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Diagnosing CTE In The Living: Massive Study Of Degenerative Brain Disease To Begin

Robert Stern, director of Clinical Research at BU's Chronic Traumatic Encephalopathy Center, and former New England Patriot safety Tim Fox. (Jesse Costa/WBUR)

Robert Stern, director of Clinical Research at BU’s Chronic Traumatic Encephalopathy Center, and former New England Patriot safety Tim Fox. (Jesse Costa/WBUR)

About 50 medical researchers from around the country converged on Boston Wednesday, as they prepare to launch a massive seven-year study into the brain disease known as chronic traumatic encephalopathy, or CTE, in July.

CTE is a degenerative disease similar to Alzheimer’s. It’s only found in people who’ve played football, boxed or taken part in other contact sports.

The researchers are recruiting 180 former NFL and college football players in order to study their brains. The goal is to develop ways to diagnose CTE in people while they’re alive. The only way to diagnose it right now is by studying the brain after death.

One of the lead researchers is Robert Stern, Ph.D. He’s a Boston University School of Medicine professor of neurology and neurosurgery and director of clinical research at BU’s Chronic Traumatic Encephalopathy Center.

Helping Stern champion the research is Tim Fox, a 62-year-old former NFL safety who played for the Patriots, Chargers and Rams. He thinks he has CTE.

Fox and Stern spoke with WBUR’s All Things Considered host Lisa Mullins about the disease. Stern says while much of the focus has been on concussions, CTE is caused by something that can seem more benign.

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New Addiction Treatment Implant Will Hit The Market Next Month At $4,950

A graphic shows how the implant is placed inside the skin of a person's upper arm. (Courtesy Braeburn Pharmaceuticals)

A graphic shows how the new addiction treatment implant Probuphine is placed inside the skin of a person’s upper arm. (Courtesy Braeburn Pharmaceuticals)

There’s a new tool in the fight against the nation’s raging opioid epidemic.

The FDA on Thursday approved an implantable version of the drug buprenorphine, which staves off opioid cravings. Labels for the new device are rolling off printing devices today, and trainings begin Saturday for doctors who want to learn to insert the four matchstick size rods into patients.

The implant, called Probuphine, is expected to be available by the end of June.

“This is just the starting point for us to continue to fight for the cause of patients with opioid addiction,” said Braeburn Pharmaceuticals CEO Behshad Sheldon.

But one day after the FDA approved this first long-acting delivery method for buprenorphine, debate continues about how effective the implant will be and whether insurers will cover it.

A Game Changer … Or Set Up For Failure? 

The head of the National Institute on Drug Abuse calls the new implant a game-changer because it will help addiction patients stay on their meds while their brain circuits recover from the ravages of drug use. And addiction experts say it will be much harder for patients prescribed the implant to sell their medication on the street, which is a problem for addiction patients prescribed pills.

“I think it’s fantastic news,” said Dr. Sarah Wakeman, medical director of the Substance Use Disorder Initiative at Massachusetts General Hospital. “We need as many tools in the toolbox as possible to deal with the opioid epidemic.”

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Cancer Patient Receives Nation’s First Penis Transplant At MGH

In this photo provided by Massachusetts General Hospital, Thomas Manning gives a thumbs up after being asked how he was feeling following the first penis transplant in the United States. (Sam Riley/Mass General Hospital via AP)

In this photo provided by Massachusetts General Hospital, Thomas Manning gives a thumbs up after being asked how he was feeling following the first penis transplant in the United States. (Sam Riley/Mass General Hospital/AP)

Back in 2012, Thomas Manning of Halifax, Massachusetts, suffered a serious groin injury when a heavy cart fell on him at work. As he was being treated for it, his doctors found an aggressive cancer growing in his penis, and amputated most of it.

“He’s really an incredible person that after that surgery, totally unprovoked, said, ‘Doc, if I can have a penile transplant, I’m your patient,’ ” Manning’s doctor, MGH urologic oncologist Adam Feldman, told reporters on Monday. “And then shortly afterward was when the program started and I said, ‘You know … there just might be something here for you.’ “

It took more than three years for all the pieces to come together, but Manning, 64, has now received the country’s first penis transplant. Surgeons in South Africa and China have performed similar operations.

The operation at Mass. General took place overnight on May 8, and lasted more than 15 hours in total. The organ came from a deceased anonymous donor whose family gave special permission for the transplant.

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Emergency Mental Health Programs Called Into Question After Taunton Attack

Many questions remain about the mental health services Arthur DaRosa received in the day before he went on a deadly stabbing rampage in Taunton Tuesday evening.

On Thursday, the hospital where DaRosa went for help — Morton Hospital in Taunton — says it has banned the outside contractor that evaluates MassHealth (Medicaid) patients who come in with psychiatric emergencies.

State policy says emergency mental health evaluations of patients with MassHealth must be done by outside behavioral health vendors. They’re known as Emergency Service Programs.

On Wednesday, Morton Hospital called that policy “misguided.” It wants its own clinicians to evaluate all patients.

The Emergency Services Program the hospital is banning, known as Norton Emergency Services or Taunton/Attleboro Emergency Services, is actually run by the state Department of Mental Health.

Megan Wiechnik, the resource helpline director with the National Alliance on Mental Illness Massachusetts chapter, told WBUR’s All Things Considered host Lisa Mullins the system as it stands works — sometimes.

Earlier:

Sudders, Bharel Discuss Release Of 2015 Opioid Death Numbers

There is still no sign that Massachusetts’ opioid epidemic is slowing.

New numbers released Monday show that 1,379 people died from unintentional opioid overdoses in the state in 2015. And that number is expected to top 1,500 once all death investigations are complete.

The data also show that more than half of the deaths last year involved the potent painkiller Fentanyl, which is sometimes mixed with heroin.

Health and Human Services Secretary Marylou Sudders and Department of Public Health Commissioner Monica Bharel joined WBUR’s All Things Considered to discuss the crisis.

The numbers the state released provide real-time information, they told us. Bharel also said the data help officials understand who is most affected by the opioid epidemic.

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Teen At Center Of Custody Battle Over Diagnosis Sues Boston Children’s Hospital

Justina Pelletier, seated, speaks to media alongside the Rev. Patrick Mahoney, left, and her mother Linda Pelletier on Thursday outside the State House in Boston. The Pelletiers filed a lawsuit against Children's Hospital in Boston over a medically-related custody dispute. (Bob Salsberg/AP)

Justina Pelletier, seated, speaks to media alongside the Rev. Patrick Mahoney, left, and her mother Linda Pelletier on Thursday outside the State House in Boston. (Bob Salsberg/AP)

The family of a Connecticut girl who was the focus of a high-profile medical dispute is suing Boston Children’s Hospital.

Justina Pelletier’s family accuses the hospital and four doctors of negligence and violation of civil rights.

“They were really treating me badly. They really didn’t care, and, it was awful,” Justina said from her wheelchair. The now-17-year-old clutched a stress ball with her blue painted fingernails as she spoke to reporters outside the Massachusetts State House Thursday.

“Just imagine being in a psych ward without needing to be in a psych ward, and just not being treated like everyone else was,” she added.

Justina’s family contends she was taken away from them and placed in state custody, after they disagreed with Children’s Hospital doctors about her diagnosis. Justina had been treated by doctors in Connecticut and at Tufts Medical Center in Boston for a rare mitochondrial disease before being sent to Children’s for a stomach ailment. The family says doctors at Children’s concluded Justina’s condition was psychological, and not physical, and ultimately put the girl in state custody.

Justina is home now, but is still upset by being placed in state custody for 16 months.

“Justina and her family have been, as you can imagine, both the emotional and financial devastation that this has caused,” said attorney Kathy Jo Cook, who represents the Pelletiers. “Additionally, this is a civil rights lawsuit. We are very, very concerned of the rights that were violated here, and want to ensure that this doesn’t happen again.”

Children’s Hospital issued a written statement saying they welcome the opportunity to vigorously defend the medical care it provided to Justina Pelletier, but due to patient’s privacy and the lawsuit, it cannot comment further on the case.

Earlier:

'I Don't Feel Trapped On Earth': Ketamine Lifts Many From Depths Of Major Depression

Sarah Kramer, 37, has been profoundly depressed most of her life. But "right now, thanks to ketamine," she says, “I don’t feel despair. I don’t feel hopeless. I don’t feel trapped on earth.” (Jesse Costa/WBUR)

Sarah Kramer, 37, has been profoundly depressed most of her life. But “right now, thanks to ketamine,” she says, “I don’t feel despair. I don’t feel hopeless. I don’t feel trapped on earth.” (Jesse Costa/WBUR)

Thirty-seven-year-old Sarah Kramer has been profoundly depressed most of her life. She remembers feeling different from the time she was 4.

“I never wanted to be anything when I grew up, because I didn’t want to grow up, because I didn’t want to keep living,” Kramer, of Medford, recalls.

Kramer grew up a diplomat’s daughter. The family moved around Africa, the United States and Canada. She started out a straight-A student, then her grades slipped and she gained weight. She never attempted suicide, but it was always in her thoughts. She had a breakdown in high school and over time ended up on a slew of psychiatric medications.

But she remained depressed and suicidal. In more recent years, she barely left the house.

Now for the first time since Kramer was a child, she has hope. The veil of depression is lifting.

“I feel very much like a stranger in a strange land,” she says.

Within A Few Minutes, The Ketamine Kicks In

Kramer is taking a medicine doctors call the biggest discovery in the treatment of mood disorders in decades. It’s a drug that was never intended to treat depression. It’s used as anesthesia — and used illegally as a club drug called “Special K.”

The drug is ketamine. Kramer takes it as a nasal spray.

We meet Kramer at a Massachusetts General Hospital outpatient clinic where doctors are prescribing ketamine to the most severely depressed patients. Psychiatrist and lead researcher Christina Cusin says many of the patients are on the verge of suicide. They’re people who get little or no relief from traditional antidepressants. But they do get relief from ketamine. Continue reading

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Gov. Baker Appears To Be Growing Frustrated With Lack Of Movement On Opioid Bill

Gov. Charlie Baker listens as President Obama speaks during a meeting with fellow governors at the White House on Monday. The governors spoke about the opioid addiction crisis. (Jacquelyn Martin/AP)

Gov. Charlie Baker listens as President Obama speaks during a meeting with fellow governors at the White House on Monday. The governors spoke about the opioid addiction crisis. (Jacquelyn Martin/AP)

As the second month of the year draws to a close, Gov. Charlie Baker appears to be growing more frustrated with the Legislature’s pace in passing his comprehensive opioid bill.

The legislation remains bottled up in a conference committee that’s working out the differences between the House and Senate.

“I’m hopeful that we’ll get something passed through the Legislature that we can sign and we can begin implementing … when [legislators] come back in January,” the governor said last November, after testifying in favor of his opioid bill. “If the clock’s still ticking and nothing’s happening in February or March, I’m going to start to get pretty impatient.”

And there has been progress. Last month, the House passed its version of the legislation, which is slightly different than the one passed by the Senate last fall. The major difference is the number of opiate-based pills a doctor could prescribe to a first-time patient.

A major provision of the package, the part banning the involuntary commitment of female opiate users to the state women’s prison in Framingham, was busted out of the overall bill, approved in its own right, and signed into law by the governor. But with March just a few days away, the governor says he’s worried that other initiatives will be vying for attention on Beacon Hill. Continue reading

Landmark Gene Discovery Cracks Open ‘Black Box’ Of Schizophrenia

Sydney and her mother Lori look into the bedroom mirror where Sydney experienced her first symptoms of schizophrenia. Now 20, Sydney has had no symptoms for almost two years now. (Jesse Costa/WBUR)

Sydney and her mother Lori look into the bedroom mirror where Sydney experienced her first symptoms of schizophrenia. Now 20, Sydney has had no symptoms for almost two years now. (Jesse Costa/WBUR)

One November day in her senior year of high school, Sydney accidentally broke the full-length mirror leaning up against the wall of her bedroom.

She felt a gust of superstitious dread: “Oh my God, I have to put this mirror together or I’m going to have bad luck.” Then, it escalated oddly into religious terror: “The devil’s coming to get me!”

Something inside her seemed to snap, she said. She sensed demons invading through the broken glass.

Not long afterward, President Obama spoke to Sydney inside her head: “OK, this is how the world is now,” he told her. “Everyone is so in love with each other, we can hear each other in our heads.”

The menacing voices of demons started to torment her, especially at night. She became convinced that she was going out with the pop star Justin Bieber, that he was chatting with her on her phone and sending her hidden messages in his Twitter feed. She thought he set up paparazzi in her backyard on Boston’s North Shore, that he was sending planes over her house to let her know he cared.

“Is this really happening?” She would ask the voices in her head. “Is this?” Yes, they told her. Yes.

What was really happening? How does a sunny girl who’d never had psychiatric problems before, who grew up loving dance and Disney princesses, a good student who was rich in family and friends, how does that girl suddenly lose her hold on reality?

Schizophrenia affects about 1 in every 100 people, and one thing is clear: Genetics plays a role. Sydney’s uncle had schizophrenia, and scientists have identified more than 100 genes that can raise the risk for it.

Now, researchers based at the Broad Institute in Cambridge and Harvard Medical School have pinpointed the gene that is the biggest risk factor for schizophrenia discovered so far, and figured out how it does its damage: It makes the brain prune away too many of the connections between neurons.

“[I]t may be like you have an over-energetic gardener who prunes back so much that the bushes die off…”

– Bruce Cuthbert, of the National Institute of Mental Health

That finding, just published in the journal Nature, may also explain why schizophrenia tends to hit at such an odd age, in the late teens and early 20s. That pruning of connections is a normal process that ramps up during adolescence, but this genetic culprit may make it go overboard.

Pruning may sound bad, said Bruce Cuthbert, the acting director of the National Institute of Mental Health, but actually, it’s helpful: “It’s like clearing away the underbrush so your brain can function more efficiently.”

But, he said, “in people with this overactive version of the gene, it may be like you have an over-energetic gardener, who prunes back so much that the bushes die off because they don’t have enough branches.”

Cuthbert called the paper a “genetic breakthrough” and “a crucial turning point in the fight against mental illness.” Eric Lander, director of the Broad Institute, said it means we’re finally starting to understand what causes schizophrenia at the level of brain biology.

“For the first time,” Lander said, “we’re opening up the black box and looking inside and seeing, how does the disease really arise? That makes this, in my opinion, perhaps the most important paper in schizophrenia since the disease itself was ever defined,” over a century ago.

This scientific excitement does not mean, however, that the findings will lead to new treatments for schizophrenia any time soon, Lander and others said. It takes years for such basic science to translate into treatments — if it ever does.

But the new paper does suggest some promising new targets for drug development, some already being worked on for other diseases, said Harvard Medical School’s Steve McCarroll, who led the research team. Continue reading

Mass. Men Hit Particularly Hard By Opioid Crisis, New Data Show

The opioid crisis in Massachusetts is hitting men particularly hard.

Over the first nine months of 2015, 76 percent of the confirmed overdose deaths in the state were men, according to the latest quarterly opioid snapshot from the Department of Public Health.

From January through September of last year, 604 men died of opioid-related overdoses, compared with 187 women who overdosed and died over the same period, the department said.

Wednesday’s snapshot is the first time the state has released demographic data on the crisis. Continue reading

Earlier Overdose Estimates: