Doctors at several hospitals are reporting that based on injuries, it appears that the bombs were packed with shrapnel.

Bebinger quotes Dr. Stephen Epstein, at Beth Israel Deaconess Medical Center saying: “What we were seeing looked like BBs,” consistent “with the explosive devices.”

WBUR’s Asma Khalid was at Massachusetts General Hospital for a news conference this morning. She said doctors have treated 31 patients; 12 were admitted, 8 are in serious condition and 4 required amputations of lower extremities, according to Dr. George Velmahos, Chief of Trauma Services at MGH. They are more optimistic than yesterday, Khalid said; “everyone who was in the ICU is alive and stable.”

Khalid was also at Tufts Medical Center and reports that doctors saw 14 disaster-related patients; 10 are still in the hospital. She reports that there have been no amputations so far. She said Bill Mackey, chief of surgery at Tufts, described injuries in the lower extremities and included open fractures, nerve damage and muscle damage. Most injuries were between the knee and ankle. She said the medical team detected small shards of metal, and small metallic fragments, ranging from 1 centimeter to a few millimeters.

As of this morning, seven of the 10 kids treated at Children’s Hospital Boston have been released, according to the hospital. Three pediatric patients remain, with two of them in critical condition in the Medical/Surgical ICU and one on a surgical unit. Here’s the official update:

Our latest patients included:

– 2-year-old boy with a head injury in good condition.

– 10-year-old boy with multiple leg injuries in critical condition.

– 9-year-old female with leg injury in critical condition.
The seven patients discharged were the following:

– 14 -year-old boy with head injury

– A 42-year-old father of a patient
– A 7-year-old boy with a minor leg injury
– A 12-year old with a femur fracture
– A child in good condition
– A child in good condition
– A pregnant woman who was transferred to BWH

Here’s the emailed update from Boston Medical Center:

Boston Medical Center received 23 patients from the Boston Marathon incident, ranging in age from 5 to 78, who sustained injuries ranging from scalp wounds, abdominal wounds and soft tissue injuries to lower leg injuries. Of these 23, 19 remain at Boston Medical Center; 10 are listed in critical condition, 3 in serious condition and 6 in fair condition. The majority of these patients will require further surgery over the next several days.

Chelsea Conaboy reports on Boston.com that there’s widespread agreement among doctors that bombs were loaded with shrapnel. She writes:

Each doctor who has spoken before TV cameras and reporters this morning has described similar things: Pellets, small BBs, headless nails—projectiles they believe were packed with the bombs, removed from some patients by the dozens.
“My opinion is that most of them were in the bomb,” said Dr. George Velmahos, trauma chief at Massachusetts General Hospital. “I think it’s unlikely they would be so consistent if they were pulled out from the environment.”

Dr. David P. Mooney, Boston Children’s Hospital trauma director, described deep shrapnel wounds in a 10-year-old being treated there who is in critical condition.

Dr. Ron Walls, chairman of emergency surgery at Brigham and Woman’s Hospital, gave a similar description of the items found, saying that nails about 1 centimeter long and small objects about twice the volume of BBs were removed from several patients. The items “clearly were designed to be projectiles that were built into the device.”

At Boston Medical Center, Dr. Andrew Ulrich said the shrapnel “could be described as buckshot.”

When I was ten, my parents sat me down on the edge of their bed and told me I had to go back to the hospital. I had already been to two in the Boston area; one of which I had defiantly walked out of after the radiology nurse, unable to find my vein, had made a black and blue mess of my arm. But I wasn’t going there; I was going to the other one, Boston Children’s Hospital.

My parents never used the words “sick” or “cancer” or the even scarier terms like “neuroblastoma” and “stage four” in that first conversation. My only question was: Would I have to stay overnight? Our discussion was short and simple. But was it enough? Would explaining the situation to me — really explaining it — have done any good? Or would it, maybe, have done more harm? Did I, at ten years old, have the maturity to understand what was truly happening to me, or what was really at stake?

I don’t know. But fourteen years later, I’ve done a lot of thinking about it.

I know that my parents did the best they could to explain things and to include me in the medical decisions that they felt I could handle. I also know that it was always hard. Recently, I spoke to Dr. Steven Joffe, a pediatric oncologist at Dana Farber/Children’s Hospital Boston and chair of the Children’s Oncology Group Bioethics Committee, about how involved children should be in there own medical care. Dr. Joffee was also my primary oncologist as a kid and I still see him for check ups every year or so.

“A lot of parents…their first instinct is to protect their kids,” says Joffe. “So my sense is that many parents find it very difficult to engage their kid in the medical decision making.”

Among children, there are two age groups with the highest incidences of cancer, according to the CDC: those ages 1 to 4 and 15 to 19. Clearly, toddlers are incapable of true medical decision-making. For them, “it’s an issue of explaining but not so much an issue of deciding,” Joffe says.

The opposite is true for older children.

It’s those “medium kids,” he says, around ages 9 to 15, who are likely capable of making tough medical decisions for themselves. But it can get quite complicated.

It’s well known that a lot of decision-making capabilities are just starting to develop in kids as they enter the teenage years. The ability to weigh different options against each other and to understand the consequences, both short and long-term, are concepts that older kids and young teenagers are just beginning to grasp. It’s also a time of changing family dynamics, where families vary the most in how they engage with their kids on a range of issues, including medical but also, all manner of other fraught topics, says Joffe.

The most important factor in medical decision-making is maturity. The middle years “are the times when kids develop most differently. You might have two kids of the same age, one of whom is just much more mature than the other,” Joffe explains. But maturity is about much more than just age. Even in children, life experience plays a huge role.

I was a “medium kid” when I began aggressive treatment for my illness, but my level of involvement was closer to that of a little kid’s.

There was a lot of explaining that bad things were going to happen, but I had no say in the decision to let those bad things happen or how and when they would happen. As treatment progressed, and I started to understand the situation and interpret some of the things that were being left unsaid, I began to make my voice heard. At first, it was about small things. I wanted to watch “I Love Lucy” during radiation treatment, not “Beauty and the Beast.” I wanted to work with a certain nurse and not with others.

Eventually, I started making requests that affected my care. During surgery, metal pins were placed in my abdomen so that radiation could be focused on the right spots later on. After surgery, they told me they had to permanently mark the corresponding location of those pins on my skin, like a tattoo, so the doctors could find them. I told them no. I wailed that they had promised me no pain that day. They would have to do better. And they did. Sharpie markers, it turns out, are just as effective as ink in the short term, and virtually pain free.

And by the time my year of treatment was over I had aged at least ten, which apparently, is not uncommon. Joffee said the gravity of enduring treatment often matures a kid far beyond his or her biological age.

Still, parents might deem some information too much for their child to handle, for instance, a recurrence of cancer that is incurable. “It’s not an easy thing to say to your kid, or listen to a doctor tell your kid,” Joffee says. “But can a kid really contribute to an informed decision when they don’t know something that fundamental, if they’re making decisions under false assumptions?”

It’s situations like these, where the choice between continuing treatment or opting for palliative care must be made, that Joffe thinks engaging the child is most crucial. “Very often, I think parents feel they cannot stop doing the things that allow them to keep open the hope for a cure. The problem is those things are done…to their kid, not to them, and so the question comes up: How do you make sure that what you’re doing is at least not contrary to what the kid wants, how do you make sure that the kid gets a voice?”

So, in the midst of the trauma and incredible difficulty of a serious illness, how do you ensure that your child has a voice? Both the family and the medical team must make an effort to keep the child, not the parents, at the center of the discussion. Joffe admits that this isn’t easy to do, but one example has stuck with him:

I remember being in clinic with one of my attendings who was a pediatric rheumatologist. She had just diagnosed a kid who was maybe 7 or 8, quite young, with Lupus. It was the clinic visit where they were disclosing the diagnosis, so that’s a pretty heavy conversation. Instead of speaking to the mom and letting the kid listen, she spoke to the kid in kid appropriate language and let the mom listen. It was really cool, and a good example of how to let that kid know that this was about her, that she wasn’t a bystander to her own illness.

Can this kind of approach reduce some of the trauma associated with a critical childhood illness? I think so. I’ll never forget the doctors and nurses who engaged with me that way.

It’s easy to sideline the child in the medical decision-making process, but it’s incredibly hard on a child to feel that they’re systematically not heard. That, at least, is loud and clear. Looking back, I realize that I was rarely involved in making decisions for my care, and when I forced any change it was always in the form of requests, not collaborative decision-making. But I’ll never forget the doctors that did engage me in the decisions or the nurses that gave me options. I’ll never forget the first time a doctor told me I had a choice to let them examine me or not.

Lindsey Kempton, 24, is the the Associate Editor for MTV VOICES, MTV’s digital magazine focused on youth activism and social responsibility. She lives in New York.

That conversation led to a gift of $3 million from the foundation started by Mary Alice’s grandfather, J. Willard Marriott, to launch the first-of-its-kind Boston Center for Endometriosis, “a joint undertaking to discover causes, promote prevention, and develop new treatments and cures for the disease of endometriosis,” according to an announcement to be released today by Boston Children’s Hospital.

The Center will be the first in the world to both conduct research and treat endometriosis in women of all ages, from adolescence — when the disease often begins — through adulthood, according to Children’s Hospital. The Center will include a unique repository to collect urine, saliva, tissue and blood from patients in order to research potential biomarkers and non-surgical diagnostics, to find new treatments, and eventually a cure.

Emily Hatch saw seven specialists and underwent numerous invasive tests over 18 months to try to figure out what was causing her terrible abdominal pain before she was finally diagnosed and treated at Children’s. Read her full story on CommonHealth here.

More than 6 million women in the U.S. suffer from endometriosis, which occurs when cells that normally grow in the lining of the uterus (endometrial cells) start growing in other parts of the body. The resulting implants or lesions can be extremely painful and if left untreated, the condition can cause infertility.

The Children’s Hospital press release is here:

BOSTON, Mass., April 18, 2012 – Boston Children’s Hospital and Brigham and Women’s Hospital today announced the inception of The Boston Center for Endometriosis, a joint undertaking to discover causes, promote prevention, and develop new treatments and cures for the disease of endometriosis.

The Center is the first in the world of its kind and will serve as the premier diagnostic, treatment, research, and educational resource for the disease throughout a woman’s lifespan, from adolescence through adulthood.

“The Boston Center for Endometriosis is unique in its features,” says Marc R. Laufer, MD, Chief of Gynecology at Boston Children’s Hospital, and a gynecologic surgeon in the Center for Infertility and Reproductive Surgery at Brigham and Women’s Hospital. “Currently, no one in the world has a teen-through-adulthood endometriosis program that can ensure both seamless clinical care for patients while conducting research to fuel scientific progress.”

The J. Willard and Alice S. Marriott Foundation today announced a $3 million leadership commitment to Boston Children’s Hospital to launch the Center and support its research efforts.

The Foundation’s gift will fund the Center’s innovative database and biorepository and the Endometriosis Research Awards program to encourage scientists to participate in the search for a cure. Half of the gift is a challenge grant that is contingent on raising another $1.5 million in research funds.

“The Center, through integration of clinical and scientific disciplines will bring together leaders in the study of endometriosis to advance our knowledge across the life-course through innovations in genetics, lifestyle, and environment to promote long-term health,” says Stacey Missmer, ScD, Scientific Director of The Center and researcher at Brigham and Women’s Hospital.

“Through our Foundation, the Marriott family has tried to make a difference in the world by supporting causes and organizations that share our ideals. Under Dr. Laufer’s leadership, we believe The Boston Center for Endometriosis will improve the future for girls and young women suffering with this devastating disease,” says Richard E. Marriott, Chairman, The J. Willard and Alice S. Marriott Foundation. “We hope that by matching gifts dollar-for-dollar, we will encourage individuals, families and organizations that care about this cause to join us in supporting the Center and accelerating discoveries that ultimately will lead to a cure.”

The first time I stood before a large audience to speak was when I was 13 years old. It was at my Bar Mitzvah. I walked up to the podium, looked out over the sea of faces, and thought to myself, I am a homosexual standing in front of all of these people. And I wondered what would happen if I told them.

That was in 1972, and even mentioning the word homosexual, unless paired with an expletive or derogatory adjective, would have been unacceptable at my synagogue. It would have been unacceptable in my home, my school, or any place I knew. I could not have conceived of telling my doctor. I assumed that I would never say out loud that I am a homosexual. The idea that I would someday be able to stand in an auditorium, stand anywhere, just a few miles from where I live with my husband, our two sons, and our dog, with everything but the white picket fence, was not something I could imagine.

Today I stand on a different stage. The Children’s Hospital Boston GLBT and Friends group asked me to share my story as part of its celebration day. How I got here, what I learned along the way, especially at Children’s, and how the world changed — these are what I will talk about.

A decade after I considered turning my Bar Mitzvah into a public confessional, I entered medical school at Harvard. Some students had started a gay group the year before. They had scoped out the territory, searched for role models, and come up nearly empty. In a creaky old closet, tucked way in the back, they found a world-renowned senior physician at Children’s. He advised against starting the group, offering that it was much better to be secretive about being gay so that no one would bother you. I’ve heard that same advice many times from men and women from earlier generations who had fewer options in their day.

Around the same time, a Harvard physician I later met was just coming out. He was spotted at a social event with someone his hospital’s Chairman of the Board suspected was gay. The Chairman reported to the hospital that he thought the physician was gay too and said that people like that should not be allowed to work there. Fortunately, the CEO ignored the Chairman.

There was a junior faculty member at Beth Israel Hospital who was out and actually willing to talk with gay students. When I made my pilgrimage to meet her, even she advised me to remain closeted until after I got my first semester grades. She explained that the school would want to kick me out if they learned I was gay, and they could use poor grades as an excuse.

That’s not to say that there was silence about gay people. We did learn about them in an elective course on “special” populations. One week we learned about prostitution; another, about drug addicts. In between, we learned about homosexuals. A real live one showed up to tell us what it was like. He was articulate and our own age and seemed just like all of us. Indeed, I knew him. We had gone to college together and he was a student at Harvard Law School. I sat in awe of his bravery and prayed no one had seen him say hi to me.

I came out to classmates I felt close to. They were mostly supportive. One time I was talking with a classmate about a guy who had asked me out on a date. She confessed that she had thought that being gay meant simply that men had sex with men; it had never occurred to her that they might actually go to a movie or fall in love. Her honesty gave me a window into what many peers believed, as I would learn repeatedly over the years when people let down their guard.

During medical school, I was on the admissions committee. Two people interviewed each applicant and then presented to the rest of the committee. There was an applicant who was outstanding in every category; I gave him a 10 out of 10. The other committee member who in- terviewed him, a doctor at Children’s, gave him the worst score we’d seen. His record at one of the top schools in the country meant that he would have had to have confessed to murder, or worse, preferring Yale to Harvard, to get such a low score. We waited to hear the explanation. He said that he just didn’t feel “comfortable” with the applicant.

The committee was baffled. I wasn’t, because I had met the applicant. He was a man who was effeminate. I didn’t know if he was gay, but I did know that he was someone who was likely to have been called names or to have been roughed up because people thought he was. The doctor who had interviewed him already had a reputation at Harvard College, where he helped premeds put together their applications for medical school. Gay students knew to avoid being assigned to him.

As it turned out, with no articulated explanation for the low score, the committee was unconvinced and went with my score. The applicant was admitted, got an MD/PhD, eventually came out as gay, and has gone on to do important work in transgender studies. I wasn’t sorry that the doctor who had interviewed him left Children’s before I began residency here.

A year later I was doing my rotations. On my adult neurology rotation, a young woman came to the emergency ward with urinary incontinence and other symptoms and signs of a herniated disc. The myelogram confirmed the diagnosis. The neurosurgeon was eager to operate. The neurology team was delighted that she was a great teaching case. But she proved a richer teaching case than we anticipated. The neurosurgeon abruptly canceled the operation. It turned out that the radiologist had reversed his reading.

When pressed as to why he no longer saw what even a third-year medical student could see (that would be me), he confessed that the neurosurgeon had pressured him to change his read. When our team met with the neurosurgeon, he was direct. He had seen what he assumed to be a lesbian novel at the patient’s bedside, and he wasn’t going to operate. His rationalization was that she might have inserted something into her urethra that caused her incontinence. He had no research or case studies to support his theory. He had no explanation for why a lesbian would do this. He had no explanation for why it wasn’t showing up on x-ray. He made it clear, though, that he wasn’t going to operate on a lesbian.

Then I heard a voice shout, “So, she’s a lesbian, what does it matter!” And then I realized that the voice was mine. There was a moment of silence as everyone turned to look at me, jaws agape. The neurosurgeon burst forth with questions. How do you know? Did she tell you? What did she say? Indeed, she hadn’t said anything. It was just that she and the woman by her side during all of this were the most obviously devoted couple I’d met in any of my rotations yet. The neurosurgeon held firm. To their credit, the neurology team got orthopedics to perform the surgery.

On another rotation, I was on a consult service that helped diagnose a man with AIDS. His case hit home. He had just moved across the country with his boyfriend, who was a first-year Harvard medical student. The pulmonary fellow on our team, a generally kind man, grumbled to me that he hated having to go into this patient’s room. And so we didn’t go in much. The patient’s intern also avoided him, even managing to find herself too busy to perform a timed blood draw one night for a key lab test. I was still there writing my consult note, so after several attempts to gently remind her to take a break from having a light evening and chatting with staff, I just did it myself. This patient was not unlike any number of patients at hospitals around the country, wondering why the clinicians who were supposed to provide care and comfort appeared to be avoiding and even judging them.

He eventually died. His surviving boyfriend, the medical student, joined some other medical students and me at the 1987 National March on Washington for Lesbian and Gay Rights. While there, our visit to the AIDS quilt, a collection of panels that each represented someone who had been lost, was particu- larly poignant as we remembered my former patient and so many other patients and friends.

Later, during residency, we had a child in the neonatal intensive care unit with two moms. The primary nurse assigned to him was incoherent on rounds. She couldn’t contain her distaste for the boy’s parents. She didn’t want either mom around, including the one who had given birth. The charge nurse pulled her off the case. This was the same neonatal intensive care unit in which staff also found it hilarious that a female utilization review administrator used to be a man; they snickered and whispered within earshot when she was there. I encountered the same infant again a few months later on the wards when he was admitted with bronchiolitis. There the nurses and physicians treated the moms with all the respect that every parent should receive.

After my third year, I entered a joint masters program at the Kennedy School of Government. Having benefitted from the peer support of the medical school gay group, I teamed up with some other students to start one at the Kennedy School. We organized a public screening of a documentary about the life of Harvey Milk, an early gay rights leader who was assassinated. I agreed to do the introductory speech for the evening. When I mentioned this to my boyfriend, a junior faculty member at the law school who was concerned about getting tenure, he told me that word would certainly get back to the medical school and I would not get a residency. That gave me pause. He also told me he would have to break up with me because he wouldn’t be able to be seen with me once I came out publicly.

That was eye-opening in so many ways, and basically guaranteed that I would go ahead and introduce the evening. We had tried to meet with the dean to invite him to make some remarks at the event, but he wouldn’t even talk with us. Through his assistant, he declined to attend the event, but he did send a letter for us to read. It talked about the joys of running for public office. It mentioned nothing about being gay or our new student group. His letter became an object lesson for the school, with the audience laughing vigorously at the words so carefully chosen to avoid giving any hint of support for our group.

A few months later it was time for me to pick medical school rotations for the summer, so I met with my attending from my pediatrics rotation at Children’s, who was also a member of the admissions committee for the pediatrics residency. He had decided that he should be my advisor. He told me that I was definitely going to get into Children’s for residency so I should take the opportunity to do adult rotations because I’d get plenty of pediatrics for the rest of my career. He told me who should write my recommendations, with him being at the top of his list. At the end of our conversation, I told him I had one more thing I wanted to talk about. I told him I was gay.

I felt I had to. He was inquisitive about his advisees’ personal lives, often asking us who each other was dating, and I didn’t want him to hear from someone else and think I didn’t trust him. Plus, my most important example of leadership, which was presumably something that residencies looked at, involved the Kennedy School gay group. He looked stunned. He said nothing for a long time. Then he asked if I had told anyone else at the hospital. I said that I hadn’t, and he told me not to tell anybody. I left, not sure of what to make of our meeting.

After the summer, I came back to meet with him to finalize my residency applications. The only new grade that had come in at that point was an A+ on my end-of-the-first-year masters project. I went back over my list of recommenders because I thought I should add an attending from the summer. That’s when he informed me that he would not be writing me a recommendation. This time I was the one who was stunned. I hadn’t seen it coming. It wasn’t lost on me that without a letter from the attending of my only pediatric rotation, I wouldn’t be able to become a pediatrician. That boyfriend who had told me that word would get back to the medical school and keep me from getting a residency was right. What he hadn’t anticipated was that I would be the messenger.

So now I was in a bit of a tight spot. I had been scheduled to take my final masters courses that fall, but I canceled them and looked for open pediatric rotations. Luckily, the two I found on short notice had wonderful attendings, Ken McIntosh and Bill Berenberg. Without their recommendations, I could not have applied in pediatrics anywhere. This makes the fact that my endowed professor- ship is named for Dr. Berenberg a particularly special privilege.

It may seem odd that I didn’t complain to anyone, but there was no one at the medical school or the hospital to whom I or my gay classmates thought it was safe to complain. There were no policies to protect us; no griev- ance boards; no mechanisms in place. Times have changed, but I still have undergrads ask me if they can come out in their medical school applications and medical students ask if they can come out in their residency applications. Yes, times have changed, but they have not changed enough.

I wound up matching at Children’s and went through residency afraid that if the faculty found out about me, I could be mistreated or marginalized. I felt like I understood why the Children’s professor had said several years before that it was better to be secretive so that no one will bother you. But I didn’t agree with him. I told myself that I would never again hide my orientation in an application or work in a place where I feared being out.

Residency left little time for a social life, but I did get out every now and then. One night I was in a line for an AIDS fundraiser. Suddenly there were shouts and we found ourselves being chased down the street by a group of guys with baseball bats yelling, “Faggots, go home!” After they’d made their point, they cleared out, leaving a man lying unconscious in the street. I ran back to help him. A nurse from Children’s also appeared. The man was cut and bloody. He was responsive to pain but not arousable. We tended to him until the ambulance came. From what I later read in the local gay newspaper, he remained cogni- tively impaired.

After residency, I moved to L.A. for fellowship and stayed for 16 years. I was open in my daily life. It was nice. I overheard fewer fag jokes, no one was trying to fix me up with their sister, and I became a resource for people of all ages who were coming out and scared. I brought my boyfriend Jeff, now my husband, to work events. I apparently was the first person to bring a same- gender partner to such things. A senior faculty member came into my office one day, closed the door, and com- mented on my bringing Jeff to events. He then awkwardly told me that he was gay and had a partner. I never did see him bring his partner to a work function, but I think it pleased him to know that things were different for the next generation.

That was on a Friday. On Monday they called back with news. They had committed to starting domestic partner benefits with the new year. This was remarkable. This was an insti- tution at which the residents, who were unionized, had recently included such benefits on their list of demands, only to have the administration refuse to come to the bar- gaining table unless that demand was removed. In the end, after visiting, I decided not to accept their offer, but they nevertheless followed through and implemented partner benefits. A simple nudge from outside an institution can sometimes have more impact than repeated requests from within.

Not long after, Gary Fleisher, our physician-in-chief, approached me about a search that was opening up for the position I’m now in. As I explored, I was surprised at how different the place seemed from when I was a resident and how comfortable I felt. My family wasn’t just something that was acknowledged but rather it was embraced. I was treated like any other recruit for a division chief position, with our hospital president Sandi Fenwick, Gary Fleisher, and others offering to help my spouse find a job and advising on how to find a preschool for our kids. There was something very natural about it. It was good to have my family structure treated as unremarkable.

It especially felt good after I got here and received a call from the head of our residency admissions committee, Sam Lux. He wanted to talk about an applicant I had interviewed. Sam feared that the applicant wouldn’t rank us #1 if his partner didn’t have an adult fellowship lined up in Boston. I was charged with making this happen. I asked for the partner’s name so that I could call the fellowships. It was an unmistakably male name. I felt like there had just been an earthquake and that no one had felt it but me.

As it turned out, his partner was so strong he didn’t need my help, but Sam wasn’t taking any chances. He was going on about how I had to call people at the Brigham and MGH and convince them to get their fellowship committees to meet early. Sam was so wonderfully oblivious to the pronouns. His nonchalance told me so much and drove home most clearly how different things were. I could not believe that in a mere two decades we had gone from “I’ve decided not to write you a recommendation” to “Your job is to get this guy’s partner a fellowship.”

I felt that way again a few months ago. I serve on the medical school promotions committee, which provides the final review before portfolios are passed on to the dean. On our docket was a faculty member from Children’s who has emerged as one of the leading researchers on the health of lesbian and gay youth. Committee deliberations are confidential, but I think I am within bounds to say that the enthusiasm for her accomplishments again gave me a sense of belonging, and another moment of realizing that what had once seemed impossible had actually come to pass.

Things really have changed. They have changed in so many places. And for that I am grateful. I have seen the Supreme Court rule that sex between people of the same gender is legal. I have seen gay marriage become a reality in Massachusetts. I have seen more and more states pass laws against discrimination in the workplace on the basis of orientation. I have seen gay youth come out in high school. I have seen gay college students baffled by the obsession of my generation with whether and when to come out and even the need to define ourselves by our orientation. I have seen it and thought back to myself as a young man who wondered why he was applying to medical school when he kept hearing that he would have to choose between being a doctor and being openly gay —- and I have felt both vindicated and happy.

It’s easy for me to think that my experiences two decades ago are ancient history. For me, they are. I’ve been lucky enough to construct a life that does not involve a daily fear of being outed, of being beaten, of being fired, or of having my children taken away from me. But many people still live with such fears. My experiences wouldn’t sound so quaint to them.

I am currently serving on the new Institute of Medicine Committee on Lesbian, Gay, Bisexual and Transgender Health Issues. The public testimony has been moving. The enthusiasm that people have for the very existence of the committee and the expectations they have for our report have been humbling. Their comments have been a reminder of just how marginalized people still feel, and how alienated they feel from the clinicians whom they depend on in their time of greatest need.

I was saddened by the recent case of Lisa Pond, who lay dying at a Miami hospital from a brain aneurysm while her partner of 18 years was blocked from seeing her. I was also saddened when I learned of the child of a lesbian couple who was hospitalized with a high fever in Bakersfield, California. The biological mother was allowed at the bedside while the other mom, who had legally adopted the child, was kept out, even though two parents were allowed for other children.

I was greatly dismayed when Lawrence King, an 8th grader in Oxnard, California, was shot and killed in his classroom for his presumed orienta- tion. And even closer to home, I was more than saddened when Carl Walker Hoover, a 6th grader from Springfield, Mass, committed suicide after enduring months of anti- gay bullying. There are many more stories like these.

Today is a great day to celebrate ourselves, our patients, and our institution, and appreciate how far we have come, but there’s still much more work to be done.
Thank you.

Readers, does this resonate? What have you seen in the medical arena?

During the very first song — “You Belong To Me” — and without any warning, Emily, then 13 years old, felt a stabbing pain below her belly-button unlike anything she had ever experienced. She clutched her stomach and doubled over, but that didn’t help. Before the song ended, she was rushed by wheelchair to an infirmary at the Boston stadium and her father was summoned to drive her home. “The pain was so bad I couldn’t stand up,” Emily recalled. “It was so sad because I’d been looking forward to the concert all year.”

That was the start of a medical odyssey in which the teenager from Wellesley saw seven specialists, underwent numerous invasive tests including a colonoscopy and endoscopy, and endured countless needles and scans of her body. Despite all that, her mother says, her underlying diagnosis eluded top experts at three major hospitals. At least one doctor told Emily she’d just have to live with the terrible pain. And while she was shuttling between doctors and missing school, Emily tried to keep her condition a secret, not telling friends because, well, she’s a typical teenager. “I just didn’t want to feel different,” she said.

Finally, after 18 months without a firm diagnosis, Emily and her mother, Mary Alice Hatch, found a doctor in Boston who was able to treat her.

In October, at age 14, Emily underwent surgery at Children’s Hospital Boston and only then learned she had Stage II endometriosis. Emily’s surgeon found significant red and white lesions in her pelvic cavity; her left ovary had effectively become fused to her pelvis. Today, she is still not entirely pain-free, but at least she knows what the problem is.

A Painful Secret

Endometriosis is often perceived to be a disease of adulthood. Years ago it was cast pejoratively as “a career woman’s” condition that mostly hit older women who had delayed child-bearing. But in fact, endometriosis frequently begins in adolescence. It can be passed genetically from mothers to their daughters; there is no cure.

Endometriosis occurs when cells that normally grow in the lining of the uterus (endometrial cells) start growing in other parts of the body: the abdominal cavity, ovaries, fallopian tubes, bowel, bladder or the area between the vagina and rectum, for instance. In rare cases these cells have been found growing in the brain or lungs.

This misplaced tissue, unlike normal uterine lining cells, has no pathway out of the body during menstruation. The resulting lesions can become intensely painful and cause scarring, inflammation, bowel and other problems. Advanced endometriosis can result in infertility.

The causes of endometriosis remain a mystery, and the growths generally can be detected only through surgery. Experts don’t know if women are born with these cells in the wrong location, whether the cells actually migrate or if the condition is caused by some disorder of the immune system. “One theory,” notes an NIH website, “is that the endometrial cells shed when you get your period travel backwards through the fallopian tubes into the pelvis, where they implant and grow.”

More than 6 million women in the U.S. suffer from endometriosis, according to rough estimates. And though most women with the disease say their symptoms started before the age of 20, endometriosis, while common, is greatly under-diagnosed, particularly in teenagers. No one knows exactly how many teens suffer from the condition but according to the medical website UpToDate, the “disease has been reported in 25 to 38 percent of adolescents with chronic pelvic pain.”

And because it falls under the rubric of “women’s troubles” — even worse, teenage-girl troubles — it can take patients and their families years to get the right doctor to pay attention.

In that regard, Emily’s case is not atypical. “Unfortunately, people don’t realize that this can affect young girls,” said Emily’s doctor, Marc Laufer, Chief of Gynecology at Children’s Hospital Boston and the Center for Infertility and Reproductive Surgery at Brigham and Women’s Hospital.”

Consider these numbers from one 2004 study:

• “Forty-seven percent of the women reported having to see a doctor five times or more before being diagnosed or referred. Those with the earliest onset of symptoms had to see the most doctors to reach diagnosis…”
• “Overall the delay between onset of symptoms and actual diagnosis of the disease was 9.28 years. Part of the delay was that the girl/woman took 4.67 years, on average, to report her symptoms to a doctor. Subsequently, the doctor, on average, took 4.61 years to diagnose the disease.”

In financial terms, one analysis estimated that endometriosis cost the U.S. $22 billion in 2002, including hospitalizations, loss of work, surgery, and medications.

Falling Through The Cracks

Adolescent endometriosis tends to fall through the cracks for several reasons, said Dr. Laufer. First, he says, many gynecologists aren’t comfortable performing surgery on 12-, 13- and 14-year-olds and there simply aren’t that many pediatric gynecologists in the country. Laufer, an internationally known expert on adolescent endometriosis, performs five or six such operations weekly.

Also, he says, the population that suffers from the condition is not prone to trumpet their intimate problems to the world. “It’s a disease that affects young women, specifically, adolescents who don’t know what the norm is. They don’t want to complain; it’s an age where you don’t want to feel different or stand out. If you’re having pain and can’t participate in gym or school, you don’t want to complain, you just deal with it.”

That’s what Emily intended to do, but her pain became unbearable.

After the Taylor Swift emergency, Emily’s mom made an appointment with the pediatrician. The doctor couldn’t pinpoint the source of the pain, but suggested it might be a gastrointestinal problem.

A Mom Goes Online

Unsatisfied with such a murky non-diagnosis, Mrs. Hatch did what many mothers do when their child is suffering inexplicably: she went online. There she found a top GI doctor at Children’s Hospital Boston. He examined Emily, ordered an upper endoscopy and said she was suffering from Irritable Bowel Syndrome and suggested some dietary changes, Mrs. Hatch said.

Undeterred, Mrs. Hatch took Emily to see another top GI doctor, this one at Massachusetts General Hospital. After a battery of tests — X-Rays, an MRI and a colonoscopy — the MGH physician put Emily on two medications and sent her home, but, Mrs. Hatch said, her daughter’s pain just kept getting worse.

In July, 2011 she decided to fly with her daughter to the Mayo Clinic, in Rochester, Minn. to seek yet another expert opinion. “My family has given big grants to Mayo Clinic,” Mrs. Hatch said. “So we have that connection.” (Mrs. Hatch comes from a prominent family: She is the granddaughter of J.W. Marriott, the hotel-chain founder, and the daughter-in-law of U.S. Sen. Orrin Hatch.)

Their planned 4-day trip turned into a two-week nightmare after a Mayo Clinic GI specialist told Emily she had a “pelvic floor disorder” and prescribed pelvic muscle exercises three times a day, Mrs. Hatch said. This, says Emily, caused horrible constipation, and little relief.

By this point, no one had suggested that Emily see a gynecologist; Mrs. Hatch said it crossed her mind since the pain had started right after Emily’s first period. So she asked to see a gynecologist while at the Mayo Clinic. At the appointment, Mrs. Hatch raised the possibility of endometriosis because a friend had mentioned it in passing. But, she said, the Minnesota gynecologist was non-committal. “She said, ‘You could try birth control pills and see if the symptoms subside.’ But she wasn’t definitive.”

A $16,000 Bill But No Answers

All told, the travel and medical bills for the Mayo Clinic trip were $16,000, which Mrs. Hatch paid out of pocket. But, she said, “I had a sinking feeling about the whole thing.”

Meanwhile Emily, who by now had finished 8th grade and was about to start high school, continued to endure excruciating pain.

“It was really frustrating,” said Emily, a sweet, sandy-haired young woman, who told me her story at the dining room table of her home in the Boston suburbs, offering up her favorite gluten-free popcorn and downplaying her ordeal in typical teenage fashion. Of her initial pain at the Taylor Swift concert she said: “It was quite terrible — not going to lie. But I get to see her music videos on YouTube, so all is well.”

Over the course of one year, Emily missed three months of school and had to go home early every day. She was forced to quit soccer and curtail her other favorite sports.

“I was constantly in pain, all day, everyday, there wasn’t a full day where I just felt great,” Emily said. Still, she kept her condition a secret. “A lot of my friends didn’t know I had this,” she said. “I just didn’t want to feel different. High school is really judgmental. You tell one person something and it just spreads.”

(After speaking with me, Emily had second thoughts about going public with her condition, but ultimately decided that she wanted other kids to know more about it, so they might avoid enduring what she did.)

For Mrs. Hatch, the lack of a definitive diagnosis and a clear treatment plan was particularly troubling. “It was so isolating,” she said. “You wonder, ‘Am I doing the right thing?’ I mean, this is affecting her socially, mentally, physically, and as a parent you feel helpless: you’re doing everything, you’re going to the best doctors, and you still can’t get an answer.”

Before Mrs. Hatch put her teenager on birth control pills, she took Emily to yet another specialist at Children’s Hospital. Again, the response was demoralizing. Mrs. Hatch said that doctor told Emily she was experiencing “functional pain,” a sort of phantom phenomenon in which earlier pain has actually subsided, but the nervous system still fires off pain signals. Mrs. Hatch said the doctor told her daughter she’d just have to “learn to live with her pain.”

A Clear Diagnosis

Given the medical impasse, Mrs. Hatch decided to find a pain therapist. Almost immediately after she got one on the phone, the doctor said: “I think your daughter has adolescent endometriosis. You need to go to a gynecologist.”

Emily and her mom describe their initial interactions with Dr. Laufer, the Children’s Hospital gynecologist, as filled with an almost magical good karma. Laufer was the first name to come up in Mrs. Hatch’s Google search; then, after their first meeting he had a cancellation at the last minute that got them on the surgery schedule. Finally, on the drive to town: “We hit all the green lights going in to Boston — that never happens,” Emily said.

Laufer performed the surgery laparoscopically, making two incisions, one in Emily’s belly-button, the other just above the pubic region. The goal of the surgery is to remove all of the lesions, even the subtle ones. Shortly after he was done, in less than an hour, Laufer announced the diagnosis: Stage II endometriosis. “We can’t cure this disease,” he said. “But our goal is that a woman be completely functional, and can compete in all activities — equal to men — so they don’t feel disadvantaged.”

Now, Emily takes hormone pills that prevent her from getting her period until she wants to have a baby. To control her pain flare-ups, Emily continues to do physical therapy, and visits the Children’s Hospital pain clinic three times a week. Her regimen also includes Reiki, a technique for stress reduction, Cognitive Behavioral Therapy and acupressure. “I think all of this does help, because it relaxes her body, and allows her to better deal with the pain,” her mother says. “But it’s a brutal disease.”

After the surgery, Mrs. Hatch approached Laufer, who also oversees an annual conference on endometriosis for teenagers and their families to share stories and new data, and asked what more she could do to help hasten research that might ultimately lead to a cure for the condition. “I asked him what his dream would be,” Mrs. Hatch said.

She said she then approached her father and uncle, who run the J. Willard and Alice S. Marriott Foundation, which gives money to a variety of causes, including in the medical arena, to see how the organization might support future endometriosis-related research. Stay tuned for more on that soon.

Emily will probably continue to struggle with some level of pain for years. Still, she says, understanding her condition and continuing treatment have been critically important. “I had never heard of endometriosis before…and a lot of people don’t know about it,” she said. “There have to be some people who are open about this so they can influence others to go see a doctor. If I can help girls out there like me, I might as well.”

Your nose feels like an ever-streaming faucet. Your sinuses are overflowing cranial pools. Your brain is stuffed with mental batting. Ah, spring!

But which is it? Allergies or a cold? Children’s Hospital Boston sent over the lovely Venn Diagram above, and also connected me with Dr. Andrew MacGinnitie, associate clinical director of its Division of Immunology.

“If it’s starting now,” he said, “It could be a cold but it’s probably allergies, because I’m hearing from people who have spring allergies that the trees are starting to bud and the tree pollens are starting to get out there.” The allergies normally don’t kick in until April, he noted, but the mild weather appears to be having an effect. And if you feel this way every spring, that’s still further indication that it’s allergies.

Other points of distinction: A cold will typically last a few days and be gone; seasonal allergies tend to last weeks. And colds often cause fever while allergies don’t (Hay fever is a misnomer, he notes, though it does convey how systemically ill people feel.) Tree pollen allergies tend to peak in May; it remains to be seen how this year’s weather will affect that.

At what point, I asked, do you say, ‘I don’t think what I have is just a cold?’

After four or five days, Dr. MacGinnitie said, you may want to try an over-the-counter generic antihistamine, a second-generation, non-sedating drug like ceterizine, fexofenadine or loratadine (which are the generic forms of Zyrtec, Allegra and Claritin.) If those don’t help, and the allergies are interfering with work, school, sleep, or activities, that’s a reason to seek medical attention, he said.

Two other useful points he offered:

We tend to think of winter as cold season but the viruses do remain common through the spring, almost until school is out and children stop spreading them.

And in terms of non-medical help for allergies: “We recommend that people run their air conditioning even if they don’t really need to because that will filter the pollens and lower the inside pollen level. And if you have pollen allergies, then taking a shower, washing your hair and changing clothes can help because it removes the pollens that have been brought in from outside.”

Just two paragraphs in a $130 million mid-year state spending bill are the latest lightning rod in the health care costs debate.

The bill creates an exemption for any patient who is “undergoing an active course of treatment (at Children’s Hospital Boston or Dana-Farber Cancer Institute) and is newly enrolled in a select or limited network plan.” Right now, patients with tiered health insurance must pay higher co-pays and deductibles to use these two “high cost” hospitals. The bill would waive additional charges for patients who are already receiving treatment at Children’s or Dana Farber.

Sparks are flying. Insurers worry that this exemption (although it sunsets in 2013) would set a precedent. High end hospitals, especially those with specialized care, don’t want to lose patients.

Governor Deval Patrick must now decide if he’ll sign the bill or send it back to the legislature for revisions.  An aide says the exemption for these two hospitals is too broad, as written, and could “blow up” efforts to drive patients to lower cost, high quality hospitals.

The state’s largest employer group has similar concerns.

“We believe that tiered and limited network products are important components in engaging consumers to make more informed health care decisions,” says Rick Lord, CEO at Associated Industries of Massachusetts, “so we would be very concerned by legislation that interferes with the ability of health plans to design these products.”

Representative Steve Walsh, House chair of the Joint Committee on Health Care Financing, helped draft this provision for Children’s and Dana-Farber. Walsh says it would affect 90 patients at most who have close relationships with physicians and services at these hospitals and would not undermine adoption of tiered insurance plans, which Walsh supports.

But, adds Walsh, “we will continue to choose patients and their needs over additional profits for health care plans.”

More Sparks.

Children’s Hospital VP for Government Relations, Joshua Greenberg sent in a statement, which begins with:

“There is a growing body of literature that high-deductible plans lead families to forgo necessary care and experience significant financial difficulties. Limited and tiered products pose serious access-to-care issues for very sick children. The amendment, which provides coverage to families who lost coverage because of the new insurance products, is a first step in the right direction toward protecting young people.”

Dana-Farber spokesman Bill Schaller says “access to critical care should not be hindered when someone has a complex medical condition, such as cancer, nor should a health system reinforce or create disparities in access to specialized care.”

You can read more from Dana-Farber here.

So, dangerous loophole or reasonable accommodation?

Nate Lawrence was born in Winchester Hospital in Massachusetts, December 16, 2010, in severe distress. He was limp, purple and not breathing. Both his lungs had collapsed.

As his parents and grandparents began to descend into panic, the neonatology staff at Winchester went into action.

They took x-rays of Nate’s chest, put a breathing tube down his throat, wrapped a turban around his head and placed him in a clear acrylic transportation box. Children’s Hospital Boston, 13 miles to the east, had been alerted that Nate was on his way. The ambulance team was instructed not to turn on warmers or swaddle Nate. He was to arrive at Children’s a cool 92.3 degrees, more than six degrees below normal.

Nate was born hypoxic, which means that because of his collapsed lungs, insufficient oxygen was flowing through his blood and into his brain. Lack of oxygen, like Nate’s, can lead to cell injury or cell death and ultimately to irreversible brain damage. To halt this potential deterioration, Nate’s body needed to slow down. Cell metabolism had to be lessened and his demand for oxygen reduced. He needed to operate on less energy and to rest.

Since lab trials began almost a decade ago, so-called “cooling” has demonstrated that for every degree a baby’s body temperature is lowered, its body functions and demand for energy slow down by 10 to 15 percent. Putting a “brake” on metabolic demands can prevent an injurious mismatch between oxygen supply and cell need.

Hypoxic-ischemic encephalopathy (HIE), like Nate’s loss of oxygen at birth, is the leading cause of cerebral palsy, an irreversible neonatal brain injury that can result in long-term cognitive, motor, and visual impairments. About 10,000 babies are born each year with CP.

“It’s hard to always protect a baby’s brain at birth,” says Dr. Janet Soul, a neonatal neurologist at Children’s Hospital Boston. “There are unforeseen events that can occur.”

If the placenta peels away from the uterine wall before delivery, it can cause heavy bleeding in the mother and a loss of oxygen and nutrients to the baby. The uterus can rupture or the umbilical cord can prolapse or wrap itself around the baby’s neck. In the case of Nate, a post-delivery exam revealed a uterine infection at the time of birth.

Back at Children’s Hospital, the Neonatal Intensive Care Unit was being readied to receive Nate. Soul and Dr. Anne Hansen, medical director of Children’s NICU, were preparing to lead their hypothermia team in a carefully orchestrated screening of Nate before starting him on the cooling procedure.

“The babies we accept [into our hypothermia protocol] are sick, but not too far gone,” says Soul. “If too severe [and with other complications] we can’t make a difference. Babies that are too well are sent home and remain under observation.”

While induced pediatric hypothermia was approved by the FDA in March 2007, it is not a universal standard of care. That’s because there are fairly strict guidelines to determine a baby’s eligibility. Newborns have to be full-term with no known pre-existing conditions. They also must have neonatal distress and an abnormal neurological exam.

Upon examination, Nate’s condition aligned perfectly with the criteria for induced hypothermia.

Nate was placed in a clear plexiglass bassinet on a sky blue blanket threaded with tubes for circulating cooled water. Sensors maintained the blanket’s water flow to an even 33.5C (normal is 37C) to ensure Nate’s body temperature remained stable. Temperature monitoring was conducted by an esophageal thermometer placed in his throat. Small round electrodes attached to his head and hooked up to an EEG, to monitor brain activity and provide real-time neurological data. To deliver nutrition and sedatives as well as anti-pain and anti-seizure drugs into his string width veins, IVs were inserted alternately in Nate’s feet and hands. He would have to be turned every two hours to ensure even circulation throughout his body.

Hypoxic babies are also prone to a second wave of damage during their first 72 hours of life. If not controlled with cooling, a cascade of toxic byproducts could flood their vulnerable bodies in response to the hypoxic insult, causing seizures, or worse, trigger cells to go through what is called “an unintended programmed death.” For Nate’s parents, Elizabeth (Liz) and TJ, the waiting and inability to cuddle their newborn were the toughest parts of the protocol.

“For us,” says Liz, “Nate’s time on the blanket was very hard. We could help turn him but we couldn’t hold him. Your instinct is to rub your baby’s skin, but for Nate, that was very painful.”

The only physical contact Liz and TJ were allowed was to hold Nate’s hand or place their own hands on his stomach, legs, or feet. They kept a photo of themselves tucked inside his bassinet.

Once babies like Nate successfully clear the three-day danger period, their body temperatures are restored to normal, one degree every 12 hours.

Soul and Hansen agree the loss of bonding time with a newborn is stressful. These babies have to be taught how to breastfeed, and swallowing can be hard for finger-width throats that have been rubbed raw by tubes. “We had to put sugar water on a binky to teach Nate how to suck,” says TJ. It then took Nate 45 minutes to drink his first two ounces.

To date, Children’s Hospital has successfully completed the hypothermia protocol with 36 babies. Soul and Hansen still follow the successful progress of their first patient, now four-years old.

Other Boston-based hospitals — Beth Israel Deaconess, Brigham and Women’s, Mass General and Boston Medical Center — now follow the same cooling protocol.

But the stakes are high. If a baby is cooled or warmed too quickly, heart failure can ensue.

Smaller, less-experienced and less well-equipped hospitals within a 300 mile radius of Boston send their HIE babies to Children’s for assessment. To effectively implement the cooling protocol, these babies must receive “passive” cooling (without warming interventions) en route to the medical center and arrive within the critical first six hour window.

The bustling Boston Medical Center, across town from Children’s Hospital, has cooled seven babies in the past four years. Unlike Children’s, BMC is a birthing hospital. On average, 2500 babies are delivered there each year and their hypothermia program only accepts babies born in their maternity ward.

Dr. Alan Fujii, NICU medical director, and Dr. Laurie Douglass, a pediatric neurologist, lead the BMC hypothermia team. For their hypothermia protocol, they favor “cool caps” over the cooling blanket. The cool cap, they say, allows for selective cooling and is technologically simpler to use than the blankets.

“The cool cap is a well designed product and is easy to use. If we needed a more specialized and trained staff,” says Douglass, “there would be no guarantee the team would be available when needed.”

The first baby BMC ever treated is now two-and-a-half years old and doing well. “We can’t observe subtle issues yet and don’t know her IQ, but the results so far are great,” says Douglass.

Fujii agrees. “Our babies are very sick,” he says. “Before, all we could offer was wait and see. Now we have hope.”

There’s an ongoing debate over which is best, the cap or the blanket.

In a phone interview, Dr. Sonia Bonifacio, a neonatologist at the University of California at San Francisco School of Medicine and co-director of its Neuro-intensive Care Nursery, described their pros and cons. The cap, she says, includes a timing monitor that can sound alerts and has a scaled down, dedicated EEG monitor. This makes it easier to use by less-specialized staff. But, at $20,000 per unit, the cap is at least twice as expensive as the cooling blanket.

Soul agrees the cap may be easier to use but cautions that many induced hypothermia babies are prone to seizures. The blanket, she says, is better for monitoring these types of episodes.

Whether using the blanket or the cap, says Bonifacio, who says she cools 30-40 babies each year using the blanket, the bottom line is that the outcomes from cooling are impressive.

“For the first time we can offer a treatment when loss of blood or oxygen occurs at birth,” says Bonifacio. “Maybe even prevent a lifelong disability, like CP, that could be much more costly to a family and society.”

To reap the financial benefit of the hypothermia protocol, she says, she only needs to treat nine babies. “In medicine,” says Bonifacio, “that’s an amazing number.”

In Winchester, Nate is now pointing and saying his favorite word “bah” as Liz and TJ watch him closely as they sit together on a couch. “We paid a lot of attention to milestones,” says TJ. “Nate’s keeping track. Look at him. He’s fine.”

Children’s President and COO Sandra Fenwick says the savings, as compared to previous increases, will be $83 million.  That amount, Fenwick says is in addition to money Children’s shaved off contracts in 2009 and 2010 for a the total of $155 million.  Is that enough over five years? Weigh in below.

Beyond the savings, Fenwick says this contract is a milestone because it moves Children’s into the Blue Cross Blue Shield global payment plan (the Alternative Quality Contract/AQC).  “We’re going to be taking risk for managing the care of our patients,” says Fenwick, “we’re going to be held accountable for the quality, and it really is in line with policy changes that the whole country is going to be watching.”

Blue Cross CEO Andrew Dreyfus also calls this contract a milestone, but for a different reason.  Dreyfus recalls sitting in meetings several years ago about moving to global payments and hearing “a lot of skepticism about whether global payments could work in a specialty hospital like Children’s. I think we’re answering the question that it can work in a way that both improves quality and lowers cost.”

For more on how Fenwick sees the deal, here’s a condensed version of our interview:

Fenwick: The savings in these contracts are in addition to an aggressive and comprehensive approach that we took at Children’s starting in 2009 to try and reduce both the cost of health care as well as to improve quality. I can give you some examples of that if that would be helpful.

We built some care delivery innovations like something called home ventilation for kids who are on ventilators, where we actually send a physician into the home to keep kids from coming to the emergency room or to the ICU.

We’ve moved some of our chemotherapy children to a home hydration program preventing inpatient stays for those kids. We have tried something called “Try Without Sedation,” so that very small children can avoid anesthesia going through an MRI. All of these are ways of both trying to improve the quality and the experience of care while clearly reducing the cost of care for those incidents.

And we have been really working hard to move care to the lowest cost setting, trying to keep kids out of the hospital where we can through our asthma program and moving children from inpatient to outpatient to satellites and to our community hospitals. So all of those are both related to the unit price of care as well as to the comprehensive cost of where the care is delivered and how much is delivered and how much it costs.

Bebinger: Are you still a high cost hospital in the tiered insurance plans?

Fenwick: We are a high cost hospital. Pediatrics is more costly than adult care. And a specialty hospital that really takes care the sickest children will always be more costly than either a community hospital or a hospital that takes care of principally adults.

Bebinger: Why are you agreeing to these rate changes and moving into the Blue Cross AQC (the global payment contract).

Fenwick: First of all, we are absolutely committed to working on innovative ways to reduce both the cost of care as well as to be innovative around payment policy and business solutions that will sustainably reduce the cost of health care, at the same time improving quality. So that is a commitment that we have made over the last three to four years.

I think it was important for us to lead with quality, to make the program with Blue Cross one that really adapted better to pediatric care. And so we are the first pediatric only or specialty hospital to join this particular ACQ or alternative contract. And we worked with Blue Cross to make the ACQ work for kids by having more robust pediatric outcome measures that include not just local but national comparators and not just primary care metrics but also specialty and specialty hospital measures.

Bebinger: What would you say to a neighbor who is not immersed in health care about what kind of difference this will make for patients?

Fenwick: I think that it will basically allow for better coordination of care between primary care, specialists and the hospital. And I think that’s probably where having the information about care of children and the cost that’s involved in taking care of kids, will benefit both the quality of the delivery of service and the right amount of care. And I think all of these things will go toward improving both the cost and long term quality of care.

Bebinger: How different will it be for doctors to work under this arrangement?

Fenwick: I think the physicians will be working much more collaboratively, managing patients through what’s called the pediatric medical home, where the primary care doctor will be looking at managing all of the patient’s care locally, which is what they have been doing now for the last couple of years. But in addition to doing that, they will also have more information about where their children are getting care, how much it’s costing them, no matter where they get the care.

That data, I think, will help them make and inform their decisions about the whole cost of delivering care. Then pairing that with all of the incremental data around quality will make sure that, while they’re looking at cost, they are also balancing that against the quality metrics.

Too often health care reform ideas don’t account for pediatrics. This new pediatric focused AQC features a whole range of quality measures from well-child to sub-specialty care. We are going to be compared locally and against national pediatric comparators. We thought that was very important to make sure that the care that was being delivered was appropriate for kids.

The only other thing that I would say is that this demonstrates that we really are trying to not only be innovative leaders in care and research for children and that we are really focused on ensuring that all children have access to Children’s Hospital and its doctors, and will receive the world-class care that we’ve been a leader in pediatrics for over 140 years or so.

Bebinger: How significant is this for Children’s?

Fenwick: I think it’s a pretty significant milestone. I think we are going to be taking risk for managing the care of our patients. We’re going to be held accountable for the quality simultaneously. And I think it really is in line with health care reform efforts and policy changes that I think the whole country is going to be watching.

The list is a heartening litany of the many ways that research could make medicine better. The headlines are below, and I thought the work described in this paragraph sounded particularly promising:

Getting a completely untested drug through FDA approval is a long, hard road. So researchers and pharmaceutical companies are increasingly repurposing medicines that have already been approved. Rapamycin is a great example of drug that is seemingly useful for just about everything, from immunosuppression to neurocognitive disorders to congenital heart defects. Using high-throughput assays, researchers are taking whole libraries of FDA-approved compounds, throwing them at new medical problems and finding new therapeutic “hits.” The FDA and private companies are lending a hand, and researchers at Stanford created a program that matches the gene activity caused by a disease with drugs inducing the opposite gene activity.

The headlines:
1. Whole-genome sequencing enters the clinic
2. Innovation meets healthcare reform
3. Global health: Medical missions give way to telemedicine
4. Timely diagnosis for behavioral disorders
5. Digital health apps 2.0
6. Repurposing medicines – finding new uses through mass screens
7. Rethinking clinical practice pays off
8. Making the flu less devastating
9. Taking tissue engineering to the next level
10. New pharma R&D models empower academic medical centers

The full post is here.