mercredi 30 septembre 2015

Majority Of Young People With Depression Don’t Get Treatment, Report Finds

Majority Of Young People With Depression Don’t Get Treatment, Report Finds

A new national snapshot of the state of mental health across America is, frankly, a little discouraging, especially when it comes to young people.

One startling finding from the annual report produced by the nonprofit Mental Health America: “[S]ixty-four percent of youth with depression do not receive any treatment.”

In addition, the report found:

Even among those with severe depression, 63 percent do not receive any outpatient services. Only 22 percent of youth with severe depression receive any kind of consistent outpatient treatment (7-25+ visits in a year).

I asked one of our frequent contributors, child psychiatrist Dr. Eugene Beresin, executive director of the Massachusetts General Hospital Clay Center for Young Healthy Minds and professor of psychiatry at Harvard Medical School, for his thoughts on the report.

Here, lightly edited, is his response:

First, I am not surprised. There are a number of issues not emphasized by this summary:

1. There is a huge shortage of child and adolescent psychiatrists in the U.S. Currently there are about about 7,000.

So while many parents seek help, the access to care is severely limited. Primary care pediatricians are inadequately trained in psychiatry and this has been addressed by the American Academy of Pediatrics. Their graduate training requires only two months in developmental behavioral pediatrics and few have any significant training in psychiatry. They are desperate to make referrals and often are at a loss to find qualified clinicians. Some states such as Massachusetts and New York have statewide efforts to assist them through consultation and education in psychiatry, but this only scratches the surface.

2. The college situation is analogous. Up to 50% of students have psychiatric problems, and in large universities there is only about one certified mental health professionals to deal with 3,000 students. Only about 25% of students with problems seek help.

3. While there was legislation for parity in mental health services, this has been woefully inadequate. There is strong data that combining medication management with psychotherapy has better outcomes than either treatment alone for some serious psychiatric disorders. However, insurance covers unlimited visits for medication management ALONE and these visits tend to be 15-30 minutes. Psychotherapy visits that typically allow for 24 visits a year could include both. But this limits combined treatment to 24 visits a year maximum for most insurance policies. That is typically insufficient for many treatments.

4. Reimbursements through insurance for mental health treatment are very low compared with other care. Thus psychiatry in the outpatient sector is a huge financial drain on health care systems. And there is a great shortage of inpatient beds for youth and for very short lengths of stay. Often pediatric psychiatric facilities are overwhelmed with youth and families that are stuck without places to go.

5. Treatment for psychiatric disorders is as good as treatment for most medical disorders. However, the stigma of having a psychiatric disorder stops many people from seeking treatment. They are often too ashamed to seek help; or many believe that psychiatric disorders are untreatable, and thus they do not seek help. Other reasons for not seeking help is the fear that this will be on one’s permanent medical record — another aspect of the shame and embarrassment of having a psychiatric disorder.

But the data show that the lifetime prevalence (possibility) of developing a psychiatric disorder is about 24%. Thus one of the most common kinds of disorders in medical practice goes largely untreated. And it should be noted that most psychiatric disorders begin in youth (children through late adolescence and young adulthood). One would hardly avoid going to a doctor for asthma, migraines or other common illnesses and many who suffer from anxiety, depression, PTSD and other common problems do not seek help.

mardi 29 septembre 2015

Why To Exercise Today: Possible Decreased Suicidality, Sadness For Bullied Adolescents

Why To Exercise Today: Possible Decreased Suicidality, Sadness For Bullied Adolescents

How much better can exercise make you feel?

A new study suggests that the mood boost may be profound.

The nitty gritty of the study is that researchers at the University of Vermont report a 23 percent reduction in both suicidal thoughts and suicide attempts among bullied students who exercise four or more days a week. The analysis of national data from the Centers for Disease Control and Prevention showed that across the board, frequent exercise was associated with improved mood for adolescents, both bullied and not.

It’s important to note that the study shows an association only between exercise and improved mental health. Still, lead author Jeremy Sibold, an associate professor at the University of Vermont, and chairman of its Department of Rehabilitation and Movement Science, says this is an important first step. It…”shows a critical relationship between exercise and mental health in bullied adolescents,” he says. “These data do not prove that exercise will reduce sadness or suicidality, but certainly support more research in this area.”

Nick Tonkin/Flickr

Nick Tonkin/Flickr

The study, published online in the Journal of the American Academy of Child & Adolescent Psychiatry, concludes:

Physical activity is inversely related to sadness and suicidality in adolescents, highlighting the relationship between physical activity and mental health in children, and potentially implicating physical activity as a salient option in the response to bullying in schools.

An accompanying editorial, by Dr. Bradley D. Stein and Tamara Dubowitz of The Rand Corporation in Pittsburgh, says,

“…the evolving literature suggests that physical activity interventions appear to be potentially promising as preventive interventions for some children and adolescents at risk for developing mental health disorders and for augmenting more traditional interventions for children and adolescents being treated for depressive and anxiety disorders and attention deficit/hyperactivity disorder.

The “side effects” of such physical activity interventions are likely to be more positive for many children than those of many other therapeutic interventions and potentially less costly…”

I asked Sibold a few questions about the study. Here, via email, are his answers:

RZ: What’s the biggest surprise in the findings?

JS: We were not surprised really that exercise was associated with less sadness, etc., as exercise has been widely reported to have robust positive effects on a range of mental health markers.

However, our statistics were quite rigorous, and to see the positive associations extend to victims of bullying, including those who report suicidal behavior, was certainly a pleasant surprise and a first in the field we believe. It is also quite concerning that 25 percent of students overall report being bullied in the last year. This is a concern we cannot ignore in our schools.

What would you tell parents based on this study?

I would make sure that parents who read or hear about these results understand that this study is reporting associations between variables. In other words, this was not an interventional study. This is, however, an important first step in the research literature that shows a critical relationship between exercise and mental health in bullied adolescents. These data do not prove that exercise will reduce sadness or suicidality, but certainly support more research in this area.

We are continuing to explore exercise as one of several interventions in at-risk children as part of the evidence based treatment programming at the Vermont Center for Children, Youth and Families.

The other thing I would encourage parents to do is to educate themselves and their families on the benefits of exercise as part of an overall plan for child and family health. Too many children are falling into sedentary habits, and our paper certainly supports the consideration of including exercise and physical activity as part of the response to mental health concerns in our kids.

Of course, parents should speak to their children’s physician(s) about this and should not assume that exercise should replace any other treatment at this time.

Any other important points?

In a world where sedentary activity and its consequences are continuing to increase at alarming rates, and where bullying continues to burden children often resulting in dire consequences, this paper is the first to report on the well-established positive effects of exercise on mental health in bullying victims. Should these data prove to be true in subsequent research, exercise would represent a largely safe, economical and highly accessible potential treatment option as part of the public health response to bullying victimization.

Here’s more from the University of Vermont news release:

Across the U.S., nearly 20% of students report being bullied on school property. Bullying is associated with academic struggle, low self-esteem, anxiety, depression, substance abuse, and self-harm. Exercise has been widely reported to have robust positive effects on mental health including reduction in depression, anxiety, and substance abuse.

Using data from a nationally representative sample of youth who participated in the National Youth Risk Behavior Survey (CDC), a group of researchers…examined the relationship between exercise frequency, sadness, and suicidal ideation and attempt in 13,583 U.S. adolescents in grades 9-12. The authors hypothesized that exercise frequency would be inversely related to sadness and suicidality and that these benefits would extend to bullying victims.

Overall, 30% of students studied reported sadness for 2 or more weeks in the previous year; 22.2% and 8.2% reported suicidal ideation and suicidal attempt in the same time period. Bullied students were twice as likely to report sadness, and three times as likely to report suicidal ideation or attempt when compared to peers who were not bullied. Exercise on 4 or more days per week was associated with significant reductions in sadness, suicidal ideation, and suicidal attempt in all students. In particular, the data showed a startling 23% reduction in both suicidal ideation and suicidal attempt in bullied students who exercised 4 or more days per week.

Based on these findings, the authors concluded that exercise may represent a safe, economical, and potentially highly effective option in the response to bullying in schools.

lundi 28 septembre 2015

Mass. Doctors Join To Vent Frustrations With Electronic Health Records

Mass. Doctors Join To Vent Frustrations With Electronic Health Records

(breaktheredtape.org, posted with AMA permission)

(Courtesy http://ift.tt/1MC2lZu Medical Association)

“Imagine,” said Dr. Steven J. Stack, president of the American Medical Association. “In a world where a 2-year-old can operate an iPhone, you have graduate-educated physicians brought to their knees by electronic health records.”

Has anyone ever summed up better the monumental frustrations that many doctors encounter when grappling with electronic medical records?

And those frustrations have only been growing as federal requirements for electronic medical records have kicked in and grown teeth — to the point that the AMA has now launched a campaign — called Break the Red Tape — to call for a pause on new medical-record rules.

As part of that campaign, the Massachusetts Medical Society has called a town hall meeting at its Waltham headquarters Tuesday night to let doctors vent.

Not that it’s a Boston Tea Party kind of thing.

“It’s not that every physician wants to throw their electronic medical records into Boston Harbor,” said Dr. Dennis Dimitri, president of the Massachusetts Medical Society. “In fact, physicians have been incredibly rapid in their uptake of implementation of electronic medical records. We have over 80 percent in the state now having implemented electronic medical records. But the dissatisfaction comes around the fact that the electronic medical record has not been the panacea that many might have hoped it to be.

“In fact,” Dimitri continued, “it has added significant time to the daily life of most physicians in their practices. It has not necessarily lived up to expectations in terms of its ability to provide cues to physicians to make sure that necessary treatments are not being missed. It has certainly not been able to swiftly disseminate information from one clinical setting to another. So those are some of the things we hope we’ll hear about, better understand the problems that face physicians, and then come away from this with a plan of how we ask for help in solving these problems.”

That inability to cross from one clinical setting to another that Dr. Dimitri mentioned is known by the cumbersome term “interoperability,” and even Sen. Elizabeth Warren is talking about it these days.

“Today, after a federal investment of more than $30 billion, most medical records are digital. But there is a huge problem. These programs still don’t talk to each other very well,” she said at a recent hearing. “That means that too many patients who try to access their records, or who try to transfer from one doctor to another, can’t do so electronically. This lack of interoperability imposes other costs – wasted medical tests, wasted time and wasted money.”

And meanwhile, where once there were only incentives to adopt electronic medical records, now there are penalties for those who resist or fail.

“More than half of the physicians who bill Medicare in the country are currently being penalized 1 percent of all their payments this year, in 2015, as a result of the Meaningful Use program,” AMA President Stack said, referring to the federal standard requiring that electronic medical records be used in certain “meaningful” ways.

“When you have more than a quarter million physicians being penalized by the government, by a single program,” he said, “I think that most people will understand the math: It’s not the 250,000-plus physicians that are the problem, it’s most likely the single program that they are being punished by.”

By one estimate, those penalties could already be amounting to $200 million this year.

Massachusetts is not the first state to host an AMA-backed town meeting for airing experiences with electronic medical records. Atlanta hosted one this summer, prompting headlines like “AMA docs fed up with EHR woes.” 

Dr. Stack says Boston comes next in part because it’s such a hotbed of medical technology and innovation. So will Boston tech hotshots unravel the frustrating knots of the electronic medical record problem?

They’re already working on it. One of the speakers at the meeting Tuesday night is Dr. Ken Mandl, of Harvard Medical School and Boston Children’s Hospital. He’s part of a team that has federal backing to figure out a way to make your electronic health record resemble your iPhone — a standard platform that can run apps.

“It’s really the difference between something like Google Maps and a paper map,” he said. “By opening up the electronic health record to the full power of computation and storage and data mashup, we’re really going from paper maps to Google Maps in terms of what the experience is at the point of care.”

Mandl sees grounds for optimism that electronic health records really will get better — perhaps worth keeping in mind if you feel weighed down by problems that seem to lack solutions as you listen to the town meeting.

Several hundred doctors have signed up to be either at the Massachusetts Medical Society headquarters in Waltham or online, and the event will be live streamed here.

Readers, thoughts? Health record experiences?

‘Dealing With The Immediate Crisis': What It's Like For EMTs Responding To Overdose

‘Dealing With The Immediate Crisis': What It's Like For EMTs Responding To Overdose

Boston Emergency Medical Services Deputy Superintendent Edmund Hassan (Jesse Costa/WBUR)

Boston Emergency Medical Services Deputy Superintendent Edmund Hassan and his colleagues regularly revive people struggling with drug addiction from overdose. (Jesse Costa/WBUR)

His ambulance sirens blaring and several police scanners transmitting information simultaneously, Boston Emergency Medical Services Deputy Superintendent Edmund Hassan is speeding to a call that someone is unconscious. Because his workers administer the overdose reversal drug naloxone (more commonly known by its brand name, Narcan) about three times a night, he suspects it’s an opioid overdose.

The radios crackle, and it’s confirmed: an overdose. Additional workers are dispatched to the scene.

Hassan stops at a single-family home in South Boston. A team of emergency workers and firefighters is already there. Several people are running to the back of the house and down some steps into the basement. In the far corner, a middle-aged man is on the ground, two people are sobbing nearby. The crew rushes to administer the Narcan, squirting it into the man’s nose.

“OK, he’s getting some Narcan now,” Hassan explains to a woman standing nearby clenching her arms around her body. “You just found him here?” he asks.

“Yes,” she say, tears in her eyes. “He’s my husband.”

She tells Hassan that she hadn’t seen her husband for about an hour and a half while she and her son got a sandwich nearby. When they came home, her son found his father in the basement unresponsive, his lips turning blue. A teenage boy standing nearby nods, and a young girl comes into the basement and starts to cry loudly.

“Take her upstairs please,” the man’s wife yells to a neighbor, who had also arrived.

“Has he ever used heroin before?” Hassan asks her.

“A long time ago,” the man’s wife says. “I thought he stopped.”

We are not identifying the man because of medical privacy concerns. He’s thin and pale with closely shaved gray hair, wearing a white T-shirt, shorts and work boots. Hassan leads the team monitoring the man.

“He’s breathing about six to eight times a minute. He’s got good vitals. Maybe if we give him a few more minutes,” Hassan tells them.

The emergency workers massage the man’s chest, clap their hands in front of his face, yell his name and adjust a plastic ventilator over his mouth and nose to try to get him breathing again. Hassan explains that an overdose slowly shuts down a patient’s respiratory system so the man needs help breathing until the Narcan kicks in.

After almost five minutes, the man’s wife tearfully asks if he’s going to be OK. Why isn’t he waking up? Why do his eyes look as if they’re rolling into the back of his head?

“In all likelihood, he’s going to wake up in a few minutes. OK, listen to me. The guys are going to breathe for him,” Hassan says.

Hassan opens a nearby drawer and finds a used hypodermic needle. The crew continues working, almost willing the man to come to.

“C’mon bud, open your eyes, let’s go,” they yell to him. The minutes go by slowly, and there is a palpable sigh of relief when the man’s eyes suddenly open and he groans.

“I’m OK,” he says, “I was just sleeping.”

The EMTs remove the ventilator and quickly lift him to his feet. The man staggers a bit, held up on each side by a medical worker as they walk him out front to an ambulance.

He Wasn’t Sleeping, But Narcan Woke Him Up

“We’re going to the hospital now. Let’s walk out,” Hassan says. The man mumbles that he doesn’t want to go the hospital. He says he doesn’t want his neighbors to see him get into an ambulance. He is not sick, he tells Hassan as they slowly walk outside, he had just fallen asleep.

“All right, well I’m not going to argue with you,” Hassan says. “But we all know what happened. Your poor wife is heartbroken.”

“Who called you?” the man asks. “Who found me?”

“Your son,” Hassan answers.

“Ah, man,” the man sighs and hangs his head, obviously disappointed in himself.

The man’s son gets in the front seat of the ambulance and the man is strapped into a stretcher in back. The man tells a paramedic that nothing is wrong, he had just been taking a nap.

“No, no, no, you weren’t asleep,” the paramedic tells him. “You weren’t breathing at all, you were unconscious.”

During an eight-minute ride to the hospital, the man admits he used about a quarter gram of heroin.

“Were you feeling bad?” the paramedic asks. “Depressed?”

“No,” the man says, closing his eyes.

“Have you ever been given Narcan before?” the paramedic asks.

“No,” the man says.

“Well, that’s what happened tonight,” the paramedic says. “You did some heroin, we gave you some Narcan to wake you up. It woke you up.”

At the emergency room the man’s son jumps out of the ambulance, walks to the stretcher and takes his father’s hand.

“I’m glad you’re alive, dad,” he says.

“Thank you,” the man responds.

Deputy Hassan says the ER team will take over from here.

“Essentially for EMS our job is done,” Hassan says. “So as EMS providers, this call is a success. In the big picture of health care, is it a success? Well, no, it’s incomplete right now. For it to be a total success he’d get into a rehab program and never do heroin again.”

After A Narcan Revival, Most Don’t Get More Treatment

But that’s not what usually happens. Joseph, 31, who didn’t want his last name used, also credits Narcan with saving his life — more than once.

“I’ve been revived by Narcan about four to five times in my life. I’ve overdosed many more times than that,” Joseph says. He disputes any suggestion that Narcan may encourage even more reckless drug use. He says opioid addiction is so powerful that the risk of dying seems worth it. Besides, he says, being revived by Narcan is a difficult experience.

“It’s horrible. The worst withdrawals you ever felt in your life,” Joseph explains. “You feel like you want your high back, almost. You just wanna die, you know. It’s that bad.”

Naloxone nasal spray (Jesse Costa/WBUR)

Naloxone nasal spray, also known as Narcan, is used about three times a night by Boston EMS workers to revive people overdosing from opioids. (Jesse Costa/WBUR)

Joseph also says most times he’s been taken to the hospital he’s been discharged after only about three hours, without any recommendations about getting further treatment.

“They let you kinda sleep it off,” he says. “They just discharge you and they tell you you need to get help, you need to do something.”

Many ER doctors say that after a Narcan revival, if a patient appears to be breathing fine and walking, they are discharged after a few hours. Many are so sick and uncomfortable they just want to leave. Even if they do want treatment, access is limited by availability and insurance.

“For myself, basically, they’d have to be able to walk safely, be able to have a conversation, be able to take fluids before they’re released,” says Dr. Edward Bernstein, an emergency physician at Boston Medical Center. He says often after a Narcan revival, a patient is released after just two hours. Before they leave, most patients are given their own Narcan kit and information about further treatment. But he says less than half of the overdose patients revived with Narcan at BMC go on to get further treatment — often because there are no beds available.

“You do feel helpless,” Bernstein says. “Especially since we’re trying our best, and we have all these different tools now.”

What can also make health care providers feel helpless, Bernstein says, is repeatedly using Narcan on the same patient. He says about 30 percent of those revived with Narcan at BMC have been revived there more than once, and about 10 percent of patients more than three times. But he says that doesn’t mean Narcan isn’t working. He believes the repeated revival rate reflects the stigma of substance use and blaming the patient, rather than treating the problem like other chronic diseases.

“Asthma, hypertension, heart failure — we see these folks back numerous times. It’s hard to control a chronic condition, so I’m not surprised people with opiate addiction and other addictions come back to the emergency room more than one time,” Bernstein says. “We have to work on basically one day at a time, one step at a time, one life at a time. I think it would’ve been a lot worse if we hadn’t had all these things in place.”

But Bernstein says he’s often encouraged by patients’ resilience and stories of recovery — often after dozens of relapses. Hassan, with Boston EMS, agrees. He too has often had to revive the same person with Narcan and he says it’s likely the man he just revived has been revived before. But Hassan doesn’t consider that a defeat.

“Our job is as EMTs and paramedics, we’re dealing with the immediate crisis,” Hassan says. “We got him breathing again — that’s a victory for us, but it’s a very small victory. I guess it’s one small battle in a very big war.”

It appears the war is raging, even though Narcan has recently become more widely distributed. The federal Centers for Disease Control says the use of Narcan has increased by almost 200 percent in the past five years. Massachusetts, which was one of the first states to expand the use of Narcan, now provides funding for it to dozens of police and fire departments and more than 70 school nurses.

In the first eight months of the year, Boston EMS administered Narcan to 781 patients. Last year, it was 445 patients during that same time. Yet the state’s overdose rate has not budged. Health officials say the death rate in Massachusetts climbed last year, with three to four people dying of an opioid overdose every day.

Related:

vendredi 25 septembre 2015

Cancer Drug Mark-Ups: Year Of Gleevec Costs $159 To Make But Sells For $106K

Cancer Drug Mark-Ups: Year Of Gleevec Costs $159 To Make But Sells For $106K

A new study finds that a year's supply of Gleevec , a leukemia drug, (generic name imatinib), costs about $159 a year to make, but the yearly price tag is $106,322 in the US and $31,867 in the UK. (Photo: Wikimedia Commons)

A new study finds that a year’s supply of Gleevec (imatinib) , a leukemia drug, costs about $159 to make, but the yearly price tag is $106,322 in the US and $31,867 in the UK. (Photo: Wikimedia Commons)

By Richard Knox

The rocketing cost of prescription drugs garners almost daily attention lately. Polls say it’s high on the list of Americans’ health care worries; presidential candidates are calling for sweeping reform; a storm erupts when one company jacks up the price of an HIV drug by 5000 percent.

And now, research reveals the yawning gap between the price of widely used cancer drugs and their actual cost.

The true cost – what drug makers have to spend to get those pills to your local pharmacy – is made up of the active ingredient and other chemicals, their formulation into a pill, packaging, shipping and a profit margin.

British researchers, in a report to be delivered this weekend at a European cancer conference, say the price of five common cancer drugs is more than 600 times higher than they cost to make.

For instance, the analysis figures the true cost of a year’s supply of Gleevec (generic name imatinib), used to treat certain kinds of leukemia, at $159.

But the yearly price tag for Gleevec is $106,322 in the US and $31,867 in the UK. A generic version costs about $8,000 in Brazil.

“We were quite surprised just how cheap a lot of these cancer drugs really are,” pharmacologist Andrew Hill of the University of Liverpool said in an interview. “There’s a lot of scope for prices to come down.”

Hill’s team got the ingredient costs from a public data base called IndiaInfoDrive.com. The Liverpool group did the same analysis for four other drugs in the same class, called tyrosine kinase inhibitors or TKIs. They’re used to treat lung, breast, liver, pancreas and thyroid cancer as well as leukemias. Their names are Tarceva (erlotinib), Nexavar (sorafenib), Tykerb (lapatinib) and Sprycel (dasatinib).

The true yearly cost of these four drugs ranges from $236 for Tarceva to $4,022 for Tykerb. But their US sticker prices range from $78,797 to $135,679.

The analysis has implications beyond the United States. Hill says more than a million cancer patients around the world meet criteria for taking the five TKI pills. “Very few of them are being treated now,” he says, because the drugs are so expensive.

A 100-fold rise

And the implications stretch way beyond these specific cancer drugs. Overall prices for cancer medications have been going up at a fast clip. Dr. Peter B. Bach of Memorial Sloan Kettering Cancer Center in New York has documented a nearly 100-fold increase in cancer drug prices since 1965 after adjusting for inflation.

“The rate of rise exceeds the rise in benefits from these drugs,” Bach says. “This is a ginned-up pricing structure that isn’t a product of careful analysis. It’s not a bunch of guys in green eye-shades but a bit of dart-throwing and chutzpah. And if there’s a critical Op Ed piece or a Twitter avalanche [in response to a high price] they’ll lower it.”

Bach speaks from experience. Three years ago, he and two other colleagues announced in a New York Times Op Ed piece that Memorial Sloan Kettering would not be prescribing a new colon cancer drug because it didn’t improve outcomes despite its high price tag. The manufacturer responded by halving the price.

That’s also what happened this past week when the CEO of Turing Pharmaceuticals announced a rollback of the $750-per-pill price of a drug called Daraprim, needed by some HIV patients, following a public outcry. The pill previously cost $13.50 apiece. The company didn’t say what the new price will be.

Meanwhile, another controversy is brewing over the cost of a new class of cholesterol-lowering drugs called PCSK9 inhibitors. They can lower cholesterol levels by 60 percent, but they cost more than $14,000 a year – far more than older so-called statin drugs taken by millions of Americans.

A Boston-based group called the Institute for Clinical and Economic Review this month published an analysis that concludes the new drugs should be priced at least 67 percent less, based on their likely benefit and the ability of insurers to absorb the potential cost.

A systemic solution?

But a drug-by-drug debate won’t solve the overall problem of skyrocketing prices. So there are stirrings of more systematic ways to tackle it.

The Obama Administration is reportedly working on a drug price-control scheme.

Hillary Clinton, who tweeted sharp criticism of Turing Pharmaceutical’s price hike of Daraprim, last week issued a sweeping proposal to control prices. And her Democratic rival for the presidential nomination, Bernie Sanders, is hot on the issue.

“We’ve spoken with Bernie Sanders’ advisers and shown him our results with HIV, hepatitis and cancer drugs,” Hill says.

But controlling drug prices promises to be a battle royal. The pharmaceutical lobby is one of Washington’s most powerful.

Drug companies warn that regulatory action to lower prices would threaten their ability to innovate and will deprive Americans of important new drugs.

Clinton’s proposal to regulate drug prices “would restrict patients’ access to medicines, result in fewer new treatments for patients, cost countless jobs across the country and could end our nation’s standing as the world leader in biomedical innovation,” the Pharmaceutical Research and Manufacturers Association says.

But even industry critics like Bach have some reservations about the way Clinton would go about medication price reform. For instance, she proposes to require drug companies to spend a certain proportion of their revenue on research and development – a line item that now takes a back seat to sales and marketing.

Bach says Clinton’s approach buys into the industry’s argument that there should be a premium on its pricing to pay for R&D.

“Pharma uses the language of a regulated monopoly like utility companies, which argue that they need to be compensated for infrastructure costs,” Bach says. “Apple never says ‘We charge $600 for an iPhone because of our research.’ Or Ford never says a Taurus costs X dollars because of its R&D.”

Bach also rejects the frequent industry claim that high drug prices are justified by the amount of money they potentially save in avoided hospitalization or transplants for patients who would otherwise need expensive care.

“That argument is unique to the pharmaceutical industry,” Bach says. “Can you imagine if Poland Spring priced their bottled water to include the value of avoiding cholera? Or if the price of condoms included the cost of an avoided pregnancy?”

 Readers? Reactions?

To Help Combat Drug Abuse, Drop Off Your Old Medications At Drug Take-Back Day Saturday

To Help Combat Drug Abuse, Drop Off Your Old Medications At Drug Take-Back Day Saturday

Gov. Charlie Baker is urging residents to take part in Saturday’s national drug take-back day by dropping off their old or unused prescription medications at one of the state’s 170 participating sites. (e-MagineART via Flickr)

Gov. Charlie Baker is urging residents to take part in Saturday’s national drug take-back day by dropping off their old or unused prescription medications at one of the state’s 170 participating sites. (e-MagineART via Flickr)

Gov. Charlie Baker wants you to clean out your medicine cabinet this weekend.

Baker is urging residents to take part in Saturday’s national drug take-back day by dropping off their old or unused prescription medications at one of the state’s 170 participating sites.

Across the state on Saturday, sites from schools to police stations to senior centers will be accepting prescription drop-offs from 10 a.m. to 2 p.m. Collection sites can accept any pills or patches, but no liquids or needles.

“I urge the Commonwealth to open their medicine cabinets and take advantage of this convenient and effective program in your communities,” Baker said in statement released Friday. “Medications can be misused, and as we’ve seen with the opioid crisis, the results can be deadly.”

Holding and promoting drug take-back events was one of several recommendations from the governor’s Opioid Working Group, which was charged with coming up with ways to help stem the opioid addiction crisis in the state.

“Certain medicines that are left lying around, such as painkillers, are highly susceptible to being stolen and sold on the street,” Lt. Gov. Karyn Polito said in the statement. “This free service addresses a vital public safety issue. Old prescription drugs can be dropped off – no questions asked.”

A full list of participating sites is available here.

How I Was Seduced By Cigarettes, And What Set Me Free

How I Was Seduced By Cigarettes, And What Set Me Free

By David C. Holzman
Guest Contributor

More than half a century has passed since Luther Terry released the landmark U.S. surgeon general’s report on smoking and health.

Since then, smoking in the U.S. has declined dramatically. Nonetheless, roughly 50 million Americans still smoke.

Tobacco’s ‘Fantastic Voyage’

If anyone should have been immune to taking up smoking, it was me.

As a prepubescent child, I absorbed the lessons about the importance of living healthily that my parents instilled. At age 10, I got them to quit smoking after the first surgeon general report came out — although I’m sure they would have done it on their own, if not quite as quickly. Early on in my writing career, I wrote a “fantastic voyage” article about all the carcinogens in tobacco, where they went in the body, and what nefarious things they did when they got there. Little did I ever suspect I would become briefly but definitely addicted.

The germ of the habit occurred when I was medical writer for Insight Magazine. Dennis, the head copy editor, smoked like a chimney.

The author, smoking at his sister's wedding in June 1991 (Photo illustration courtesy of the author)

The author, smoking at his sister’s wedding in June 1991 (Photo illustration courtesy of the author)

“How’s that cigarette?” I’d tease him every morning when I arrived at work. “Not long enough!” he’d say. Or, “Not as good as the first one.” It became our way of bonding.

One day he said, “You want to try it?”

Curious, I took a puff. It gave a powerful kick, like a turbocharger. But it was not something I felt I needed.

But one Sunday, a few years later, I needed it. I’d gone to the car races at Summit Point, West Virginia, with my friend, Don, a former racer, and his wife Eva, who smoked. I’d slept little the week before, and D.C., where I lived at the time, was being its usual oppressively hot, humid summer self. By mid-afternoon I’d gotten so sleepy that I was getting ready to curl up in the back of my car and snooze. Then I remembered Dennis’ cigarette. I asked Eva if I could finish one of hers. A couple of puffs, and I was wide awake, once again enjoying being with my friends.

My FDA Cigarette

Around this time, I was working for daily biotech news publication, regularly covering meetings of the Advisory Committee to the head of the Food and Drug Administration. These meetings were boring. They took place in a windowless room of the incredibly ugly, mid-’50s institutional style Parklawn building. As soon as they started, off went the lights, and on went the Powerpoints.

At that point, no matter how much coffee I’d had, my head would start to sag.

So the next time I had to cover one of these meetings, I bummed a cigarette. I took several puffs, and then tossed it. This time, I remained painlessly alert after the lights went out.

I took to bumming cigarettes while I waited for the FDA meetings to start, and ultimately I bought my own pack.

It lasted me at least three years. I never smoked outside of an FDA meeting, despite the fact that my brain functioned so well on nicotine.

At least not until the spring of 1998. That year was fixing to be a bad one. My relationship with Mary, which had begun almost a year earlier, with lots of sex, followed by hours-long conversations, had faltered after a couple of months, and gone seriously south during that September. Unable to see that we were truly a terrible match, we worked to try to resurrect the wonders of the first six weeks with a therapist who I can only figure was simply happy to take our money.

As someone who wrote fairly widely about smoking, I knew that people with ADD self-medicated with cigarettes. So one morning, I tried taking a few puffs from my second FDA pack, just before starting work. A few puffs after breakfast soon turned into a few puffs several times a day, and after a couple of months, I was actually smoking three cigarettes a day.

A Seduction, With Espresso

To understand its seductive powers, think of a cigarette as your lover who comes up behind you and massages your shoulders, or gives you a warm hug. And at the same time, as an idealized cup of espresso that goes off like a symphony in your mouth. There’s actually a scientific book on all this called “Smoking: The Artificial Passion.” Despite the author’s warnings about 2 million deaths annually, he makes smoking sound alluring. Or as a doctor once said to me, “Nicotine is a great drug. It’s just that the cigarette is a terrible drug delivery device.”

And so it was that I became hooked. I didn’t consider myself a smoker; yet I realized I couldn’t easily stop. And here I was, in August, on Cape Cod, staying with my parents for a month, my office installed in their summer house, and I was sneaking cigarettes in the backyard. It was crazy. So one day, I decided I would stop.

That effort began on a Sunday, and lasted one miserable week. The following Saturday I was driving up to southern New Hampshire, for a friend’s 50th birthday party, a fun occasion where I knew I would meet a lot of great people. And here I was, in my beloved sporty car, with five on the floor, driving (my favorite nonsexual and nonsocial activity) to this wonderful event. And I was ready to cry. So I stopped at a convenience store and bought a pack. I opened it, pulled out a nicotine stick, pushed in the cigarette lighter — something that all cars used to have — and mated the two. I took a puff, and immediately felt my body become infused with peace and love.

(That metaphorical peace and love is in part a reduction in aggression and irritability, according to “The Artificial Passion.”)

I realized that it was the wrong time for me to quit. I would have to wait for my life to improve before I made another attempt. And perhaps this is a lesson for other would-be quitters.

Meanwhile, during the fall, my relationship was slowly unraveling. Sex, which was rare, all but ended, and in mid-October, Mary decided we would no longer even spend nights together, although for some screwy reason we were still talking about how we would try to pull ourselves back together again.

(Obviously, we should have split up already, but behavioral economists tell us that most people are more afraid of loss than they are optimistic about gain, and I am perhaps particularly loss-averse when it comes to the people in my life.)

Then, at a Christmas party in early December, I met a woman who made her interest clear. She approached our coupling with an enthusiasm I hadn’t known in almost a year and a half, hugging me and caressing me, and in turn, giving herself to all my desires. I felt wanted and wonderfully satisfied.

After that first night, I didn’t even think about the cigarettes anymore. I never smoked another one.

David C. Holzman writes from Lexington, Mass., on science, medicine, energy, environment and cars. He is Journal Highlights editor for the American Society for Microbiology and won a Plain Language/Clear Communication Award in 2011 from the National Institutes of Health.

After 7 Overdoses, Joey Searches For A Reason Why He’s Still Here

After 7 Overdoses, Joey Searches For A Reason Why He’s Still Here

Joey feeding the birds in the morning in Bellingham Square. (Jesse Costa/WBUR)

Joey, who recently started using methadone to try and kick his heroin addiction, feeds the birds in Bellingham Square in Chelsea. “People say that you OD two or three times, the third time you usually die. I OD’d seven times and I’m still here, so someone up there is watching me,” he says. “Someone has a purpose for me or a plan, but I keep waiting for that purpose of plan or purpose and I can’t find it.” (Jesse Costa/WBUR)

It’s the first few minutes of the early morning that are really hard for Joey. For about nine years, until just a few months ago, he’d wake up — in a bed or on a park bench or under the Tobin Bridge — and immediately put a needle in his arm.

“I would always save a shot of heroin for myself for the morning to get myself going,” Joey, 47 says — just enough to keep the vomiting and tremors of withdrawal at bay. (He asked that we only use his first name because he’s still using the drug, and dealing a little, and we agreed.)

Joey says he misses the whole morning routine in a small way — like how some people crave the smell, look and taste of coffee in the morning. His face softens as he describes “opening the bag, pouring [heroin] in the cooker, pouring the water in it, drawing it up, seeing the blood in the needle, that’s all a part of the high,” he said — all part of the anticipated euphoria, all part of the power of heroin.

Joey sleeps these days on a couch in a Chelsea apartment that’s become a sort of crash pad for a few current and former heroin users. To avoid the cravings, he’s up and out before 7 a.m., seven days a week. With his long, lanky stride, it takes Joey 15 minutes to reach a methadone clinic in a white concrete building with barred windows where he’s been a patient since late June.

Joey on his way to his methadone treatment at C.S.A.C. (Jesse Costa/WBUR)

Joey has been a patient at a methadone clinic since June. He says it’s the first time he’s been almost off heroin or OxyContin in more than 20 years. (Jesse Costa/WBUR)

“I been trying to quit this shit for probably 16 years and nothing’s ever worked,” Joey says, in one of a series of recordings he made for this story. “I been in and out of detox, I can’t count how many times I’ve been to detox.” He estimates it’s probably more than 100. Sometimes he really wanted to quit; other times he just wanted a clean, dry, warm place to sleep.

He’s lost track of the number of programs he signed up for, the halfway houses or sober houses he moved in and out of, the 12-step programs he attended, leaving early to fulfill drug cravings.

“Nothing ever worked,” Joey says. “I went to detox this last time and the guy said, ‘Joey, just try the methadone clinic, give it a shot, if it don’t work you can always come off it.’ So I tried and guess what? It’s the best thing I ever did.”

The daily clinic routine that Joey describes is strict, sometimes impersonal — though clinic management disagrees with his perception.

Joey says he approaches the clinic, looking for a signal from the building security guards.

“If there’s like 20 to 30 people already inside, we have to wait outside,” he explains. “So we look at the guards, if they put their hands up like a cross that means there’s a hold. We have to go to a back parking lot to form a line and they let us in like five to 10 at a time.”

Joey says the guards keep track of patients who misbehave, swear or violate any rules about the use of methadone, a synthetic opiate. (For treatment of opiate addiction, methadone is only available at clinics regulated by the federal government.)

“It’s a three-strike rule and then after three strikes [the security officers] throw you off the property,” Joey says. “They’re real serious, you know, they don’t fool around down there.”

Clinic management says they don’t have a three-strike policy and don’t kick patients out for bad behavior. They say a patient might confuse terms of a contract they sign before they begin methadone treatment with a three-strike rule. Doctors who work in methadone clinics say they try not to lose patients, giving warnings and offering appeals before stopping treatment.

Inside the clinic, Joey says he waits to be served at one of three windows, each staffed by a nurse. When it’s Joey’s turn, he steps to the window, presents a special methadone clinic ID and recites his numbers: 4/07/68 and 70 — his date of birth and his dosage, 70 milligrams of methadone.

A nurse hands Joey a plastic cup with about an inch and a half of thick pink liquid. Some patients dilute the medicine with water to help get it down while the nurse watches.

“You can’t leave the window.That’d be crazy if you left the window with the methadone,” Joey says, laughing. “You can’t even leave with the cup, you have to throw it out before you leave.”

Joey says he doesn’t mind the strict rules and impersonal treatment. He waves off the criticism that he’s still using a drug to treat his drug addiction or that methadone is like handcuffs because he must come to clinic every day to get it.

“It’s better than sticking a needle in my arm, that’s for sure,” he says.

If Joey follows the rules, and is stable, he will eventually be able to pick up and take home a small supply so he won’t have to come in every morning.

Joey plans to increase his daily dose of methadone. The more a patient takes, the longer it takes to come off the drug safely. But Joey says he needs more.

“I do have to go up another 10 to 15 more milligrams cause I, like I’m not using heroin on an everyday basis anymore but I still am chipping here and there,” Joey says.

Chipping, as in using once or twice a week. Still, Joey says that’s a big improvement. He tries to look forward, not back — tries not to get stuck in regret.

“I’m grateful to have a roof over my head, but it’s not where I want to be,” Joey says with a long sigh. “What I want is my own place, to be stable. I lost like 30 pounds since I got out of jail which is terrible, I look like a twig. My mom just died in March, I miss her terribly. Everything just builds up, and you get depressed. Especially when you had everything at one time and you lost everything.”

Joey’s mother died the day he got out of jail, his fourth time behind bars for possession, shoplifting — a string of charges tied to his addiction. The “lost everything” period Joey mentions was back in his 20s. He’d dropped out of high school but had a good job, working construction on the Tobin Bridge. He had an apartment, a girlfriend and he fathered a son who he talks to now once a month or so.

Joey visits his parents grave at Woodlawn Cemetery in Everett. His mother died earlier this year, the same day Joey got out of jail for the fourth time. "I miss her terribly," he says. (Jesse Costa/WBUR)

Joey visits his parents grave at Woodlawn Cemetery in Everett. His mother died earlier this year, the same day Joey got out of jail for the fourth time. “I miss her terribly,” he says. (Jesse Costa/WBUR)

At age 24, a blood vessel burst in Joey’s brain, he had a partial stroke and a doctor prescribed the painkiller OxyContin. He says he was on 80 milligrams, three times a day for 15 years. When Joey’s doctor tried to wean him off the pills, Joey switched to heroin and, he says, nearly nine years of feeling controlled by the tiny bags of tan powder.

“Same thing, every day,” Joey says, his voice monotone. “Going to Chelsea Square, copping, getting high, sitting there like a zombie. Who the hell wants to live that way?”

The nearly three months on methadone is the first time he’s been almost off heroin or OxyContin in more than 20 years.

“I shoulda did this years ago,” he says.

Joey leaves the methadone clinic by 8 a.m. Now he’s got 10 or 12 hours to fill before he goes back to the couch in his friend’s apartment. Some days he finds the odd job, but nothing steady. Most days he stops by Chelsea City Hall three or four times to fish through the ashtrays.

“People go out from work and they take breaks and they take like two or three drags on their cigarette and put it out,” Joey says. “I fill up a box full of them cigarettes and use them to smoke. Pretty smart, huh?”

Just before 1 p.m., Joey heads for the Salvation Army and a free lunch, hoping for his favorite — stuffed shells.

“I come every day unless I am tied up or I have another appointment,” Joey says. “I don’t really miss it cause it’s my only source of food during the day for right now.”

Joey gets $194 a month for food stamps, which he says he spends on food for his apartment. He used to sell his food stamp ration half-price and buy heroin. His only other regular income is $724 he receives monthly from Social Security for his disability. He’s enrolled in both Medicare and Medicaid, for free.

After lunch, Joey brings stale bread back to Bellingham Square and Chelsea City Hall to feed the birds. He calls the square a trap, where heroin is always available. It was Joey’s home base when he was shooting four to six times a day and doing small deals to pay for the heroin. Sometimes he gets sucked back in.

Joey calls Bellingham Square in Chelsea a trap, where heroin is always available. It was his home base when he was shooting four to six times a day and doing small deals to pay for the heroin. Sometimes he still gets sucked back in. (Jesse Costa/WBUR)

Joey calls Bellingham Square in Chelsea a trap, where heroin is always available. It was his home base when he was shooting four to six times a day and doing small deals to pay for the heroin. Sometimes he still gets sucked back in. (Jesse Costa/WBUR)

“I middled a deal today, made a quick $10,” Joey says, describing his role as the middle guy, between a buyer he knows and a dealer. He could get several years in state prison for that. But says he really needed the money — for soda and toilet paper.

“I woke up this morning and there was no toilet paper and you gotta have toilet paper,” Joey says. “I don’t care where, if you have to rob a bank to get it. That’s one thing you need in the house is toilet paper.”

Back in his friend’s apartment, Joey boils a hot dog and sits down to watch “The Texas Chainsaw Massacre,” one of a few DVDs lying around. He can’t afford cable TV. But Joey made it through another day.

Joey walking up the stairs in the apartment building where he lives. (Jesse Costa/WBUR)

Joey walks up the stairs in the apartment building where he currently lives. (Jesse Costa/WBUR)

“People say that you OD two or three times, the third time you usually die. I OD’d seven times and I’m still here, so someone up there is watching me,” Joey says. “Someone has a purpose for me or a plan, but I keep waiting for that purpose of plan or purpose and I can’t find it.”

Joey says he prays and goes to church when he can, looking for guidance. He can’t see the plan yet, but he’s pretty sure it will include helping young people avoid or cope with the addiction that has already consumed half his life.

jeudi 24 septembre 2015

Prouty Garden, ‘The Soul’ Of Boston Children’s Hospital, Is Slated For Demolition

Prouty Garden, ‘The Soul’ Of Boston Children’s Hospital, Is Slated For Demolition

The Prouty Garden, at Boston Children's Hospital, is seen in June. The beloved space is slated for demolition, with a new clinical building set to go in its place. (Robin Lubbock/WBUR)

The Prouty Garden, at Boston Children’s Hospital, is seen in June. The beloved space is slated for demolition, with a new clinical building set to go in its place. (Robin Lubbock/WBUR)

Boston Children’s Hospital is known as one of the top hospitals in the world. It’s an elite pediatric center that treats devious and complex medical disorders, researches cures, and saves children’s lives.

The hospital is in the Longwood Medical Area, and there’s not a lot of breathing room there. Children’s is cheek by jowl with its neighbors — Beth Israel Deaconess Medical Center, Brigham and Women’s Hospital and Dana Farber Cancer Center. The property is pricey and open space is a rarity. So when a hospital needs to expand, as Children’s does, it’s hard pressed to find space.

But not far from the jam of traffic outside Children’s, tucked between the hospital’s main buildings, is a half-acre oasis called Prouty Garden.

It has fountains, pine trees and birches, and a 65-foot dawn redwood tree. There’s a gazebo in the corner, alcoves shrouded by shrubs for privacy, little squirrel and rabbit sculptures, and real rabbits, too. The garden has won national acclaim.

On one of our visits, a family picnicked under the redwood. A little girl sat on a bench with an oxygen tank. Parents pushed children in wheelchairs and with IV poles. Staff had lunch on the lawn and at tables on the terrace. Such has been life in Prouty Garden for almost 60 years.

A rendering of the planned Boston Children’s Clinical Building, to be built on the site of the Prouty Garden and Wolbach building (Courtesy of Children's Hospital)

A rendering of the planned Boston Children’s Clinical Building, to be built on the site of the Prouty Garden and Wolbach building (Courtesy of Children’s Hospital)

Now, Prouty is at the center of a piqued battle that’s pit some staff and families of patients against the hospital. That’s because next year, the garden is slated to be demolished. The hospital plans to build in its place an 11-story, $1.5 billion clinical building. It’ll feature a state-of-the art neonatal intensive care unit, a pediatric heart center with a cardiac clinic, operating rooms and enough space so the hospital can offer all patients private rooms.

Tami Rich, of Ashland, says it will save lives, and that’s what matters most to her.

“Garden spaces and healing spaces are incredibly important to me,” Rich says. “But saving the lives of kids, for me, it’s sort of an apples and oranges conversation.”

Children’s Hospital helped save her son Jameson’s life. He was born with complex heart defects. His mother spent hundreds of nights at Children’s with him — almost always in a room with another patient.

“You would finally get your really sick kid settled after being admitted, and it can take six hours to get everybody to see you once you get admitted,” she says. “And then at 3 [a.m.] someone else gets admitted into the room. That kid might be coughing or crying, and your kid just got to sleep. You need that space to heal and have your private time while you face these challenges.”

Rich’s son is now 22 and doing well.

Gus Murby, of Medfield, also had a son treated at Boston Children’s Hospital — Gus Junior. He had leukemia and endured two bone marrow transplants. Frequently, the family practically lived at the hospital with him. The best times they had together were outdoors in the Prouty Garden. They’d bring binoculars and watch hawks.

Gus died in 2007 when he was 17. His family brought him to the garden to take his final breath.

“We asked if we could go outside and if he would not have a tube in his throat,” Murby recalls. “He was intubated, so basically it was under the sky and without a tube. And he passed away quietly.”

On a recent visit to the garden, Murby pointed to the place where his son died. He says he wants the garden to remain for all the future families of Children’s Hospital.

“I can’t tell you how touching it is, I guess, to know that somebody 50 to 60 years ago did this and to understand — when you’re sitting there in the middle of it — why they did it. This is something that a small number of people intensely understand,” Murby says.

Olive Prouty (Courtesy of Mason Smith)

Olive Prouty (Courtesy of Mason Smith)

Prouty Garden exists because of Olive Prouty, a Brookline novelist and poet. She had two daughters who died as infants, and she funded two hospital wards in their memory. But when the hospital had to tear down that building, she agreed to fund the creation and upkeep of the garden, despite concern the hospital might one day tear it down. She bestowed it to the hospital in 1956.

“This is part of what makes Children’s Hospital so special,” reflects Elaine Meyer, a clinical psychologist and registered nurse who directs an institute on ethics at Children’s. She’s helping to lead the push to save Prouty Garden.

“This is part of the healing that we have to offer, part of the therapy that we have to offer. This is not just a nice little sentimental space,” she says.

The save Prouty campaign has included sidewalk gatherings outside the hospital. Among those rallying: landscape architect Tom Paine, who designed a corner of Prouty Garden. For him, this is partly a land-use issue.

“Open space is not just a building site waiting to happen, which is how we too often look at open space,” Paine says. “We consider it just simply tomorrow’s building site, when it’s not that.”

But hospital executives say they’re dedicated to developing new green space. And they emphasize that with the new building, they’ll end up with about 9,000 more square feet of green space than they have now. It won’t be in one place, but many — some of which already exist and will be expanded, and several that will be new.

“I think we have a great opportunity to not just replicate but evolve those types of spaces,” says Dr. Kevin Churchwell, the executive vice president of health affairs and chief operating officer at Boston Children’s Hospital, who also worked for many years as a critical care pediatrician.

Churchwell says landscape architects hired by the hospital are designing an indoor winter garden, an outdoor roof garden on the hospital’s main building, and other spaces, including an earth-level exterior garden about half the size of Prouty.

A rendering of the rooftop garden planned for Boston Children’s Hospital’s existing main building. Hospital executives say they expect the garden to be completed in the next two years. (Courtesy of Children’s Hospital)

A rendering of the rooftop garden planned for Boston Children’s Hospital’s existing main building. Hospital executives say they expect the garden to be completed in the next two years. (Courtesy of Children’s Hospital)

But some opponents say those spaces won’t come close to replicating Prouty Garden.

“They’re manufactured. They’re not authentic. They’re kind of put-in green. Fake green. Cheese Whiz,” says Episcopal priest Joel Ives, from Brookline, who has prayed with patients in Prouty Garden. He’s one of 12,000 people who’ve signed a petition to preserve the space.

Children’s Churchwell says the garden has a great history with the hospital. But, he says, times have changed and the needs are dire.

“Our major discussion is around census management — trying to figure out, given our number of beds and number of children who want or need our care, how do we manage that? It’s not a match right now,” Churchwell explains.

He says the hospital looked seriously at alternative sites for the new clinical building.

“And looking at the other sites within this area, we sort of ruled out what didn’t work and came up that the building that we’re going to build made the most sense from a cost standpoint, a time standpoint and a feasibility standpoint,” he explains

Opponents say they asked to see detailed analyses of the sites but the hospital never provided them. In filings with the Boston Redevelopment Authority, Children’s said the other sites didn’t offer a big enough space or were too far from the main buildings to provide optimal medical care.

The hospital’s head of real estate, Charles Weinstein, said in a 2103 interview with WBUR that those issues were “fatal flaws.”

We asked Churchwell why hospital executives didn’t consider Prouty Garden a deal breaker for the new building. “Priority,” he replies. “What’s the most important thing that we do here? The most important thing that we do here is to take care of children who need us desperately. And that care is provided by our caregivers and by the space. And if the space is not where it needs to be, that’s an important issue that we have to deal with.”

Gus Murby, who brought his son to Prouty Garden to die, calls it the “soul” of the hospital. (Robin Lubbock/WBUR)

Gus Murby, who brought his son to Prouty Garden to die, calls it the “soul” of the hospital. (Robin Lubbock/WBUR)

Murby, who brought his son to Prouty Garden to die, calls it the “soul” of the hospital.

“It really boils down to what you’re in the business of doing. If you’re in the business of clinically treating patients, end of story, you’re absolutely right,” he says. “If you’re in the business of healing patients, and within your medical knowledge you can treat them but you realize they’re more than just that; if you’re running a hospital and you want staff to care the way I believe this Children’s staff cares, you need a place they can come. This is not just a garden for the kids.”

Prouty supporters are now pursuing legal action, hoping for an 11th hour reprieve. They’ve asked Attorney General Maura Healey to block the hospital from building on Prouty Garden. To bolster their case, they point to letters between Prouty and hospital officials about the garden’s future, and a plaque the hospital erected and still stands in the garden. It reads, in part:

“Mrs. Prouty insisted on perpetually maintaining this location as a haven…” and, “Because of Mrs. Prouty’s vision, this garden will exist as long as Children’s Hospital has patients, families, and staff to enjoy it.”

Attorney Greg McGregor, of McGregor and Legere, says a state law pertaining to charitable gifts could be the basis for action by the attorney general.

“If necessary, [we’ll seek] a lawsuit to see to it that the garden is saved in perpetuity, as the original gift contemplated, which the hospital asked Mrs. Prouty for, and which her will specifies in endowing the garden,” McGregor says.

Mason Smith is resigned to Children’s building on the garden his grandmother created. In fact, he’s on the hospital committee that’s helping to develop the new green spaces. (Robin Lubbock/WBUR)

Mason Smith is resigned to Children’s building on the garden his grandmother created. In fact, he’s on the hospital committee that’s helping to develop the new green spaces. (Robin Lubbock/WBUR)

But the hospital has a surprising ally. Mason Smith is Olive Prouty’s grandson, and he heads the Olive Higgins Prouty Foundation, which his grandmother set up to endow the garden.

Smith is also a retired architect who worked for Shepley Bulfinch, the firm that designed the hospital’s Berthiaume building and is designing the new clinical building. Smith is resigned to Children’s Hospital building on the garden his grandmother created. In fact, he’s on the hospital committee that’s helping to develop the new green spaces.

“I guess I saw this as where the hospital was headed, and then my interest was, ‘Well, let’s do the best of it that we can,’ ” Smith explains. “I was asked continually by the people that are very sad about the garden’s going, did my grandmother say the garden should never be changed or removed? And I said, ‘No, my grandmother was a smart woman. She knew things were temporal and didn’t last forever.’ ”

Smith says he takes hospital executives at their word that they fully explored alternatives. The foundation gives between $40,000 and $50,000 a year for the garden’s upkeep — not enough, he says, to give him any pull over the hospital’s decision.

But for Elizabeth Richter of Canton, Connecticut, the plans to demolish Prouty are a betrayal.

When her brother was treated at Children’s for multiple brain tumors, he loved being outside in the garden and watching the squirrels, Richter says. He died at the age of 12 in 1973. The family scattered his ashes in Prouty Garden.

“I have always felt a tremendous commitment to Boston Children’s Hospital. And every year since my brother’s death I have come here, to celebrate my brother, to walk through the garden, to remember him,” she says. “And for the administrators of this hospital to betray the people of Boston, to betray their patients and the parents and the families like this is, it’s just, I can’t even speak.”

As of now, the hospital plans to begin construction on the new clinical building next year. And, administrators say, they will hold multiple ceremonies to honor Prouty Garden and say goodbye.

Earlier Coverage:

mercredi 23 septembre 2015

Prevention Expert: What I Wish You Knew About Not Falling Down

Prevention Expert: What I Wish You Knew About Not Falling Down

falls

By Dr. Audrey M. Provenzano
Guest contributor

One word comes to mind when I think about Mr. H: grit.

I met him while he was in the hospital with pneumonia, the latest in a long string of hospitalizations after he broke his hip in a fall. I would see him in the halls with the physical therapist, gripping his walker, utterly absorbed in the work of lifting each foot and placing it back down.

Every morning on rounds, Mr. H would joke with us: “You’re going to throw me outta this place today, right, doc? Don’t pass go, just go home!” But beneath his humor lurked true sorrow, anger, and frustration over his loss of independence. Before his fall, Mr. H had never stayed overnight in the hospital; he took only a few medicines for high blood pressure, and lived alone with his cat — a simple life he lost in a second, and yearned each day to get back.

Many of us harbor secret fears about growing older, and what many of us fear most is the loss of independence, a tragic and terrifying possibility. I’d suggest a very specific focus for those fears: Falls. The most common but least talked-about reason that older adults like Mr. H lose their independence is falling down.

Here is what I most wish everyone knew about falls: They are are common, they can be devastating, and most importantly, falls are preventable.

• Falls are common
Incredibly common. Thirty percent of adults over 65 fall each year. Because falls happen all the time, we don’t think about how dangerous they are. Unfortunately, one in five falls results in serious injuries, including broken bones.

• Falls can be devastating
Mr. H’s story is the story of hundreds of thousands of older adults. A fall may lead to surgery, and sometimes that leads to complications, like pneumonia. Some older adults in this situation regain enough function to go back home; sadly, many do not, and one in three is still living in a nursing home a year later.

Even worse, these types of injuries often lead to declining health overall, and twenty percent of older adults who break a hip die within one year from the medical complications that frequently attend such devastating injuries.

• Falls can be prevented
How? Six key recommendations, backed by the CDC, some obvious, some less so:

1) Staying active is the most important way to prevent falls.
Any kind of exercise is helpful, but studies have shown that exercises integrating balance and strength, such as Tai Chi, are particularly beneficial. There is an exercise program called Matter of Balance that was designed specifically to help prevent falls among older adults – look for those classes through your primary care doctor’s office or local aging services.

2) Modify your home to prevent falls.
Rearrange your furniture so that you can walk easily from room to room. Drape power cords for lamps and computers behind furniture rather than across a path so that you don’t trip on them. Remove area rugs, which may have corners that stick up and can catch your toes. Think about adding grab bars in your bathroom to make it easier to get in and out of the tub or shower, and additional lighting throughout your home so that you can see where you are going. The CDC has some helpful information on how to make your home safer here.

3) Ask your doctor to review your medication list.
Some medications can increase the risk of having a fall. If you are concerned about falling, it may be reasonable to stop certain medications or to switch to alternatives. This has to be a personal conversation with your doctor, weighing the risks and benefits of the medicine for you as an individual patient.

4) Get your eyes checked.
If you need glasses, make sure to wear them. If you can’t see where you are going, you will be sure to fall.

5) Make sure your bones are as strong as possible, so that in case you do fall you are less likely to break a bone.
Some people benefit from taking calcium and vitamin D supplements or other medications to strengthen their bones. Ask your doctor about what is best for you. Exercise that puts force on your bones, such as walking or lifting weights, strengthens your bones and is good for just about everyone.

6) Talk about falls.
Spread the word about how important this issue is for older adults in our communities.

At the Dimock Center, we’ve successfully put in place a program to screen patients to find out who is at risk for falling. But once we identify older adults at risk, convincing them that fall risk is important is another story.

Patients can be reluctant to try a new type of exercise or change how their home is set up. When I asked a patient about why she didn’t want to add grab bars in her bathroom, she whispered, “It makes me feel old to have those things in my house.” Fall risk can be stigmatizing, but at the Dimock Center, we’re hoping to make fall prevention a part of everyone’s routine health care, just like a mammogram or colonoscopy.

So, talk to your loved ones – even if they don’t necessarily want to talk about it. Make sure they are doing everything possible to reduce their fall risk. If you are an older adult and you are worried about falling, don’t worry alone. Talk to your doctor and talk to your family and friends.

From time to time, we all need help staying on our feet.

Dr. Audrey M. Provenzano is the director of Quality Improvement for Health Services and a staff physician at The Dimock Center in Boston. 

Further reading: The National Council on Aging’s page on Sept. 23 as Falls Prevention Awareness Day

mardi 22 septembre 2015

Harvard Study: Dietary Supplement To Boost Sexual Performance Often Mislabeled, Posing Risks

Harvard Study: Dietary Supplement To Boost Sexual Performance Often Mislabeled, Posing Risks

If you’re not a man in the market for a natural way to boost your sexual performance, you may be unfamiliar with yohimbe, an African tree whose bark yields the active ingredient yohimbine that can be extracted and used as an aphrodisiac.

But according to a new study by Harvard researchers, the vast majority of yohimbe sold as a dietary supplement by mainstream retailers in the U.S. is mislabeled in a way that could pose a safety risk to consumers.

Dr. Pieter Cohen, an assistant professor at Harvard Medical School who studies dietary supplements says of the 49 yohimbe products he and his colleagues tested, most had inaccurate data either about the quantity of active ingredient or an incomplete list of known side effects. “These are completely misleading in terms of labels,” Cohen, the lead author of the new study and an internist at Cambridge Health Alliance, said in an interview. “If safe consumption of a product requires that both accurate quantity as well as known adverse effects be provided on the label, then only 4.1% of the yohimbine supplement brands analyzed provided sufficient safety information for consumers.”

(Photo: R. Zimmerman)

(Photo: R. Zimmerman)

But the real problem, Cohen says, is the federal law governing dietary supplements which regulates such products more like food than drugs and doesn’t require the kind of stringent pre-market testing for safety and effectiveness mandated for prescription drugs. “Every problem we found with yohimbe supplements brings us back to fundamental flaws in the law,” Cohen said.

Here’s the conclusion of his study, published today in the journal Drug Testing and Analysis:

The overwhelming majority of U.S. physicians no longer prescribe yohimbine. However, we found that pharmaceutical quantities of yohimbine are widely available in dietary supplements. While dietary supplements often contained pharmaceutically relevant quantities of yohimbine, the supplement labels very infrequently provide consumers with accurate information regarding quantity of yohimbine or known adverse effects… Our study demonstrates that consumers in the USA are unable to obtain adequate safety information from the overwhelming majority of yohimbine supplement brands offered for sale by seven mainstream retailers…This is a particularly concerning finding given that many countries have already banned yohimbine from all over-the-counter products due to its potential serious health effects.

Why should consumers care? Here, edited, is more of my conversation with Dr. Cohen.

RZ: Why did you focus on this particular dietary supplement?

PC: I became interested because my patients were taking these supplements and experiencing chest discomfort, flushing and I was worried that the supplements were spiked with prescription drugs. We had the supplements tested [at the National Center for Natural Products Research at the University of Mississippi]. Some had a lot of yohimbine [the active chemical that is extracted from the African yohimbe tree that’s been used as a natural aphrodisiac].

It’s illegal to sell yohimbe over-the-counter in Canada, Australia and several European countries, but in the U.S. you can sell yohimbe as a dietary supplement directly to consumers.

An extract of the bark has been used for years as an aphrodisiac.  Scientists over 60 years ago started exploring which chemicals in the bark might be the most potent and eventually settled on yohimbine.  Yohimbine was then developed as a prescription drug.  But it doesn’t really work very well — there are side effects, headaches, panic attacks, elevated blood pressure – and it never became a popular prescription drug.  Over the past ten years, doctors have almost completely stopped writing prescriptions for yohimbine and most pharmaceutical firms have stopped making it.  Doctors now use Viagra and similar drugs because these newer drugs are both more effective and safer than yohimbine.

So, we turned to yohimbe supplements because we were curious, were the contents more similar to simple extracts of tree bark or more similar to prescription drugs.

RZ: So the dose really does matter in this case?

Yes, 5 mg was the typical prescription dose of yohimbine. What we found in the supplements we tested — which remember are what people go to when they want something natural — were dosages much closer to the prescription dosages of yohimbine than the small amounts one would have expected from tree bark extract. We found in single servings up to 12 mg of yohimbine — that is much higher than the prescription doseWe were surprised to learn that many of these over the counter supplements contained amounts of a drug higher than prescription doses.

RZ: What else did you find?

We were also interested to see if other natural components of the tree bark could be found in the supplements. What was shocking was that many of the products, 39 percent of them, did not contain two other compounds found in the bark. That tells us a lot. Either these products started with the plant and underwent a lot of processing to concentrate the yohimbine, or the yohimbine is being synthetically produced and marketed as the tree extract.

RZ: And why does that matter to Joe Consumer?

What matters is that the supplements are delivering prescription-level quantities of yohimbineWhen drugs at prescription levels are sold as yohimbe supplements, the consumer has absolutely no idea how much drug they’re getting. Only 22 percent of the supplements we tested listed specific quantity of yohimbine on the label. Of the ones that listed a quantity, only 3 of 11 were accurately labeled, and those three didn’t contain the other compounds found in the tree bark.

So let’s say you’re having trouble with sexual function and you want to try something natural that has been used for hundreds of years to see if it helps.  If you purchase these yohimbe supplements, you are much more likely to be using something similar to an old prescription drug with lots of side effects than a natural tree extract.

RZ: Why would manufacturers do this?

The law permits advertising for supplements: you can’t say this will cure impotence, but you can say that this increases virility, stamina and desire. You can make all sorts of claims, and you don’t need evidence that it works in humans. You can claim this botanical product has all these health benefits, so there’s an incentive for supplement makers to do everything they can to make the product do something.

RZ: Any other findings of note?

Unfortunately, consumers can’t learn about the important side effects of yohimbine from reading these supplement labels. For example, yohimbine can cause headaches, hypertension and panic attacks. Nine out of the 49 we supplements we tested did not list any side effects at all.

RZ: Do you have any suggestions for fixing this?

Three things need to be changed in the laws regulating supplements:

1. There should be standard procedures used to prepare botanical supplements.  Rather than allowing every manufacture to prepare their pills any way they choose, there should be standards, determined by a national standard setting organization, and all manufacturers should be required to follow the same manufacturing process. Only then will consumers buying yohimbe know what they were consuming.

2. Adverse effects should be required to be listed on the bottle.

3. The giant advertising loophole, called “structure/function claims” that permits false advertising should be eliminated.

We should have access to high quality botanical supplements over the counter, but we should know what’s in the pills and powders we’re swallowing.

 

lundi 21 septembre 2015

In Step Toward Genetic Fix, Scientists Pinpoint ‘Achilles Heel’ Of Sickle Cell Disease

In Step Toward Genetic Fix, Scientists Pinpoint ‘Achilles Heel’ Of Sickle Cell Disease

A "sickled" cell among normal red blood cells. (Wikimedia Commons)

A “sickled” cell among normal red blood cells. (Wikimedia Commons)

It’s not like any other pain, says Cloret Carl of Quincy. It’s inescapable, and far beyond a toothache or childbirth or a joint replacement: “It encompasses every single part of your being and your body, because it’s in your blood,” she said.

She’s describing the periodic agony of sickle cell disease, a genetic disorder that mutates red blood cells from their usual disc shapes into sickles, leading to dangerous — and excruciating — blockages. Organ damage and early death can result.

Carl, who supports the Greater Boston Sickle Cell Disease Association and works with doctors and researchers, has lost friends young and old to sickle cell disease, and spent many days in intensive care units with life-threatening complications herself. Sickle cell disease affects about 100,000 Americans, mainly of African descent, and though there has been progress on treating it in recent years, “most of the people who have this illness have a very painful existence,” she said.

Cloret Carl (courtesy)

Cloret Carl (courtesy)

So she’s heartened by the latest findings on a tantalizing prospect for a possible eventual cure: attempts to turn back the genetic clock on sickle-cell disease.

“This gives hope to people that at some point, we’re going to conquer this illness,” she said.

The concept: Hemoglobin, which carries oxygen, is mutated in the disease. What if scientists could reactivate long-dormant genes to replace the mutated hemoglobin? What if they could spur patients to produce a healthy form of hemoglobin that their bodies stop making soon after birth?

That prospect came one step closer this month with the publication of findings in the journal Nature that pinpoint a narrow DNA target for such a fix.

Dr. Stuart Orkin (Courtesy)

Dr. Stuart Orkin (Courtesy)

“We located a very, very small region, basically an Achilles heel, that we think would be very amenable to editing and to therapy,” said Dr Stuart Orkin of the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, a senior author on the paper.

Biotech companies hope to begin trying gene therapy on this new target in patients as soon as next year, he said.

Sickle cell disease is caused by a single mutation, so of course the most logical way to cure it would be to simply repair that mutation, said Dr. Daniel Bauer, also of the Cancer and Blood Disorders Center and a senior author on the Nature paper. But it’s much harder to fix a genetic sequence than it is to just break one, he said.

So precision breakage became the goal. But was it possible?

“What we didn’t know before this study was, would it be possible to break the target we wanted to break with a single cut” of DNA, he said. “What this study revealed is yes, we can do it, and it’s actually a very potent strategy.”

Dr. Daniel Bauer (Courtesy)

Dr. Daniel Bauer (Courtesy)

Their target was, in effect, a genetic “off” switch. In the womb and early infancy, we produce a fetal form of hemoglobin, but then, in early life, we stop, switching almost entirely to an adult form. That’s fine, unless you’re a sickle cell patient whose adult form of hemoglobin is perilously misshapen.

It has long been known that the fetal form can successfully replace the adult form, Orkin said. In adults with hemoglobin disorders, “this should, in fact, essentially cure them,” he said.

But how to do it? Several years ago, Orkin and other researchers had found a “switch factor” that shuts off the fetal form. So how to flip this “off” switch back to “on”?

Orkin and Bauer’s research team surveyed the DNA neighborhood, testing more than a thousand spots. “We needed to locate a place in the switch gene that really would be convenient to the new kind of gene-editing tools,” Orkin said.

Those tools include the sizzling biotechnology known by the acronym CRISPR, a method that makes it so much easier to edit DNA that it has been compared to switching from a typewriter to a word processor.

Their Nature paper pinpoints the best spot. And gene editing tools would also help convert their findings to treatments, they say.

The plan, Bauer said, would be to extract blood stem cells from a patient, manipulate the cells’ DNA to turn the fetal hemoglobin back on, and then put those altered cells back in the patient. “The patient’s blood system would then be maintained by cells that were corrected,” he said.

“This is really a type of therapy that we could only imagine in recent years, when the genome-editing technology has become practical,” he noted.

Work continues on how to target the edits as effectively as possible, he said, “only editing the spot we want to edit, and not causing any unwanted changes.”

But Orkin said that with the key DNA region identified, a practical way forward is now clear.

With many discoveries, he said, several more advances are needed before the science can possibly be of use to patients. “Here, there’s no more real unknown science,” he said. “It’s really just a question of translating it.”

Boston Medical Center hematologist Dr. Martin H. Steinberg, who has researched sickle cell disease and treated patients for decades, agreed that the paper details a potentially very useful target.

A few hundred sickle cell disease patients have been cured by bone marrow transplants, he said, but many are not eligible or lack compatible donors. If a patient’s own blood cells could be re-engineered, that would eliminate the need for a donor and concerns about rejection.

“But it’s not going to happen tomorrow,” he cautioned, and the process would be labor-intensive and require an advanced hospital. “If you’re asking for a time, I would say you’re looking at years,” he said. “Five, 10 years, I don’t know.”

Though he praised the paper, which he was not involved with, and its authors, “it’s a long ways to go from these observations to something that’s therapeutically available.” There are many “technical impediments” to this and other gene therapy work, he said.

Bauer agreed that “we’re not there yet.” He said treatments based on the gene-switch work “will be introduced in very careful, small clinical trials with close observation, so it’s not going to be ready for prime-time for every patient immediately.”

“But,” he said, “I think there’s a lot more optimism now than there was in the past in terms of better, even curative options for these disorders.”

Sickle-cell disease research — or rather, the paucity thereof — has long raised questions of racial discrimination.

Consider, for example, this recent Mother Jones story: “One Disease Hits Mostly People of Color. One Mostly Whites. Which One Gets Billions in Funding?” That translated into a Daily Kos headline: “How Race Plays An Ugly Role in the Drastic Underfunding of Sickle Cell Research and Advocacy.”

And Forbes ran this headline this summer: “Sickle Cell Disease Highlights Racial Disparities In Healthcare.”

The story notes:

“The funding disparities for research on sickle cell compared to other pediatric diseases are huge. Cystic fibrosis, a disease that affects primarily Caucasians, occurs in only a third of the numbers affected by SCD, but received 3.5 times more NIH funding. Private funding from foundations was about 400 times higher for cystic fibrosis! Unsurprisingly, Johns Hopkins researchers John Strouse and Carlton Haywood note that no drugs were approved between 2010 and July 2013 for the treatment of SCD compared with five for cystic fibrosis.”

Cloret Carl of Quincy agrees that compared to funding for research on other diseases, sickle cell disease is dramatically underfunded. She said people in the sickle cell community also report stigma — but mainly in connection with seeking treatment for the disease’s pain crises.

“The big stigma is that people with the illness are drug seekers,” she said. In emergency rooms, she said, “The first misjudgment is, ‘Oh, this person is seeking narcotics,’ because it takes high dosing of pain medication administration for you to get that breakthrough,” for the pain to start to resolve.

And the argument that sickle cell disease research is underfunded because it mostly affects people of color?

Sickle cell disease affects Asians, Africans, people of Italian and South American descent, Carl said; perhaps it’s more about “people being poor.”