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What are the lawmakers, and other state and federal officials, up to when it comes to health reform laws?

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Aid-In-Dying Loophole: Advocates Want You To Know You Can Stop Eating And Drinking

Lee J. Haywood/flickr

Lee J. Haywood/flickr

By Nell Lake
Guest contributor

One sunny day in the spring of 2012, Kathleen Klein sat in a car by the California coastline with her 84-year-old mother, Jackie Wilton. The two women had been quietly gazing at the view, watching seagulls along the shore. “I’m ready to go,” Klein recalls her mother saying. “Not go home…Go.”

Klein didn’t need the clarification. Her mother had been speaking of wanting to die for years, ever since Wilton was diagnosed with an unspecified dementia a few years before. Wilton’s memory had become significantly impaired. But even before her diagnosis, Wilton was clear: She wanted to die before she became severely incapacitated.

Not long after the conversation by the water, Wilton asked Klein explicitly for help in ending her life. In interviews and a recent blog post, Klein remembers wanting to help her mother, but of being unwilling act illegally.

Even if Wilton had lived in one of the five states with an aid-in-dying law, she would not have qualified for such aid from a physician. That would have required a doctor’s determining that she would likely die within six months. Given the usual course of chronic, progressive dementia, Wilton would likely have lived much longer.

So Wilton needed another option for ending her life. Soon Klein heard a radio interview about “the possibility of helping someone die by letting them stop eating and drinking,” she wrote. “The way I understood it, it was the only legal form of assisted suicide.”

Klein mentioned the scenario to her mother. Wilton said she would think about it. A few days later, Wilton again mentioned wanting to die. “I asked her if she remembered the idea I had run by her. She didn’t, so I told her again. I suggested we give it a try (a ‘dry run,’ we called it) for a day and see if she wanted to continue.”

Wilton began the “dry run” on April 28, 2012.

No Food, No Drink

Most often referred to as VSED — voluntary stopping of eating and drinking — the practice of giving up food and drink in order to hasten one’s death is being increasingly publicized by aid-in-dying advocates as a legal alternative to physician-assisted suicide.

VSED is legal everywhere, even in states without aid-in-dying laws, and in cases in which a person, like Wilton, would not qualify for assistance with dying even in those states.  Compassion and Choices, a leading “death with dignity” organization, is beginning to more actively promote VSED as an option because “it’s something that patients can openly pursue, in open dialogue with their physicians, with the support of hospice,” says Barbara Coombs Lee, the group’s director. “We do want to make it more public. We want to make it more visible because it upholds the truth that ultimately patients should be and are in charge. That’s kind of a consciousness-raising task. Continue reading

Gun Laws: A New Litmus Test For Surgeon General?

Abortion has been a litmus test for U.S. Supreme Court nominees since the hearings for Robert Bork 27 years ago. Now, some doctors are worried that anything a physician says about guns may prove perilous for nominees to be U.S. surgeon general. Will Dr. Vivek Murthy, an internist at Boston’s Brigham and Women’s Hospital, set the precedent?

Dr. Vivek Murthy, President Obama's nominee for U.S. Surgeon General, testified before the US Senate HELP committee on Feb. 4, 2014.

Dr. Vivek Murthy, President Obama’s nominee for U.S. Surgeon General, testified before the US Senate HELP committee on Feb. 4, 2014.

President Obama tapped Murthy to become the nation’s next top doctor in November. Early last month, the 36-year-old was on Capitol Hill for a confirmation hearing, where most of the questions were about the Affordable Care Act.

Murthy is a strong supporter of the federal law and founded a national organization originally called Doctors for Obama, now Doctors for America. His group also urged Congress to pass stricter gun laws after the Sandy Hook Elementary shootings. That was a point of concern during the hearing for Sen. Lamar Alexander, a Republican from Tennessee.

“You said, in your advocacy for passage of gun control, last year, that you’re ‘tired of politicians playing politics with guns, putting lives at risk because they’re scared of the NRA,’ ” Alexander said and then continued with a question: “To what extent do you intend to use the surgeon general’s office as a bully pulpit for gun control?”

“Thank you, Sen. Alexander,” Murthy said, adjusting his microphone. “To start, I do not intend to use the surgeon general’s office as a bully pulpit for gun control. That is not going to be my priority. As we spoke about, my priority and focus is going to be on obesity prevention.”

Murthy cleared the Senate Health, Education, Labor and Pensions Committee with a vote of 13 to 9. Then, in late February, Chris Cox, director of the NRA’s Institute for Legislative Action, delivered a letter to Senate leaders opposing Murthy’s nomination.

Cox told Fox News that “Mr. Murthy’s not just a gun control supporter, he’s a gun control activist. And it’s clear that his agenda is to treat a constitutional freedom like a disease.”

Members of the National Rifle Association began calling their senators and the group said a vote for Murthy would be considered a vote against the NRA.

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Mass. To Drop Contractor Behind Flawed Health Insurance Website

Massachusetts is negotiating an end to its contract with CGI, the Canadian vendor that built the state’s flawed health insurance website.

The site was supposed to be up last October, offering one-stop health insurance shopping for anyone in Massachusetts. But six months later, only a few functions work but have glitches, and a few are not usable at all.

Sarah Iselin, a special assistant to Gov. Deval Patrick hired to oversee the fixing of the website, has been working with a team of outside contractors from Optum to determine if the CGI project can be fixed.

“That assessment made clear that based on past performance and our current needs, parting ways with CGI is the right course for the commonwealth moving forward,” Iselin said Monday.

In a statement, CGI said it will “work with the Commonwealth to ensure a smooth transition to the next phase of exchange deployment, allowing for the best use of system capabilities already in place.”

Iselin and her team told the Health Connector board they are reviewing two possible remedies: hiring a new vendor to build on working parts of the current site or buying website elements from other insurance exchange sites. Iselin cautions that buying elements will be difficult because Massachusetts has many unique insurance rules, including 263 different factors that determine who is eligible for what type of coverage.

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House Moderates Stance On Medical Marijuana Dispensaries

The Massachusetts House has backed away from a call for the state to start over in its review of medical marijuana dispensary applications. But House leaders are recommending that the Department of Public Health (DPH) stop and make some changes before continuing what they say is a flawed process.

In a letter released Thursday, Rep. Jeffrey Sanchez, the House chairman of the Joint Committee on Public Health, listed three recommendations:

1) Go back and verify all the information submitted by every applicant who scored 137 or more points. This would add eight groups to the list of 20 that were cleared for provisional status.

2) In the future, verify information submitted before selecting applicants for provisional licenses.

3) Close loopholes that might let “non eligible persons” maintain an interest in a dispensary.

“We want to make sure that we are responsible to this voter-approved law that was passed and that we’re able to identify any problems relative to who these folks are,” Sanchez said.

Before Sanchez sent the letter, House Speaker Robert DeLeo told the Greater Boston Chamber of Commerce that he doesn’t understand why DPH checked some information, but not all the paperwork, before narrowing the list of applicants.

“My problem,” DeLeo said, “is I would have preferred that you [DPH] do all vetting upfront before any decisions are made.”

DPH issued a statement saying it will continue to work with the Legislature and will consider the recommendations in an effort “to ensure a thorough and transparent licensing process.”

But the department and the House are overlooking the main objection raised by those who were not selected: the way applications were scored.

“Much more needs to be done to a process that’s revealing itself to be flawed and inadequate in every respect,” said Joshua Resnek, spokesman for the Centers for Alternative Medicine, whose application to open a dispensary in East Boston was rejected.

Resnek and his group have asked DPH to recalculate their score. Several other groups who were rejected have filed suit against the state.

While some applicants are fighting to overturn the application process, others with provisional approval have millions invested in leases, planned renovations and growing facilities where they anticipated planting marijuana next month.

With all this wrangling, patients are left wondering if they will, as the state has said, be able to purchase marijuana at a legal dispensary sometime this summer.

Woman Says She Was Shackled Just Before Giving Birth To Son

Giving birth can be a trying experience all by itself. Imagine going through labor in hand-cuffs or leg restraints. The Patrick administration is taking steps to make sure that doesn’t happen in any jails or prisons in this state.

Massachusetts is moving closer to joining 18 states that prohibit putting restraints on prisoners while they’re in labor. That’s thanks to a regulation that Governor Deval Patrick announced yesterday.

“Regulation is good, but here, law is better. The legislature is considering a bill that would make this ban law. I want to be clear that I support this bill and I urge the legislature to send it to my desk for signature this session,” Patrick said.

State undersecretary of criminal justice Sandra McCroom says the practice was already prohibited at state-run prisons, but the new rule also applies to county houses of corrections operated by sheriffs.

“Sheriffs are all independent elected officials, and their policies aren’t regulated by us in any way. So now the Governor has insisted that the Department of Corrections create immediate regulations that resolve that issue,” she said.

The executive director of the Massachusetts Sheriffs’ Association says he knows of no sheriffs who permit women to be shackled during labor, but activists, including the group NARAL Pro-Choice, say they’ve heard otherwise. Megan Amundson, Executive Director of NARAL Pro-Choice, says, “We’re hearing from facilities across the state that the practice is still happening. We are hearing from doctors and from women that they are being shackled during labor.”

“They Would Not Remove The Cuffs”

“When I was in active labor the jail medical staff had denied that I was in the late stages of labor that I was,” said Kenzie, a woman who asked that WBUR only use her first name because she doesn’t want any more problems with the criminal justice system.

Kenzie says she was restrained by correctional officers from the Western Massachusetts Regional Women’s Correctional facility.

“This being my sixth child, I kept telling them that it was time. They just kept denying me, saying I wasn’t really that far into labor because I was not hysterically screaming. It wasn’t until I had said that I had the urge to push that they decided to take me seriously,” she said.

“On the car ride there, I asked if they could remove my cuffs because I needed to be able to hang on, and, not only, so I didn’t fly around the hard plastic seats but also just to brace myself and be able to not push, and they would not remove the cuffs.”

And she says the restraints stayed on once she got to the hospital, driven there by two correctional officers — one male and one female. The female correctional officer stayed with her during delivery.

“… Right immediately after delivery, they immediately shackled my leg to the bed,” she said. “You know, no woman should ever have to go through that. If you ever delivered and had a child you would understand.”
– Kenzie

“I was in the emergency room, and it took a lot of convincing but the CO finally had taken the cuffs off of me so I could take my pants off and be able to get checked and get onto the bed safely,” she said.

But Kenzie says she was back in cuffs pretty quickly.

“We left the jail at 9:50 a.m. and my son was born at 10:01 a.m. and right immediately after delivery, they immediately shackled my leg to the bed,” she said. “You know, no woman should ever have to go through that. If you ever delivered and had a child you would understand.

We asked a representative of Hampden County Sheriff Michael Ashe for comment. Patricia Murphy, Assistant Superintendent of the Western Regional Correctional Center, says the facility has had a policy for some twenty years not to shackle during labor. She admits the restraints are allowed during transport from the correctional facility to a hospital. She says that even under the Governor’s new policy, restraints during transport are allowed.

Kenzie is out of jail now after serving 15 months of an 18-month sentence.

Before her release, her son was diagnosed with leukemia. He’s in remission now, but she says she spends a lot of time traveling with him from Western Massachusetts to Boston for medical treatment.

Editor’s note: This post was expanded on 2/25 with additional material, including the response from Patricia Murphy of the Western Regional Correctional Center.

Gov. Patrick Issues Emergency Regulations Banning Restraints On Pregnant Inmates In Labor

At a forum on public safety today, Gov. Deval Patrick said the practice of shackling female inmates while they are in labor should end immediately. He said he’s issuing emergency regulations through the state Department of Corrections to ban the practice in all correctional facilities.

Here’s what the governor said (according to a spokesperson, who emailed me his comments):

While on the subject on the use of restraints, let me be clear that we will also end — finally, completely and immediately — the use of restraints on pregnant inmates in labor. Our current regulations prohibit this in state prisons and today the Department of Corrections will issue emergency regulations extending that prohibition to all facilities, including Houses of Correction. Regulation is good but here law would be better. The Legislature is considering a bill that would make this ban the law. I support that bill and I urge the Legislature to send it to my desk for signature this session.

The bill that Patrick referred to has been on file for over a decade, according to Megan Amundson, executive director of NARAL Pro-Choice Massachusetts.

Regarding the governor’s order today, Amundson said: “We applaud the governor for taking this action.”

But, she added, the proposed legislation “is more comprehensive in terms of supporting and also protecting women’s health. The bill protects women’s health throughout pregnancy and labor and postpartum. The regulations ensure that women aren’t shackled during labor but the bill is stronger, and having something in statute is stronger than having something in regulation because it ensures the protection of women’s health going forward.”

In a press release issued after the governor’s announcement, NARAL Pro-Choice Massachusetts said:

…We look forward to seeing the emergency regulations when they are filed later today.

We join the Governor in calling upon the legislature to pass the Anti-Shackling bill (S.2012), currently in Senate Ways and Means, this session to put an end to this practice and ensure that the health of all pregnant women in the Commonwealth is protected. Massachusetts needs to join the 18 states – including Texas and Louisiana – that have already passed laws to ban shackling of pregnant women in jails and state prisons.

The Massachusetts proposal would prohibit the practice and create streamlined laws in both county jails and the state prison system “banning the shackling of pregnant women during childbirth and post-delivery recuperation — unless they present a specific safety or flight risk.”

Report Blames Mass. Health Website Troubles On Lack Of Skills, Leadership

In the months after President Obama signed the Affordable Care Act (ACA) in 2010, officials in Massachusetts started planning for a new Health Connector website that would be compatible with the new federal regulations. UMass Medical School, the Massachusetts Health Connector and MassHealth came together to work on the project. They hired a Canadian firm, CGI, to build the site which launched in October 2013, but “was not fully operational,” according to a report released Thursday by the technology firm MITRE. Residents who’ve tried to apply for insurance through the site use words like “disaster.”

The MITRE report, which was commissioned by the state, says CGI did not have the expertise to create or maintain the site. Functions were not tested. Data was lost. Tools to fix bugs were not in place. So who from the state should have spotted and corrected these problems? MITRE concludes that it was never clear which of the three state partners was in charge. Gov. Deval Patrick says the shared leadership structure would have been fine if CGI had done its job.

But, Patrick added, “It turns out that this vendor has required and will require a much, much shorter leash. And that’s hard to do by committee.”

The lack of clear authority created other problems, according to the report. The website never had a baseline set of requirements. There was no master schedule. Decisions were not explicit and were not communicated clearly. CGI received conflicting instructions and deadlines from the three parties in charge.

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More Answers Sought On Troubled Mass. Health Website

In Tuesday's State of the Commonwealth address, Gov. Deval Patrick made just one mention of the problems with the state's health care website. (Steven Senne/AP)

In Tuesday’s State of the Commonwealth address, Gov. Deval Patrick made just one mention of the problems with the state’s health care website. (Steven Senne/AP)

Before the annual State of the Commonwealth address this week, a lot of people had hoped Gov. Deval Patrick would talk about the ongoing problems with Massachusetts’ health care website, the Connector. But it rated just a mention.

“We have dealt with serious failings before,” Patrick said in his speech. “Now, we must strengthen the Department of Children and Families and fix the Connector’s website.”

That’s all he said, and now, there are rumblings of discontent.

‘We Need A Plan’

Anna Eves paid $1,065 in late December for private insurance through the Connector. In January, the bank confirmed that the Connector had cashed her check, but she had not received any information about an insurance plan, so she called the Connector.

“The girl there said, ‘Yep, we got your check, but you’re not covered,’ ” Eves said.

Eves, who owns a fine art printing company in Gloucester, was angry. In one phone call after another, she tried to find out what happened. At one point she was told her check for family coverage would be applied to February, then she was told the money had been applied to January, but only for herself. And now she doesn’t know what is going on.

“[I'm feeling] very, very frustrated,” she said. “Confused — just not happy at all with how incompetent they are over there.”

Now even longtime supporters of Massachusetts’ landmark effort to cover uninsured residents say the state’s performance is unacceptable.

“We are not getting any clear explanation from the state administration, when it’s going to be fixed, how it’s going to be fixed and why this has been so difficult.”
– John McDonough,
Harvard School of Public Health

“We are not getting any clear explanation from the state administration, when it’s going to be fixed, how it’s going to be fixed, and why this has been so difficult,” said John McDonough, of Harvard’s School of Public Health, who worked on the original coverage law. “We need transparency, we need information, we need a plan from the governor and the administration.”

Health insurers are worried about how long it will take to enroll the more than 200,000 people the Connector expected to sign up by the end of March. Only 5,400 people have been processed since Oct. 1, when new rules under the Affordable Care Act kicked in, requiring a new website in Massachusetts.
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From DIY Death To Live-Longer Workouts: Juiciest Health Stories Of 2013

happy new year

When people ask what we cover here at CommonHealth, we tell them our beat is broad, encompassing everything from personal health and medical research to health-related policy and politics.

But looking back at our 2013 oeuvre, we could also say that our beat ranges from cradle to grave, from below the belt to above the neck, from big-world news to inner-world angst.

2013 has been a banner year for CommonHealth: We crossed the 1-million-hits-a-month mark. (A million thanks to all who clicked or shared or tweeted.) We partnered with Slate to launch a regular podcast called The Checkup, which is expected to resume next year. And WBUR listeners heard us more on air than ever, as we crossed back and forth between media platforms.

More soon on our hopes and goals for 2014, but is there anything you’d like to see more or less or just different? Please let us know in the comments below. For now, here are our top  CommonHealth posts from 2013, based on traffic, reader response and a little personal bias. Here’s to a health-filled 2014.

1. DIY Death: Natural, At-Home Funerals And Their Boomer Appeal
Death remains a topic that many of us would rather avoid. And when it comes to the actual nuts and bolts of caring for the dead, most of us tend to think it’s best — and furthermore, required by law — to let professional funeral arrangers handle the arrangements. Well, it turns out that in most states it’s perfectly legal to care for your own dead. And, with new momentum to shatter longstanding taboos and stop tip-toeing around death — from “death with dignity” measures sweeping the country to projects promoting kitchen table “conversations”about our deepest end-of-life wishes — a re-energized DIY death movement is emerging.

2. Is It Time To Rethink Co-Sleeping?
bedsharePediatricians and public health officials have long warned that “co-sleeping,” or sharing a bed with an infant, is unsafe. But let’s face it: almost everybody does it. So perhaps the time has come for the public health message to focus less on advising against it and more on advising how to do it more safely.

3. Caring For Kevin: An Autistic Man, An Exceptional Doctor, A Life Renewed
Institutionalized since childhood, Kevin, now 56, has been losing his sight for the past two years to the point that doctors said he can see little more than shadows. He’s here at Boston Medical Center awaiting cataract surgery, a fairly simple procedure that generally takes about 30 minutes in the operating room. But for Kevin, who has long feared doctors and has a history of aggressive, unpredictable behavior — like hitting himself or inadvertently hurting others or running away when he’s in distress — the procedure isn’t simple at all.

4. Long After Recession’s End, Deep Layoff Scars May Remain
Everybody knows it hurts to lose your job. But what has caught me by surprise is that even though my family didn’t suffer much financially from my layoff, and even though I tend to be pretty upbeat and resilient, and even though I’ve landed well, it still hurts. More than four years later, I’m still not fully over it. At work, I feel hypervigilant – as if nothing I do is ever enough, or good enough, to feel safe. At home, making life plans fills me with anxiety. Which makes me wonder: Are these feelings normal?

(Newbirth35/flickr)

(Newbirth35/flickr)

5. I’m Finally Thin — But Is Living In A Crazymaking Food Prison Really Worth It?
It shocks me to even write this, but after a zaftig childhood and a curvy-bordering-on-chunky early adulthood, I find myself, in middle age, after two kids, to have reached my “ideal” weight. But lately I wonder if it’s really worth it.

 6. Every Minute Of Exercise Could Lengthen Your Life Seven Minutes
If you play with the data of a recent major paper on exercise and longevity, you can calculate that not only do you get the time back; it comes back to you multiplied — possibly by as much as seven or eight or nine.

7. The Scariest Reason To Get The Shingles Vaccine
The reason my heart dropped when I saw my rash — and the reason I am now going to pay out of pocket for the vaccine because my health insurance covers it only for those over 60 — is an affliction even less familiar to most people than shingles. It is called postherpetic neuralgia. Think of it as “Extended Release” shingles. Or as the closest thing to the trials of Job for an unlucky few.

8. ‘Thigh Gap’: Reflections On Teenage Girls’ Latest Obsession
That extra layer of influence is coming from the Internet and social media, and the way I see it, it’s like peer pressure on steroids — a vehicle for immediate feedback about you, the way you look, or what you think of others. And those opinions are so widely broadcast. Depending on a teen’s social media prowess, that can mean hundreds, even thousands of extra eyes.

(Photo: Robin Lubbock/WBUR)

(Photo: Robin Lubbock/WBUR)

9. Why A Sex Therapist Worries About Internet Porn
You may have seen the recent film Don Jon, featuring Joseph Gordon-Levitt as Jon, an Internet porn addict whose habit hurts his love life. I see too many Jons in my office…I see a sexual and relational train wreck happening, and I need to speak out.

10. A Doctor’s Decision To Quit 
When I introduce myself as a physician who left clinical practice, non-physicians ask me why I left. They’re generally intrigued that someone who sacrificed many years and many dollars for medical training would then change her mind. But physicians, almost universally, never ask me why I left. Instead, they ask me how.  It may be dramatic and self-serving to frame my career change as a way to avoid suicide, but I can attest that medicine was not conducive to my health.

Special thanks to WBUR’s Martha Bebinger, CommonHealth’s founder, whose deep grasp of health care’s Byzantine ways is unmatched by any reporter we know. Her knowledge and humanity continue to enrich the site immeasurably. A few of her notable 2013 reports:

Web Glitches Snarl Health Insurance Enrollment In Mass.
Mass. Employers May Sue Feds Over Obamacare Small-Business Premiums
Marathon Bombing Victim Makes Strides Toward Her New Normal
Medicare, You Can Do Better (Or Why You Need A Translator For This Post)
Searching For The Best Colonoscopy In Town

And just some personal faves:
My Son, The Dragon Slayer: Risks And Rewards Of Growing Up Gaming
Proof In The Pants: A Pivotal Moment In Pre-Viagra History
How Gardening Is Better Than Parenting: Let’s Count The Ways
When A Patient Asks: Why Won’t Anybody Just Talk To Me?
High Anxiety: How I (Sort of) Overcame My Fear Of Flying

What were yours?

Surgeon General Nominee: Not Likely To Suffer From Invisibility

Dr. Vivek Hallegere Murthy (AP, provided by Brigham and Women's Hospital)

Dr. Vivek  Murthy (AP, provided by Brigham and Women’s Hospital)

The last surgeon general of the United States, Dr. Regina Benjamin, took flak for not doing more — or at least, given the limited powers of the office, for not speaking out more.  Forbes called her not just ineffective but “invisible.” New York Times food columnist Mark Bittman wrote a piece headlined “Our M.I.A. Surgeon General,” and accused her of failing to counteract lies by “Big Food” with the truth: that the American diet is making millions of us sick.

Somehow, I think that if President Obama’s new nominee for surgeon general, Dr. Vivek Murthy, is confirmed in the post, he will not have an invisibility problem.

First clue: The striking Reuters photo at the top of the Boston Globe profile of Dr. Murthy, who’s now 36 and affiliated with Brigham and Women’s Hospital and Harvard Medical School. He’s standing in his white coat outside the Supreme Court during the legal arguments over Obamacare in 2012, his arms crossed and his expression — well, judge for yourself. To me, he looks appalled, in a long-suffering way. (Dr. Murthy is not available for comment, but my personal interpretation is that anyone confronted often by the flaws and gaps of the American health care system tends to start looking appalled in a long-suffering way…)

Second clue, from Dr. Neel Shah, founder of the non-profit Costs of Care and a friend of the nominee:

One of the things I admire and love about Vivek is that he beats to the tune of his own drum and in many ways worked outside of the medical establishment in order to advance the interests of the American people….Doctors for America was largely an answer to the less progressive AMA.

Dr. Murthy is co-founder and president of Doctors for America, which describes itself as “a national movement of physicians and medical students working together to improve the health of the nation and to ensure that everyone has access to affordable, high quality health care.” The Globe notes that it began as Doctors For Obama in 2008, and that Dr. Murthy believes doctors should take more of the lead in efforts to improve the country’s health care system.

Other bona-fides, the Globe reports: Continue reading