Stroke caregivers happiest when they tend to their own needs too

(Reuters Health) – People taking care of a family member who’s had a stroke are happier when they maintain control of their own lives and continue to enjoy their interests and hobbies, according to new Canadian research.

“In the caregiving field, a lot of the studies have focused on more negative outcomes, like burden or depression and things like that, but when you actually speak with family caregivers they say, ‘You know, it’s not all that bad,'” Jill Cameron told Reuters Health.

Cameron, who led the new study, is a researcher in the Department of Occupational Science and Occupational Therapy in the Graduate Department of Rehabilitation Science at the University of Toronto.

“There are some very good aspects to helping your family member and providing care, so we wanted to do a study that tried to emphasize some of the positive things and then try to understand what the factors that contributed to caregivers really being happy in the caregiving role are,” Cameron said.

About 800,000 people in the U.S. have a stroke each year and it’s a leading cause of disability, according to the Centers for Disease Control and Prevention. The stroke survivors’ family members often become the primary caregivers.

Cameron and her colleagues wanted to see what helps to keep caregivers happy so they can sustain their role over the long term.

The researchers enrolled 399 people from Toronto and London, Ontario, and Montreal, Quebec, who were caring for a family member that had survived a stroke. The caregivers were mostly women (69 percent) and most were married to the person they were caring for (70 percent).

The researchers used questionnaires to assess the wellbeing of the caregivers.

They found that caregivers reported more psychological wellbeing when the stroke survivors they cared for had better cognitive function, less depression and when the strokes were more severe. The happiest caregivers tended to be older and in good physical health.

Caregivers were also happiest when they provided more assistance to the stroke survivor, maintained their own activities, believed that they could gain personally by providing care and felt they still had control over their own lives.

The researchers followed up with 80 of the caregivers two years later and found that psychological wellbeing remained stable after two years, they report in the journal Stroke.

Cameron said it’s important to recognize that stroke doesn’t just cause physical disability, it also affects the victim’s mental health as well as cognitive abilities and the ability to communicate with people.

“I think those things are the things that families are probably struggling with a little bit more,” she said. “They struggle more with the cognitive and emotional side than they do with the caring for somebody who has a physical disability.”

The American Stroke Association offers tips for caregivers here:

Cameron and her colleagues acknowledge in their report that they only looked at caregivers of family members who had mild to moderate strokes and they collected no information on the caregivers’ psychological states before they became caregivers.

So it’s not clear if caregiving resulted in positive changes in wellbeing or if the participants were more likely to become caregivers because they had better feelings of wellbeing in the first place.

“The most interesting finding for me was that when somebody’s caring for somebody post stroke – which comes on very quickly – typically, family members drop everything and they really just focus on the person with the stroke,” Cameron said.

“I think that’s important early on in the illness, but later on family members have to remember that they have their own lives and if they can engage in activities that are of value to them while they’re also taking care of their caregiving responsibilities – it’s actually quite good for them,” Cameron said.

Cameron also said that having better access to support from different community organizations or community groups can help caregivers deal with their situation.

“Anything that helps them balance all these responsibilities in a positive way can ultimately be good for the caregivers,” Cameron said.

Nan Greenwood said she appreciates the timeliness of the new study.

“For far too long, research on carers of people with stroke has focused on the negative aspects of the role ignoring evidence of positive aspects of the experience,” she told Reuters Health in an email.

Greenwood is a reader in Health and Social Care Research at St George’s University of London and Kingston University, UK. She was not involved in the study.

“The emphasis on ‘carer burden’, a vague, poorly defined, all-encompassing concept, has provided a picture of carers as individuals with a poor quality of life in a role with no personal satisfaction,” Greenwood said.

She explained that this negative image has been perpetuated in research because caregivers are usually only asked about the challenges and the adverse impacts of the role.

Greenwood said that much of the new study supports earlier research, although the finding of better wellbeing among caregivers supporting survivors of more severe strokes is more unusual.

“The association of gaining satisfaction from caring, mastery, maintaining valued activities and psychological wellbeing are important aspects of Cameron’s study and open up important, practical means of encouraging carers to sustain or improve their wellbeing,” Greenwood said.

She wondered if the caregivers’ sense of mastery was a key to their wellbeing.

“Being a carer can lead to a sense of loss of autonomy for both carers and stroke survivors and enhancing their autonomy may be crucial here,” Greenwood said.

Source: Stroke, online March 20, 2014.

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Exclusive: Costs to public of $84,000 hep C drug ‘outrageous' – Kaiser

(Reuters) – Kaiser Permanente, the biggest U.S. health maintenance organization, said it is using Gilead Sciences’ new hepatitis C drug, Sovaldi, even though its $84,000 treatment price is “outrageous.”

The medication is widely viewed as a breakthrough that can cure a majority of hepatitis C patients, often within 12 weeks. Analysts project 2017 sales of $9.1 billion, according to Thomson Reuters Pharma.

But Gilead has come under fire, from insurers and Congress, for Sovaldi’s $1,000-a-pill price at a time when U.S. healthcare spending is under scrutiny and President Barack Obama’s Affordable Care Act aims to make health coverage accessible to everyone.

The company says Sovaldi should create huge savings for the healthcare system over time by preventing complications from liver disease and transplants, but declined requests for evidence to back up those claims. A Gilead executive told Reuters last week that it had an agreement to discount the drug for the Kaiser network, based on their recognition of the long-term benefits.

In an interview, Kaiser officials disputed that view. Kaiser is using Sovaldi “not because we see this as a high-value, cost-effective approach,” said Dr. Sharon Levine, associate director of the Permanente Medical Group. “It’s because this is a therapy that represents a substantial improvement over existing therapies … It’s an outrageous price for a therapy that has huge public health implications.”

She called Kaiser’s discount on Sovaldi “modest” and said state Medicaid programs and private health insurers “are going to have to make very serious tradeoffs just based on a single manufacturer’s decision on pricing a drug because they can.”

Gilead officials declined to comment.

Hepatitis C, estimated to infect about 3.2 million Americans, is a blood-borne virus that can cause severe liver damage.


Democratic lawmakers in the House of Representatives, led by California’s Henry Waxman, have asked Gilead to explain Sovaldi’s pricing. The company said it met with committee staff on Monday.

The public call to Gilead from Congress has sent shock waves through the biotech investment community, raising concerns that other leading drugmakers could face pressure on pricing new medicines. Over the past month the Nasdaq Biotechnology Index has fallen more than 8 percent.

Insurers and state officials running the Medicaid health program for the poor fear a multibillion-dollar tab from Sovaldi alone.

Investment bank Leerink Partners estimates the drug’s cost could trim as much as 10 percent from the earnings of publicly traded health insurers.

Kaiser, a nonprofit, said Sovaldi will be a material portion of its drug budget – a cost ultimately born by members and employers who pay insurance premiums.

“It comes back to the question of who benefits at a time when there is enormous pressure to ensure that the cost of healthcare, the cost of providing access to cures doesn’t bankrupt all of the rest of the investments that the country needs to make,” Levine said.

(Reporting by Deena Beasley; Editing by Michele Gershberg and Prudence Crowther)

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WHO says Guinea Ebola outbreak small as MSF slams international response

(Reuters) – The World Health Organization on Tuesday played down the extent of an outbreak of the deadly Ebola virus suspected to have killed over 80 in Guinea, a day after medical charity Medecins Sans Frontieres (MSF) warned of an unprecedented epidemic.

Countries in West Africa – including neighboring Sierra Leone and Libera where suspected cases have also been detected – are scrambling to bring the outbreak under control, with many of them imposing health and travel restrictions.

MSF has warned they face an uphill task because the infections are scattered across several locations, most worryingly in Guinea’s densely populated capital Conakry. It blasted governments and international public health organizations for not doing enough to tackle it.

However, the World Health Organisation (WHO) said the number of suspected and confirmed cases in Guinea was unchanged from the previous day at 122, of whom 80 had died. In Liberia, there were seven suspected or confirmed cases, of whom four had died.

Asked if the spread of the disease was unprecedented, WHO spokesman Gregory Hartl said there had been much larger outbreaks in the Democratic Republic of Congo and Uganda.

“This is relatively small still. The biggest outbreaks have been over 400 cases,” Hartl told a news conference in Geneva. He added it was not the first time Ebola had been reported in a capital city. It struck Gabon’s Libreville in the 1990s.

“Ebola already causes enough concern and we need to be very careful about how we characterize something which is up until now an outbreak with sporadic cases,” Hartl said.

However, MSF Director General Bruno Jochum said it was remarkable the outbreak had spread to several places and to a city of around two million people, Conakry.

“These two characteristics make it an exceptional event for an Ebola outbreak up until today,” Jochum said, adding that given the high mortality rates among identified cases, it should be taken extremely seriously.

Ben Neuman, a virologist at Britain’s University of Reading,

also said it was a real worry that the virus had spread from sparsely populated forest zones to Conakry, where population density was close to 10,000 per square kilometer. “An Ebola outbreak there could lead to a humanitarian disaster,” he said.

Mariano Lugli, coordinator of MSF’s project in Conakry, said on Monday: “We are facing an epidemic of a magnitude never before seen in terms of the distribution of cases in the country.”


Jochum said at a separate news conference in Geneva on Tuesday that MSF and other organizations such as the Red Cross and Pasteur Institute had been active on the ground but the response from state authorities and international public health organizations has been minimal.

The outbreak of one of the world’s most lethal infectious diseases has alarmed a number of governments with weak health systems, prompting Senegal to close its border with Guinea and other neighbors to restrict travel and cross-border exchanges.

Guinea, the hardest hit by the outbreak, had the lowest ratio of hospital beds per capita in a World Bank survey of 68 nations in 2011, with just 0.3 hospital beds per 1,000 people.

Liberia’s Senate on Tuesday agreed that the government should declare a state of emergency that would lead to the closure of the country’s borders.

“Liberia should close her borders with all the three countries which are sharing borders with us – Guinea, Sierra Leone and Ivory Coast,” Senator Sando Johnson told Reuters.

Liberia’s lower house of parliament is expected to debate the proposal on Thursday. If passed, it will be sent for approval to President Ellen Johnson Sirleaf.

Saudi Arabia’s health ministry said in a statement it had recommended its government cease issuing visas to pilgrims from Guinea and Liberia as a precautionary measure, although the WHO has not yet requested any travel or trade ban on both countries.

(Additional reporting by Stephanie Nebehay and Tom Miles in Geneva; Angus McDowall in Riyadh; Alphonso Toweh in Monrovia and Kate Kelland in London; Writing by Bate Felix; Editing by Andrew Roche)

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U.S. insurers fear backlash over new Obamacare rate increases

A boy waits in line at a health insurance enrollment event in Cudahy, California March 27, 2014. REUTERS/Lucy Nicholson

A boy waits in line at a health insurance enrollment event in Cudahy, California March 27, 2014.

Credit: Reuters/Lucy Nicholson

(Reuters) – As the first Obamacare enrollment period comes to a close, U.S. insurers are already anticipating the need to raise prices for 2015 and fear that it will put them at the center of the political blame game over President Barack Obama’s healthcare law.

The Obama administration was poised on Tuesday to declare victory over signing up more than 7 million people for this year, overcoming technology failures that stymied enrollment in the program’s early weeks and Republican efforts to discredit it in the eyes of consumers.

But insurers have already said that the first group of new enrollees under Obamacare, as the law is widely known, represent a higher rate of older and costlier members than hoped. To keep their health plans from losing money in the coming years, many expect monthly premium rates to rise by double-digit percentages.

That could set the stage for a public outcry ahead of congressional elections this year, giving ammunition to Republicans and creating new friction with the White House that could endure into the 2016 presidential election.

“I do think that it’s likely premium rate shocks are coming. I think they begin to make themselves at least partially known in 2015 and fully known in 2016,” said Chet Burrell, chief executive officer of CareFirst BlueCross BlueShield. “That will be different in different parts of the country. I don’t think it will be uniformly the same.”

“Do the premiums need to rise, just to cover the cost, to such a level that it creates both political heat, regulatory heat, finger-pointing, accusation?” Burrell said at the Reuters Health Summit in Washington on Tuesday. “If that happened, then the environment becomes very difficult and it doesn’t in a sense matter that you worked out all the details. You’re at each others’ throats because it just costs so much.”

CareFirst, which sells Obamacare plans in Maryland, Virginia and the District of Columbia, expects to have signed up 140,000 people for this year. Burrell said about half of the sign-ups were people over the age of 45.

David Cordani, CEO of insurer Cigna, said his company has raised the issue of potential rate increases with the Obama administration and has suggestions for changes to the program that could help mitigate sharp spikes, including providing new lower-cost options to consumers and giving them a greater choice over which health benefits are covered.

He described the discussion as part of an ongoing, carefully crafted dialogue with the White House that has been built in recent years.

“There’s a risk of finger pointing,” Cordani said. “If rock-throwing transpires, the party that will probably lose in the equation is the individual. That will be a failure. To me, that’s a failure of leadership of all the parties involved: states, insurers, the administration. And we’re trying to proactively engage in that conversation now.”

Cigna, which is selling Obamacare plans in five states and is considering whether to expand that further in 2015, has said it won’t make money on the business this year. It expects to have signed up as many as 100,000 new members under the program for this year.

Cordani said on Tuesday he didn’t expect “a big positive return” financially in 2015.


Some policy experts question whether insurers would really be wise to raise prices dramatically next year as they try to build a new market and gain share.

“You want to establish a client base. You want to attract good risks,” said Henry Aaron, an economist at the left-leaning Brookings Institution, referring to healthier consumers. “You don’t do that by charging very high premiums. If I were in the insurance business, and I got a little bit of deterioration in my pool, I’m not sure I would respond to it next year.”

U.S. Senator Marco Rubio, a prominent Republican critic of Obamacare, said the skew of enrollment towards older consumers who are more likely to be sick is one of the program’s fundamental flaws and proof it should be changed or even repealed.

While he said insurers may have no choice but to raise prices to prevent major losses, he opposes provisions in the law that provides funding to the industry in the next few years to offset such risks.

“I think what they should be more concerned about is that once the exchanges fail and once this happens, that the argument that might come from the administration would be ‘well, the reason this is happening is the greedy insurance companies want to make more money’ as opposed to these companies are simply pricing out what it is they are getting,” Rubio told the Reuters Health Summit.

“I would say to you that many of these companies were willing participants in all of this. Many of them supported the law, thinking it was going to force more customers in their direction. It’s not turning out the way they planned,” he added. “I’m not sure that taxpayers should be involved in paying for it.”

The average monthly insurance premium in 2014 for an individual is $328 nationwide, according to government data. But the figures varied widely by state, and within states. More than 80 percent of people signing up for Obamacare this year were also eligible for government subsidies, in the form of tax credits and cost-sharing assistance, to offset their monthly costs.

At the same time, several million Americans who were already insured under the individual market faced the cancellation of their policies this year, creating a political firestorm for Obama, who had promised that consumers who liked their existing plans could keep them.

Many of them found the new Obamacare health plans, which require insurers to cover more benefits, were more expensive than their old policies. The administration has allowed insurers to extend those policies for up to three years.

(For other news from Reuters Health Summit, click here)

(Reporting by Caroline Humer and David Morgan; Editing by Michele Gershberg and Jim Loney)

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NHS facing 'biggest ever challenge'

By Nick Triggle
Health correspondent, BBC News

Simon Stevens

Staying healthy is a “team effort”, NHS England’s chief executive Simon Stevens says

The NHS is facing the biggest challenge in its history because of the squeeze on its budget, says its new boss.

In a speech on his first day as NHS England’s chief executive, Simon Stevens, will say the health service is enduring the most sustained “budget crunch in its 66-year history”.

He will warn navigating the next few years will require a huge effort.

And he will say only by “radically transforming services” will the NHS continue to thrive.

Mr Stevens joins NHS England after a decade working for the US firm United Healthcare.

Before that he worked as a health adviser in Tony Blair’s government and held various management posts in the NHS.

The speech will be made on Tuesday evening after he spends the day visiting services in the North East, which is where he started his NHS career in the late 1980s.

‘Biggest effort’

He is expected to say: “The global recession has meant the NHS facing its most sustained budget crunch in its 66-year history.

“But care for our patients has continued to be of an extremely high standard. That is a remarkable tribute to the personal dedication – and shared sacrifice – of health service staff.

“As someone who has spent the last decade working in healthcare around the world, I know of no other country’s health system which has managed this economically turbulent period better.”

But he will add: “I know that for the NHS the stakes have never been higher. Service pressures are intensifying, and longstanding problems are not going to disappear overnight.

“Successfully navigating the next few years is going to take a team effort – involving the biggest team in the biggest effort the NHS has ever seen.”

He will say a key challenge relates to the ageing population and how people are supported to live as “independently as possible”.

“Our traditional partitioning of health services – GPs, hospital outpatients, A&E departments, community nurses, emergency mental healthcare, out-of-hours units, ambulance services and so on – no longer makes much sense.”

Mr Stevens has replaced Sir David Nicholson, who announced last year he was stepping down after seven years leading the health service.

He had faced repeated calls to resign over his role in the Stafford Hospital scandal.

Sir David spent 10 months in charge of the local health authority in 2005 and 2006 at the height of the problems.

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Most web-based colon-screening information is lacking: study

(Reuters Health) – When researchers evaluated a dozen websites meant to inform patients about colon cancer screening, most were written at too high a reading level and lacked important risk and benefit information.

This isn’t a new problem. Researchers have known for at least 20 years that many materials written for patients, not just those about colonoscopy, are not up to snuff, according to Terry C. Davis.

Davis, a professor at Louisiana State University Health Sciences Center in New Orleans, was not involved in the new report but has been studying health literacy and the quality of patient information for more than a decade.

“Health information is written at too high a level and it’s not user friendly,” Davis told Reuters Health. “It’s too complex and there’s too much jargon.”

For the new study, reviewers led by Dr. Deepak Agrawal at the Division of Digestive and Liver Diseases at the University of Texas Southwestern Medical Center in Dallas evaluated the websites and scored them on readability, suitability and how they would affect patient beliefs about colonoscopies. Three separate reviewers scored each site.

Of the 12 popular websites the researchers looked at, 10 were written above the recommended sixth-grade reading level. Medline Plus and UpToDate Basics were the most readable sites. The American Society for Gastrointestinal Endoscopy’s patient information website Screen4coloncancer was found to be the hardest to read.

Only half of the websites discussed colon cancer risk in the general population and less than a quarter addressed specific groups at greatest risk, namely African Americans, smokers and people with diabetes or obesity.

The Centers for Disease Control and Prevention (CDC) site (here: was the only one to receive a “superior” suitability score.

The CDC recommends that all people over age 50 start getting screened for colon cancer regularly, and people at higher risk might need to start earlier. Colonoscopy, a similar technique called sigmoidoscopy as well as fecal occult blood testing – a test for blood in the stool – are all accepted methods of colon cancer screening.

No websites specifically mentioned that people who qualify for screening need to do it even if they have no symptoms, like blood in the stool, stomach pains or unexplained weight loss.

Only three of the sites discussed cost and potential pain involved in a colonoscopy, and only one mentioned the potential embarrassment of the procedure, according to the study results published in Gastrointenstinal Endoscopy.

Colonoscopies can cost from $1,500 to $3,500 and prices may even vary in the same town, Davis said.

Since many prior studies had come to the same conclusion about health materials in print, this result wasn’t unexpected, Agrawal told Reuters Health in an email.

But he was surprised that almost all the websites needed to improve their content and presentation significantly, he said.

“The question that baffles me,” Agrawal said, “is that we have known that we present material to our patients in ways that are difficult for them to understand but why has there been so much inertia to changing that?”

Most information online is unnecessarily complex, Davis said, which may be because the experts who write the content believe their audience is more sophisticated than in reality.

“Six out of 10 patients now get at least some of their information about colon cancer screening on the Internet,” Agrawal said, and regardless of literacy most people have access to it, so readability is important.

Websites can be useful for patients, but should never take the place of talking to a doctor, he added.

Patients shouldn’t be afraid to keep asking questions of their doctor until they fully understand, Davis said.

“I believe that the professional medical societies we surveyed are still the best web resources for information for the patients,” Agrawal said. “We just have to do a better job of presenting the same information in a way that is more understandable to the people and one that makes sense to them.”

SOURCE: Gastrointestinal Endoscopy, March 25, 2014.

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Obamacare enrollment exceeds seven million target despite setback

Julissa Esparza, 2, sleeps in the arms of her grandfather Leobardo Salazar, 58, as they wait in line at a health insurance enrollment event in Cudahy, California March 27, 2014. REUTERS/Lucy Nicholson

Julissa Esparza, 2, sleeps in the arms of her grandfather Leobardo Salazar, 58, as they wait in line at a health insurance enrollment event in Cudahy, California March 27, 2014.

Credit: Reuters/Lucy Nicholson

(Reuters) – President Barack Obama’s national healthcare program signed up more than 7 million people by the last day of March, the White House said on Tuesday, notching a rare victory after a months-long, glitch-filled rollout of the law.

Obama is scheduled to make a statement about the Affordable Care Act, popularly known as Obamacare, at 4:15 p.m. EDT in the White House.

His remarks could be the start of a victory lap for the administration, which suffered from the botched unveiling of the program’s primary website,, and wavering support from Americans years after the U.S. Congress passed the healthcare law over Republican objections.

“With the remarkable surge in enrollment, 7,041,000 people signed up for health insurance before the midnight deadline yesterday and that doesn’t count the last day surge in signups in more than a dozen states that run their own marketplaces,” White House spokesman Jay Carney told reporters.

Experts had predicted a last-minute surge. The number represented what the White House has called a comeback story that could boost Democrats in the November congressional elections.

Obama’s party is seeking to hold on to control of the U.S. Senate and minimize losses in the Republican-controlled House of Representatives, but the problems with Obamacare have complicated congressional races and handed Republicans a key talking point for skeptical constituents.

After a White House meeting with Obama, House Democratic leader Nancy Pelosi told reporters her members were not running away from the issue as they approached the elections.

Monday’s deadline for initial enrollment in the program came after a surge in registrations despite the return of technical problems, including a longer-than-expected maintenance session, although nothing as serious as the issues that beset the website’s launch in October.

The site on Tuesday announced that open enrollment for Obamacare had closed, but people whose applications were thwarted by technical problems would be given a chance to finish their registration.

By last week, more than 6 million people had signed up for private health coverage through the new Obamacare insurance markets, surpassing a target set after the disastrous rollout called the enrollment process into question.


Despite the figures, some questions about those who had signed up lingered.

“We still have a lot to learn about what underlies those numbers in terms of who signed up and how many were newly insured people versus switching from other coverage,” said Karen Pollitz, a senior fellow at the Kaiser Family Foundation.

“We have more to see … about how many of them actually completed enrollment and how much coverage expansion was accomplished.”

The healthcare law, one of Obama’s key promises as a presidential candidate in 2008, was intended to expand access to healthcare coverage for millions of uninsured Americans, so having enrollment figures that reflect newly insured people is critical to the program’s success.

Having a robust percentage of healthy young people to offset older enrollees is also important. A breakdown was not yet available, Carney said, but the demographic mix would be sufficient to ensure that the health market places that form the cornerstone of the law would function smoothly.

Republicans pointed to several outstanding questions about the numbers, including how many of the enrollees had seen their plans canceled because of the new law; how many people saw their premiums go down; and how many people who selected plans actually completed the process and paid their premiums.

“We don’t know of course, exactly what they have signed up for, we don’t know how many have paid,” Senate Republican leader Mitch McConnell told reporters on Capitol Hill, referring to the enrollees in the program.

“What we do know is that all across the country our constituents are having an unpleasant interaction with Obamacare. Whether they can sign up for a policy or not, they are discovering, of course, higher premiums, a higher deductible.”

The future of Obamacare is one of the top issues in the November elections. House Speaker John Boehner on Monday pledged once again to repeal the program.

(Additional reporting by Thomas Ferraro, David Storey, Larry Downing and Mark Felsenthal; Editing by Mohammad Zargham)

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