“Turning the Tide” on HIV/AIDS

In advance of the upcoming XIX International AIDS Conference, the International AIDS Society and the University of California, San Francisco, have issued the “Washington D.C. Declaration,” a nine-point action plan aimed at broadening global support for “Turning the Tide” of the AIDS epidemic.

Everyone is urged to sign the Declaration.

It calls for:

1) An increase in targeted new investments;
2) Evidence-based HIV prevention, treatment, and care in accord with the human rights of those at greatest risk and in greatest need;
3) An end to stigma, discrimination, legal sanctions, and human rights abuses against those living with and at risk for HIV;
4) Marked increases in HIV testing, counseling, and linkages to services;
5) Treatment for all pregnant and nursing women living with HIV and an end to perinatal transmission;
6) Expanded access to antiretroviral treatment for all in need;
7) Identification, diagnosis, and treatment of tuberculosis;
8) Accelerated research on new tools for HIV prevention, treatment, vaccines, and a cure;
9) Mobilization and meaningful involvement of affected communities.

Turning the Tide is the theme of this year’s biennial conference, which will take place July 22-27 in Washington.  It is expected to draw 25,000 attendees, including HIV professionals, activists, politicians, and celebrities. Sir Elton John will open the conference and Bill Clinton will close it. A large delegation of U.S. members of Congress will participate, and Bill Gates will moderate a session. An enormous “Global Village” outside the D.C. Convention Center will be open to the public. “If you haven’t been, it’s a conference like no other,” conference cochair Dr. Diane V. Havlir said at a press briefing.

The recent optimism regarding HIV/AIDS stems from major advances in knowledge regarding prevention of partner transmission with early patient treatment, pre-exposure prophylaxis, and male circumcision as HIV infection prevention (new data will be released at the meeting), all of which are viewed as breakthroughs  in the fight against HIV/AIDS. “So we have now in our hands the tools. The question is how do we combine those tools together, and how do we roll them out,” said Dr. Havlir, professor of medicine at the University of California, San Francisco, and chief of the HIV/AIDS division at San Francisco General Hospital.

Dr. Diane V. Havlir / Photo by Miriam E. Tucker

Monday’s plenary session will include an address from Dr. Anthony Fauci, head of the National Institute of Allergy and Infectious Diseases, on “Ending the HIV Epidemic: From Scientific Advances to Public Health Implementation.” Other plenary topics during the week will include viral eradication, vaccines, TB and HIV, and HIV/AIDS in specific populations including minorities, women, youth, and men who have sex with men. On Friday, there will be a plenary talk that may be of particular interest to the primary care community, “The Intersection of Noncommunicable Diseases and Aging in HIV.”

Plenaries and other conference sessions will be webcast at http://globalhealth.kff.org/aids2012.

-Miriam E. Tucker (@MiriamETucker on Twitter)

Teens with Eating Disorders Try Yoga

If the thought of yoga doesn’t bring to mind long-haired, half-naked gurus in India, it probably makes you think of thin young people in pretzel poses. True that, but it’s also become popular among populations that you might not expect. Yoga increasingly is being incorporated into treatment programs for young people who may be too thin or too fat – adolescents with eating disorders.

Yoginis relax and stretch. (Courtesy Wikimedia Commons/zivpu/Creative Commons License)

Dr. Cora C. Breuner helped conduct a study of 50 girls and 4 boys with diagnosed eating disorders. Participants were randomized to treatment with standard care (every-other-week appointments with physicians or dieticians) or standard care plus individualized yoga for 12 weeks. The yoga group showed significantly reduced food preoccupation immediately after each yoga session and significantly decreased Eating Disorder Examination scores at 12 weeks (J. Adolesc. Health;2010;46:346-51).

Speaking at the annual meeting of the North Pacific Pediatric Society, she gave a brief update: the teens in the yoga group showed greater improvements in weight a year after the study ended compared with the control group.

Dr. Cora C. Breuner (Sherry Boschert/IMNG Medical Media)

“Pretty much every eating disorders unit in the country now has yoga,” said Dr. Breuner, professor of pediatrics at the University of Washington, Seattle.

I don’t know about every eating disorders program, but a quick look on the Web found plenty that include yoga and lots of independent yoga classes geared toward people with eating disorders. On this list of eating disorder treatment programs from EDreferral.com, for example, yoga is mentioned by nine facilities in California and one each in Arizona, Hawaii, Mississippi, New Jersey, Pennsylvania, Tennessee, and Virginia. I found others online in Michigan and Washington, too, with just a few clicks.

Dr. Breuner’s 2010 study isn’t the only one endorsing yoga for eating disorders. Here’s another (Psychology of Women Quarterly 2005;29:207-19). Columbia University reported on this trend in 2007. And the Wall Street Journal reported in 2011 on increasing use of yoga not only for kids with disorders but for healthy students, under the clever headline, “Namaste. Now Nap Time.”

Some of the key goals of yoga are to strengthen the mind and body and the connection between the two. It’s not a solo treatment for eating disorders, but it supplements the standard strategies of weight stabilization, nutrition therapy, cognitive behavioral therapy, and family-based therapy.

That last one is another big change in the field that has happened since Stanford University researchers began showing in 2007 that it’s very helpful in treating children and adolescents to use parents as agents for positive change in a non-judgmental manner.

“Now we bring parents in right away to help with refeeding the child,” Dr. Breuner said.

It’s only a matter of time, I suspect, until we see special yoga classes for parents of children with eating disorders.

–Sherry Boschert (on Twitter @sherryboschert)

Teen Cruelty Not Always Bullying

Concern about bullying has increased exponentially in recent years, but it’s possible that we may be overreacting, Laura S. Kastner, Ph.D. suggested at the annual meeting of the North Pacific Pediatric Society.

(Courtesy Wikimedia Commons/Eddie~S/Creative Commons License)

Media coverage of suicides by teenagers (especially lesbian, gay, bisexual, or transgender teens) who were bullied at school sparked the It Gets Better Project in late 2010. It Gets Better videos, with positive messages from adults who made it through their own tough teen years, went viral and have been seen by many millions of people. 

The New York Times review of the 2012 movie “Bully” says it’s not just about the families profiled in the film but also about the “emergence of a movement.” Controversy around the film’s rating garnered lots of press coverage and publicity.

So, awareness of bullying is definitely up. That’s good, Dr. Kastner said, but it also means that people have started applying the label of bullying to behavior that doesn’t fit the bill. “I get called about bullying a lot,” said Dr. Kastner, clinical associate professor of psychiatry and behavioral sciences at the University of Washington, Seattle.

“Bullying is a little like sexual abuse was 25 years ago,” she said. “It’s great to have heightened awareness, but then people start throwing around words for a whole continuum, and then it gets muddy.” When increased awareness of the prevalence of sexual abuse led to teaching about inappropriate touching and related topics, some parents were asked by their children during bath time if this was sexual abuse, she recalled.

She defined bullying as a pattern of tormenting with a power differential between the bully and the bullied. It’s not a one-off occurrence of cruelty, though there are plenty of those in the adolescent years.

Evolutionary psychologists describe how peer status seems to be one of the most universal dynamics seen across cultures and time, she said. “There was something adaptive about jockeying for peer position in your tribe.” One implication of that is that adolescents have a biologically-based hypersensitivity to peer relations and rejection.

Laura S. Kastner, Ph.D. (Sherry Boschert/IMNG Medical Media)

“Social cruelty is normal and it exists on a continuum,” Dr. Kastner said. “It’s helpful that we talk about the concept of a continuum, so it’s not an either/or and oversimplifying this.”

When an adolescent encounters an act of social exclusion, or rumoring, or physical cruelty, depending on the situation and the teen’s sensitivity this could go down as one of the worst things that happened to them in their childhood. But was it bullying?

“Details, details, details” – that’s what the parent or physician needs to make a good assessment, she said.

Bullying seems to be common. Approximately 20%-30% of teens report that they have been bullied, she said. Fifty-three percent of students report seeing bullying at lease once a week, the National Crime Prevention Council reports on its Bullying Prevention page.

Attention has increased not only on the bullied but on bullies. One study found that suicidal adolescents who also were bullies had a heightened prevalence of substance use and functional impairment.

Dr. Kastner recommended resources from the National Crime Prevention Council for physicians who want to help families understand and address bullying. The Council also offers resources specifically for cyberbullying.

The key is for parents to talk about all these things with their teenager not once, but many times. “It’s like sex education – good, but don’t make it a one-time thing,” she said. “Make it a continuing conversation with context, a dialogue. Don’t overreact. Make it interesting. Be responsive. Be a good listener. Keep weaving in new information, new hypotheticals,” because a one-off conversation “is probably not going to do much.”

–Sherry Boschert (@sherryboschert on Twitter)

Real World Full of Medical Ethics Challenges

There’s the ideal world, and then there’s the real world. Humans have a wonderful hubris in forever trying to get the twain to meet, and a necessary humility in examining ways that they don’t. That’s as true in medicine as anywhere else.

The Charter on Medical Professionalism, endorsed by the U.S. Accreditation Council on Graduate Medical Education and more than 130 professional groups worldwide, contains three fundamental principles: the primacy of patient welfare; respect for patient autonomy, and promotion of social justice. Who wouldn’t want that? A physician’s professional responsibility as spelled out in the charter entails honesty (including disclosure of medical error), patient confidentiality, maintaining trust by managing conflicts of interest, and much more.

Ben A. Rich, J.D., Ph.D. (SHERRY BOSCHERT/IMNG Medical Media)

Yet, more than 10% of 1,891 practicing U.S. physicians surveyed recently in seven specialities said that they had told adult patients or a minor’s parent or guardian something that was not true, Ben A. Rich, J.D., Ph.D. noted during a session on ethics at the annual meeting of the American Academy of Pain Medicine.

Results of the survey of physicians in internal medicine, family practice, pediatrics, cardiology, general surgery, psychiatry, and anesthesiology also showed that 20% of physicians had not fully disclosed mistakes to patients out of fear of malpractice litigation.

More than 33% said they do not agree that physicians necessarily must disclose all serious medical errors to affected patients, or that it’s important to disclose to patients any financial relationships with drug and device manufacturers (Health Affairs 2012;31:383-391).

More than 25% of the physicians said they had revealed unauthorized information about a patient. More than 50% had described a prognosis to a patient more positively than the clinical facts warranted.

Women were more likely than men to practice consistently within the Charter on Medical Professionalism, as were physicians from racial and ethnic minorities, the survey found.

It’s comforting to note that a majority of physicians seem to adhere to the professional principles, and perhaps we shouldn’t be too hard on those who admit their actions sometimes diverge from the ideals, said Dr. Rich, professor of medicine and director of the Bioethics Program at the University of California, Davis. The “messy facts” of real cases show the challenges that physicians face in trying to help patients while also respecting their autonomy while also being honest, etc.

One example: A published case of a 45-year-old licensed practical nurse whose license had been suspended due to her medical problems. She was being treated for migraine headaches by a psychiatric neurologist and was on gabapentin, topirimate, propranolol for prophylaxis, oxycodone for breakthrough headaches, and IM injections of meperidine and hydroxyzine for breakthrough pain. She signed a contract with her physician saying she would only take narcotic medications that he prescribed and would not seek painkillers from emergency departments (Nursing Journal 2007;29:35-40).

“She violated that contract repeatedly and with impunity and was becoming a `frequent flyer’ in the local E.D.s.,” Dr. Rich said. Her physician persuaded her to get inpatient treatment, but afterward she relapsed and continued E.D.-hopping in pursuit of pain meds. One local E.D. suggested to her physician that he be notified whenever she turned up in an E.D. Her physician suggested instead that the E.D. do what he had resorted to doing — injecting her with saline and telling her it’s meperidine.

Some E.D. physicians gave her medications just to get her out the door. Others refused to give her any narcotics for her pain because of her addiction and violations of her contract. All the healthcare providers in the medical group of one emergency department signed a letter to the patient telling her that if she came there for treatment, she would be evaluated and treated with non-narcotic medications recommended by her treating neurologist but she would no longer be given narcotics.

Which, if any, of these approaches pass ethical scrutiny? What would you do if you were her neurologist or saw her in pain in the emergency department?

The group that sent her a joint letter was “at least trying a collaborative approach and putting her on notice about how she would be treated if she continued to present there,” Dr. Rich said.

The lengthy Ethics Charter of the American Academy of Pain Medicine lists many physician duties, including this “intriguing” one, he noted: Any reports to law enforcement of attempts to acquire pain medications illegally should be based on confirmed firsthand information.

“Some of my colleagues at UC Davis are working on a manuscript right now where we’re finding it’s not as clear as one might hope” when deciding whether you have a duty to report a patient to law enforcement or a duty not to report to law enforcement because reporting the patient may infringe upon patient confidentially, not to mention potentially violating the Health Insurance Portability and Accountability Act (HIPAA), he said.

The messiness of real life doesn’t diminish the importance of standards, it just reinforces the need for ideals to guide us as we muddle our way through the real world.

Dr. Rich has been a consultant to KOL, L.L.C.

–Sherry Boschert (@sherryboschert on Twitter)

Can Pill Color Prompt a “Nocebo” Response?

What’s the opposite of a placebo? An active drug, of course. But what’s the opposite of a placebo response? That would be a “nocebo” response, in which placebos produce adverse side effects.

 

“It’s somewhat hypothetical, but you can imagine that if somebody feels they will get better, they will get better, and if they feel that they’re taking something that’s not good for them, they might get worse,” according to Dr. Allan Krumholz, professor of neurology and director of the Maryland Epilepsy Center, Baltimore.

Image courtesy of Dr. Tricia Y. Ting

Pill color and appearance have been identified as a potential source of “nocebo” response, and differences in appearance between brand-name and generic drugs have been postulated to explain why some patients experience increased adverse events when they switch from brand-name to generics.

In response to this growing concern, in August 2010 the Food and Drug Administration solicited proposals for bioequivalence studies of the impact of switching from brand-name antiepileptic drug lamotrigine (Lamictal) to generic among patients with epilepsy in the outpatient setting.

This is a new way of conducting such trials. “Pharmacokinetics trials across all areas of medicine have traditionally been highly controlled single-dose studies in healthy volunteers dosed in the laboratory setting,” said lead investigator Dr. Tricia Y. Ting, a neurologist who works with Dr. Krumholz at the UMD epilepsy center.

Because the brand-name Lamictal and its generic counterparts look very different, the investigators decided to over-encapsulate the pills with identical coverings in order to “blind” the patients to which formulation they were taking.

But in order to do that, they first needed to determine whether the color of the pill would impact the patients’ perception of safety and efficacy. A group of 80 adult epilepsy patients were shown standard AA size capsules in five “global colors” (white, yellow, gray, caramel, maroon) and asked to select any color(s) considered “unacceptable” and to rank their preferences.

More patients deemed gray, caramel and maroon colors “unacceptable” (21%, 19%, and 20%, respectively) compared with the white and yellow (5% and 4%, respectively). There was a clear preference for white and yellow pills over the other, darker colors, without much difference between white and yellow.

But, there were patients who selected maroon as their “preferred” color. “Some people didn’t have any preference. Some had a very strong preference. One patient, an artist, liked the darker colors. It was different for different people,” noted Dr. Karen M. Aquino, a neurology fellow who worked on the nocebo study.

So what pill color will the bioequivalence study use? “To optimize drug adherence, white colored capsules will be used for over-encapsulation,” Dr. Ting wrote in her poster, which was presented at the American Epilepsy Society’s annual meeting in Baltimore. Dr. Krumholz and Dr. Aquino presented the pill color preference data in a separate poster at the meeting. The bioequivalence results are expected in 2013.

-Miriam E. Tucker (@MiriamETucker on Twitter)

A Win For Big Tobacco

A federal judge has just handed the tobacco industry one of its more salient victories in recent years, having decided that the Food and Drug Administration’s plan to require graphic warnings on cigarette packs violated the manufacturers’ right to free speech.

Image of proposed warning courtesy the Food and Drug Adminstration

Richard J. Leon of the U.S. District Court for the District of Columbia issued an order that prohibits the FDA from moving ahead until at least 15 months after he has rendered a final decision.

It’s a firm rebuke to the agency, which had trumpeted the warnings as a crucial means of dissuading Americans from smoking.  In June, the FDA shared nine cigarette package prototypes and issued a final rule that ordered manufacturers to comply with the new packaging by Sept. 2012.

A few months later, R.J. Reynolds Tobacco Co., Lorillard Tobacco Co., Commonwealth Brands, Liggett Group, and Santa Fe Natural Tobacco Co. sued the agency. And it’s not just big tobacco that is fighting the regulation. Tobacco marketing is big business.

Not surprisingly, the Association of National Advertisers and the American Advertising Federation filed a friend of the court brief in September.  The brief excoriated the government for overreaching.  And, the advertising groups likened the effort to a thinly-veiled propaganda attempt.

“If the government can deputize tobacco companies through their product packaging and advertisements to deliver its message, there is no reason it could not do so for other things — and history shows it will not hesitate to do so,” said the brief.

Judge Leon was persuaded, at least in some way, to weigh these First Amendment arguments. According to the New York Times, in his 29-page opinion (which has not been made available online yet), he lambasted the government’s “obvious anti-smoking agenda!”

But activists and others who fought for many years to find a way to regulate tobacco expressed dismay over his stay.

Rep. Henry Waxman (D-Calif.) called the Judge’s ruling “extremely regrettable.” He says that Congress already worked out all the First Amendment issues “to ensure the FDA could act as it has proposed….”

Sen. Tom Harkin (D-Iowa), who in 1998 introduced the first bill to give FDA the power to regulate tobacco products, said that graphic warnings were necessary. “This decision must be appealed so that implementation of the warning label requirement can go forward without delay,” he said, in a statement.

In January, a U.S. District Court Judge in Kentucky upheld FDA’s authority to require warnings in a similar lawsuit. That case is now on appeal.

It may now be years before the legal wrangling is settled.

—Alicia Ault (on Twitter @aliciaault)

Attacking Obesity

The diversity of disciplines represented at the annual meeting of The Obesity Society parallels the reach of the obesity epidemic itself.

Primary care physicians, endocrinologists, pharmacologists, bariatric surgeons, psychiatrists, psychologists, social workers, educators, nutritionists, and food service workers have spent the past five days in Orlando, Fla., wrestling the obesity beast, trying to shed light on why it is so intractable and discussing interventions that may tame it. Following are a few observations from the meeting:

Courtesy of the Rudd Center for Food Policy & Obesity

1. Although obesity in the United States is being attacked full-force from all sides with drugs, surgery, and psychosocial and behavioral interventions, its prevalence is expected to continue to climb as those born in the 1980s (when the obesity epidemic began) age into their “prime years of obesity incidence,” according to data presented by Whitney Robinson, Ph.D. of the University of North Carolina at Chapel Hill. Dr. Robinson and colleagues used height and weight data measured from 1971-2008 in the National Health and Nutrition Examination Survey (NHANES) to quantify cohort effects as a way to estimate obesity trends. They determined that cohorts born in the 1980s had significantly increased obesity risk versus those born in the late 1960s. The cohort effects, which are those not attributable to the additive effects of age and period, for the 1979-1983 and the 1984-1988 birth cohorts relative to the late 1960s cohort were 1.18 and 1.21, respectively.

Although it is well understood that period effects representing widespread environmental influences have driven increases in obesity prevalence, Dr. Robinson reported, “obesity in adults born in the 1980s shows positive cohort effects as well.”  This finding suggests that even if the obesigenic environment stabilizes, obesity prevalence could continue to increase, particularly in the absence of widespread environmental change.

2. Technology is becoming an ubiquitous weapon in the obesity armamentarium, as evidenced by the many presentations focusing on computer-, Internet- and even smart phone-based strategies. For example, in one late-breaking presentation, Kelly H. Webber, Ph.D. and Dr. Stephanie A. Rose of the University of Kentucky, Lexington, described a pilot study comparing the impact of an Internet behavioral weight loss program alone and in combination with portion-controlled food provision. The study demonstrated that the short-term effect of the combination approach was particularly beneficial.

Similarly, Melissa A. Napolitano, Ph.D. of Temple University in Philadelphia presented a pilot trial of a virtual reality-based psycho-educational intervention for modeling weight loss skills. The findings demonstrated short-term success, with outcomes approximating those found in conventional behavioral weight loss programs.

Finally, a comprehensive evaluation of available iPhone apps for weight loss, presented by Penny Deck, a Ph.D. student at Simon Fraser University, demonstrated the considerable variation in the degree to which the applications follow evidence-based recommendations for weight loss. In particular, she noted, “most of the apps demonstrated poor adherence to such recommendations as basing goals on behaviors vs. weight and advocating small sustainable changes.”

All of the technology interventions are still too young to have long-term outcomes data. It is therefore too early to determine whether their short-term efficacy is a function of the interventions themselves or their novelty. In a presentation describing the apparent benefits of a church-based telemedicine weight loss intervention, Gary Foster, Ph.D., of Temple University observed that most behavioral weight loss interventions are effective in the short term, “but what we really need are long-term studies to evaluate their continued efficacy over time.”

3. Anti-obesity prejudice is pervasive in all sectors of society, including among individuals and organizations in positions of influence. In response to a query from an attendee about the FDA’s reluctance to approve amphetamines for weight loss but not for attention deficit disorder, Dr. George Bray, chief of the division of Clinical Obesity and Metabolism at Pennington Biomedical Research Center in Baton Rouge, La., attributed the double standard to the cultural perception that obesity is an aesthetic problem. “ADHD is viewed as a disease, while obesity is perceived to be a moral deficit,” he said.

The cultural stigma is perpetuated by the news media and even by medical professionals through the photographic and video portrayal of overweight people using headless body shots, primarily focusing on unflattering views of the abdomen or lower body, often in sloppy attire and eating unhealthfully, according to Dr. Arya Sharma, chair in obesity research and management at the University of Alberta in Edmonton, Canada.

To counter the prejudice, the Rudd Center for Food Policy and Obesity at Yale University and The Obesity Society have developed a document called Guidelines for the Portrayal of Obese Persons in the Media, which was available in the meeting press room. The Rudd Center also offers a gallery of more positive images that it makes available to the press.

–By Diana Mahoney

 

The Value of Sleep

Sleep is big business. People need it. They want it. They’ll spend money to get it. And, according to the bulk of presentations at the 25th annual joint meeting of the American Academy of Sleep Medicine and the Sleep Research Society in Minneapolis (SLEEP 2011) last week, the demand for it continues to far outpace the supply. Given these conditions, it’s not surprising that Americans spend nearly $24 billion on sleep-related goods and services annually, and the market for insomnia drugs is predicted to grow by nearly 80%, to approximately $3.9 billion, in 2012, according to market research conducted by Marketdata Enterprises.

Image via Flickr user deansouglass by Creative Commons License.

Evidence of the anything-but-restful sleep market was plentiful in the SLEEP 2011 exhibit hall, with booth after booth of vendors showcasing everything from pharmaceuticals and nutraceuticals to earplugs, continuous positive airway pressure devices, breathing masks, light therapy boxes, aromatherapy sprays, premium mattresses, and customized pillows. There was also row upon row of posters highlighting the latest research on the multiple and varied sleep-related problems that are keeping the vendors in business.

During a walk through the exhibit hall, however, it didn’t take long for the ironic reality of the sleep conundrum to set in. Americans are spending billions of dollars on sleep-related goods and services and researchers are spending billions of dollars seeking insight into the global sleep deficit that, according to the meeting’s scientific program presentations, is leaving children, adolescents, and adults overtired, anxious, depressed, and suboptimally functional and is putting them at risk for a range of adverse health outcomes, including cardiovascular disease, asthma, diabetes, stroke, and obesity. Yet we, as a society, don’t value sleep.

For example, in March of this year, the Centers for Disease Control and Prevention reported that nearly one third of the country’s adults get less than the minimum recommended 7 hours of sleep per night, and it’s not because they’re not tired: nearly 40% of the survey population reported unintentionally falling asleep during the day and nearly 5% reported nodding off while driving in the preceding 30 days.

Notwithstanding suboptimal sleep quality or quantity resulting from chronic sleep disorders, such as insomnia, obstructive sleep apnea, restless leg syndrome, bruxism, narcolepsy, and sleepwalking, the country’s pervasive sleepiness is often a symptom of what has become a “24-hour society,” in which there’s not enough time in a day to do everything we want to do, according to Dr. Michel Cramer Bornemann, co-director of the Minnesota Regional Sleep Disorders Center at Hennepin County Medical Center in Minneapolis. Not only have we become accustomed to trading sleep for work, he said in a session on sleep forensics, “we wear sleep deprivation as a badge of honor, as if lack of sleep is synonymous with hard work or achievement, when really it can impede both.”

Sleep is a biological imperative, Dr. Bornemann stressed. When it’s not valued as such,  “everybody pays.”

— Diana Mahoney (on Twitter @DMPM1)

Not This Life, Dear — I Have a Headache

A headache specialist's meeting doodle - is this picture worth a thousand words?

A headache is a mighty pain

That changes the defenseless brain,

It may go away.

It may come and stay.

Or rear again, again, and again.

Maybe not great poetry.

But certainly a statement – especially when we assume the author is a headache specialist.

I found this poem on a note pad left in a lecture room between sessions at the annual meeting of the American Headache Society, right after a talk on the genetics of migraine.

After a  lecture on the increased incidence of migraine in young soldiers with posttraumatic stress disorder, I found another note pad. This one depicted a stick-person, helplessly splayed across a tangled spider’s web.

Both, I think, represent the feeling of frustration that bonds headache specialists with their patients.

“We know what can turn it on, but how do we turn it off? That’s the question,” said Dr. Till Sprenger of the University of California, San Francisco. “We still don’t know.”

Headaches unremitting in the face of any treatment strategy are by no means a rarity. Medicines that benefit one may be useless to another. And drugs that can help can also hurt.

Almost anything used for a headache, from acetaminophen to opioids, can backfire if used often enough. Medication-overuse headaches are harder to treat and can start a cycle of using more and more drugs that become less and less effective. Triptans, the mainstay for many migraine patients, are most successful when used at the earliest signs of a headache. But they’re expensive, up to $32/dose, and most insurance companies impose a monthly limit. To save their pills for their worst moments, patients delay the dose, trying to figure out how bad the headache will be. The longer they wait, the less effective the medication.

The physicians at the American Headache Society know this. A number of speakers expressed frustration, not only at their inability to really help some patients but also at the still-rudimentary understanding of headache etiology – the only foundation upon which more effective treatments can grow.

The doctors at this meeting were a sympathetic lot or, perhaps more accurately, an empathetic lot. About half of the physicians I chatted with during breaks and in interviews said their own chronic headaches motivated them to specialize in treating others. They described their job as a mix of satisfaction and exasperation – because they know all too well the blessing of pain relief, the fear of impending pain, and the panic of unremitting pain.

Studies back up my very nonscientific observation of headaches among those who treat them. The most recent appeared in Headache, the American Headache Society’s own journal. It suggested that up to 40% of neurologists who treat headache suffer with their own.  Another 2010 study on migraine management noted that 48% of the  neurologists surveyed were themselves migraineurs.

While there no patients spoke at this meeting, Dr. Dawn Buse became their voice. Despite continuous evolution in headache medicine, her study showed that many continue to suffer.

“Forty percent have at least one unmet need regarding their headaches,” said Dr. Buse of the Montefiore Headache Center, New York.  The top reasons for continued problems? Dissatisfaction with current treatment. Continuing headache-related disability. Overuse of opioids or barbiturates. Other issues that presented in the survey were excessive visits to the emergency department or urgent care center and cardiovascular disorders, which can turn physicians off to the idea of a triptan-based migraine program.

The literature is replete with data confirming what headache physicians confront every day – migraine and other cephalgias worsen almost every quality of life measure.

A 2009 meta-analysis, coauthored by Dr. Buse and Dr. Richard Lipton, past president of the AHS, perfectly captured headache’s often all-consuming impact. Patients with a high headache burden “had higher lifetime rates of depressive disorders, panic disorder, obsessive-compulsive disorder, generalized anxiety disorder, specific phobias, and suicide attempts than controls, were more likely to have missed work in the preceding month, to assess their general health as ‘fair’ or ‘poor,’ and to use mental health services.”

The relationship between headache and mental disorders is a complex one, not entirely understood, Dr. Buse told me during an informal chat. She likened it to the famous chicken-or-egg conundrum. “There is some evidence of bidirectionality – that each one predisposes to the other,” she said. “But if you think about it, it makes intuitive sense. If you are afraid of your next headache, you’re likely to be anxious,” which makes a headache more likely and can increase its severity.

The same thing goes for depression, she said. The neurotransmitter dysfunction associated with depression may predispose to headache, but months – or years – of intermittent pain very probably increase the risk of becoming depressed.

It was easy to see the concern in her eyes, and the caring of everyone who spoke at the meeting. Many of them, I suspect, have seen the doodle come to life …  Caught in that spider’s web, knowing that something bad is coming, but having very little power to stop it.

– Michele G. Sullivan

Whose Rights Are at Stake?

The Supreme Court heard arguments Tuesday in support of the 2007 Vermont statute limiting the release of the information detailing which drugs doctors prescribe. This information is maintained by pharmacies, which sell it to data-mining agencies, that in turn sell it to drug companies, for marketing purposes. Patient information is excluded from the data, doctor’s information is not.

Under the Vermont law, this information can be released only with the consent of the doctor. However, once data collection firms like IMS Health and interested parties like Pharmaceutical Research Manufacturers of America, challenged the statute, the issue became a question of free speech.

In the case of Sorrell v. IMS Health Inc., data-mining firms claim they have First Amendment rights to buy and sell the information for their marketing use.

However, the state’s attorney’s office likened the release of the confidential information to disclosing a doctor’s tax returns, patient files, or a competitor’s business information, arguing that First Amendment rights in the case apply to protecting doctor’s information. But since the information is given away to parties including insurance companies, journalists, and law enforcement, the court wasn’t too convinced.

” … just don’t tell me that the purpose is to protect their privacy,” said Justice Antonin Scalia. “[A doctor’s] privacy isn’t protected by saying you can’t sell it but you can give it away.”

Justice John Roberts said Vermont is trying to reduce health care costs by “censoring” information doctors hear about brand-name drugs, with the intent that they will prescribe more generics, a measure Justice Scalia added was a restriction on free speech.

Vermont Assistant Attorney General Bridget Asay responded that “the purpose of the statute is to let doctors decide whether sales representatives will have access to this inside information” on the prescribing habits of physicians.

Attorneys general of several states, the federal government, AARP, medical associations, privacy groups, and the New England Journal of Medicine have filed briefs in support of the Vermont statute, according to a brief by Cornell (N.Y.) University Law School. The National Association of Chain Drug Stores, the Association of National Advertisers, the Associated Press, and Bloomberg have filed in support of the data mining firms.

In an age in which personal data can mined through social networks and search engines, this case could set the precedent concerning how much personal information can be used for marketing. A decision is expected by June.

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–Frances Correa (@FMCReporting on Twitter)