By

$8 Million Migraine Research Gift: A Thank You to Wendy & Leonard Goldberg

Dear Mr. and Mrs. Goldberg,

As I learned of your generous migraine_hopegift to UCLA for migraine research, I was so overjoyed and overwhelmed that I couldn’t stop crying. The news is exciting for me personally, but the tears were not only for me. They were for all the amazing people who have endured enormous pain and sorrow because of this disease. In UCLA’s press release, Dr. Charles said, “Migraine is generally under-recognized as a major medical problem, in part because it is not fatal. But it is not hyperbole to say that it can ruin lives.” He is so right.

In December 2009, years of constant, ever-worsening pain, nausea, fatigue, and cognitive dysfunction nearly devoured my last glimmers of hope. I went to bed each night wondering if I would survive the next day. I later learned that my husband had the nearest in-patient psychiatric clinic programmed into his phone and came home for lunch to make sure I hadn’t attempted to take my life. His unwavering support, a team of great doctors, and amazing family and friends got me through those bleak, hopeless days.

I am extremely fortunate. So many people I hear from as a patient advocate are lacking social support, financial resources, and access to health care providers who understand migraine. The stories are heartbreaking—lost marriages, estranged children, opiate addiction, poverty, homelessness, suicide. Living with any chronic illness is difficult. When the disease is poorly understood and heavily stigmatized, as migraine is, it can render a person’s life, and even self, unrecognizable.

Upon hearing of your donation, I shed tears of joy for my own future, of course, but mostly I cried for the millions of people whose lives are in turmoil because of migraine. Your donation will fund research that could ultimately give millions of people relief and reduce the stigma of migraine. The magnitude of your generosity cannot be overstated, but you’ve also done something that, to me, is even more remarkable. You have given hope to people who struggle desperately to see beyond a life dominated by disabling migraine attacks. You have given us the invaluable gift of a glimpse of a better future.

Thank you. Thank you so very much.

Sincerely,
Kerrie Smyres

Readers: Many of you have expressed a desire to thank Mr. and Mrs. Goldberg yourself. You may leave your comments below and I will pass them along. Also note the correction that the gift was $8 million for migraine research.

By

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.

By

Transcranial Magnetic Stimulation for Migraine: Spring TMS Study

SpringTMSAre you eager to get your hands on a transcranial magnetic stimulator to treat migraine? The Spring TMS, which received FDA approval last May, won’t be available to patients until the completion of a post-approval study to determine how to use the Spring TMS most effectively. And the study can’t be completed until more participants are recruited. You can try the Spring TMS for free and help bring it closer to availability to others by participating in the study.

The study is being conducted at six locations throughout the United States, but the exact locations are not listed on ClinicalTrials.gov. If you’re able to travel, it might be possible to participate even if you don’t live in one of those locations. If you’re interested in participating, take a look at eNeura SpringTMS Post-Market Observational US Study of Migraine (ESPOUSE) for details and criteria for participation. If you’re still interested, contact Cynthia Harris at (775) 392-2970 or cindy@clinregconsult.com with your questions and to get location details.

By

Dietary Supplements: Does the Bottle Contain What the Label Says?

Do store brands of dietary supplements contain the ingredients the labels claim?, asked scientists from The New York attorney general’s office. In analysis of supplements from Walmart, Target, GNC, and Walgreens, they found that only 21% of the supplements did contain the ingredients listed and that “most” contained ingredients not included on the label. The resulting response has included furor over the attorney general’s testing methods as well as people claiming that these results support what they knew all along. Amid all the outrage, some interesting points have caught my eye. Here’s what I found most interesting:

How Not to Test a Dietary Supplement in The New Yorker examines whether DNA barcode testing is an accurate way to assess the ingredients of supplements. (Tammy Rome, an herbalist and writer for Migraine.com, argues that it is not.)

Your Vitamins May Be Lying to You: Why Big Herba is Out of Control, in Salon, carries important information far beyond the sensational headline: “The very same mega-companies with gigantic chemical labs that make drugs are cooking up vitamin and herbal supplements labeled with sunny terms like ‘natural’ and ‘wholesome.’ Pfizer, Unilever, Novartis, GlaxoSmithKline and other big pharmaceutical firms make or sell supplements. Procter & Gamble Co. and Arm & Hammer are also in on the action. Wall Street is getting in on the game, too: the Carlyle Group, a private-equity titan, owns NBTY (formerly Nature’s Bounty), whose brands include Nature’s Bounty, Sundown Naturals, Puritan’s Pride, and Vitamin World.”

People take herbs and supplements for a variety of reasons, only one of which is distrust of the pharmaceutical industry. Still, if that’s important to you, then you’ll want to do careful research to find out if you’re supporting Big Pharma when purchasing supplements. Other people will seek out supplements sold by pharmaceutical companies, assuming that they have more rigorous scientific and safety standards than smaller, less known companies.

In Be Careful Where You Buy Your Herbal Products!, headache specialist Alexander Mauskop, M.D., discusses the supplements he recommends and says that his preferred brand is Nature’s Way.

As so often happens, I’m left with no answers, just more questions. First, what about non-store brands? Does Nature’s Way, for example, contain the DNA of the listed ingredients? If so, it supports the idea that store brands could be lacking, though even that raises additional questions. If not, we’re still left to wonder if the testing methods were inaccurate or if all supplements or bogus or something in between. Also, if the pharmaceutical industry plays a large role in the supplement industry, does that make supplements more or less reliable, or does it make no difference? From my reading today, it appears that how you answer that question depends on your beliefs about Big Pharma. Finally, does this even matter? Will it change consumers’ purchasing behaviors? Will it just increase the divide between those who think supplements are the best and those who believe they’re hogwash? Will people become even more invested in their existing opinions, as studies have found happens when people who are anti-vaccination are shown pictures of children with the disease they aren’t vaccinating for?

What’s your reaction to the news? Will it change the way you think about supplements or where you buy them?

By

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: