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Mass. General Launches Trial Of Old TB Vaccine For Type 1 Diabetes

A blood test to check glucose levels (Alden Chadwick/Flickr Creative Commons)

A blood test to check glucose levels (Alden Chadwick/Flickr Creative Commons)

Type 1 diabetes, the autoimmune form that usually strikes young people, is big and getting bigger: As many as 3 million Americans may have it, and their numbers are growing quickly and mysteriously.

So any promise of potential progress is a big deal, and it was splashy news back in 2012 when Dr. Denise Faustman, director of the Immunobiology Laboratory at the Massachusetts General Hospital, reported positive results for a test of a tuberculosis vaccine called BCG — Bacillus Calmette-Guerin — in a tiny trial of three longtime diabetes patients. Of particular appeal: BCG has been around for nearly a century, has been shown to be safe and, long since generic, is also cheap.

Now, Faustman has just announced the launch of a far bigger human clinical trial, aiming for 150 patients from ages 18 to 65. Though BCG is known as a vaccine, the trial will use it not to prevent diabetes but to try to reverse the disease — at least partially — in patients who already have it.

Dr. Faustman’s research, funded mainly by the Iacocca Foundation, has been considered somewhat controversial, so the results of the new trial — which is expected to last five years and is a “Phase II” trial to assess how effective the treatment is — could lay that debate to rest.

Our conversation, lightly edited:

So how do you see the headline here? And should it begin ‘This is not a cure’? What’s your main message to the public?

I think the main point of what we’re doing is: These are the first trials trying to intervene immunologically in people with long-standing autoimmunity and trying to reverse the disease, but doing it with a cheap, inexpensive, hundred-year-old drug.

Dr. Denise Faustman, director of the Immunobiology Laboratory at Massachusetts General Hospital (Courtesy MGH)

Dr. Denise Faustman, director of the Immunobiology Laboratory at Massachusetts General Hospital (Courtesy MGH)

But how would you calibrate the promise, or hope, of how well this might work for people?

It’s interesting because these trials, although we were kind of the first in the world to start in Phase I, they’ve caught on, on a global basis — using repeat BCG in diverse autoimmune diseases, such as multiple sclerosis, such as Sjögren’s disease. So, although we were kind of lonely to begin with, suggesting this hundred-year-old drug might have major therapeutic impacts, we’re not so lonely anymore. In fact, in Europe, there are Phase III trials going on in multiple sclerosis.

So, we’re seeing clinical effects in patient populations where people thought it wasn’t possible to reverse or partially reverse a disease. So we’re pretty hopeful that this inexpensive way might make a significant dent on the clinical course of a disease and do it at incredible cost savings to the public.

So, does that go as far as possible ‘cure’? Continue reading

How Art Can Re-Order A Harsh, ‘Deformed’ Childhood

Artist Evelyn Berde was born with congenital scoliosis in 1950 and spent many years in and out of Massachusetts General Hospital, confined to a bed for months at a time.

Her art, she says, is informed by her experience living with her “deformity,” as it was referred to back then, and her childhood growing up in the old West End of Boston, a low-income neighborhood near MGH and the Charles River, which was razed in the late 1950s, displacing many residents.

It wasn’t an easy childhood: Alcoholism ran in the family and Evelyn’s brother drowned in the Charles River when he was nine and she was just six. Evelyn was subjected to numerous surgeries and procedures for her scoliosis — some that now seem barbaric.

But art, she says, “has the ability to lift us out of one place and take us to another.”

Here, you can listen to Evelyn talk about five of her paintings and tell the stories that helped shape them.

Artist Evelyn Berde's "Shame" (Courtesy Berde)

Artist Evelyn Berde’s “Shame” (Courtesy Berde)

Artist Evelyn Berde's "July 12, 1956" (Courtesy Berde)

Artist Evelyn Berde’s “July 12, 1956″ (Courtesy Berde)

Continue reading

Another Suspected Ebola Case In Boston: 5 Reassuring Thoughts

(Adam Cole/NPR for the Goats and Soda blog)

(Adam Cole/NPR for the Goats and Soda blog)

This morning, my heart went out to WBUR’s Jack Lepiarz as he waited outside Massachusetts General Hospital in the pre-dawn rain, shivering despite his five layers of clothing, for possible word on a patient who may have Ebola.

But along with my sympathy, I felt an odd calm — very different from the alarm I felt in mid-October when we had an Ebola scare in Braintree.

What’s changed? Perhaps more than anything, the steady accumulation of time without another case contracted in the United States since two Dallas nurses caught the virus from Thomas Eric Duncan eight weeks ago. But also, it’s that this rare and terrifying virus, synonymous with “Hot Zone” nightmares, has become ever more familiar, and its limits more clear — even as it remains a major scourge in Africa.

The latest word from MGH is that the patient’s initial test for Ebola was negative. Good news, but these are the thoughts that most suppress my stress hormones:

1. Boston Hospital Strong

This is the medical mecca that became a model for the country in its handling of the marathon bombing injuries. It was prepared for that emergency, and, as Martha Bebinger reported, it has six hospitals prepped and ready for Ebola patients:

The six hospitals collaborating to provide care include Bay State Medical Center in Springfield and five Boston facilities: Boston Medical Center, Beth Israel Deaconess Medical Center, Brigham and Women’s Hospital, Tufts Medical Center and Massachusetts General Hospital.

“Hundreds of people at each hospital have spent incalculable hours in the necessary planning, training and practice efforts that are needed to respond to the challenges posed by this disease,” said Dr. Paul Biddinger, vice chair of emergency preparedness at Mass General.

Boston Children’s Hospital says it expects to join the Ebola treatment collaborative, and UMass Memorial in Worcester may as well. The other 59 acute care hospitals in Massachusetts would screen a patient, hold anyone who is at high risk or Ebola-positive in isolation, and then transfer the patient, says Public Health Commissioner Cheryl Bartlett.

2. Airborne? Not

Scientists don’t like to say “never,” so even though all indications are that Ebola spreads only through direct contact with bodily fluids, it initially scared me when there were even hints that it might spread more easily.

This interview with Boston University Ebola researcher Elke Muhlberger helped — Reality Check: How People Catch Ebola, And How They Don’t – but what helped even more was this great recent explainer from NPR: Ebola in the Air: What Science Says About How Ebola Spreads.

It includes the helpful graphic at the top of this post, and this wonderful little story, to be recalled when next you sit near a coughing passenger on the T:

Take the case of Patrick Sawyer. Back in July, the Liberian-American businessman boarded a plane from Monrovia to Lagos, Nigeria. He was clearly very sick — and very contagious — with Ebola. He even vomited while on the plane.
There were about 200 other passengers on the flight. None of them got infected.

3. Bedside Care Continue reading

Review: ‘Ether Dome’ Play Won’t Put You To Sleep But Could Use Scalpel

Greg Balla, Lee Sellars (seated), Tom Patterson and Richmond Hoxie act in a scene from "Ether Dome." (Courtesy T. Charles Erickson/Huntington Theatre)

Greg Balla, Lee Sellars (seated), Tom Patterson and Richmond Hoxie act in a scene from “Ether Dome.” (Courtesy T. Charles Erickson/Huntington Theatre)

Ouch. That’s what I was saying during several of the graphic tooth-pulling and surgery scenes of “The Ether Dome,” a play about the origins of modern anesthesia now running at the Calderwood Pavilion in the South End through Nov. 23.

And that’s also what I said when I read this devastating but (in my opinion) perfectly on-point line in Carolyn Clay’s review of the show on WBUR’s arts blog, “The Artery”: “…it seems clear that the dramatist needs to administer some pain balm to herself, pick up scalpel and saw, and hack a few limbs off baby.”

Clay’s review begins:

BOSTON — You won’t require anesthesia to get through “Ether Dome,” Elizabeth Egloff’s relatively new play built on the introduction of ether — right here at Massachusetts General Hospital in 1846 — to alleviate the horrific pain of surgery. But neither will you be held to the edge of your lecture-hall seat (we the audience are medical-student observers in the dome). The three-act play is so diffuse, with at least four questionable protagonists, that there is really no one to root for — except, of course, the ether, which both transformed Hippocratic barbarism into a pretty smooth ride and started the medical ball rolling in the direction of big business.

As an utterly amateur theater-goer who was drawn to the show by the medical history, I humbly concur. It was a great pleasure to watch some of the grand old men of Massachusetts General, men whose names now grace the hospital’s buildings, brought to life in all their quirky, grumpy, brilliant glory. But I did wish for more of an editorial scalpel. Read the full “Artery” review here: The Huntington’s Ether Dome Won’t Put You To Sleep.

Even In Mass., Hundreds Of Young Central American Refugees Seek Care

"Flor" (Richard Knox for WBUR)

“Flor” (Richard Knox for WBUR)

By Richard Knox

CHELSEA, Mass. — The young Honduran woman appeared at the Chelsea HealthCare Center last February, fearing she was pregnant.

“Flor” — a pseudonym to protect family members back in Honduras — had paid a “coyote” $8,000 to escort her and her 3-year-old daughter to the U.S.-Mexican border. But when they got to the border town of Nuevo Laredo, the coyote sold her to a gang that held her in a tiny room with seven other women.

They raped her, then told her to pay $17,000 or they’d sell her daughter’s organs and force her into sex slavery.

Up in Massachusetts, her mother and father scrambled to borrow the money and wire it to Nuevo Laredo. Her kidnappers released Flor and the little girl; she doesn’t know what happened to the other women.

Flor and her daughter are among hundreds of Central American immigrants who’ve made their way to the blue-collar town of Chelsea, Mass., over the past year.

They represent a quiet influx that began months before the phenomenon hit the headlines and protests began flaring in communities from Cape Cod to California.

They come to Chelsea because many of them have family there. Sixty-two percent of the town’s 35,000 residents are Latino, and many are from Honduras, El Salvador and Guatemala.

As we sit in a conference room at the Chelsea health center, the sun backlights the thick dark hair that frames Flor’s broad face as she tells me how and why she made the 2,300-mile trek from the Honduran capital of Tegucigalpa.

“The decision I made, why I came here, was to give a better future to my daughter,” Flor says in Spanish, silent tears trickling down her cheeks. “In Honduras, it is very difficult. The gangs, they’re killing a lot of people. You have to give money month-to-month or they go to your house and they kill you.” Continue reading

Son, Mom, Psychiatrists Reflect On Finding Your Own Way With ADHD

Peter and Ellen Braaten (courtesy)

Peter and Ellen Braaten (courtesy)

Peter Braaten, now 20, still retains an indelible third-grade memory of being unable — simply unable — to stay seated in a reading circle. “And I just started walking around, because that’s what made me feel okay at the time. And the teacher said, ‘No, sit down, sit down.’ And I basically just couldn’t sit there, because I felt unsettled at the time. And I just couldn’t read, I wasn’t getting into it, so I kept pacing, kept pacing…”

Ellen Braaten, PhD, Peter’s mother and the chief child neuropsychologist at Massachusetts General Hospital, is an expert on Attention Deficit Hyperactivity Disorder, but that doesn’t mean it was easy to cope with it in her son. She recalls the “humbling” experience of going to IEP — Individual Education Program — meetings with school staff as a parent rather than an expert: “Peter has seen me in IEP meetings where I’ve had to yell at them…”

They share their experiences in the podcast above with Dr. Gene Beresin, director of the Clay Center for Young Healthy Minds at Massachusetts General Hospital, and the Center’s associate director, Dr. Steve Schlozman, who treated Peter. One central message from the podcast, Dr. Beresin says: “As with every psychological problem, we all have to find out what works for us. Because what works for one person is not necessarily what works for all. There are no magic bullets. No platitudes. No simplistic answers.” But Peter is now earning all A’s in community college, helped in part by academic coaching and regular exercise. The post below supplements the podcast above.

By Peter Braaten, Ellen Braaten and Gene Beresin
Guest contributors

Peter:

One of the most difficult things for me about being diagnosed with ADHD (especially at such an early age) was understanding this as a helpful push in the right direction. It was very hard for me to appreciate what a “diagnosis” means. Does it just mean a guide for treatment? Well, that might be fine for a doctor, but in my experience it is not good guide for others. In some ways, it significantly influences the ways others view you. Some understand what it means, while others don’t — some adults around me did not even believe it exists or just seemed to disregard it.

‘I have gotten in trouble more times than days I’ve lived on this planet.’

Context is what I find difficult with this diagnosis. It is really something that affects every aspect of your life, which is why it is so hard for other people (teachers, parents, etc.) to understand what it means for an individual to have ADHD. A diagnosis in itself does not inform others around you what tasks are easy or difficult. It does not differentiate effort levels. So for me, some activities have been pretty easy to accomplish, while others are very hard, if not impossible, without some kind of coaching. And the amount of energy that it takes me to do different projects is highly variable. But only I know this, and a teacher, parent, friend might not know what I am going through — they are not living my life.

We live in a world where results are everything. Too often I have been told to just ‘try harder.’ Well, ‘trying hard’ just doesn’t cut it anymore – it is not so simple if you have ADHD, and especially if you have problems with organization in some tasks. I have gotten in trouble more times than days I’ve lived on this planet because I complete 85% of an assignment, task, or any kind of job. And then when I just cannot do the rest, others around get angry, frustrated, or don’t understand. And worse, I get really down on myself! Continue reading

Virtual Check-Ups: The Doctor Will See Your Online Responses Now

(Medisoft via Compfight/Flickr)

(Medisoft via Compfight/Flickr)

Veronica Thomas
CommonHealth Intern

Like many patients with chronic conditions, Lesley Watts used to come in to the doctor’s office for a check-up on her digestive disorder every 12 months. This not only meant time spent in traffic and scouring for a parking spot, but also the brain fog and stress of answering her doctor’s questions on the spot.

But a year ago, when it was time for her visit, she instead  received an email reminder to pull up an online form that asked her everything her doctor needed to know about her symptoms. From the comfort of her recliner, Watts carefully answered the questions, among them: “Overall, how have your reflux symptoms been since your last office visit?” “How much have your symptoms affected your work, social, and/or home life?”

When she was satisfied with her responses, she clicked “submit.” The next day, she received instructions from her doctor about how to manage her symptoms better. Visit complete. And patient satisfied.

“It asked me questions that I had never been asked before, and as a consequence, I learned about symptoms I had not recognized,” she remembers. “I believe I received better care because I was able to take my time and provide more accurate answers.”

“We believe that it can actually increase your engagement with the system because you’re thinking about your condition outside of the physician’s office.”

– Dr. Ronald Dixon

Virtual care and tele-medicine are hot health topics, replete with weighty promises of revolutionizing healthcare. But they often refer to realtime video-chatting or texting with a clinician—whether it’s your personal provider or a random doctor overseas.

The Massachusetts General Hospital service that Lesley Watts participated in aims to conduct virtual visits without the realtime interaction.

Instead, patients complete an online questionnaire for their specific conditions, and send it to their personal doctor—whom they already know and trust—for review and response. For the past two years, primary care clinicians at an MGH Beacon Hill practice have been using over 30 different forms to follow up with some of their adult patients.

According to Dr. Amy Fogelman, a physician at the Beacon Hill practice, the clinical questionnaires are especially useful for chronic conditions that need management over time, like obesity and hypertension. In fact, the obesity questionnaire has proven more effective at helping patients lose weight than any other method she’s tried, she says. Continue reading

Boston Marathon Medical Director: Getting Back To What The Race Is About

 

Medical personnel work outside the medical tent after the Boston Marathon bombing on April 15, 2013. (Elise Amendola/AP)

Medical personnel work outside the medical tent after the Boston Marathon bombing on April 15, 2013. (Elise Amendola/AP)

Last April 15 at about 2:45, Dr. Aaron Baggish was enjoying the sunny spring day and, in his role as medical director of the Boston Marathon, marveling at the low volume of runners who needed his care. Then the first bomb exploded, about 15 feet away from him. It blew out his right eardrum but the crowd blocked much of the force of the blast, and within seconds he was over the barrier and starting to work on the injured.

After the bombing, Dr. Baggish, who heads the Cardiovascular Performance Program at Massachusetts General Hospital, declined requests for interviews, feeling unable to speak publicly about what happened. But as Boston gears up for its next marathon on April 21 and he prepares to help oversee the race’s medical staff once again, he agreed to share some of his thoughts.

As you reflect back on what happened at last year’s marathon, what are you thinking, what lessons do you see?

Basically, I gave up very early on trying to make sense of any of this. There’s no way to make sense of a senseless, horrible act. We’ll never be able to put it into a neat compartment and say, ‘Oh, yes, that’s why this happened.’ No sense can be made of it. So the next step is, what was the impact on me personally? How do I go about some form of healing process? And how do you reconcile the personal trauma with ‘I have a job I have to do’? And we have a job now that we have to do this year, which is as important if not more important than ever: To run the safest, most medically comprehensive race we possibly can.

Are you medical director again?

Of course. You’d better believe it. Nowhere I’d rather be.

Dr. Aaron Baggish (Courtesy MGH)

Dr. Aaron Baggish at work (MGH)

To ask you your own questions, what was the impact on you personally? How do you go about some form of healing process?

It’s been a series of phases, if you will. There was an immediate, necessary phase of blocking everything out and dealing with the professional aftermath: the meetings and debriefings and making sure the volunteers were okay. That lasted for about a month and was more of a business-as-usual sort of feel than anyone could imagine.

But once the media coverage slowed down and Boylston Street was cleared, that’s when the real, hard personal work started. That’s when the concept of PTSD became a reality.

For example?

For example, I was participating in a Triathlon on Lake Winnepesaukee in August. It’s a race I do every year, a half Iron Man, it’s a special day for me, and I was standing on the beach and watching the professional athletes get going, and they fired a cannon for the men’s start. I knew it was coming. What I didn’t realize was that they would fire a second cannon for the women. So three minutes later, they fired a second cannon and I just disintegrated. I had an unbelievable physiological response. I became nauseous, shaking, and it was then I realized that this was a real, deep scar that would be left for a long time. That was a turning point for me; it made me aware I needed to talk about things more, not publicly but with family and friends and colleagues. That was a good step, and over the fall I very actively engaged with people I trust and feel emotionally safe with, to make certain I could start processing some of this. That took some time, and there were some dark moments there. Continue reading

Must-Read: Dr. Arnold Relman On Lessons From Breaking His Neck

Dr. Arnold Relman on YouTube in 2009.

Dr. Arnold Relman on YouTube in 2009.

Dr. Arnold Relman, former editor of the New England Journal of Medicine, has long played a rare role in the health care sphere: He’s an exceedingly senior and authoritative Harvard figure willing to speak out about what’s wrong in American medicine, from financial conflicts to the need for health care reform.

Now, unfortunately, Dr. Relman has new, first-person lessons to share. In a powerful and compelling piece in The New York Review of Books — On Breaking One’s Neck — he describes the stairway fall that nearly killed him at age 90, and offers his assessment of the care he received at Massachusetts General Hospital and Spaulding Rehabilitation Hospital in Cambridge during his time as a desperately ill patient.  Among the lessons he shares:

What did this experience teach me about the current state of medical care in the US? Quite a lot, as it turns out. I always knew that the treatment of the critically ill in our best teaching hospitals was excellent. That was certainly confirmed by the life-saving treatment I received in the Massachusetts General emergency room. Physicians there simply refused to let me die (try as hard as I might). But what I hadn’t appreciated was the extent to which, when there is no emergency, new technologies and electronic record-keeping affect how doctors do their work. Attention to the masses of data generated by laboratory and imaging studies has shifted their focus away from the patient. Doctors now spend more time with their computers than at the bedside. That seemed true at both the ICU and Spaulding. Reading the physicians’ notes in the MGH and Spaulding records, I found only a few brief descriptions of how I felt or looked, but there were copious reports of the data from tests and monitoring devices. Conversations with my physicians were infrequent, brief, and hardly ever reported.

What personal care hospitalized patients now get is mostly from nurses. In the MGH ICU the nursing care was superb; at Spaulding it was inconsistent. I had never before understood how much good nursing care contributes to patients’ safety and comfort, especially when they are very sick or disabled. This is a lesson all physicians and hospital administrators should learn. When nursing is not optimal, patient care is never good.

Read Dr. Relman’s full piece here. One personal reaction: I felt a bit defensive for Spaulding; my late mother received excellent care at their Boston facility. But then I thought: If every patient — particularly patients with as much authority as Dr. Relman — routinely reported publicly on where the nursing care was great and where it was inconsistent, that could help lead to constructive change at the places where it’s needed. We often talk about care that falls short in personal chats, but hospitals need that feedback — and perhaps some of it should be public — to help them improve.

Readers, thoughts, reactions?

Brain Cancer: Gene Test May Do Work Of Biopsy, Help Track Tumors

Performing a brain biopsy (Wikimedia Commons)

Performing a brain biopsy (Wikimedia Commons)

If you remember the progression of bad medical news about the late Sen. Ted Kennedy, you know that a diagnosis of brain cancer tends to go like this: Something prompts suspicion — in Kennedy’s case, a seizure. A brain scan adds more information. Then the surgeons drill through the skull for a biopsy, taking a sample of the tumor for an analysis of its make-up that then guides the medical team’s treatment strategy.

New research just out of Massachusetts General Hospital suggests a possible improvement on that routine: Instead of the brain biopsy, the researchers found, it may be possible to analyze a patient’s brain tumor just by taking a sample of cerebrospinal fluid and checking the genetic material in tiny sacs that the tumor sheds into the fluid. And that method could also enable doctors to track a tumor over time — it’s far easier to take repeated spinal fluid samples than to repeatedly drill into the skull — and thus follow how the tumor evolves and fight it as it does.

Xandra Breakefield of Mass. General’s Molecular Neurogenetics Unit explains that these latest brain-tumor findings fit into the relatively new field — from perhaps the last five years or so — of analyzing DNA and RNA in body fluids to track cancer patients’ tumors.

“Each tumor is a bit of an individual in the sense that different kinds of changes in the DNA of the cells turn it into a tumor and define the kind of tumor it is,” she said. “So in this age of personalized medicine and making drugs for cancer that target specific changes that are driving specific tumors, when a person starts having symptoms, the physician wants to know, is this a tumor and if so, what kind of a tumor is it? Is it going to be slow-growing or fast-growing? That’s going to determine how aggressively, or how, to go after it.”

Dr. Breakefield and her team found genetic evidence  in spinal fluid that a tumor was very slow-growing — good news for a patient and very important for the medical team to know. When it’s known that a tumor is less aggressive, surgery may be able to spare more of a patient’s brain, she said. Continue reading