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In Sunlit Paradise, Seniors Go Hungry

Kaiser Health News - Tue, 05/26/2015 - 5:00am

NAPLES, Fla.— It wasn’t until the Maffuccis found themselves living on cups of coffee, and coffee alone, that they finally called a food pantry for help.

The couple had sold their suburban New Jersey home where they had raised three children and set out to pursue the glossy dream of an easy-going retirement in sunny southwest Florida. But Mina and Angelo Maffucci quickly ran out of money—overtaken by illness, bad luck and an economic crisis that claimed their Florida dream home to foreclosure. They soon found themselves staring at an empty cupboard.

“You open up the closet and all we had was coffee,” said Angelo Maffucci, 82, who had been a drywall installer in New Jersey. “I never thought we would be down on our hands and knees like that, but it happened fast.”

While the U.S. economy adds jobs and the financial markets steadily improve, a growing number of seniors are having trouble keeping food on the table. In 2013, the most recent data available, 9.6 million Americans over the age of 60 —or one of every six older men and women—could not reliably buy or access food at least part of the year, according to an analysis from researchers at the University of Kentucky and the University of Illinois.

Enid Borden, president of the National Foundation to End Senior Hunger in Alexandria, Va., which commissioned the report, said the country was doing a “worse job in trying to end senior hunger in America,” noting that the number of seniors who “face the threat of hunger has gone up every single year since we started doing the research on this.”

“And that’s not good,” she said.

Across the country, the rate of food insecurity—the academic term for a disruption in the mundane yet vital task of maintaining a basic, nutritious diet—among seniors has more than doubled since 2001, according to the National Council on Aging. And it is projected to climb even further as the Baby Boom generation gets older.

The precise conditions fueling the increase in senior hunger are unclear: the poverty rate for seniors, in fact, fell from 2001 to 2005, though it has risen every year since, according to the Employee Benefit Research Institute. And, all the while, the rate of food insecurity among older Americans has ticked upward.

But researchers who study the trend say the causes are complicated and overlap. There are the logistical challenges of getting to a grocery store when many seniors can no longer drive, either because of physical disability or because they cannot afford a car. Long rides on public transportation are difficult to endure for seniors suffering from illness, disability and dementia. And those maladies alone can rob seniors of the ability to feed themselves.

This KHN story also ran on PBS Newshour. It can be republished for free (details).

Out-of-pocket medical expenses, which increase steadily as people age, often use up large portions of monthly income for seniors, monies that otherwise might be used on groceries.

The descent into privation for seniors accustomed to middle-class life is usually swift and unforgiving, say the advocates who aid them, and it is often also triggered by failing health, the inability to work or the death of a spouse.

For Sarah Knight, 75, that moment arrived when her husband, a former jeweler from New Jersey who has Alzheimer’s disease, left his job at a Naples supermarket. As his disease robbed her husband of his faculties, the couples’ budget also suffered.

“He’s just falling apart,” Knight said of her husband.

Just one of his medications costs $125 a month, she said, and there is little left from their Social Security check for essentials like food and toilet paper. She found assistance at Jewish Family and Community Services of Southwest Florida, which gives her $100 a month for food and gas and helped her apply for food stamps. Knight was awarded $16 a month, but she says that help comes with a psychological cost.

“All my life, I’ve struggled. So, now, in my 70s, I have to struggle all, all over again?” said Knight. “You know how ashamed I get?”

That sentiment is echoed by Joanne Bartolomeo, 95, who retired from Philadelphia to Naples and continued to work at an upscale dress shop in the tony Venetian Village until just a few years ago. But after an emergency surgery, Bartolomeo could no longer work; she couldn’t keep up with her rising rent and money for food became scarce. Her life was swept into disarray.

“That’s the thing that bothers me,” said Bartolomeo. “At one time, I was in control.”

Pride is one the central reasons, experts say, that only one-third of eligible seniors are enrolled in food stamps, compared to three-quarters of the eligible general population.

“It’s a different generation,” said Thomas Felke, an assistant professor of social work at Florida Gulf Coast University. The idea of relying on government benefits “may not be something that they admit to,” he added, especially after what “they thought was going to be their life in paradise.”

And many seniors, who have perhaps never before navigated the sometimes complicated public services safety net, don’t know where to look for help or mistakenly believe they don’t qualify for food stamps or other assistance programs, including the Commodity Supplemental Food Program.

“If you’re a single senior sitting in an apartment, you don’t know what to do, you don’t know where to go,” said Al Brislain, president of Harry Chapin Food Bank in Fort Myers, Florida.

To help reach potential hungry seniors, Brislain employs social workers who scour local apartment buildings, senior centers and elsewhere to get the word out about food pantries, home-delivery services like Meals on Wheels and government programs.

When the discussions reveal deep embarrassment over a senior’s plight, Brislain says he reassures older Americans “that they deserve this help, that it’s neighbors helping neighbors, that it’s the government supporting you in your time of need.”

In Naples, the prospect of poverty and hunger hiding amid the towering beachside condominiums and acres of golf courses has been a blow to the city’s image as a ritzy retirement destination and vacation playland. Just a short drive from the upscale Fifth Avenue shopping district, with its impressive palm trees and faux-colonial architecture, are gated communities where researchers, using Census data, have detected surprisingly high rates of poverty. But following up door-to-door to find out more about the well-being and food insecurity has proved challenging.

“These gated communities don’t want people coming around asking questions about poverty,” said Felke. “It’s really hard to find out who is hungry, who is struggling.”

With the help of a Naples food pantry and a weekly ration of $34 in food stamps, the Maffuccis’ cupboards are no longer bare. But nor are they filled with nutritious food. A recent delivery included flavored Dunkin’ Donuts coffee, Uncle Ben’s rice, matzos and pasta.

Angelo Maffucci’s doctor has long urged him to lose weight, especially by eating more vegetables and fish, but it can be a challenge.

“Where you gonna get the money to buy the fish? Fish is expensive!” he said. “If you have it once a week, you’re lucky.”

So on most days, the couple eats pasta instead. “You can cook a pound of pasta for less than $2, and you get a meal,” he said. “So that and a cup of coffee, we get through the day.”

Categories: Health Care

Second Opinions Often Sought But Value Is Not Yet Proven

Kaiser Health News - Tue, 05/26/2015 - 5:00am

Actress Rita Wilson, who was diagnosed with breast cancer and underwent a double mastectomy recently, told People magazine last month that she expects to make a full recovery “because I caught this early, have excellent doctors and because I got a second opinion.”

When confronted with the diagnosis of a serious illness or confusing treatment options, everyone agrees it can be useful to seek out another perspective. Even if the second physician agrees with the first one, knowing that can provide clarity and peace of mind.

Rita Wilson in New York City in May. (Photo by Chance Yeh/Getty Images)

A second set of eyes, however, may identify information that was missed or misinterpreted the first time. A study that reviewed existing published research found that 10 to 62 percent of second opinions resulted in major changes to diagnoses or recommended treatments.

Another study that examined nearly 6,800 second opinions provided by Best Doctors, a second-opinion service available as an employee benefit at some companies, found that more than 40 percent of second opinions resulted in diagnostic or treatment changes.

More from this series

But here’s the rub: While it’s clear that second opinions can help individual patients make better medical decisions, there’s little hard data showing that second opinions lead to better health results overall.

“What we don’t know is the outcomes,” says Dr. Hardeep Singh, a patient safety researcher at the Michael E. DeBakey VA Medical Center and Baylor College of Medicine in Houston, who co-authored both those studies. “What is the real diagnosis at the end? The first one or the second one? Or maybe both are wrong.”

That doesn’t mean second opinions are a bad idea. Experts estimate that diagnostic errors occur in 10 to 15 percent of cases.

“There’s no getting away from it, diagnosis is an imprecise thing,” says Dr. Mark Graber, a senior fellow at RTI International who also co-authored the studies. Graber is the founder and president of the Society to Improve Diagnosis in Medicine.

Second opinion requests were related to diagnosis questions in 34.8 percent of cases in the Best Doctors study. These included 22.5 percent of patients whose symptoms hadn’t improved, 6.3 percent who hadn’t gotten a diagnosis and 6 percent who had questions about their diagnosis.

In Wilson’s case, she wrote that after two breast biopsies she was relieved to learn that the pathology analysis didn’t find any cancer. But on the advice of a friend, she decided to get a second opinion, and that pathologist diagnosed invasive lobular carcinoma. Wilson then got a third opinion that confirmed the second pathologist’s diagnosis.

This KHN story can be republished for free (details).

Getting a second opinion may not involve a face-to-face meeting with a new specialist, but it will certainly involve a close examination of the patient’s medical record, including clinical notes, imaging, pathology and lab test results, and any procedures that have been performed. Some people choose to have that second look done by physicians in their community, but other patients look for help elsewhere.

In addition to employer-based services like Best Doctors or Grand Rounds, medical centers such as the Cleveland Clinic and Johns Hopkins in Baltimore also offer individual patients online second opinions.

“It really does give people relatively easy access to expertise,” says Dr. C. Martin Harris, chief information officer at the Cleveland Clinic.

The medical center’s MyConsult service doesn’t accept insurance. A medical second opinion costs $565, while a consultation with a pathology review costs $745.

Face-to-face meetings with specialists who provide a second opinion and review a patient’s medical record are more likely to be covered by insurance than an online consult, but nothing is guaranteed.

“Usually it’s not the second opinion where the hiccup is,” says Erin Singleton, chief of mission delivery at the Patient Advocate Foundation, which helps people with appeals related to second opinions. “It may be that the MRI that they want to do again won’t be approved.”  Many insurers won’t pay for diagnostic or other tests to be redone, she notes.

Patients seeing an out-of-network specialist for a second opinion may encounter significantly higher out-of-pocket costs, particularly if they want to subsequently receive treatment from that provider. In those instances, the foundation can sometimes work with patients to make the case that no specialist in their network is equally experienced at treating their condition.

Of course, asking for a second opinion doesn’t necessarily mean accepting the advice. In the Best Doctors survey, 94.7 percent of patients said they were satisfied with their experience. But only 61.2 percent said they either agreed or strongly agreed that they would follow the recommendations that they received in the second opinion.

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

Categories: Health Care

Obamacare’s Big Gamble on Hospital Productivity

Medicare -- New York Times - Tue, 05/26/2015 - 12:00am
An influential theory says productivity growth in health care is inherently low, but a new study offers reason for hope.
Categories: Elder, Medicare

What You Really Need To Know About Dense Breasts

CommonHealth (WBUR) - Mon, 05/25/2015 - 6:06am

From left: 1) a breast of normal density showing fat (white), fibrous tissue (pink) and glands within the rectangle, while a cancer is present (circle). This illustrates the fact that cancer can occur in breasts of any density; 2) an extremely dense benign breast without any fat, composed of pink fibrous tissue and minimal amounts of glands; 3) an extremely dense breast involved by cancer (infiltrating haphazard small glands), in contrast to Fig 2, but very similar in appearance, demonstrating the subtle similarities. (Courtesy Michael Misialek)

By Michael Misialek, M.D.
Guest Contributor

Reading the pathology request on my next patient, I saw she was a 55-year-old with an abnormality on her mammogram. Upon further investigation I discovered she had dense breasts and a concerning “radiographic opacity.” The suspicion of cancer was high based on these findings and so, a breast biopsy had been recommended. As I placed the slide on my microscope and brought the tissues into focus, I immediately recognized the patterns of an invasive cancer. Unfortunately the suspicion had proven correct.

Just a few patients earlier, an almost identical history had prompted another breast biopsy. This time the results were far different, a benign finding and obviously a sense of relief for the woman. Every day these stories unfold; the never ending workup of abnormal mammogram findings. Both radiographically and microscopically, it can be challenging at times sorting out these diagnoses, particularly in the face of dense breasts.

But what, exactly, are dense breasts and why are they suddenly in the news?

Breast Tissue 101

Breast tissue is actually made up of three tissue types when viewed under the microscope. The percentage of each varies between patients. There is fat, fibrous tissue (the supporting framework) and glandular tissue (the functional component). This is what I actually see under the microscope. Cancer can occur in fatty or dense breasts. It can be toughest to assess when the background is dense.

Biopsy, considered the gold standard in diagnosis, may even prove difficult to interpret when in the background of dense breasts. Dense breasts can hide a cancer, making it more difficult to detect both by mammogram and under the microscope.

Breast density has taken a lot of heat recently. A new study published in the Annals of Internal Medicine found that not all women with dense breasts and a normal mammogram warranted additional screening, as was previously thought. Understandably this report has received much attention. The authors found nearly half of all women had dense breasts. This alone should not be the sole criterion by which additional imaging tests are ordered since these women do not all go on to have a cancer. Clearly other risk factors are at play.

Confusion All Around

This is confusing for patients and doctors alike, especially when it seems as if screening guidelines are a moving target. Recently, the American College of Physicians issued new cancer screening guidelines: among these was mammograms, being recommended every two years. This too is getting a lot of press.

The American College of Radiology, American Cancer Society, Society of Breast Imaging and American College of Obstetricians and Gynecologists recommend yearly mammograms beginning at age 40.

Breast density is a subjective factor measured by the radiologist and is reported using the Breast Imaging Reporting and Data System. This ranges from almost entirely fatty to extremely dense. The Massachusetts Radiology Society provides an overview of the BI-RADS categories which are based on four measures of increasing density.

Currently 21 states now require providers to inform patients whether they have dense breasts — Massachusetts is one of them. The law is far from perfect. There is variability in how results are provided.

And there are other problems: increased false positive rates from using additional tests such as MRI and ultrasound, not to mention the increase costs associated with such screening. Most states do not mandate insurance coverage in these circumstances. Currently it has proven cost effective in only high risk patients. It is unknown how and if additional screening methods should be employed in those with average risk. Despite these problems, mammogram is still the best screening method, having been documented to reduce breast cancer deaths.

But imaging alone should not be assessed in a vacuum. Individual risk stratification is needed, emphasized by the Annals of Internal Medicine study. The Massachusetts Radiology Society offers resources for both patients and doctors.

There are also calculators available to help assess a woman’s risk of developing breast cancer. These typically factor in age, race, family history, a history of breast biopsy and density.

Biopsy interpretation by pathologists has come under controversy recently where a study in the Journal of the American Medical Association found diagnostic discordance among pathologists when presented with grey zone diagnoses.

What do we know about the pathology and population trends of those undergoing screening mammograms is that we are definitely diagnosing breast cancer more frequently. Breast density does play a factor. Those with dense breasts or a positive family history have a higher likelihood of being diagnosed with cancer.

However breast density is not the only factor. As the Annals study found, a patient’s personal, genetic and family history are all important in gauging individual cancer risk. This underscores the importance of collaborative care and shared decision making between a patient and their doctor. The extended care team, including pathology, radiology, surgery, oncology and primary care, collectively work to deliver personalized care.

An educated patient is our greatest asset. Be your own advocate. Ask questions and learn. As I finalize the report on my patient, I page radiology to discuss the findings. The dominoes have been set in motion.

Dr. Michael Misialek is associate chair of pathology at Newton-Wellesley Hospital and assistant clinical professor of pathology at Tufts University School of Medicine.

Categories: Health Care

The Palace of Justice in Paris – Pic of the Week

In Custodia Legis - Fri, 05/22/2015 - 1:22pm

This is a guest post by Nicholas Boring, French foreign law specialist at the Law Library of Congress.  Nicholas has previously blogged FALQs: Freedom of Speech in France and co-collaborated on the post, Does the Haitian Criminal Code Outlaw Making Zombies.

I took a few days of vacation to visit relatives in France back in December, and I took this opportunity to snap a few pictures of some noteworthy Parisian judicial buildings. In this post, I will share pictures of the famous Palais de Justice (Palace of Justice), one of France’s most important judicial buildings as well as one of the most important historical sites in Paris.

The Palais de Justice is located on the Île de la Cité, in the very heart of Paris. Originally called the Palais de la Cité (Palace of the City), it appears to have originally been built in the  10th century on the site of a former Roman palace. It served as the main residence of many French kings until Charles V moved the royal court to the Louvres Palace in the 14th century. After that, part of it was turned into a prison, while another part served as the seat of the French Parliament under the monarchy, and then as the seat of revolutionary tribunals during the French Revolution. The Palais underwent significant restructuring and renovation during the 19th century to become the main courthouse of Paris.

The place is huge, and though all the parts are physically connected, I think it can best be described as a compound rather than as a single building. In addition to the courts and related facilities, it encompasses two well-known tourist attractions: the beautiful Sainte-Chapelle, and the notorious Conciergerie,where Marie-Antoinette (among many others) spent her last days before being guillotined during the French Revolution.

Nowadays, the former palace houses the Tribunal de Grande Instance (the main type of trial court in the French judicial system) of Paris, the Paris Court of Appeals, and the Cour de cassation. The Cour de cassation is France’s highest court in civil and criminal matters – roughly comparable to the U.S. Supreme Court, except that it does not have jurisdiction over administrative law matters (which fall under the jurisdiction of the Conseil d’Etat), and it does not have the authority to invalidate a law as being unconstitutional (only the Conseil constitutionnel can do that).

This picture shows the main entrance to the Palais de Justice. Note the roof and steeple of the Sainte-Chapelle on the left / Photograph by Nicolas Boring

This clock, located on the northeastern corner of the Palais de Justice, originally dates from the 14th century and was the first public clock in Paris. The tower that rises above it is aptly called the Tour de l’Horloge (Clock Tower). Note the statues on either side, representing Law and Justice / Photograph by Nicolas Boring

A view of the northern side of the Palais de Justice, facing the River Seine. This side is often referred to as the Conciergerie. The door with the two flags on the far right of the picture is the entrance to the Cour de cassation / Photograph by Nicolas Boring

 

A better view of the entrance to the Cour de cassation / Photograph by Nicolas Boring

One of several statues of famous French jurists that adorn the halls of the Palais de Justice. This one is a depiction of Pierre-Antoine Berryer, a 19th century lawyer and politician / Photograph by Nicolas Boring

Categories: Research & Litigation

Why We Need To Talk Now About The Brave New World Of Editing Genes

CommonHealth (WBUR) - Fri, 05/22/2015 - 6:12am

(Image: NIH)

It was standing room only in the Harvard Medical School auditorium last week, the atmosphere electric as an audience of hundreds hummed with anticipation — for a highly technical talk by a visiting scientist, Dr. Jennifer Doudna of Berkeley. Near the front sat the medical school’s dean, Dr. Jeffrey Flier.

Dr. Jennifer Doudna (Vimeo screenshot)

“I don’t believe in my years at Harvard Medical School I’ve ever seen a crowd of this magnitude for a lecture of this kind,” he said.

The draw?

“The draw is, this is one of the most exciting topics in the scene of biology today.”

That buzzworthy biology topic is a revolutionary new method to “edit” DNA that has spread to thousands of labs around the world just in the last couple of years.

Suddenly, it’s no longer purely science fiction that humankind will have the ability to tinker with its own gene pool. But should it?

Learn This Acronym: CRISPR

The hot new gene-editing tool is known by the acronym CRISPR, for “clustered regularly interspaced palindromic repeats.” It acts as a sort of molecular scissors that can be easily targeted to cut and modify specific genes.

CRISPR occurs naturally in bacteria, but scientists are now learning to harness its power to alter DNA for research across the board — cancer, HIV, brain disease — even to make better potatoes. Just this week, the journal Science published a paper on possibly using CRISPR to try to stop female mosquitoes from spreading deadly diseases.

CRISPR looks particularly promising for human diseases that hinge on just one gene, like sickle-cell anemia or cystic fibrosis. Someday, the hope is, CRISPR and gene-editing tools like it will let us cure what are now lifelong diseases by simply deleting and replacing a baby’s “broken” gene.

“The name — definitely it’s a bit jargony, but it is actually an incredibly easy tool to use to manipulate DNA,” says Katrine Bosley, the CEO of Editas Medicine, a Cambridge biotech company founded by leading CRISPR scientists to develop treatments for genetic diseases.

Editas Medicine CEO Katrine Bosley (Courtesy)

“Part of the reason there’s this incredible excitement in the scientific community,” she says, “is that, as many people have picked it up and tried it, it’s worked for them. I’ve had scientists say to me, ‘I tried it and my first experiment worked!’ Now, that almost never happens. Not only does it almost never happen in science generally, it’s even rarer with a very new technology like this.”

Back in the laboratory area of Editas Medicine, scientist Deepak Reyon uses CRISPR to make genetically modified cells and mice. These “models” are key for studying diseases and looking for possible cures — and they’re now far faster and easier to create.

“We can think about generating models at a rate of even two or three models in a week,” he says. “We used to think about generating one mouse model in a year. Ten years ago, people would work on making one model for their PhD thesis.”

Making People Nervous

So — sounds great, right? CRISPR is such a step forward that it’s been compared to going from a manual typewriter and White-Out to computerized word processing, with a lovely “Find” function that lets you search out and correct a given word. The buzz around CRISPR includes loud whispers of “Nobel prize,” and a pending dispute over potentially very valuable patents.

But CRISPR is also making some people, including some scientists, very nervous. It’s raising the prospect of creating “designer babies” — manipulating genes to bolster intelligence, say, or immunity to disease — in ways that future generations will inherit. Remember “Brave New World”? Or the genetic “haves” and “have nots” in the movie “Gattaca”?

“The question is called,” Bosley says, “when you have a technology that suggests something is possible as opposed to wholly theoretical.”

The current reality, though, is that making designer babies is still very much science fiction. Chinese scientists reported in April that they had used CRISPR to edit the genes of human embryos that could never grow into babies anyway — but it didn’t work very well.

And CRISPR has a long way to go before any parent would ever want to use the technology on a baby, because it’s clearly not safe. It’s not specific enough to hit only the genes you’re targeting — it could change others as well. That’s a challenge more immediately for making CRISPR-based therapies for patients with genetic diseases, which must be highly specific.

Dr. Keith Joung at Massachusetts General Hospital is working on that targeting problem.

Dr. Keith Joung (courtesy)

“We now know that we can make a change at a desired target, a so-called on-target site,” he says, “but what has been less clear is if we are causing changes elsewhere in the genome, at so-called off-target sites. So these would be unintended changes to the DNA.”

To his knowledge, CRISPR-based therapies have not yet been tried in human clinical trials, he says.

But Let’s Start Talking…

So CRISPR is still in its early days, but the discussion about using it to alter the human gene pool has already begun in the scientific community — mostly with calls not to cross the line into meddling with human heredity. Though some argue that if and when we can make humanity better — especially by eradicating diseases — maybe we should.

At Harvard Medical School, CRISPR pioneer Doudna said a big scientific meeting this fall would discuss the issue.

The first question, says Boston University bio-ethicist George Annas, is: “Should we ever use this technique on human embryos that are destined to become children? I actually think the answer to that is no.” (Read a fuller discussion with Annas here: “A Taste of the Looming Ethical Debate On Gene-Editing Humans.”)

He argues that the world needs to create a new global body to regulate changes to the human gene pool, maybe called something like The Human Species Protection Agency.

“We need new structures, new oversight, new transparency,” he says. “The scientists can’t do it alone.”

As the science of CRISPR keeps forging ahead, Annas and others are saying, we’d better start talking about where we want it to go — and how far.

Further reading: All CRISPR coverage by Antonio Regalado of Technology Review, particularly this vivid overview: “Engineering The Perfect Baby

Further listening: On Point: Re-Engineering Human Embryos

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Categories: Health Care

Q&A: A Taste Of The Looming Ethical Debate On Gene-Editing Humans

CommonHealth (WBUR) - Fri, 05/22/2015 - 6:09am

Boston University bio-ethicist George Annas discusses the ethical issues raised by new gene-editing tools that may eventually allow humankind to control its own genetic legacy. (Courtesy)

The powerful new gene-editing tool CRISPR is sparking excitement in biology labs — but also calls for a broad discussion about limits, and whether we should ever meddle with the human gene pool. I asked Boston University bio-ethicist Prof. George Annas for his take. Our conversation, edited:

CG: So scientists are saying we should start talking about using CRISPR to alter the human gene pool. What would a conversation like that even sound like?

GA: The conversation is not about CRISPR per se. It’s about: Now that we have techniques to edit the human genome, should we edit the human genome, and if so, for what purposes?

We’ve had this conversation around cloning in the mid-1990s. Most but not all scientists, and almost everyone in the public, agreed we should not try to clone a human being, use our genetic knowledge to make a genetic duplicate human being. And we’ve had very good luck: it’s turned out not to be possible to clone a human being. At least, we don’t know how to do it yet.

But with CRISPR, it seems much more likely that sometime in the not-too-distant future — though it may be decades, this gene editing technology will be dependable enough that someone is likely to try to use it on a human embryo.

This will be a big and dangerous step—dangerous for sure to the resulting child. Many people have no trouble with using genome editing on animals and plants, so long as you’re not harming the animal in a way that makes it suffer. But children do suffer. So the first question is: Should we ever try to edit the genomes of human embryos that are destined to become children? I think the answer is no.

I agree with the scientists who say that it’s definitely not safe to do it now because we can’t predict what other things CRISPR will do to the rest of the genome. We know very little about the genome, and what impact taking out one or a series of base pairs — with CRISPR, you can take a series out — is going to do to the rest of the genome, and hence to the whole organism as it develops.

And the problem with germ-line genetic engineering at the level of the embryo —

— Making genetic changes that will be passed on forever —

Potentially, yes. First they will be passed on to this baby, and this baby will become an adult. And if this “engineered” baby has children, the new traits will be passed on to the next generation, and so on.

So an initial question — and scientists agree with this — is, how many generations do you need to prove that a particular method of genome editing is safe? I would guess most scientists would say, at least four or five. Well, we can do four or five generations in zebrafish or in rats or in fruit flies pretty quickly.. In humans, however, it’s going to take you probably 100 years. So, how many children would you want to follow, and their offspring, for 100 years before you are ready to conclude that editing the human genome is safe for children?

That strikes me as a question that we can’t answer. Because we cannot prove it safe without putting human children at terrible risk of harm, we can’t subject any human child to this experiment. That’s because children can’t consent, and their consent is necessary as a matter of ethics because there are good reasons to anticipate that something will go horribly wrong.

And more broadly, there are potential implications for the whole human race, if we start engineering evolution — ?

I would take the strong position that until we get some mechanism by which the human species can be represented, no one should be permitted to do any experiment that is potentially species-endangering, that could put the entire species at risk of serious damage or even extinction.

I think if genome editing ‘works’ and you can actually produce — and to simplify the discussiion I’ll use the old eugenics terms – “designer” babies that are better babies, smarter babies, stronger babies, babies that would be significantly different from the run-of-the-mill babies — then, I would argue, and some people think this is a little far out — that one of two things will happen:

Either we’ll be horrified at these new humans or super-humans or sub-humans and kill them preemptively before they kill us, or they will become so superior they’ll take over the world and either enslave or kill us.

In either event, we’ll have two types of humans — one of which will be seen as sub-human by the other one — and this will promote what I call “genetic genocide”, one group killing the other based on a perception that the other is subhuman or super-human. If there is any reasonable risk of this happening (1% over the next 3 centuries?) then I believe no one has the moral warrant to put the human species in such a risky position, in the position of creating potential species suicide.

So then we just shouldn’t do it…

Certainly not now. Ultimately, what this comes down to — and scientists understand this argument — is, who has the burden of proof? Do the people who want to use this technique have the burden of proof that it’s safe, or, more likely, not safe? Or do people who want to prevent the use of this technique on human embryos, on children, do they have the burden to prove that it’s dangerous in order to outlaw this use?

Right now, because we don’t have a lot of data, whoever has the burden of proof loses.
Proponents can’t prove it’s safe — they don’t know how to do that. And opponents can’t prove it’s dangerous (although from the Chinese experiments, it can be concluded that the techniques they used are dangerous). But mostly we’re currently in the same position we were in with human cloning: little data and lots of talk.

It does seem like, given how young and still imperfect this technology is, maybe these calls for prudence and caution may be a bit premature…

They may well be. It could turn out that none of this is going to work; it could be like cloning. We imagined, for example, an army of clones to be turned into workers or fighters, some pretty horrible scenarios, but mostly what people imagined was that cloning would be the entrance to germ-line genetic engineering. That was the real problem. It would make genetic engineering easier to do by creating multiple identical embryos to work with. Nobody really wanted to simply duplicate existing humans — they wanted to make a better human. Just as most parents want their children to have better lives than they have had; parents want a “better baby.”

The Chinese have a goal of being the worldwide leaders in genomics in the coming century — so it’s not clear to me, even if we have a ban or moratorium on genome editing, that some Chinese researcher, and the Chinese have already done the experiment on non-viable embryos, wouldn’t do it on viable embryos.

So then, even more, you need a world body to say, ‘You can’t do this.’

You do need a global governing or regulatory body — or at least, a world consensus. We actually already have 40 countries that have outlawed germ-line genetic engineering, legislation that was mostly passed in the context of the cloning debate.

What I argued during the cloning debate, and the argument has equal force in the genome editing debate, is that it is perfectly appropriate to use CRISPR to make medicine, but it should not be used to make babies. At least we should draw that line for now. I do believe you should be able to do research on embryos, but you shouldn’t be able to implant them in a uterus (real or artificial) and have them grow up into a baby, because that’s a child — and (as I’ve already said) you shouldn’t be doing research on children, certainly not at this point and maybe ever.

As a matter of ethics, you always do research first on someone who can consent to it for themselves, someone who can understand the risks and potential benefits and voluntarily agrees to undertake it. That’s never going to be the case for a child or human embryo. So we should never get them involved at all — or not until very late in the game.

The undeniably appealing thing is, though, mightn’t there be families with terrible genetic diseases who could eradicate those diseases by fixing their own genes?

The answer to that is yes, but there are many other ways to do it, such as through donor egg, donor sperm, and adoption.

True, but the other appealing aspect I see — and yes, this is far out and science fiction — is that given the record of humanity, tinkering with our gene pool to make us better might not be a bad thing. What if we could be smarter, less aggressive, less evil? I know that presupposes a lot of genetic knowledge we don’t have now, but what if it were possible, why not become better?

That begs the question of what’s better. And those characteristics — — love, honor, compassion, whatever you think of as good — to what extent are they mostly genetic, or are they mostly environmental?

It’s complicated. If nothing else, we’ve learned from the Human Genome Project in the last 20 years that life is really complicated. It’s not just one gene, one protein — genes influence each other in many different ways, ways that we’re barely beginning to understand.

The notion that you can use CRISPR to change one gene or part of a gene and that’s all it’s going to change in the genome — it’s not so simple. Even if you could find a gene — which you can’t — for happiness or joy, your children might get the joy gene and also the homicidal maniac gene. They may go together — you may have a good time killing people.

I certainly agree that humans are not at their pinnacle, and we’re not such a wonderful species. Half the world seems to be spending half its time killing each other. Can we do better than the humans we have now? Yes. Will we do it through genetics? I doubt it, any more than we’ve been able to do it through drugs.

There’s a school of thought that says if science can do it, it will do it. Given how surprisingly well CRISPR has worked so far, if we do get to the point where we can tweak the human genome very nicely, do you think we will?

This is my favorite thing that scientists say, and they say it without thinking twice: ‘You can’t stop us — the technology is not stoppable.’

‘The genie out of bottle — ‘

And they say that in the same breath that they say, ‘We’re going to learn how to control nature.’ And what they’re really saying is, ‘We think we can control nature but we know we can’t control ourselves.’ And that’s why people other than scientists have to say, ‘You’re right, you can’t control yourselves, that has to be someone else’s job. Because the science is now so powerful that its potentially dangerous – its products now include things like nuclear weapons, bacterial and viral weapons. Scientists don’t get to decide if or when these will ever be used on humans. ‘

Scientists can’t be trusted to control themselves, so we need to come up with an effective alternative structure.

Scientists have tried to self-regulate. At Asilomar [a 1975 conference that set guidelines for using recombinant DNA], the scientists decided the structure would be physical containment — a big laboratory, a biosafety 4 lab – and biological containment, whatever recombinant DNA creature escaped from the lab, it was engineered so that it couldn’t live outside the lab.

And that has helped…

Those safeguards are great, for bacteria and viruses. Not so great for people or animals… So we need new structures, new oversight, new transparency. The scientists can’t do it alone.

So there needs to be a new human species regulatory agency?

Yes, I’d call it the human species protection agency.

The HSPA!

I know it sounds strangely utopian (or dystopian) because the world can’ t cooperate on anything.

And I can imagine China would say no…

And China would say no, who are you to tell us what to do? So there’s got to be payoff for being involved in this.

You’d first have to want to create this agency, and right now the will’s not there. Historically it’s taken a tragedy for us to say, ‘Oh, we’ve got to regulate that.’ Something horrible has to happen.

I can imagine the image of a gene-engineered baby…

People did say that about cloning: If the first clone is born terribly deformed, or if something is horribly wrong with the child, that’s the end of human cloning.

The main challenge is to make sure any proposed experiment is public, so people get a chance to comment on it before it’s a fait accompli, before it’s finished.

Well, the CRISPR scientists themselves are saying they want public dialogue…

They are. If you want to be really cynical, you could say they are just doing that to throw us off. ‘Don’t worry, leave us alone, we got this, we’re going to have a conference and all the scientists will get together and decide.‘
No, you’re not going to decide! You don’t get to decide that. Scientists get to decide the ‘can‘ questions but not the ‘should‘ questions, at least not when they are using dangerous technologies.

So what’s your prediction? How will this play out?

Oh, somebody’s going to try to use this gene editing to make a better baby at some point. But hopefully we’ll get saved the same way we were saved on cloning, in that it’s just not going to work.

Embryos are much more complicated than most people give them credit for — you have to go through millions of cell divisions to make a baby. The chances of all of them coming out right after you’ve taken the genome and edited it — even edited it perfectly — are extraordinarily low. What are the odds that if you take a cell and make a radical change in its DNA composition, that things either stay the same or get better? Not high.

That’s in the near future. In the far future, no one can predict 250 ahead, or even 25 years ahead….

Categories: Health Care

The Gray Areas Of Assisted Suicide

Kaiser Health News - Thu, 05/21/2015 - 4:30pm

SAN FRANCISCO — Physician-assisted suicide is illegal in all but five states. But that doesn’t mean it doesn’t happen in the rest. Sick patients sometimes ask for help in hastening their deaths, and some doctors will hint, vaguely, how to do it.

This leads to bizarre, veiled conversations between medical professionals and overwhelmed families. Doctors and nurses want to help but also want to avoid prosecution, so they speak carefully, parsing their words. Family members, in the midst of one of the most confusing and emotional times of their lives, are left to interpret euphemisms.

When J.D. Falk was dying of stomach cancer in 2011, his wife says doctors would only talk about death in euphemisms. (Photo: courtesy of Hope Arnold)

That’s what still frustrates Hope Arnold. She says throughout the 10 months her husband J.D. Falk was being treated for stomach cancer in 2011, no one would talk straight with them.

“All the nurses, all the doctors,” says Arnold. “everybody we ever interacted with, no one said, ‘You’re dying.’”

Until finally, one doctor did. And that’s when Falk, who was just 35, started to plan. He summoned his extended family. And Hope made arrangements for him to come home on hospice.

‘I Couldn’t Ask Anybody’

The day her husband was discharged from the hospital, Arnold was dropping off some paperwork when she bumped into one of his doctors.

“He hugged me and asked me how I was holding up,” she says. “And then he handed me a bottle of liquid morphine. He said, ‘You might need it.’ ”

Arnold says she handed the bottle back. She told the doctor the hospice was going to bring a machine that would administer Falk’s pain medication automatically.

“And he looked at me,” she says, “and he held my gaze for a second. And he put it back in my hand and he said, ‘You might need it.’

She slipped the vial into her purse.

Hope and J.D. Falk, on their wedding day. (Photo courtesy of Kelly Dunsford)

“When I got home, it hit me like a ton of bricks,” Arnold remembers. “And I said to J.D., ‘I think he may have given this to me so I can give you an overdose.’ And he said, ‘Maybe.’ And then we didn’t talk about it anymore.”

Over the next couple days, Falk deteriorated quickly. Arnold says the hospice nurse offered another euphemism: “He said, ‘He’s showing signs of imminence.’ ”

Arnold worried that Falk was in a lot of pain. But she couldn’t tell. She was afraid that if she asked, it would betray the thoughts she was having about that extra vial of morphine.

“I couldn’t ask the nurse that,” Arnold says. “I couldn’t ask anybody anything.”

If Arnold could have asked Stanford medical ethicist David Magnus, he could have explained what assisted suicide is – and what it isn’t. It is legal for people to take or give large doses of narcotics to relieve pain, even if a known side-effect is that it may hasten death.

READ OTHER STORIES ON THIS TOPIC

Facing Death But Fighting The Aid-In-Dying Movement

Hoping To Live, These Doctors Want A Choice In How They Die

 

“The difference really has to do with intent,” Magnus says. “And that’s a tricky thing because it has to do with what’s going on in the mind.”

In the end, Arnold didn’t do anything with the extra vial of morphine, and her husband died within days of coming home on hospice.

“J.D. never told me, ‘I do want you to give me too much morphine,’ ” she says. “Actually, I don’t know whether or not he wanted that. That’s not the point. The point was nobody could talk about it.”

‘Winks And Nods’

People don’t talk about it, but it happens. Just over 3 percent of U.S. doctors said they have written a prescription for life-ending medication, according to an anonymous survey published in the New England Journal of Medicine in 1998. Almost 5 percent of doctors reported giving a patient a lethal injection.

Other studies suggest oncologists, and doctors on the West Coast, are more likely to be asked for life-ending medication, or euthanasia, in which the doctor administers the lethal dose.

“Those practices are undercover. They are covert,” says Barbara Coombs Lee, president of Compassion & Choices, an advocacy group. “To the degree that patients are part of the decision-making, it is by winks and nods.”

Coombs Lee’s organization helped tell the story of Brittany Maynard, a 29-year-old woman who moved from California to Oregon to be able to end her life legally after she was diagnosed with a brain tumor. Now the organization is backing legislation in California to make it legal for doctors to prescribe lethal medication to terminally ill patients who request it.

This story is part of a partnership that includes KQED, NPR and Kaiser Health News. It can be republished for free. (details)

Coombs Lee’s group guides dying patients on current law.

“We talk with people about how they might broach the subject with their physicians,” she says, “and quite frankly, how to play the wink-and-nod game in a way that doesn’t jeopardize their physician.”

It’s a game one San Francisco woman is all too familiar with. (KHN and KQED are withholding her name at her request to protect her privacy.) She lived in San Francisco during the 1980s and watched one friend after another die of AIDS.

“The guys would have fungus everywhere,” she recounts. “Horrible diarrheas, emaciation. It looked like concentration camp pictures.”

A lot of her friends begged for lethal drugs to end their suffering, and she and the other caregivers figured out which doctors were willing to help. The caregivers coached each other on how to speak to the doctors in code.

“We would tell each other, ‘This is the doctor,’” she says. “‘They’re going to tell you how much is too much to give, and then they’re going to give you too much.’”

Though she witnessed many deaths hastened in this way, she says she never administered the drugs herself. Her time would come 20 years later when her husband was dying of throat cancer.

Some of his symptoms were brutal.

“It was like a horror movie,” she says, recalling the tumors all over his neck. They would fill with blood, she says, and sometimes burst.

“There’d be blood on the walls, on the mirror, everywhere,” she recounts, “And he’d be panicking.”

They were warned his death might be ugly. He might choke. He might have a seizure. More than anything, she says, he was afraid of dying in a hospital, hooked up to machines, powerless.

“He made me swear not to let anybody hospitalize him. He made me swear not to let his family swoop in and take him away.”

At one point, he threatened to shoot himself to avoid that. A nurse dropped hints that there was a different way.

“I remember being told, here’s how much pain meds you can give,” she says, “but beyond this, he’ll probably stop breathing.”

Her husband made it clear to her that this was the way he wanted to go. Several times, she says, he reviewed the instructions with her.

Months later, he slipped into a coma. When the nurse said he looked like he was a day, maybe hours, away from dying, it seemed like another hint.

“And I remember standing there with syringes in my hand. Just standing there, with my hands shaking,” she says. She remembers thinking, “Okay, what goes with what?’ And I was all alone. And that was about the most alone I’ve ever felt. That I couldn’t tell anybody else.”

She injected the drugs. Then she crawled into bed with him and held him and talked to him for the next six hours.

“And he literally died in my arms. I was holding him when he stopped breathing. And it was really peaceful. He just sort of drifted away.”

For years, she had nightmares about holding the syringes, but today she is confident that she did the right thing. Her husband’s death was calm and peaceful and exactly what he’d asked for. But she resents that she was the one who had to do it, that she had no help and no real guidance from a medical professional.

“I don’t regret it, but I wouldn’t wish it on anybody else. It’s not fair. It’s not right,” she says. “It’s not like choosing to die doesn’t happen. We just make it be sneaky and we put it on the wrong people.”

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

Categories: Health Care

Why The Primary Care Problem (Lower Status, Pay) Matters

CommonHealth (WBUR) - Thu, 05/21/2015 - 11:08am

By Jeff Levin-Scherz, M.D., M.B.A.
Guest Contributor

Medscape just published its annual physician compensation survey. The survey includes almost 20,000 physicians and is given online, so it’s probably not entirely representative.

Also, the survey results are self-reported, and physicians generally under-report their income. But the comparative reported income among specialties is informative. This survey is among the largest available, and does not require an expensive paid subscription.

(Courtesy of Medscape)

The results are no surprise. But they’re worth noting: Specialists make 45 percent more than primary care physicians, and orthopedists make 224 percent more than pediatricians.

The majority of respondent physicians were employed, and men consistently make more than women in the same specialty. Women have the largest representation in specialties with the lowest incomes.

Physician income was a bit lower in the Northeast but higher in the Northwest. Massachusetts’ physicians report that their income is 46th in the nation.

Internists are the least satisfied in their job (47 percent), and the least likely to choose their specialty if they could choose again (25 percent), but high in the rankings of specialties where the respondent would choose medicine again (71 percent).

(Courtesy of Medscape)

Family physicians were only slightly more likely to choose the same specialty again as internists (31 percent), yet they were the most likely to say they would choose to go into medicine again (74 percent).

Pediatrician income is among the lowest of all specialties, yet they are twice as likely to say that they would choose the same specialty. Internists and family physicians would go into medicine again, but they would go into sub-specialties, and not do general primary care. The high cost of health care in the U.S. is in part due not to a shortage of primary care physicians, but also due to a surplus of specialists.

Why does all this matter?

The American College of Physicians reported on the impending “collapse” of primary care in 2006. There have been efforts to change this situation since, including “patient centered medical homes,” and short-term enhanced Medicaid primary care fee schedules built into the Affordable Care Act.

The continued relatively lower pay of primary care physicians and the lack of job satisfaction of general internists and family physicians means that our historic way of delivering primary care is about to change. Much future primary care is likely to be delivered by nurse practitioners or physician assistants, and some office-based primary care will be supplanted by telehealth or by apps with underlying algorithms.

The Medscape survey suggests that we will continue to face serious challenges to continue to deliver the highly personalized primary care which many of us value, and the highly coordinated care needed by the frail elderly and those with serious chronic illnesses.

(Courtesy of Medscape)

The problem is about money, of course, but also about perception: The average pediatrician in this survey was paid $189,000 per year, the lowest amount of any of the surveyed specialties. Still, this is in the top 6 percent of all earners in the U.S.

The primary care perception of being underpaid is related to the high earnings of specialists, and this will only change if there are large decreases in specialist income.

Modest increases in primary care income just won’t change this perception, and huge increases in primary care income would be hard to afford.

Recent efforts to train more physicians are not likely to lead to more practicing primary care physicians unless we are more successful at improving the lifestyle and status of those who practice primary care. We’ll just likely have more specialists, and our costs of health care will continue to be the highest in the world.

Jeff Levin-Scherz, MD, MBA is an assistant professor at Harvard Medical School and Harvard School of Public Health. He blogs at Managing Healthcare Costs, where an earlier version of this piece was published.

Categories: Health Care

Finalists Announced for 2015 Harper Lee Prize for Legal Fiction

In Custodia Legis - Thu, 05/21/2015 - 10:00am

The University of Alabama and the ABA Journal announced the finalists for the 2015 Harper Lee Prize for Legal Fiction late last week. This year’s finalists are: Terminal City by Linda Fairstein, My Sister’s Grave by Robert Dugoni, and The Secret of Magic by Deborah Johnson.

Authorized by Ms. Lee, the annual award for legal fiction is given to a book-length fictional work that “best exemplifies the role of lawyers in society, and their power to effect change.” Past winners include The Confession by John Grisham, The Fifth Witness by Michael Connelly, Havana Requiem by Paul Goldstein, and Sycamore Row by John Grisham.

The 2015 prize will be awarded in Washington, D.C., on Sept. 3, in conjunction with the Library of Congress National Book Festival. The winner will receive a signed copy of To Kill a Mockingbird.

You can help select this year’s winner by voting on the ABA Journal‘s website. The public vote will be weighted and count as the fifth vote along with those from the 2015 Selection Committee, which includes Roy Blount, Jr., author and humorist; Wayne Flynt, author and Alabama historian; Mary McDonagh Murphy, independent film and television writer and producer; and Michele Norris, NPR host and special correspondent

Voting ends on June 3, 2015. Let us know who you voted for in the comments below and stay tuned for the announcement of the winner. Visit www.HarperLeePrize.com for more information.

Categories: Research & Litigation

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