Statement from Secretary Burwell on the introduction of Bipartisan Trade Promotion Authority

It’s just the crumb of a muffin but Martha Galvis must pick it up. Lips clenched, eyes narrowed, she goes after the morsel, pushing it back and forth, then in circles, across a slick table top.

“I struggle and struggle until,” Galvis pauses, concentrating all her attention on the thumb and middle finger of her left hand. She can’t get them to close. “I try as much as I can. And if I do it I’m so happy, so happy,” she says, giggling.

Galvis, 62, has just finished a session of physical therapy at Brigham and Women’s Faulkner Hospital where she goes twice a week. She’s learning to use a hand doctors are still reconstructing. It’s been two years since she almost lost it.

On April 15th, 2013 Martha and her husband Alvaro Galvis headed for three spots from which they’d enjoy the race and boisterous crowd. Their last stop would be at or near the finish line.

Watching the marathon was a ritual that began in the mid 1970s when the Galvises, who are both from Columbia, met in Boston. Their three children grew up with the marathon as family holiday. The Galvises planned to continue the annual event after retirement.

“But not anymore,” says Martha Galvis, waving both hands in front of her face. “I don’t feel secure to do this.”

The former preschool teacher tries not to think about the moment when a pressure cooker bomb placed on the ground exploded, hurling nails and BBs into her left leg and hand. It was just at that moment that Galvis reached down for her bag at her feet.

“My hand was destroyed, destroyed, it was so bad,” she says.

Dr. George Dyer, with Brigham and Women’s Hospital, began rebuilding Galvis’s hand about 30 minutes after the bombs went off. Dyer decided he would try to save everything except Galvis’s ring finger.

“She had a very beautiful wedding ring that was two fine bands kind of wrapped around each other,” Dyer says. “The force of a bomb going off right next to your hand, it’s kind of like a miniature hurricane. It unwrapped these fine gold bands and then wrapped them together very tightly around her finger and just cut it off in place.”

Dyer picked pieces of the wedding ring out of bone and tissue and saved them for Galvis. He salvaged parts of the ring finger to replace joints and tissue missing from its companions. In surgery number 16, Dyer took bone from Galvis’s hip, where the marrow has the best potential to stimulate healing, and grafted it to a joint in her pinky. Doctor and patient are waiting to see if she’ll need further operations. Galvis calls Dyer a magician.

There were just a few serious hand injuries because the deadly spray went sideways, not up. Martha Galvis also severed nerves in her left leg. Two years of surgery and rehab, Galvis feels worn down.

“Then I’m thinking about when I was going to the marathon and I was cheering the people and I say, come on, keep going, keep going, one more mile,” Galvis says. “So I look my hand and I say come, come on, keep going, you can do it, this is like a marathon. And I can feel people in Boston say yes you can do it, come on keep going, keep going.”

The jeweler in Boston who made Galvis’s original wedding ring took the shattered, twisted pieces and molded a new band. But Martha Galvis, who is devoted to her husband, says that for a long time, she was afraid to put it on.

“It’s silly maybe,” Galvis says with a sheepish shrug, but she says she couldn’t shake the worry that, “something might happen and I could lose my hand again, the other hand.”

For some marathon bombing survivors, the emotional and psychological scars are healing more slowly than the physical ones. Martha Galvis pauses and reaches over to stroke the back of her husband.

“People tell me time heals, but it’s a very slowly turning clock to me,” says Alvaro Galvis. He is a health insurance salesman. He had two surgeries to repair his leg. He says a 1 inch by 2 ½ inch piece of pressure cooker removed from his right leg was introduced as evidence in the trial of now convicted bomber Dzhokhar Tsarnaev.

“I don’t know if we are wired as human beings to be able to deal with tragedies like this. I don’t know if we will ever be able to. We’re trying, we keep trying,” he says.

Alvaro Galvis struggles with flashbacks, he’s jittery and anxious. He says he can’t get used to the feeling that he has no control over his surroundings.

“You think about a lot of things you know, in two years of trying to understand,” says Galvis. “That’s part of the healing.”

Neither Alvaro or Martha Galvis has been able to return to work since the bombing and they aren’t sure if they ever will. They say they were getting better, before the trial. But with the verdict last week, the race anniversary this week and sentencing next week, they are constantly on edge. So Martha Galvis prays.

“I ask God, please,” Galvis begins, “in my heart, I don’t want to hate him. I don’t want to hate him because its no good for me to feel I hate him. And I ask God for him. But he has to be punished because he did horrible things and he has to be punished.”

Martha and Alvaro Galvis stop the interview. This is too much for them. They leave the hospital arm in arm, supporting and protecting each other as they enter a world they’ve learned they can not control.

This story is part of a partnership that includes WBUR, NPR and Kaiser Health News.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Dr. Robert Wachter is a long-time patient safety advocate who has written extensively about the trends affecting quality and safety in health care. Wachter, associate chair of the University of California-San Francisco department of medicine, years ago coined the term “hospitalist” and predicted the rise of that profession.

In his new book, “The Digital Doctor: Hope, Hype and Harm at the Dawn of Medicine’s Computer Age,” he turns his attention to technology in health care, and the risks and rewards as we digitize everything from medical records to office visits. We talked recently about his new book. This is an edited and condensed version of that conversation.

Q. As I read your book I couldn’t help thinking about the elderly. Many older people aren’t tech savvy. They’re intimidated by looking up information on computers, sending email to their doctors and the like. They’re also bigger health care users than many younger people. What needs to be done to help them get and stay engaged as technology advances?

A. It’s an important question. It’s not natural for them the way it is for the next generation and beyond. But most older people are at least using email and know how to surf the Web. Silicon Valley has woken up and realized this is a huge market. As consumer-oriented tech companies enter the health care field, I think they’re going to design tools and technology and ways of interfacing that make it seamless for the people who need to become engaged. This will allow older patients to at least do the basic stuff, like renewing their medications, the stuff that’s just incredibly annoying in the paper world.

Q. In your book, you talk about moving away from fee-for-service payments to doctors and hospitals and toward payments based on a population of people, adjusted for their baseline health. From a patient perspective, will that change how they pay for their care? At the most basic level, could that finally mean the end of incomprehensible “explanation of benefits” insurance forms, for example?  

A. I wish I were more hopeful. Of all the nuts we have to crack, this is the one I’m least optimistic about.

If everybody is in an accountable care organization or the like, providers get a single payment when they treat someone. But as long as they’re still doing an adjustment for the relative sickness of the patients, the organization will need to account for all of the details. And I’m afraid the patient may also still see a confusing itemized bill, unless we can get to a point in which you’ve paid for the year and you’re done.

The movement away from piecemeal payments is hopeful, and so are the digitization of health care and the entry of Silicon Valley companies with a consumer sensibility. I guess the question is: Do all of those trends — when woven together — lead to something that’s more user friendly? When it comes to clinical care, I think the answer is yes. I see how we can get to a much happier place, with better care through digital medicine, in five to seven years. But the idea that you could get a simple, clear insurance bill that you pay with one click… that still feels like a moon shot to me. So maybe in 10 to 15 years.

Q. To what extent can technology really help people comparison shop for health care? To date, we’ve seen that it seems to work best for procedures like colonoscopies or MRIs, where the service performed is fairly comparable and relatively inexpensive. Could people really comparison shop for cancer treatment? Would we want them to?

A. Sure, why not? Some of this comes down to your fundamental belief in capitalism and the market. But we do have to pay some attention to fundamental differences between health care and other markets. For example, in health care, we can’t accept haves and have nots, while we readily accept this with other luxury goods. That said, I’m pretty convinced that if you create an environment where patients have the information they need to make those decisions, that the market will help them make good choices.

The area I worry about is the science. How do we really know that one doctor or hospital is better than another? Most aspects of quality measurement are not very advanced.

Another real challenge is fragmentation. If I get my colonoscopy at one place because it’s the best and cheapest but it’s in a different system than the one my primary care doctor is in, that’s a problem if the electronic records don’t talk to each other. As a patient, I’ve got to think about the advantage of receiving the cheapest procedure compared to the negative consequences of no one doctor having a complete view of my health.

Q. I want to touch on the Affordable Care Act. Do you think the health law requirement that people have health insurance positively affects their engagement in their own health care or the health care system?

A. I think everybody should have health insurance. The system works better and people have better health and health care with universal insurance. And the law was the most politically feasible way to make that happen, so I support it. When people have health insurance, it creates a connection to a system that is largely mediated through a primary care doctor. To have 40 to 50 million people floating outside the system – able to access the system only episodically and when they’re very ill – is crazy.

Has having insurance increased their engagement? Yes, but at a level that’s pretty wimpy. Now you can see a primary care doctor to manage your blood pressure in an office visit every six months, but is that the level of engagement we should aspire to? Nowhere near it. The hope is that by having everybody part of an organized health care system, now it’s in the interest of the system to have engaged patients – since that engagement should lead to fewer office visits, ER visits, and hospitalizations. But this is the sort of thing that takes years, if not decades, to develop.

Q. What about initiatives like OpenNotes that allow patients to read their doctors’ electronic notes about their care? How do they change the patient-doctor relationship?

A. OpenNotes illustrates the democratization of the health care system, which is going to challenge all of the system’s fundamental underpinnings. Digitization is an enabler. It’s changing the relationship between doctors and their patients from an extraordinarily paternalistic one to one that is more democratic. In the new world, a patient’s choice is no longer just, “Do I see doctor A or B?” but “Do I even need to see a doctor at all?” OpenNotes is part of this trend.

As wonderful as patient sharing access to their information is, along with new tools to self-manage and things like telemedicine that allow patients to receive care outside the traditional system, in a world of high copays you are going to see some patients making some very bad choices. In the old days, the sick patient had to go see a doctor. Now they can go to MinuteClinic. Or they can Google their symptoms. I wouldn’t want to turn back the clock, but it raises the question, “When is self-management a bad choice?”

As health care finally goes digital, some people believe that it’s no different than travel or banking. But no one is getting harmed by using TripAdvisor or Fidelity. I think you could argue that health care is fundamentally different.

Please contact Kaiser Health News to send comments or ideas for future topics for the Insuring Your Health column.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

HHS announces $1 million in new grant programs to help improve sharing of health information

  National Public Radio conducted an impressively in-depth, four-part report about the working conditions and health risks of nurses, full of worrying statistical data and heartbreaking personal stories. The short of it: “nursing employees suffer more debilitating back and other injuries than almost any other occupation — and they get those injuries mainly from doing Continue Reading

Montana appears poised to become the 29th state, plus the District of Columbia, to expand Medicaid under the Affordable Care Act.

A Republican-sponsored bill to do so survived a crucial vote Thursday and is now expected to move quickly to the Democratic governor’s desk for his signature.

Hard-line conservatives made multiple attempts to amend or kill the bill when it hit the Republican-controlled House floor Thursday, but a coalition of 13 Republicans and all 41 Democrats agreed to end debate swiftly and vote. The bill picked up two more Republican supporters in the House than it had on Wednesday.

The bill previously passed the state Senate with seven Republican votes. It faces one more vote Friday, but opponents now appear outnumbered. Gov. Steve Bullock is expected to sign it.

If that happens, Montana’s Medicaid expansion plan will still need approval from the federal Department of Health and Human Services. Its provisions requiring recipients to pay premiums and participate in “workforce development” programs will require federal waivers.

This story is part of a reporting partnership that includes Montana Public Radio, NPR and Kaiser Health News.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Despite its rocky launch, the federal health insurance exchange did better than the exchanges run by individual states at both enrolling new people in Obamacare and hanging onto previous enrollees during the 2015 open enrollment period that ended in February, according to a recent analysis.

Enrollment for 2015 on the federal exchange increased by 61 percent over 2014, to 8.8 million. On the state-based exchanges, enrollment increased 12 percent, to 2.8 million, according to the analysis by the consulting firm Avalere Health.  In addition, the federal exchange re-enrolled 78 percent of its enrollees from the previous year, while the state-based exchanges re-enrolled 69 percent.

Several factors may have contributed to the disparities in enrollment and retention, says Elizabeth Carpenter, a director in the health reform practice at Avalere, which conducted the analysis based on federal enrollment data released in March for the federal and state-based exchanges.

The many website and other glitches that bedeviled the 2014 launch of healthcare.gov, the federal portal for Obamacare coverage in about three dozen states, may have contributed to its stronger enrollment showing this year, Carpenter says.

“Some folks have pointed to the technological problems with healthcare.gov, saying that there may have been people who didn’t get through the enrollment process last year” because they couldn’t get the website to work, Carpenter says. In 2015, instead of error messages and frozen screens, healthcare.gov functioned smoothly for the most part, even during periods of heavy use.

It may also be that the federal exchange covers more states that have a larger proportion of lower income people, Carpenter says. More than 85 percent of people who bought health insurance on the state and federal marketplaces were eligible for premium tax credits that were available to people with incomes up to 400 percent of the federal poverty level ($46,680 for an individual).

As for retention differences, it’s possible that more people over-reported their income on state-based exchanges for 2014 coverage and were subsequently shifted to the Medicaid program this year. Twenty-eight states have expanded Medicaid to adults with incomes up to 138 percent of the federal poverty level (about $16,100). In those states, if someone applies for a marketplace plan, the exchange will move them into Medicaid if their income falls below that threshold.

Such shifting could make it appear that some states had lost enrollees when instead they just moved to Medicaid. Avalere didn’t incorporate Medicaid eligibility shifts into its analysis.

But it’s not clear why state-based exchanges would experience such shifts to a greater degree than states where the exchange is run by the federal government.

The takeaway? “The numbers underscore that significant growth year over year is not necessarily a given,” Carpenter says. “The question for all exchanges is how to continue to grow over time and attract healthier enrollees.”

Please contact Kaiser Health News to send comments or ideas for future topics for the Insuring Your Health column.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

As consumers increasingly are being asked to pay a larger share of their health bills, a coalition of insurers, pharmaceutical companies, and provider and consumer advocacy groups launched Thursday a new push for greater transparency regarding the actual costs of services.

The group includes AARP, Novo Nordisk, the National Consumers League, the Ambulatory Surgery Center Association, the National Council for Behavioral Health and Aetna.

Health care transparency, long a buzz word, means all consumers — whether they are covered by Medicare, work-based insurance or without coverage at all — have access to information enabling them to estimate accurately the cost of health services, and compare physician quality rankings and outcomes.

The initiative, “Clear Choices,”  will add to private and government efforts already underway to get more such information to patients, including Medicare’s Physician Compare, and the Health Care Cost Institute’s ‘Guroo,’ which culls data from private insurers to provide average prices regionally.

The group’s first priority is advancing the Medicare doctor payment legislation pending in the Senate because it includes a provision requiring Medicare to release for broader use a substantial amount of data on claims at the provider level.

“We have data, but it’s a random sample across entire nation. So you can’t use it to do what Clear Choices and other organizations want to do — to analyze the cost and quality of individual providers within the Medicare program,” said Francois de Brantes, executive director of the Health Care Incentives Improvement Institute, a nonprofit group that studies and promotes payment reform. It is not affiliated with the initiative.

Another priority is to push states and the federal government to enforce the part of the health care law that requires exchange plans to give consumers very specific information about provider networks and covered drugs.

“Insurance company rates are negotiated, so each patient would be subject to a different rate,” said Caroline Steinberg, vice president of trends analysis at the American Hospital Association, which is not involved in the campaign. That negotiated rate means a consumer will likely pay less money for an in-network doctor or hospital. But they need a way to find out that information.

Some states already have moved in this direction.

For example, Connect for Health Colorado, Colorado’s state exchange, provides a tool for shoppers to compare insurers based on what drugs are covered, and what providers are in network.

The coalition’s most lofty goal is to change the health system so that patients can know upfront the cost of a medical procedure. This is a complicated proposition because so many components – among them facility-use fees, physician charges, deductibles and co-payments – are factored into the bill a patient eventually receives.

Wanda Filer, a physician based in York, Penn., says even health care providers are often confused by pricing.

“Physicians don’t even know where to refer people and they don’t know what to tell them,” said Filer, who is on the board of directors of  the American Academy of Family Physicians, which is part of the coalition.

Representatives of Clear Choices have framed the campaign as being simple – if a consumer can get a sticker price for a television, so should they for health care. But others say this is much harder than it might appear.

“It’s like asking what the price [will be] for the repair of a leaky roof before the roofer has figured out the cause of the leak,” said Mark Pauly, professor of health care management at the University of Pennsylvania. “It’s harder for the insurer to tell you what you will end up paying until you have precise information on what services you will be using—which patients (and, for that matter, doctors) do not always know in advance.”

The group’s other objectives include:

– Improving quality measures for doctors and hospitals so that patients will be armed with more comparative information.

– Requiring hospitals to be clearer regarding what may or may not be included in their cost estimates for care.

– Creating better tools for consumers to make medical decisions based on price, quality and safety of medical services.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.