jeudi 31 mars 2016

WBUR Asks: Want To Nominate Someone As Your Fitness Inspiration?

WBUR Asks: Want To Nominate Someone As Your Fitness Inspiration?

Nintey-year-old retired Marine Col. Jonathan Mendes crosses the finish line at the end of the 2010 New York City Marathon, after 9 hours and 55 minutes. (USMC via Wikimedia Commons)

Nintey-year-old retired Marine Col. Jonathan Mendes crosses the finish line at the end of the 2010 New York City Marathon, after 9 hours and 55 minutes. (USMC via Wikimedia Commons)

Shhhhhh… We haven’t announced it officially yet, but we here at CommonHealth are working on a podcast that aims to apply the power tools of public radio — solid information, great storytelling and sound — to fitness. You know the umpteen Why To Exercise Today posts we’ve put up over the years? Kind of like those, only even better, and in the form of ear candy plus a daily email you’ll be able to sign up for in a few weeks.

As we begin the early stages of production, we’d love your help — and this is a chance to give props to someone you think deserves public recognition for what’s usually private effort. Is there someone you know who’s really your fitness inspiration? Who’s turned their health around, or just fights the good fight every day, as they’re able? Someone you’d like us to consider featuring in one of our podcasts or posts?

Let us know! Click here and fill out the Google form.

We welcome nominations of anyone you deem deserving, but there are a few types of folks we’re particularly looking for right now. People who…

• Seem to have zero free time but somehow manage to exercise anyway.

• Can talk about how exercise affects their weight, or their mood, or their energy levels.

• Can talk about how they overcome their own inertia and resistance.

• Actually enjoy weights and resistance training.

• Find ways to exercise despite their problematic location, or great ways to do it for free.

• Can talk about “falling off the wagon” of exercise and getting themselves back on.

• Have set themselves very gradual exercise goals, or found very simple rules.

• Can talk about how exercise affects their aging.

• Can share how their buddies/the social side help.

Thank you in advance! And please stay tuned — watch for word of “The Magic Pill.” (As in, exercise is the closest thing we have to one.)

‘Not Unlike A Mortgage’: Health Care Loans Proposed For Pricey Treatments

‘Not Unlike A Mortgage’: Health Care Loans Proposed For Pricey Treatments

Robert Deckman, at his home in Gloucester (Jesse Costa/WBUR)

Robert Deckman, at his home in Gloucester (Jesse Costa/WBUR)

About three years ago, right around his 50th birthday, Robert Deckman found out he qualified for MassHealth. So this carpenter from Gloucester did something he hadn’t done in years: He went to the doctor.

“I’m like, well, let’s get the 50-year tuneup, the whole nine yards, just everything,” Deckman said recently, tossing his hands in the air. “The blood work was the last thing I did.”

The blood work showed Deckman had hepatitis C, a virus that damages the liver. His doctor delivered good news: A drug coming on the market would almost certainly cure his disease. And bad news: One bottle of the pills would cost $37,000. Deckman would probably need two.

“‘I can’t pay that, so I guess I’ll just die,’ ” Deckman recalled telling the doctor.

The doctor told Deckman insurance should cover Harvoni, the medicine the physician would prescribe, but his insurance provider might make him “jump through hoops,” the doctor said.

Deckman was denied the very expensive life-saving drug twice. His skin turned yellow, his pony tail thinned, he developed a skin infection and problems with his teeth. Deckman’s family grew desperate. His sister, Viki Deckman-Moeller, laid out a strategy.

“Plan A was to put a fundraiser together for my brother, and see if we could, just through friends and family, get some donations,” Deckman-Moeller said. “And then, we were looking at, or I was looking at, going out and getting a loan of some type at a low interest rate, for — it would have been about $50,000 I guess.”

Taking out a loan or pulling out a credit card to pay a health bill is not new. But now, with hep C pills that are $1,000 apiece, cancer drugs priced at $100,000 a year, and gene therapy at almost $1 million per treatment, credit cards or a line of credit at your bank will not be adequate.

Dr. David Weinstock, left, and professor Andrew Lo (Courtesy)

Dr. David Weinstock, left, and professor Andrew Lo (Courtesy)

MIT professor Andrew Lo and Dr. David Weinstock at the Dana-Farber Cancer Institute say it’s time to create a long-term health care loan.

“The basic idea is for individual patients to have access to health care loans, not unlike a mortgage or auto loan or student loan,” Lo said. Patients would “borrow from a loan company to pay for these extremely expensive therapies and amortize the payments over a period of time, say five to 10 years.”

The loans would be available for drugs or treatment that would cure a disease or improve a patient’s health over the length of the loan.

“If the drug works, then all the payments would be made, but if it doesn’t, then payment would stop,” Weinstock said. “That creates more risk in the investment itself but it also incentivizes drug companies to develop drugs that really do work.”

The loans would not apply to drugs that prolong life for just a few months.

Patient loans are the first part of the Lo-Weinstock plan. Their longer-term payment model for exceptionally high cost medicine is a loan insurers would take out for individual patients. The loans would move with the patient when he or she changes health plans. Lo and Weinstock acknowledge that requiring insurers to accept existing patient loans, as they do a patient’s preexisting condition, would require amendments to state or federal laws or regulations.

Some consumer advocates question the need for such loans, arguing that patients have health insurance for just this reason — to cover costs patients can’t manage on their own. Some insurers have warned that they can’t absorb rising pharmaceutical costs indefinitely. Weinstock and Lo say insurers may be more willing to borrow money for very expensive treatments than pay one lump sum upfront.

“For two reasons: One is that they spread the payment out, and the second is that they stop paying if the drug stops working,” Weinstock said.

And Weinstock says the loans would be a boost for drug developers who target rare diseases because payment for discoveries that work would be assured.

Lo and Weinstock are organizing a conference later this year with investors, insurers, pharmaceutical reps and others to plan their next steps.

Some mortgage experts urge the two men to focus on loans to insurers and forget the idea of patient loans.

“Loans [to pay off medical debt] have been the single biggest driver of consumer bankruptcies to date,” said Patricia McCoy, a law school professor at Boston College who helped set up the federal Consumer Financial Protection Bureau.

McCoy says she worries that, as in the housing mortgage crisis, patients would sign for loans they could not pay back. “So we’re setting them up for possible medical and financial failure. That’s something I would hate to put desperate patients in danger of,” McCoy said.

At Health Law Advocates, a Boston-based agency that helped Deckman, the carpenter from Gloucester, answer some questions, director Matt Selig said: “It’s very scary to think you’d have to mortgage your future to pay for health care that would either maintain the quality of your life or save your life. In our society, that really shouldn’t be the case.”

What would happen, Selig asked, if someone defaulted on a loan? Lo and Weinstock use student loan default rates to predict how often patients might not repay health care loans. They conclude that even with a significant default rate, health care loans would still be attractive to investors.

Lo says the loans would have to be used and managed carefully. He and Weinstock say they are disturbed by the idea of patients going into debt to buy treatment that may save their lives. But Lo says they shouldn’t be dying because they can’t afford a drug either.

“So, rather than just watching it happen, we feel that a better way is to provide these health care loans and over time,” Lo said, “I’m hoping that policymakers will see the urgency of dealing with these issues and be able to provide the right kind of legislation so that insurance companies can cover this and still stay afloat.”

Deckman’s Health

On the third appeal, Deckman’s insurance plan agreed to pay for two rounds, or two bottles, of Harvoni. He finished the treatment and Deckman’s doctor told him he’s almost certainly cured. He will not need a third bottle of Harvoni, which would have brought the cost of his treatment to more than $100,000. Feeling great for the first time in years, Deckman is grateful — and frustrated.

“How do you justify [$100,000] plus tax for 90 pills to save someone’s life?” Deckman asked. “I mean, come on.”

Gilead, the company that makes Harvoni and Sovaldi, has said that its hep C drugs are a good value because they save the costs of treating liver disease or liver transplant surgery.

Massachusetts Attorney General Maura Healey is in discussions with Gilead about whether the company’s pricing strategy is unfair and deceptive, in violation of state law.

mercredi 30 mars 2016

Why To Exercise Today: Journal Warns Zapping Your Muscles At Gym Not Safe

Why To Exercise Today: Journal Warns Zapping Your Muscles At Gym Not Safe

Fitness training with electrical stimulation (Bodystreet/Wikimedia Commons)

Fitness training with electrical stimulation (Bodystreet/Wikimedia Commons)

Confession: I didn’t know this was already a thing. I thought it was still purely my fantasy: I lie down on a padded table and tell the electrode technician, “Please give me the equivalent of an hour of CrossFit.” Then I relax as my muscles and nerves are zapped into activity that approximates an actual workout, but sweat-free.

I’m filing that fantasy away with my hopes for a pill that will someday activate my brown fat so brilliantly that the need for actual exercise is utterly obviated. Because a letter just out in the journal BMJ warns that the relatively novel practice of “whole-body electrical stimulation” at the gym can land you in the hospital with rhabdomyolysis, or muscle breakdown.

(Of course, non-electric CrossFit can apparently lead to the dreaded “Uncle Rhabdo” too, if you really overdo it. Also, I should note that the electrical stimulation discussed in the BMJ letter is the kind used during a workout, not instead of one as in my fantasy.)

The letter, titled “It’s time to regulate the use of whole-body electrical stimulation,” opens with the background:

Transcutaneous electrical stimulation (ES) of human nerves and muscles has long been used as a non-pharmacological treatment for pain relief, and for rehabilitation after disuse. Whole body ES has recently emerged as an alternative form of physical exercise for improving fitness and health in healthy people. Despite limited scientific evidence on the safety and effectiveness of this form of exercise, several ES company sponsored fitness centers have recently been opened in different countries worldwide, making this technology easily accessible to the general population.

Now for the no-free-lunch part:

On 4 August 2015, a 20-year-old man presented to our hospital with severe muscle pain shortly after a session of gym based whole body ES exercise supervised by a fitness professional. Rhabdomyolysis was diagnosed, and he was treated with intravenous 0.9% saline for five days.

In Israel, a TV documentary publicized the potential risks of electrical stimulation, reporting that thousands of Israelis have tried it. The BMJ letter notes that several problematic cases have arisen and the Health Ministry issued an official public warning against the practice in January. The warning said bluntly: “The devices must not be used in gyms. Use without medical supervision could cause danger to health.”

The BMJ letter suggests that other health authorities follow suit. I asked its senior author, Dr. Nicola Maffiuletti, head of the Human Performance Lab at the Schulthess Clinic in Zurich, three quick questions by email:

Do you happen to know how common it has become for gyms to offer electrical muscle stimulation, and has it arrived in the United States yet?

Maffiuletti: “‘Whole body EMS’ is increasingly offered worldwide, also in the U.S. (there are three main brands that are distributed in more than 40 countries worldwide, including the U.S.). As an example, more than 500 centers have been opened in Spain in the last five years that offer whole body EMS. (Spain is one of the countries where EMS is more used.)”

What is the science on whether EMS actually works to replicate the effects of exercise? Is there any good research on that? How does the actual science compare with the marketing/advertising claims?

Maffiuletti: “There is good research on the acute and chronic effects of single-muscle EMS (the quadriceps, in particular) not on “whole body EMS.” EMS is not able to induce the same contractions as normal (voluntary) exercise, but there are some interests of EMS (particularly for patients during and after a period of disuse). Claims are always too optimistic compared to actual (good) science.”

Do you think this could ever work, to obtain the benefits of exercise with electrical stimulation?

Maffiuletti: “It already works for some patient populations (intensive care unit, respiratory failure, orthopedic) but I guess it will never be more effective than normal (voluntary) exercise for healthy people.”

Dr. Maffiuletti declined to name the big brands, but this paper’s references list three: Efit Spain, MihaBodytec and X-Body.

Bottom line: At this point, it’s back to the conventional gym for me — unelectrified.

mardi 29 mars 2016

Narrating Medicine: The Patient Who Peppers You With Questions Is Not Being ‘Difficult’

Narrating Medicine: The Patient Who Peppers You With Questions Is Not Being ‘Difficult’

(andyde/Flickr)

(andyde/Flickr)

By Anna Reisman
Guest Contributor

Not long ago, I got this plea from my medical students: Can’t these patients stop with all the questions? The questions — about procedures and Googled findings and alternate treatments — were getting in the way of providing good, efficient medical care, the students said.

Some examples:

— One student described a young woman with advanced breast cancer who was so persistent in asking for tests and procedures that the team dreaded seeing her on morning rounds.

— Another student recalled a busy orthopedic clinic where he and his resident would see up to 60 patients a day. There wasn’t any extra time for patients to ask anything that strayed even remotely outside the orthopedic zone, and so any such patient was branded “difficult.”

— A third student spoke about a very old, dying man hooked up to a ventilator in the ICU whose family refused to consider a Do Not Resuscitate order.

The ‘Difficult’ Patient

There is a difference between difficult and “assertive,” I pointed out to the students. It’s good for patients and family members to ask questions, speak their minds and not dutifully accept every recommendation. It’s great that they advocated for themselves or their family members. But to the students, these patients were impeding their own best interest, and this, it seemed, was making them feel burned out even before they received their medical school diplomas.

Another young man raised his hand. He’d spent a month working in a government hospital in South Asia. There, he told us, no patients were difficult. Patients listened. You told them what they needed to do and they did it. Simple as that.

The students pondered this for a moment. Then one asked, tentatively, whether the reason we have so many patients like this in the U.S. — the kind that ask a lot of questions — might be our focus on “patient-centeredness.” Could we be giving our patients too much room to speak? At some point, he wondered, shouldn’t our knowledge, expertise and experience trump those endless questions?

I almost fell off my seat.

Not to say I don’t understand this perspective. I do. After all, these students were about to become doctors, steeped in newly acquired knowledge and eager to apply it.

I believe there’s a certain yearning in many medical students for the age of the paternalistic physician who knew what was best for his patients and just did it, basically leaving the patient out of the decision-making process.

I also understood this perspective because I, too, am guilty of it at times. On a busy day, any patient with more than a few issues or questions becomes by definition difficult; when things are less hectic, the same patient might merely come across as complicated.

In my early years as a primary care doctor, I didn’t mind questions from my patients but hated the feeling of having my recommendations challenged. Those discussions could be time-consuming. I wished my patients could just accept my recommendations at face value.

No More Cringing

As a middle-aged doctor who has practiced medicine more than 15 years, my perspective has changed, thanks in large part to having been on the other side. I question my doctors and my family’s doctors. I expect them to be willing to engage in conversation, answer my questions, and provide good reasoning. I can’t imagine accepting everything that a doctor tells me with nary a raise of an eyebrow. And so now, when my patients tell me that they’ve Googled their symptoms or read about some new approach on Facebook, I no longer cringe; I welcome their input.

One of my colleagues urges medical students to view difficult patients as visiting professors, there to teach. Assertive patients fit that description: It’s like having a coach in the room who will blow a whistle if explanations aren’t clear or pipe up if there are options that haven’t been discussed.

Is there evidence that assertive patients have better health outcomes? My take is yes. In the medical jargon du jour, listening carefully and appreciating the patient’s perspective is called “shared decision-making.” Shared decision-making increases patients’ knowledge and decreases the number of patients on the fence regarding medical decisions. That’s what’s so great about assertive patients: They ask questions, express their beliefs and values, and oblige their doctors to have a give-and-take conversation.

Easy? Not So Fast

For those doctors — and students — who have trouble making room at the shared decision-making table, assertive patients will pull up an extra chair and wiggle right in.

The alternative? The “easy” patient who nods and has no questions, but on the way out tosses the prescription or never schedules the colonoscopy. Don’t dread patients bearing questions, I told my students. Welcome them. They’re some of the best teachers you’ll encounter.

Anna Reisman, M.D., is an associate professor at Yale School of Medicine and a Public Voices Fellow with The OpEd Project.

lundi 28 mars 2016

Opinion: A Call For Protecting The Health Of Women Who Donate Their Eggs

Opinion: A Call For Protecting The Health Of Women Who Donate Their Eggs

Human egg and sperm (Spike Walker. Wellcome Images/Flickr)

Human egg and sperm (Spike Walker. Wellcome Images/Flickr)

By Judy Norsigian and Dr. Timothy R.B. Johnson

The egg market is growing.

As couples and individuals continue to rely on assisted reproductive technology to overcome infertility, to make parenthood possible for gay couples and for other reasons, the demand for eggs is increasing swiftly. Between 2000 and 2010, the number of donor eggs used for in vitro fertilization increased about 70 percent, from 10,801 to 18,306, according to a report in the Journal of the American Medical Association.

And although there are no exact figures for how many young women engage in egg-retrieval-for-pay, the numbers are at least in the thousands. Many of these women are in their early 20s — often university students in need of cash to cover their tuition fees. But what most of these women, as well as the general public, don’t realize is that there are no good long-term safety data that would enable these young women to make truly informed choices.

Now, a number of women’s health and public interest advocacy organizations — including Our Bodies Ourselves, the Pro-Choice Alliance for Responsible Research and the Center for Genetics and Society — are studying women’s knowledge about egg retrieval and calling for more and better research about its risks.

Here’s an example:

One drug frequently used to suppress ovarian function (before the ovaries are “over-stimulated” to produce multiple eggs that can then be harvested and fertilized) is leuprolide acetate (Lupron). The U.S. Food and Drug Administration has not given approval for this particular use of the drug, and thus its use during egg retrieval protocols is “off label.”

In various surveys of younger women engaging in so-called egg “donation,” it appears that this fact about off-label use is rarely shared. Probably few, if any, of these young women know about the 300-page review of many Lupron studies that Dr. David Redwine submitted to the FDA in 2011. In this report, he documents a plethora of problems, some long term.

How can we encourage the collection of adequate long-term data about the extent and severity of egg retrieval risks? Given the strong anecdotal evidence of problems such as subsequent infertility, a possible link to certain cancers and more prevalent short-term problems with Ovarian hyperstimulation syndrome (OHSS) than previously reported in the literature, more well-done studies are needed.

Although one independent voluntary national registry in the U.S., the Infertility Family Research Registry (IFRR) based at Dartmouth-Hitchcock Medical Center in New Hampshire, offers such an opportunity, very few large fertility centers are even willing to put out the brochures and placard for this registry.

In the absence of prospective trials that follow women for longer periods, this registry is one of the few ways we can track women to determine longer-term risks. We hope this situation will change soon if more egg donors start demanding that clinics at least make young women aware of the registry.

Ironically, many of the fertility centers that do not make those brochures available in their waiting areas are members of the American Society for Reproductive Medicine, the professional organization of fertility practitioners that has provided modest grant support to the Registry.

In early 2013, three young women formed We Are Egg Donors, the first-ever self-help advocacy group created by women who have provided eggs.

These women have been collaborating with Diane Tober at the University of California, San Francisco to conduct in-depth interviews with other egg providers and are systematically collecting information about a full range of their experiences, from emotional to physical. They, along with the women’s health and public interest advocacy organizations mentioned earlier, are studying women’s knowledge about egg retrieval, calling for more research and encouraging greater participation in the IFRR.

Raquel Cool, a founding member of We Are Egg Donors, says in an email that the U.S is “among the only countries in the world where eggs are freely and openly exchanged for uncapped amounts.”

She says: “I recall one members’ experience, a first-time donor, whose reproductive endocrinologist deemed her at a high risk of Ovarian Hyperstimulation Syndrome (OHSS). He canceled the cycle. I’ve seen that happen once in three years. More often, we regularly see cases of OHSS, a fully preventable condition that, in severe cases, the provider’s abdomen swells with fluid and needs to be drained with a needle, or can cause a stroke. Collecting safety data — both of the short- and long-term risks — can only support informed choice.”

Tober, of UCSF, who is also producing a film about egg donation, said via email that  “there is a great deal of inconsistency in how egg donors are treated, both in their interactions at clinics and agencies and medically.”

“While some physicians are more conservative with the medical protocols, others use very aggressive protocols and end up with excessive numbers of eggs in their donors. Even though some women do naturally produce more eggs than others, the number of mature oocytes produced can be somewhat controlled by using more conservative medication dosages.”

Tober adds: “Some insurance companies are also now refusing to insure physicians with high OHSS rates in their donors, but this information is not being made available beyond those in the industry. Doctors are thus far not held accountable when a donor has severe complications.”

A 2013 editorial in JAMA noted that “more complete data on both short- and long-term outcomes of donation are needed so donors can make truly informed choices and, once those data are available, mechanisms can be put in place to ensure that the donor recruitment and consent process at clinics is conducted according to the highest ethical standards.”

A 2014 statement by the National Perinatal Association recommends that: “State regulatory agencies who license and provide oversight for collection and use of human tissues should provide the same level of oversight for sperm banks, the selling of human eggs and egg ‘donation.’ ”

Even back in 2007, a New England Journal of Medicine “Perspective” piece noted, “If women are going to donate eggs, we must ensure that their health is not compromised. We need, therefore, to subject egg donation to far more scientific scrutiny than it currently receives. We need more longitudinal studies of the drugs involved in ovarian hyper-stimulation, for example, more long-term follow-up of egg donors, and deeper analyses of the conditions under which dangerous complications occur.”

Jennifer Schneider, M.D., a Tucson-based internist whose own daughter, an egg donor, died of colon cancer, has written: “Right now, egg donors are treated like vendors, not as patients. Patients need to be followed up…” As many egg providers will attest, after the first few days of being discharged with no immediate consequences, they are never contacted again.

As current and former egg providers increasingly pool their experiences and provide a growing body of anecdotal evidence pointing to significant harms, especially in cases where women provide eggs on multiple occasions, we need to establish a more rigorous system of evaluating the risks.

Studies sponsored by independent researchers, the government and other responsible entities can provide the evidence that is currently lacking and therefore makes truly informed consent impossible. Collecting more thorough safety data will allow young women to better assess the pros and cons of exchanging their eggs for cash.

Timothy R.B. Johnson, M.D., is chair of obstetrics and gynecology, University of Michigan, Ann Arbor; Judy Norsigian is co-founder and past executive director, Our Bodies Ourselves.

vendredi 25 mars 2016

‘Medically Unnecessary, But A Choice:’ Tripling Of Women Who Have Healthy Breast Removed

‘Medically Unnecessary, But A Choice:’ Tripling Of Women Who Have Healthy Breast Removed

Dr. Mehra Golshan performs a bilateral mastectomy (Courtesy Dana-Farber/Brigham and Women's Cancer Center)

Dr. Mehra Golshan performs a bilateral mastectomy (Courtesy Dana-Farber/Brigham and Women’s Cancer Center)

As Ellen Collins lay on the operating table, her mind beginning to fog over from the anesthesia, the surgeon who was about to perform her double mastectomy offered encouraging words: “I will meet you at the top of Vail Mountain.”

Three years later, when Collins marked the joyous milestone of surviving her aggressive breast cancer beyond the worst danger zone, the surgeon kept his word. Dr. Mehra Golshan and his family did indeed meet her at the top of the mountain to celebrate — and ski down.

That was back in 2013, and Collins remains grateful to this day. She has not a single regret about her double mastectomy and the reconstruction that followed.

Surgeon Mehra Golshan and patient Ellen Collins mark her breast cancer three-year survival milestone on Vail Mountain in 2013. (Courtesy)

Surgeon Mehra Golshan and patient Ellen Collins mark her breast cancer three-year survival milestone on Vail Mountain in 2013. (Courtesy)

“The peace of mind and the quality of life — I feel whole again, I feel complete,” she said. “I can look in the mirror and not feel deformed. I feel proud of myself and I feel healthy — it’s priceless.”

And Dr. Golshan, who is distinguished chair in surgical oncology at Brigham and Women’s Hospital, remains supportive of her choice. But he is also concerned about the trend she represents.

The number of women who have cancer in just one breast but choose to have both breasts surgically removed is rising ever more dramatically. From 2002 to 2012, the rate tripled, according to newly published research that Golshan oversaw.

Among the nearly half a million American women diagnosed with early invasive breast cancer during that time, double mastectomies rose from about 4 percent of patients to over 12 percent. And those numbers pre-date the boost from Angelina Jolie’s 2013 announcement of her own surgery.

Here’s the crux of the problem: For 90 percent of those women, those who lacked a clear genetic risk, the data show that double mastectomies did not improve their long-term odds of survival. That lack of survival benefit has been clear for years, but they underwent the major operation anyway.

“The number one concern for my patients is survival,” Golshan said. “And if I can’t say that removing the opposite breast is going to achieve that, well, is that something a woman should go through? And it’s a very difficult and a very personal decision, but our research is basically showing that if anything, it’s increasing, and not slowing down.”

‘I Don’t Want This Coming Back’

Why would more and more women be choosing an operation that involves a long recovery and carries risks that include recurrent infections, chronic pain and the need for more surgery?

Golshan’s own study offers a major clue: Far more women who have mastectomies are also undergoing breast reconstruction. The rate has risen from 35 percent in 2002 to 55 percent in 2012. Reconstruction itself has been improving significantly, he said.

So for a patient like Ellen Collins, a double mastectomy combined with reconstruction offers a double appeal.

The mastectomy left her feeling like she had done everything she could to reduce the risk of a recurrence, she said. Her children were in kindergarten and second grade when she was diagnosed at age 41.

“In a cancer situation, so much is out of your control,” she said, “but this was one piece that I could say with conviction that I want to do for me, and the main point is, I don’t want this coming back.”

Ellen Collins (Courtesy)

Ellen Collins (Courtesy)

The reconstruction also gave her breast “parity” — so now, in a sales job in which appearance is important, “I feel confidence in anything I wear. I was able to get my life back.”

Also a possible factor: Rising public attention to breast cancer, including celebrities like Jolie who are open about their operations and model good outcomes.

Yet another possible factor: The findings on the lack of a survival benefit don’t make intuitive sense. If your diagnosis shows you’re prone to breast cancer, it seems obvious that removing a breast should lower risk.

But the risk of cancer in the opposite breast is extremely low, Golshan explained, and if cancer does develop there, it will likely be caught early. The greatest danger is cancer coming back elsewhere, in a woman’s lungs or bones or brain, he said.

And then there’s insurance: American health insurance generally covers “contralateral prophylactic mastectomy and reconstruction” — removing the healthy breast and doing a double reconstruction — even though the costs may amount to tens of thousands of dollars more than less involved options.

‘It’s Medically Unnecessary, But It’s A Choice’

So with all the factors in favor of preventive mastectomies, why all the concern from Golshan and other cancer specialists?

“From a medical perspective, this is a medically unnecessary surgery for most women,” explained researcher Shoshana Rosenberg of the Susan F. Smith Center for Women’s Cancers at Dana-Farber. “Because it does not improve your outcome, it does not improve your survival. So you’re doing an aggressive medical procedure that doesn’t really improve a medical outcome — that’s the concern.”

“At the same time,” she said, “you want to empower women to be in charge of medical choices, and for some women it might be the right decision. So you have that tension — it’s medically unnecessary, but it’s a choice.”

Note: For women with BRCA mutations, which dramatically raise the risk of breast and ovarian cancer, some studies suggest there is a medical benefit: a double mastectomy does seem to improve their survival odds.

But recent research by Rosenberg and colleagues found that among women under 40 diagnosed with breast cancer, more than half of the patients who tested negative for BRCA mutations nonetheless opted for double mastectomies.

Dr. Shelley Hwang, chief of breast surgery at the Duke Cancer Institute, recently expressed the concern about “contralateral prophylactic mastectomies” like this in The Washington Post: “Breast surgeons as a community are very worried about women using this kind of surgery to alleviate anxiety,” she said. “Surgery is meant to cure a biological problem, not make people feel less anxious.”

Still, the specialists and researchers who are raising concerns about contralateral mastectomies are not calling for the option to be taken away.

Rather, they argue that more research is needed to improve breast cancer surgery decision-making. Rosenberg, of Dana-Farber, is doing just that — analyzing the factors at work in these decisions.

Research has already found that women are likelier to choose double mastectomy if they’re younger, she said, and if they’re white. Now the challenge is to get deeper into their decision-making.

One possible motivation, she said, is that younger women in particular want “to feel like you’ve done everything possible to take care of the breast cancer. And sometimes that means doing or being the most aggressive you can be, even though that doesn’t necessarily improve your outcome.”

It’s well known that we humans have a hard time wrapping our minds around risk and probabilities when we have to make decisions — particularly when emotions are running high.

“So I think it’s this complex interplay of emotions and having to process a lot of information when you’re newly diagnosed,” Rosenberg said. “That’s part of it.”

Ultimately, she said, the plan is to develop a “decision aid” — a tool to help newly diagnosed patients talk with their doctors about surgical options, “ensuring they’re supported and making an informed decision.”

‘You Face Two Potential Harms’

For a sense of what that conversation could eventually sound like, I turned to David Ropeik, an instructor at Harvard who is an expert on risk communication and author of “How Risky Is It Really? Why Our Fears Don’t Always Match The Facts.”

He pointed out that breast cancer carries a particularly high fear factor because it’s so often in the news, and people still tend to see “the C word” as a likely death sentence, one that involves pain, suffering and powerlessness.

Choosing a double mastectomy when it will not improve survival odds can seem like “self-harm,” he said. But chronic, toxic stress stemming from worry about cancer can be bad for you too. So he suggests a script for a doctor that goes something like this:

“You face two potential harms with this choice. One is to leave your other breast alone, because there’s no clinical reason to remove it, but deal with fear, which causes stress, which has health effects, but which you can, and over time you will, deal with. You will go on with your life, and most of the time you won’t be thinking about that.

“Or you can have your other breast removed, with all the physical complications of that and the potential — low but real — for side effects. That’s the other harm that you face. The disfigurement, although there are prosthetics, and the potential complications of surgery, to do something that is not clinically called for but which has the benefit of removing the stress.

“So the question you really need to ask yourself is: If you leave the breast on — be very honest, over the course of your life, continuing to have your breast examined to make sure there’s nothing popping up and doing other things to deal with the stress — do you think, really, that you will be seriously poisoned by chronic worry and stress over time? Not just now, when it’s really scary, but over time?

“If you think that you can adjust to that stress, and it really won’t cause you a lot of harm, then the choice focuses back on doing something that’s not clinically called for, which has potentially negative physical side effects, just because you’re afraid.”

The challenge is to frame the question for the patient, Ropeik said, “but you’re not answering and you’re not advising. That’s the most important part of the risk communication conversation, in this case and in most cases: to frame things in a sympathetic way, a supportive way, a clarifying way, but not a way that prescribes how the person should feel or decide.”

“That’s up to them,” he went on. “This is a very personal thing in the end, and no doctor or medical provider can really make that call for people. And the more they acknowledge that in how they deal with people, the more their framing will carry weight with that patient.”

Readers, thoughts, reactions? Would this sort of conversation work for you?

As Mass. Grapples With Opioid Crisis, Increasing Number Of Babies Being Born Exposed To Drugs

As Mass. Grapples With Opioid Crisis, Increasing Number Of Babies Being Born Exposed To Drugs

Shortly after birth, James, who is now 1, was diagnosed with neonatal abstinence syndrome and given small doses of morphine to get him through the withdrawal. Here, James works with occupational therapist Victoria Peake at MGH's Newborn Developmental Follow-Up Clinic, as Dr. Leslie Kerzner, left, and James' adoptive mother, Kristen Fontain, center, look on. (Jesse Costa/WBUR)

Shortly after birth, James, who is now 1, was diagnosed with neonatal abstinence syndrome and given small doses of morphine to get him through the withdrawal. Here, James works with occupational therapist Victoria Peake at MGH’s Newborn Developmental Follow-Up Clinic, as Dr. Leslie Kerzner, left, and James’ adoptive mother, Kristen Fontaine, center, look on. (Jesse Costa/WBUR)

Massachusetts hospitals are seeing evidence that the opioid epidemic is affecting the next generation, with an increasing number of babies being born exposed to drugs.

The most recent state hospital data suggest that the rate of drug dependent newborns has skyrocketed to about 16 in every 1,000 births — about three times the national average.

At Massachusetts General Hospital, doctors started following drug-exposed babies about three years ago. Dr. Leslie Kerzner, director of the Newborn Developmental Follow-Up Clinic at MGH, tracks the babies until age 2. She says the vast majority of infants exposed to drugs in utero will experience withdrawal symptoms similar to those of an adult going through withdrawal.

“A baby going through withdrawal is very disorganized,” Kerzner explained. “They go from state to state, from alert awake to crying, you know, it’s like zero to 60 in just a couple of seconds. They have increased muscle tone, a high-pitched cry. They’re not easy to soothe. They may be throwing up, have diarrhea, mottled skin. They are not healthy looking.”

Most of the moms that gave birth to exposed babies at MGH in the past year were white, their median age was about 30. More than 30 percent of the moms were prescribed opioids for chronic pain. Close to 90 percent of the pregnancies were not planned.

One of those babies was 1-year-old James. Shortly after birth he was diagnosed with what’s called neonatal abstinence syndrome and given small doses of morphine and another drug to get him through the withdrawal.

James crawling after a rubber duck during a check up at the Newborn Developmental Follow up Clinic at Massachusetts General Hospital. (Jesse Costa/WBUR)

James crawls after a rubber duck during a recent check up at the Newborn Developmental Follow-Up Clinic at MGH. (Jesse Costa/WBUR)

“James did go through neonatal abstinence syndrome, requiring medical therapy with both morphine and phenobarbital — which is not unusual when a baby might have been exposed to other things,” Kerzner said. “Many of the moms are poly-substance users.”

Doctors knew that James’ biological mother was taking methadone because of her opioid use and that she told MGH social workers she was interested in putting James up for adoption. That’s when 34-year-old Kristen Fontaine and her husband got involved. They were looking to adopt and came to see James at MGH’s special care nursery.

“He was 8 pounds, this tiny little thing,” Fontaine recalled. “We were here 18 hours a day. My husband and I sat with him 18 hours a day and the nurses said that’s what really got him through the whole process.”

Doctors believe that bonding with a caregiver and being held and soothed helps these babies developmentally. Many try to keep the babies with their birth mothers, at least initially. Hospitals are required to file a complaint with the state when a baby is born exposed to drugs, even if a mother is prescribed them legally. The Department of Children and Families then decides where a child goes from there. From March 2014 to February 2016, DCF responded to 4,788 cases of children born exposed to drugs. More than 700 of those babies were placed in state custody.

James’ case is unusual. He left the hospital with his adoptive parents when he was five and a half weeks old — which is considered a short amount of time. It’s something Fontaine still has a hard time talking about.

“It just makes me happy that he is the way he is now,” she said. “He’s so full of life and he’s so happy. It’s hard to think about the kids that are there now. I just want to take them home too.”

James does appear to be thriving. During a recent visit to Dr. Kerzner’s clinic, Fontaine said she was grateful for the support she has — not just from this clinic, but from her own doctor and regular visits from state early intervention specialists. She told Dr. Kerzner about various programs she takes James to every week — baby swim, baby yoga, play groups. She’s confident that he’s going to be OK.

"It just makes me happy that he is the way he is now. He's so full of life and he's so happy," James adoptive mother, Kristen Fontain, said. (Jesse Costa/WBUR)

“It just makes me happy that he is the way he is now. He’s so full of life and he’s so happy,” Kristen Fontaine, James’ adoptive mother, said. Here, James laughs as Fontaine and James’ grandmother look on. (Jesse Costa/WBUR)

“He’s going to be just be a normal happy kid,” Fontaine said. “He’s going to play baseball according to his dad. He’s going to be a pitcher and he’s going to be a lefty.”

In fact, like most moms, Fontaine says her child is exceptional.

“We have a big huge, in our bedroom, 20 by 20 print of him wearing his ‘Superman was adopted too,'” she said. “He’s our little Superman, our little superhero.”

There’s not a lot of data on the long-term effects for babies born exposed to opioids. Dr. Kerzner says most of the withdrawal symptoms wear off in a few months. Some studies suggest there are lifelong effects for exposed babies, other studies suggest there are not.

Dr. Kerzner hopes to start answering some of those questions by gathering data from her clinic and expanding it to babies born at other hospitals. And the state plans to spend more than $3 million this year on improving care for drug-exposed babies and their mothers.

jeudi 24 mars 2016

Study: Despite Weight Gain, Quitting Smoking Improves Heart Health For Mentally Ill After A Year

Study: Despite Weight Gain, Quitting Smoking Improves Heart Health For Mentally Ill After A Year

(kenji.aryan/flickr)

(kenji.aryan/Flickr)

The health profile for people with serious mental illness is pretty grim. In general, they have a lower life expectancy — 25 years less than the general population — which is largely due to cardiovascular disease related to high rates of obesity and smoking.

But a new study by researchers at Massachusetts General Hospital found that after one year, seriously mentally ill patients who quit smoking — even though they gained about 10 pounds — had a lower risk of developing heart disease compared to those who didn’t quit. That’s the good news part of the research, published online in The Journal of Clinical Psychiatry. The bad news is that if those people — who already have high rates of obesity — continue to gain weight, it’s fairly likely they will develop a slew of other health problems, including cardiovascular disease, said the study’s lead author, Dr. Anne Thorndike, an assistant professor at MGH and Harvard Medical School.

“Quitting smoking is the single most important behavior change that anyone, [including] people with serious mental illness, can do to reduce their risk of developing cardiovascular disease,” Thorndike said in an interview. “But the weight gain is a red flag. The story’s not over at one year … If they continue to gain weight, all the health factors will worsen and contribute to higher rates of cardiovascular disease.”

The study included 65 patients who were a subset of a larger clinical trial evaluating a smoking cessation drug. Researchers found that those who were able to quit smoking gained more weight compared to those who relapsed, and yet their “cardiovascular risk score” went down. Still, the weight gain signals trouble ahead.

“The increases in weight that we observed among those who remained abstinent are predictive of future risk for even higher rates of diabetes, hypertension, and cardiovascular disease in the following years,” researchers wrote

The solution?

“The care of patients with serious mental illness needs to be more coordinated,” Thorndike said.

Currently, care for this population is “really broken up,” she said, with psychiatrists dealing with mental illness only and prescribing drugs that can make patients gain weight, for instance, or otherwise exacerbate physical problems.

“Frequently, the medical doctors and the behavioral doctors don’t talk,” Thorndike said. “We need to address all of these health behaviors together because that’s how you have the best impact on reducing cardiovascular risk.”

Anguished Reflections Of A College Crisis Counselor: A Student ‘On The Rooftop’

Anguished Reflections Of A College Crisis Counselor: A Student ‘On The Rooftop’

(Romain Caplanne/Flickr)

(Romain Caplanne/Flickr)

By John Rosario-Perez
Guest Contributor

John Rosario-Perez (Courtesy)

John Rosario-Perez (Courtesy)

We live and die for the weekend. Nowhere is this more true than on college campuses, where students are in hot pursuit of the pleasure principle. Chasing excess is a sport as well as a rite of passage. But the 72 hours from Friday night to Monday morning can also be among the most perilous, a portal to despair with no exit. A college crisis clinician for eight years, I encountered many students who suffered the weekend as exiles.

Over time I listened to dozens of anguished stories, so many that I could almost predict their twists and turns. Some were as lurid as a tabloid headline. Others landed faintly on the ear, a circuitous tale with multiple digressions before arriving at the dreaded destination — pain. Their narratives fell under many rubrics — crushed idealism, first love gone awry, dreams vanquished by failure. Betrayal.

To the casual observer, such confidences might seem transient and overblown, hysterical laments tied to youthful indiscretions. But to those overcome by despair, isolation can often feel permanent and unending, a life sentence without reprieve.

2 AM

Their calls often come in the middle of the night. By force of habit, I sleep restively, my ear cocked in anticipation of the mobile pager’s trill. Each time it summons me, I try to suppress a vague sense of dread and the panicked feeling that I don’t really know what to do despite my years of experience. A rush of adrenaline gives me a heightened sense of alertness and danger but also of being put on the spot.

Like so many other nights, I rouse myself from half-sleep and strain to collect myself in the dark. The phone lies on the bedside table, but my fingers, as reluctant as an arthritic’s, resist reaching for it. After speaking with the campus police, I dial a number.

“Hello. You called the crisis line?” I ask. “How can I help you?”

“It’s my roommate, Kevin. I’m not sure, but I think he’s suicidal,” a trembling voice says. “What should I do?”

“Can you bring him to the phone?”

“Hello,” a timid voice says in a tone that is anxious yet oddly detached.

I introduce myself as the crisis counselor and then proceed: “Could you tell me a little bit about what’s going on, about how you’re doing? Your roommate’s worried about you.”

“Doing OK,” he states flatly as if he were completing an online survey. “Fine.”

“Do you have any idea why he would call the crisis line? Are you sure nothing’s wrong?” I continue.

“Hmm … things are fine. Weird.”

“He thinks you want to die. Why would he think that?”

“I don’t know. I guess he overreacted,” he says dismissively.

“To what?” I ask. “For some reason, he’s convinced that you’re not safe. Why do you think he’s so worried about you? Did you say or do something?”

Circling The Rooftop

Silence. Is my directness too intrusive, shutting Kevin down before we have even had the chance to establish a rapport? “It’s OK, you can tell me, Kevin. I want to know how I can help you.” I try to sound less accusatory.

Again, nothing. I experience a slight sense of dizziness, as if falling through the air, unbounded. I notice I am clutching the phone. “Kevin?” I inquire, wondering if he is still on the line.

He speaks, again his voice sounding weak. “Sometimes I think about jumping from the roof of my building. I know that would kill me. I walk in circles on the rooftop and look down at the alley. Who cares if I die? Nobody.”

In a halting monotone, he describes weeks of sleeplessness. Days and nights of worry and dread. This weekend he was unable to leave his room, his bed. It is impossible to think clearly anymore. He mentions that he hasn’t eaten in two days. “Everything is fuzzy,” he says. “Everything is too fuzzy now.”

As I listen, I am awed by the depth of Kevin’s loneliness and detect the sound of hopelessness stuck in his throat. I feel tremendous pressure to bring him through this intact.

“Where are you right now?” I ask, my own voice tight with worry.

“In my room,” he answers. “I can’t sleep.”

“Stay put,” I say and call the police to bring him in for an evaluation.

I reach for the light switch, trying to focus my disordered self. My feet touch the floor, and I make my way through the night, relying on the security of the sensate world, a brief but comforting stay against worry and confusion.

2:40 AM

I quickly drive the few miles to campus, stopping at a Dunkin’ Donuts for a cup of hot chocolate. Entering the campus police station, I notice dark stains on my shirt, two blots of chocolate betraying my own muddle. A police officer glares at me and scowls as if to say, “What kind of doctor are you?”

Finally, Kevin and I meet.

Our conversation takes place in a windowless conference room whose ambiance is as unwelcoming as it is functional. “Don’t get too comfortable,” the chairs seem to say. The room’s generic features make it impossible to gauge the time, the day of the week or season of the year. The fluorescent lights cast an accusatory glare, our faces are washed out, greenish. We’re both weary from lack of sleep.

Kevin is thin, boyish, almost frail, with a fringe of brown hair falling above his eyes. Hunched shoulders give him the appearance of someone who has been standing in the cold for too long. He barely meets my eyes as I begin the interview.

We both slip into our prescribed roles. I rely on the false comfort of a well-rehearsed script and the cartoonish certainty of a psychiatric decision tree.

“In your own words, Kevin, tell me what has been going on.”

Without much prompting, he explains that his family has sacrificed everything for him to go to college. His seems more earnest than on the phone. “Since I was little, I wanted to be a doctor. My mom and dad promised me that if I got good grades in high school they would do everything to make it happen. It’s like the only thing I ever wanted to be.” He describes two hard-working parents, ambitious in their dreams for him. His mother works as a bank teller, father runs a cleaning business.

Sleeping Through The Final

“But what’s happened? What’s turned your life upside down?” I gently inquire. “On the phone you told me that you wanted to jump from the roof?”

“I didn’t say that I’d do it. I said that I thought about it sometimes. There’s a difference isn’t there?”

This time I am silent, giving him wide berth to tell his story. Kevin’s voice slows and he stares past me, parsing his words. “Last semester everything was great. I studied all the time. I made all A’s like I knew I would. This term it came time to take Chem 3. Everyone said, ‘not so easy, get a tutor.’ But I wanted to prove myself. I read everything, studied, crammed, went to all my labs. I memorized tables, stayed up all night. I felt so confident. But I bombed the mid-term. I was sure I did all the right things. How could this happen? I thought I was smart and now I felt so stupid. But I wasn’t going to give up. ‘I know I can do this,’ I kept telling myself and I studied even harder after the midterm. ‘I know I can do this.’ But I couldn’t and I didn’t. I slept through the final on Friday. When I woke up I ran to my professor’s office and begged him to give me another chance. All he said was, ‘Sorry.’ ”

“That sounds nasty. No wonder it’s shaken you up. I’m curious, did you call your parents?”

“Huh?” he replies. “Why would I do that? It would kill them if I didn’t become a doctor.”

He looks right through me and narrows his eyes as if I have betrayed him and then decisively turns away. Despite the anguish over his failure, Kevin appears indifferent to the peril that brings him here tonight.

“Kevin, I know it isn’t easy to talk about. But we have to talk more about your wanting to kill yourself. It’s the only way I’ll know how to help you,” I repeat. “When did you start feeling that way?”

“I think I am OK,” Kevin deflects.

“I know you feel that way now, but what happens when you go back to your room?”

“Don’t I look OK? I’ve told you everything.”

“What if your roommate hadn’t called, how do I know you wouldn’t have done it?”

“Do what?” he challenges.

“Jump.” The word hangs in the air between us.

“Why won’t you believe me?” Kevin protests. “It was just a figure of speech. I don’t want to kill myself. Honest.”

His frustration and anger momentarily stall me. If only I were a paramedic, or a priest delivering last rites, I could take direction from the literal world. I would know exactly what to do. Instead, I must rely on elusive cues and the ambiguous compass of my own judgment. I rub my eyes, doubting if you can ever really know what goes on in another’s mind.

“What’s changed? What’s different now?” I pose, hoping that he will reveal his inner thoughts and fears without my having to bear down on him. “How do I know you will be safe if I send you back to your room?”

“You just have to believe me. I’m fine.”

3:20 AM

Kevin’s stubbornness pushes me over a line that I would rather sidestep. Against my better judgment, my tone turns legalistic, interrogatory. His recalcitrance compels me to resort to the professions so-called best practices, a clear sign that my patience is thin. I ask him to spell W-O-R-L-D in reverse, to do serial sevens backwards from 100, to interpret the proverb “One swallow does not a summer make.” My approach is formulaic, impersonal, and flies in the face of everything I know about building trust. “Tell me more about your sleep, appetite, concentration, your loss of energy. When was the last time you had a drink?”

He responds grudgingly and I push harder. He describes the most intimate details of his life without much feeling. He tentatively tells me about loneliness but then redoubles and asserts that he has much to be grateful for. He rests his head on the table and complains under his breath, “You just don’t get it, do you? You just don’t understand.”

I react to his hedging, “What don’t I get — that you wanted to kill yourself by jumping off a roof?”

My bluntness is designed to push through any potential dissembling, but even to me it sounds brutal. He still denies any desire or intent to hurt himself, and defiantly says, “Why would I do that? I told you, it would destroy my parents. I wasn’t going to do anything.”

“How do I know I can believe you?”

“I don’t know.”

“If you don’t, Kevin, then who does?”

“You think I’m hiding something. You don’t even know me,” Kevin protests. “Jesus.”

I look directly into his eyes, feeling annoyed yet plaintive. “How can I let you go if you can’t even tell me how you plan to stay safe?”

By now, my efforts only intensify his resistance. I have failed to disarm him, but I keep at it. “You’ve told me about weeks of constant worry, insomnia,” I reiterate. “That your worst fears came true when you failed the class. But you haven’t told me anything about who you would turn to for help. I am not even sure if you have any friends.”

Angry tears stain his face. “You say you want to help me, but you’re making things worse.” I slowly repeat the essential question, which now sounds banal, drained of its urgency: “Kevin, did you want to kill yourself tonight? Did you go up on the roof?”

“What does it matter? You won’t believe me anyway.”

To The Hospital

He stares at my fingers as I thrum the “Pink Paper,” its pastel color belying its authority and power to force a three-day hospitalization. By now, he sees me as a bully or a mercenary determined to destroy his future. Perhaps it is no coincidence that the risk assessment takes place in a police station. My questions have been prying and intrusive. To him, I must seem determined to know everything about him without actually wanting to know him.

“You’re going to make me go to the hospital, aren’t you?” he challenges.

“I’m leaning that way,” I respond, feeling a sense of mutual defeat.

“Why don’t you just flip a coin for all you care,” he says sarcastically.

I am worn down by the inexactness of my task, but my gut tells me that I cannot trust him with own life. I tell him that I am sending him to the hospital for further evaluation and explain the process — the transport by ambulance, the medical clearance, the wait in the ER, further assessment by a psychiatrist, followed by more waiting.

With his dignity all but eradicated, he makes one last stand. “Don’t do this to me,” he seethes. “I told you I don’t want to die anymore. What about my GPA? My scholarship? Don’t you see this is going to destroy my life? You can’t do this.”

Phone calls are made, details presented to nursing staff; within minutes, the disposition is wrapped up. A pair of EMTs arrive and strap Kevin to the gurney, then wheel him out to the ambulance. I watch as his head bobs up and down as if on a spring, his hands grasping the stretcher’s metal bars. “You’ll be OK,” I say, knowing how trite my words must sound.

Kevin’s life and mine intersect briefly, yet his image lingers in my mind. Together, we inhabited a gray area, and I pushed for the contours to fall harder and cleaner. The siren and the red lights of the ambulance fade into the night, transporting him to some vaguely dreaded destination.

4:30 AM

Experience has shown me that for some students such an encounter restores a sense of safety and coherence as if pushing a reset button. For others, it may be the emotional tipping point that makes hospitalization the clear and only choice. And then there are those who rally briefly, appearing self-contained even to themselves, while still in danger of acting on their most lethal impulses.

I know that it is impossible for you, Kevin, to appreciate the ways I struggled with my decision. Undoubtedly, I will be a name filed away in “moments best forgotten.” Yet, I wish I could tell you that although time can seem like a vacuum, a shape does eventually emerge, allowing you to recognize that this dark night has become a faded moment long ago. Despair will remain fixed in a place called the distant past.

If you are lucky, Kevin, you will find yourself standing in the present, relieved that your footsteps are sure and unwavering in their movement forward. And if you concentrate and still your mind, you will detect the pull of the future, a subtle pulse of light on the horizon. Please know that despite evidence to the contrary, I understand how keenly you will have worked to stay alive.

The case is a composite based on two different individuals, but it represents a common scenario.

John Rosario-Perez is a Cambridge-based psychologist, who worked for many years in college counseling.

mercredi 23 mars 2016

Mass. Hospitals Seeing Surge In Heroin-Related Visits

Mass. Hospitals Seeing Surge In Heroin-Related Visits

Opioid-related hospital visits are “skyrocketing” in Massachusetts, with heroin-related visits jumping by 201 percent between 2007 and 2014, according to Health Policy Commission figures discussed Wednesday.

Opioid-related hospital visits have increased from around 30,000 in 2007 to more than 55,000 in 2014, with non-heroin opioids accounting for the bulk of the trips, an analysis by the commission found.

“These are not deaths,” said Katherine Record, the commission’s deputy director of Behavioral Health Integration and Accountable Care. “These are patients who had successful health care intervention….and the rate of those patients, is skyrocketing, as you can see.”

Record said there has been “huge growth” in heroin-related hospital visits. “Heroin has gotten cheaper and more accessible, and as we clamp down on the availability of pills, which is a good thing, it does force patients to turn to heroin, so we need to be thinking about that as well as prescription control,” she said.

Preliminary findings from the analysis, presented at a meeting of the commission’s Quality Improvement and Patient Protection Committee, showed the rate of hospital visits varies significantly across the state, with Pittsfield, Holyoke, Springfield, Worcester, Boston, Lynn and Leeds, a village in Northampton, representing “hot spots” with higher rates of opioid-related inpatient admissions.

“It is everywhere,” Health Policy Commission executive director David Seltz said. “It’s just a particular problem in some of the communities, and I think that lines up with what we know.”

According to the Department of Public Health, the 1,099 confirmed cases of unintentional opioid overdose deaths in 2014 represented a 65 percent increase over the 668 overdoses in 2012 and a 21 percent increase over the 911 overdose cases in 2013.

Curbing the rising rates of opioid addiction and overdose throughout the state has been a focus of policymakers, with the signing of an addiction prevention and education law on March 14 coming as the latest step. The bill, which Gov. Charlie Baker called “the most comprehensive measure in the country to combat opioid addiction,” includes measures that limit new opiate prescriptions to seven days, allow a patient to receive a lesser-than-prescribed amount of a drug, and require evaluations of emergency room patients presenting with overdose symptoms.

Earlier this week, Baker said he wanted to see the federal government invest in researching and supporting the best way to treat addiction and support people in recovery.

The commission’s analysis found that access to medication-assisted addiction treatment, which combines behavioral therapy with the drugs methadone, buprenorphine or naltrexone to address a substance use disorder, varies widely throughout the state with “no clear relationship to the burden of the epidemic.”

According to the analysis, the Berkshires region had the highest rate of opioid-related hospital visits — 70 percent above state average — but patients there have “comparatively long” travel times for treatment. Thirty-three percent of Berkshire patients must travel more than five miles to a buprenorphine provider, and 39 percent travel more than five miles to a methadone clinic. The region has no naltrexone providers.

The upper North Shore has the lowest availability of medically assisted treatment, the report found, with no methadone clinics or naltrexone providers and the fewest buprenorphine providers per capita of any region in the state.

The commission found that in 2012, less than half of opioid-addicted adults and adolescents received medication-assisted treatment.

The number of additional medication-assisted treatment providers the state would need remains an unknown, Record said.

“Clearly, this is not the right supply, but how much more do we need is an unknown that the state needs to continue working out,” she said.

Related:

Narrating Medicine: How Cultural Differences Challenge Doctors

Narrating Medicine: How Cultural Differences Challenge Doctors

By Dr. Marjorie S. Rosenthal
Guest Contributor

The pediatric resident was frustrated.

On the exam table was a 6-month-old baby — quite overweight.  In fact, the child was heavier than an average 1-year-old. But his mother just laughed when the resident asked how she was feeding the baby.

When the resident and I looked at the medical record, we saw that for months residents had been discussing feeding with the mother. Telling her that she should stop formula feeding because her breast milk was more than sufficient. Telling her not to give solid foods because her breast milk was enough. And telling her that if she was going to give the baby formula or solid food, she should try to pay attention to when the baby’s cry means hunger and when it means a wet diaper or a need for attention.

Over one-third of adults and about 17 percent of children in the United States are obese. And since people who are obese have more high blood pressure, diabetes and heart disease than their peers, it’s not surprising that there are 11 million office visits per year for adults with obesity.

Yet according to a new CDC report, only 40 percent of these 11 million visits for obesity include a discussion of diet and exercise.

Dr. Marjorie Rosenthal (Courtesy)

Dr. Marjorie Rosenthal (Courtesy)

Many health care providers don’t want to talk to their patients about diet and exercise because they think the patients may feel judged. And sometimes doctors don’t talk about fitness and nutrition because they actually think talking won’t change anything. Which makes it safe to assume that office visits for obesity rarely include a discussion about the life experiences of the patients and the parents of patients. This suggests that a critical issue — and a key part of any treatment plan — is never addressed.

Parents’ medical history has always been an important aspect of a child’s medical care. But the central importance of all this has only recently emerged: New research has shown how life experiences affect brain development and hormone responses and how that affects parenting behavior and the health of the child in the next generation.

It’s hard enough to do this with families who speak English and come to the doctor’s appointment ready to talk about themselves. With this overweight 6-month-old, it was even harder: The resident was using a Swahili phone interpreter and the mother was a refugee. 

Interpreters are a vital but tricky part of office visits for families who don’t speak English. Professional interpreters (as opposed to family members interpreting) improve understanding and outcomes for the more than 20 million Americans who don’t speak English well but they aren’t always available. With this mother, speaking a language that is uncommon in New Haven, we used a professional phone interpreter — certainly better than no interpreter but over the phone cultural nuance and body language can be lost.

Knowing the mother was a refugee fleeing a Swahili-speaking country should have completely reframed our view of the patient’s weight. For U.S. children, our filter includes the statistics about childhood obesity and sugar consumption; but in this case, we should have employed a more global filter.

At the Yale/New Haven Primary Care Center we screen for familial social factors. For example, we screen all new mothers for depression, housing stability and safety. But it’s unclear how well the screening works when translated into the language and culture of this mother.

In our center, we have a designated refugee clinic where we ask about the whole family’s experience as refugees. But this child is not enrolled in that clinic because as pediatricians, we enroll children in the refugee clinic only when the child is a refugee. This 6-month-old baby was born here, in our hospital.

As an American child, he will benefit from the safe water supply, vaccinations and other preventive and public health aspects of the United States. While the health risks to childhood refugees include tuberculosis, under-nutrition, obesity and other chronic conditions, the risks to American-born children of refugees is less understood. Yet re-framing this patient’s story as an American child of a refugee woman, who may have experienced trauma and food insecurity, it makes sense that this child is being fed more than he needs.

While we don’t know exactly why this mother is feeding her baby this way, it doesn’t take too much of a leap to imagine that the mother’s prior experience with a limited food supply has led her to overfeed her child. Or that she is controlling what she can in her life — she can decide how much to feed the baby and she can probably stop his normal baby cries by feeding him. We don’t actually know what this mother was thinking — she was speaking Swahili to the phone interpreter and not a lot of it. She didn’t say any of this through the interpreter but to be honest, we didn’t ask.

Caring for the health of children means two-generation care. It means understanding the mental health, physical health and life experiences of the whole family.

Professional guidelines recommend that pediatric providers ask about parental experiences. Parents are usually OK with being asked about their own health, and the Affordable Care Act allows us to get reimbursed for asking and counseling about maternal mental health.

Yet, we don’t always ask. There often remains a sense that the family won’t want to talk about it or that we won’t change our treatment plan anyway, or that the patient won’t have access to the outside providers we refer them to.  Honestly, we don’t do as good a job as we could in considering how the whole family’s life affects that of the child. For the sake of babies like this one, we need to do better.

Marjorie S. Rosenthal, M.D., MPH, is assistant director of the Yale Robert Wood Johnson Clinical Scholars Program, associate research scientist in the Department of Pediatrics at the Yale University School of Medicine and public voices fellow with The OpEd Project.

mardi 22 mars 2016

Oral History: Bittersweet Memories Of A Cuban HIV Sanitarium

Oral History: Bittersweet Memories Of A Cuban HIV Sanitarium

Eduardo Martinez, who spent years in a Cuban HIV sanitarium, is seen on his Havana terrace. (Rebecca Sananes for WBUR)

Eduardo Martinez, who spent years in a Cuban HIV sanitarium, is seen on his Havana terrace. (Rebecca Sananes for WBUR)

President Obama’s visit to Cuba this week has highlighted the fading of U.S.-Cuba alienation — but also the deep and lingering differences between the two countries, on issues from freedom of speech to free health care.

Here, reporter Rebecca Sananes highlights a chapter of medical history in which Cuba chose a policy diametrically opposite to America’s: Back in the 1990s, Cuba created a network of sanitariums, where people with HIV were confined indefinitely. It sounds barbaric, but as former patient Eduardo Martinez’s recollections reveal, it’s complicated. Life in the sanitariums was so much better than outside that some people purposely infected themselves with HIV.

By Rebecca Sananes
Guest contributor

On a terrace outside his Havana apartment, Eduardo Martinez nurtures a small tree. On a recent sun-drenched tropical afternoon, he looks up at its streaked, shade-giving leaves fondly.

“I got it when I was in the sanitarium. I put it in my living room and it began to grow until it reached the ceiling,” he recalls in Spanish through a translator.

When he left the sanatorium in 1996, he took a clipping from the plant. “It was so small,” he remembers. “But it has turned into this forest that you have here — so this is a memento from that time.”

It was a complicated time — the early years of AIDS in Cuba, after the virus arrived on the island in 1986. The Cuban government created a system of 14 sanitariums around Cuba, where anybody who tested positive for HIV was sent for life. Eduardo became one of them in 1991, and is one of the only people of his sanitarium generation still surviving.

Today, his Havana apartment is adorned in paintings and awards accrued over a lifetime.

The sanitarium system was controversial. Critics called them prisons; supporters credited them with damping down the epidemic. Eduardo calls the sanitariums a double-edged sword.

“The purpose of the sanitarium was to stop the disease from being spread,” he says, “which was unsuccessful, because the disease continued to propagate.”

Only one sanitarium remains — the first one to open, the one Eduardo called home for five years in Santiago de Las Vegas outside of Havana. Now, the sanitarium is more hospital than quarantine, a voluntary clinic for those who need extensive HIV care.

Eduardo has lived with HIV for 25 years. “As compared to before, HIV today is like a cold,” he says.

Today, Eduardo puts on extravagant fashion shows and performances at the Tropicana — one of Havana’s most famous nightclubs — for audiences including the Central Committee of the Communist Party of Cuba.

When he’s on stage, he transforms himself into a towering blond woman named Samantha. But back in 1991, Eduardo thought he was at the end of his career — and possibly his life.

Eduardo Martinez holds a photo of himself as Samantha (the blonde on the left) with fellow performers. (Rebecca Sananes for WBUR)

Eduardo Martinez holds a photo of himself as Samantha (the blonde on the left) with fellow performers. (Rebecca Sananes for WBUR)

He had been a well-known designer, creating costumes for popular television shows and calling himself the ‘Christian Dior of Cuba.’ At the height of his career, on one of his costume tours, he had an affair with a dancer.

“He didn’t know that he had HIV,” Eduardo recalls. “And when the tour was finished, I came back to Havana and some months thereafter, I began to feel bad.”

A doctor-friend sent him for an AIDS test, which came back positive. But unlike many Cubans at the time, Eduardo had what he remembers as a good life: a booming career, and a family. For him, being sent to the sanitarium would mean this lifestyle was over. For a full year, he kept the diagnosis secret, as the doctor waited for room in a sanitarium. Finally, one day came a knock on his door.

“I didn’t want to go, but they would come for you and take you by force,” he recalls.

This unwillingness to go to the sanatoriums was not the case for all Cubans. In fact, some were actively infecting themselves with the virus because the facilities of the sanatorium were rumored to be beautiful and safe for the gay population.

Joel Perez, Eduardo’s longtime partner, who is also HIV-positive and spent time living in the sanitariums, remembers that though security guards protected the grounds, “many people went to the perimeters of the sanitarium to get infected with syringes. People always managed to get around and get inside the sanatorium in order to get the virus.”

In the sanitarium, Eduardo did have the rare luxury of living in one of the few places in the country that had air conditioning, livable apartments and reliable food. But he fell into a depression and spent a month living in a psychiatric ward.

“At first, it was very sad for me, because I didn’t understand why I was infected and why I had to go be interned in that place,” he says. “And on top of this, that was killing my career. I was at the top of stardom at that moment. I went on a hunger strike when I arrived.”

Soon, however, he reconciled himself to the idea that the sanitarium was his whole world for the foreseeable future. “I couldn’t just lie down there and wait for death,” he recalls. “I was an active professional. And I waged a revolution there.”

One of Martinez's few photos of the sanitarium (Rebecca Sananes for WBUR)

One of Martinez’s few photos of the sanitarium (Rebecca Sananes for WBUR)

So, tucked away from the rest of the world, “Samantha” was born.

“That was where I transformed myself for the first time” he reflects in his current Havana apartment filled with tiaras, blond wigs and trophies. “I needed a model in order to continue producing designs, and I just used myself as a model.”

But Eduardo did not just transform himself. He took his fellow patients — including the cover-art designer of then-President Fidel Castro’s books — and built a community of artists devoted to self-expression.

Eduardo began to change his attitude about the sanitarium: It was no longer his prison, but what he called his “big house.”

“I used everybody around me, I made fashion shows, I made a movie theater, I created theater, so I revolved everybody around me,” he says.

In many ways, he became a resident therapist, he says: “The patients were needing a lot of entertainment, distraction.”

He was even provided a budget and facilities from the sanitarium in order to put on his shows. “I came to discover that if I kept the mind of the patients busy, the immune system wouldn’t be depressed,” he recalls.

And while the gay community outside the sanitarium struggled against violence and discrimination, the sanitarium became a place of refuge. Eduardo praises the sanitarium doctors at the time as open-minded: “If they didn’t have an open mind, they would have to, because there were many gay people there,” he says.

Like the rest of the world, Cuba sought cures for HIV, and many patients in the sanitariums became the test subjects for potential cures. Eduardo was slated to be one of them before he opted out of a controversial experiment.

“It consisted of heating the blood in order to see if […] with the reheating of the blood, if the virus would die” he explains. “But the thing is that with this, not only would the virus die, but also the proteins would be put down.” The night before he was slated to go through with the test, he decided against it — a decision he now sees as a narrow escape: “The people who participated in it, all of them died.”

By 1995, the government could no longer afford to house HIV patients for life. Some patients left of their own volition and eventually the remaining patients were kicked out. Eduardo was one of the first patients to be offered his freedom, but just as it was difficult to go into quarantined life, it was hard to come out: “I refused to leave because I said I was too committed to the community inside the sanitarium,” he says.

But by 1996, he knew it was time to go. In spite of the homophobia and discrimination against those who were HIV-positive that persisted in Cuba, Eduardo persevered, and built what he now calls his second career — for which he partly credits the sanitarium: “That’s where Samantha started,” he says with a proud smile. “I was the first one who engaged in doing very daring things. Never before had there been cross-gender performers at Tropicana.”

When Eduardo thinks of the sanitarium these days, he cries. “What makes me sad is that those friends of mine that I had at those moments couldn’t reach this moment of happiness,” he says. The memories are poignant, bittersweet: “At that time, we would always dream if we had a theater to do our trans-shows,” he says. “We never thought it would be possible.”

And despite his hardships, he smiles. “I’m happy to have been able to reach this moment.”

Rebecca Sananes interviewed Eduardo Martinez while in Cuba recently on a student fellowship through the Pulitzer Center on Crisis Reporting.

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lundi 21 mars 2016

Warning: Flu Season Peak Hits Late This Year — Like Maybe Now

Warning: Flu Season Peak Hits Late This Year — Like Maybe Now

See those rising red triangles? That's this season. The CDC shows a rise in flu cases later than in previous years. (CDC FluView)

See those rising red triangles? That’s this season. The CDC shows a rise in flu cases later than in previous years. (CDC FluView)

It knocked me flat. Then it hit me with chills so violent only piles of blankets could calm them. It left me too weak to do anything but watch brainless TV all weekend, wondering how I’d become such a wimp that some garden-variety virus could lay me so low.

Then, Monday morning, my weekend misery suddenly all made sense.

“Believe it or not, flu season still hasn’t peaked,” said the email from Flu Near You, which crowdsources flu surveillance. “In most years, cases of the flu virus peak in February or early March, but as of this week, flu is still spreading and the height of it is not in sight yet, according to epidemiologists at the CDC.”

Aha. Nice to know that I wasn’t hit by sudden sloth. Though I got no lab diagnosis, chances are I was felled by the common virus that scares me most, far more than Ebola or Zika: the flu. Here on the Eastern Seaboard, we’d been largely spared our annual flu woes this year — until now. And nationwide, as of last week, flu reports were spiking in more than half of states, amounting to what’s looking like an unusually — though not uniquely — late peak to the flu season.

“This has been a really late influenza season,” Dr. Lynnette Brammer, an epidemiologist in the influenza division of the CDC, said in an interview. “If you go back and look at the last 33 seasons, only five of those have peaked during March, and none of them have peaked in April. We don’t yet know when influenza activity is going to peak this year. Data that we posted last week for the week ending March 12 showed influenza activity still increasing.”

Here in Massachusetts, case numbers are shooting up, as you can see on the graph below:

(Source: The Massachusetts' Department of Public Health's weekly influenza update, for March 18)

(Source: The Massachusetts’ Department of Public Health’s weekly influenza update, for March 18)

“We are definitely seeing an increase in flu activity, in the last week or two in particular,” says Dr. Larry Madoff, director of epidemiology and immunization at the state Department of Public Health. “We’re characterizing it as ‘moderate’ and ‘widespread’ in Massachusetts right now.”

And it does not yet seem to be abating.

“It still seems to be on the way up,” Dr. Madoff says. “Anecdotally, we’re hearing this from providers, from people in the community, and we’re certainly getting this from our sentinel networks and laboratory testing that flu is on the way up, so we don’t know when it will peak.”

On the positive side, he notes, it has been a milder flu season than usual until now. That may be in part because the predominant strain of the virus this year is H1N1 — remember the pandemic of 2009? — and the population has had time to build up some immunity to it, Dr. Madoff says.

Also, this year’s vaccine is a good match for the flu strains that are circulating, and is estimated as 60 percent effective.

So that’s the good news. The bad news is that if you thought you made it through winter flu-free, not so fast: You still have to weather spring.

A questionnaire from Flu Near You asks about symptoms. (Carey Goldberg/WBUR)

A questionnaire from Flu Near You asks about symptoms.

What might be causing this late flu peak? After an oddly warm winter here in Massachusetts, followed by an oddly warm then suddenly cold March, might climate be at work?

The short answer is that flu dynamics are highly complex and nobody really knows, but Dr. Madoff says the year’s weather is a possible factor.

“The weather has an impact and climate has an impact,” he says. “We know that flu is transmitted better during periods of cold weather and we certainly see that with the seasonality of flu every year. And it’s been shown that flu is better transmitted with dry cold air, and that certainly could have an impact, and it has been a mild unusual winter here.”

Whatever the factors involved, all the usual advice holds, from hand-washing to mouth-covering. And flu experts say that spring or not, it’s not too late to get a flu vaccine if you haven’t gotten one yet this year. Yes, the immunity takes a couple of weeks to kick in, but the flu season can be expected to last quite a bit longer than that.

Radio Boston’s Adam Asher spoke with Dr. Graham Synder, an infectious disease specialist at Beth Israel Deaconess Medical Center, about this late flu spike. Some excerpts:

What are some prevention measures people can take?

The most important thing every year is get the flu vaccine. It’s probably not too late to get the flu vaccine this year. We have some preliminary data that it’s almost 60 percent effective at preventing the flu. But even if you get the flu, the flu vaccine can help prevent it from being more serious than it might have been otherwise. So every single year it’s important to get the vaccine.

In addition if you feel like you have the flu, get in touch with your doctor. For some people, in fact for most people, including people with chronic conditions like asthma, lung disease, diabetes, obesity and people who are over 65 or pregnant, getting an antiviral can be quite important.

It’s also important if you’re worried you have the flu, or that someone in your family has the flu, to observe the right hygiene. Wash your hands often, and, if you’re in public particularly, cover your cough with the elbow, or cough or sneeze into a tissue and make sure you wash your hands afterward. We remind people all the time: wash your hands, wash your hands, wash your hands. And during the flu season I’ve recently sat in an airport next to someone who was just coughing out into the air. That’s a good way to pass the flu around. We want to make sure people are doing the right thing to keep it to yourself.

Has it surprised you, how many cases of the flu you’re seeing?

Well, there’s so much variability year to year, it’s almost never a surprise when we see something different happen. I would also add that … about two-thirds to three-quarters of the flu that we’re seeing is the same H1N1 that’s been circulating since the first outbreak in 2009 and almost entirely all the flu strains we’re seeing are protected by the flu vaccine this year.

One of the messages from the CDC this year is that it’s important to consider treatment. If you’re young, healthy, not pregnant and the flu you have is not so serious that you need to be in the hospital, an antiviral may not be indicated. We know it shortens the disease by a day or two, but you’ll probably get better. Everybody else … an antiviral medication may be helpful, even if it’s more than two days after you’ve had the disease. An antiviral can help reduce the risk of serious complications of the flu, especially people who are at high risk of complications.

Readers, have you been hit by the flu lately? (And was it like mine, only really bad for less than a day but then followed by days of striking lassitude and fatigue?)