off and said my response “didn’t matter.”
  • She told me she would not call what I have migraine, that I have headaches. (I’m not too picky about whether the attacks are called migraines or headaches, since that’s the terminology that specialists and researchers use, but I’ve never had someone refuse to acknowledge migraine at all.)
  • The dietary discussions were all either her saying, “Really????” when I mentioned a trigger or telling me I had to stop eating something and that I should try the alternatives. I’d list all the alternatives that have been triggers and she’d say, “Really????” There was no input, no guidance, no connections, just disbelief.
  • She was 70 minutes late to start the appointment. At the end, she handed me off to the person who could give me prices for tests and told her, “These are the tests I want ordered. There’s no dietary plan or supplements because she’s too sensitive.” Then she left. No “It was nice to meet you” or “We’ll try to figure this out” or even “Thank you.”

As galling as all those examples are, it gets way worse.

The main assessment: I have migraine because of a psychological block from my childhood and I need to do some deep emotional work. When I mentioned the great work I’ve done with my therapist in the last year, she said that if my therapist were going deep enough, my migraine frequency would have declined. (That’s the only time she said migraine instead of headache.) The solution? To journal at home. With my non-dominant hand.

She pleasantly explained that she’d read all the ingredients in a supplement aloud and I should tell her if I’d reacted to anything that was in it. She got through one list and, when I said quercetin had triggered migraine attacks in the past, she said, “If you can’t take this [supplement], then I have no idea what I can do for you.” Later, she sighed and said, reluctantly, “We’ll see what we can do for you.”

Then she told me about the tests that she’d need to do to figure out what was wrong with me. Although the office doesn’t take insurance, she asked what my health insurance company is. “That’s terrible,” she said. “If you’d had X or X, they’d reimburse for these tests, but your company doesn’t.” Then she said that the most helpful test she wanted to do was $2,000, but she wouldn’t order it because of the cost. The other tests she wanted me to do totaled $2,228.63. I’ve looked into the recommended tests. They all claim to gather tons and tons of seemingly useful data (a seductive prospect for someone who is trying to make connections to improve their health) that has absolutely no solid utility.

Hart’s take: She’s a fraud who preys on sick and desperate people. When I arrived with 10 years of records from impressive medical centers and a detailed dietary analysis and used medical terminology with ease, she knew she couldn’t pull the wool over my eyes. She was aggressive and accusatory to show me that she couldn’t help me through no fault of her own, but because I was in the wrong.

I agree with his perspective. I was already suspicious of the office’s financial set up. According to their website, they don’t accept insurance because “we prefer to have a direct relationship with our patients and to give them the opportunity to make the final decision as to which treatments are most beneficial for them.” Some perfectly reputable health care providers don’t take insurance, so that alone isn’t a red flag. Right before the appointment, I learned they charge for medication refills through a pharmacy. Afterward, I discovered that every test they do has an added service charge of $40-60 and another $40 if shipping is involved.

I know enough about migraine, medicine and my own body to know this doctor was mistreating me to save face. I was able to get angry and not be heartbroken by having an “expert” tell me there was little hope for me. If this had happened 10 years ago, I would have been devastated. I would have believed that I would never be able to find relief from migraine, not that the doctor was blaming me for her shortcomings.

That’s what I’m angriest about. I saw through her bullying, but what about the people who do arrive in her office doe-eyed and terrified? Either she takes them in for thousands of dollars of tests, supplements and follow-up appointments or they leave believing they’re a hopeless cause. How is that patient-centered? How is it in the best interest of anyone or anything other than the doctor’s bank account?

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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.”