Friday, October 19, 2012

Are Doctors Too Wary of Drug Companies? -

Not long ago, I asked a colleague for advice on a patient. He offered up a couple of treatment options, then stopped to show me a new medical app on his electronic tablet. With a few swipes of his finger, he summoned a compilation of research articles, synopses and even entire textbooks that, printed and bound, would have filled shelves in a library.
"But do you know what the best part is?" he asked with a twinkle in his eye. I thought of the exhaustive reference material and the seemingly endless scroll of diagnoses that were all so easy to access on the small screen balanced on his knees.
"The best part is that none of this is sponsored by Pharma!" he said with a broad smile. "There's no bias."
My colleague is not the only doctor who feels that way, according to a recent study published in The New England Journal of Medicine.
For years, most doctors have had a predictable, if not close, relationship with the pharmaceutical industry. Companies handed out office tchotchkes, paid for staff lunches and distributed drug samples for patients. More significantly, drug companies were important sources of biomedical research money, particularly during periods when federal support wavered. It was understood that the companies providing funding would leave the researchers alone to design and conduct the study, analyze the data and write up the results.
That understanding began to fray about a decade ago when doctors, and patients, began to realize that drug companies were becoming too involved with the research they were supporting. For example, one major pharmaceutical firm manipulated data and underestimated the risk of heart attacks, strokes and deaths in a large study of a drug for arthritis. The drug was eventually withdrawn from the market, but not before 80 million patients had used it, with annual sales topping $2.5 billion.
The case highlighted the dangers of industry sponsorship of research into new drugs, and the public became eager to expose any potential conflict of interest, particularly for doctors. Within a few years, a new standard of transparency in medicine emerged. Brightly labeled drug company pens became an embarrassment; lunches on the drug company tab and sponsored conferences turned suspect; and editors at numerous medical journals published lengthy screeds detailing their disclosure requirements.
The new skepticism and transparency were no doubt good for patients and doctors, but this recent study reveals that in our zeal to single out the pharmaceutical industry's biases, we may have become blind to our own.
The researchers created several hypothetical drug studies, then asked a group of practicing physicians to rate the "studies" and the likelihood they would prescribe the new "drug." The researchers purposefully varied the quality of the studies and the disclosures - some of the made-up studies disclosed that they had received pharmaceutical company funding, others said they'd received support from the National Institutes of Health, and the rest listed no funding disclosures at all.
Most of the doctors were able to assess the quality of the research pretty accurately. After reading the less rigorous studies, the ones that weren't designed, conducted or analyzed well, the doctors were hesitant to prescribe the new drugs under study; seeing the more rigorous studies, they were more willing to do so.
But the researchers also found that the doctors were also unduly swayed by any mention of industry funding. Regardless of the quality, if a study was supported by a pharmaceutical company, doctors were less willing to consider prescribing the studied drug and less likely to assess the quality of the research with accuracy.
"Some amount of skepticism is warranted," said Dr. Aaron S. Kesselheim, lead author of the study and an assistant professor of medicine in the division of pharmacoepidemiology and pharmacoeconomics at the Brigham and Women's Hospital in Boston. "But ultimately it should be the quality of the study and the impact of the results that determine your confidence about using a new drug, not who was funding it."
Being overly skeptical has serious implications for patient care. The pharmaceutical industry, along with medical device and biotechnology firms, continues to finance a majority of current research. In 2007, for example, industry was responsible for nearly 60 percent of the more than $100 billion spent on research. Much industry-supported research focuses on the side effects of new drugs. By writing off such research, doctors risk overlooking findings that may have important treatment implications for their patients, like a new cholesterol-lowering drug that is found to have less of an effect on energy and blood sugar levels than other similar medications.
Dr. Kesselheim and his collaborators believe what is needed in biomedical research is even greater transparency. Such openness would include more independent third-party statistical reviews to ensure that data is not being manipulated or misleading and wider use of public Web sites like, regardless of the source of funding. lists study details like objectives, design and data gathered, providing doctors and patients alike with a way to confirm that no data is being selectively reported or distorted. But participation on the site is voluntary, and pharmaceutical, medical device and biomedical companies are often hesitant to share what they consider proprietary data, choosing instead to list only selective details, or no information at all.
Until full transparency is achieved and such details are available to all on the Web or for independent statistical reviews, Dr. Kesselheim and his collaborators suggest that both doctors and patients remain alert to potential biases - Big Pharma's, and also their own.
"Excessive skepticism," Dr. Kesselheim observed, "is as much a bad thing as naïveté."

Thursday, October 18, 2012

My son is schizophrenic. The ‘reforms’ that I worked for have worsened his life. - The Washington Post

If you were to encounter my son, Tim, a tall, gaunt man in ragged clothes, on a San Francisco street, you might step away from him. His clothes, his dark unshaven face and his wild curly hair stamp him as the stereotype of the chronically mentally ill street person.

People are afraid of what they see when they glance at Tim. Policymakers pass ordinances to keep people who look like him at arm's length. But when you look just a little more closely, what you find is a young man with a sly smile, quick wit and an inquisitive mind who — when he's healthy — bears a striking resemblance to the youthful Muhammad Ali.

Tim is homeless. But when he was a toddler, my colleagues in the Connecticut state legislature couldn't get enough of cuddling him. Yet it's the policies of my generation of policymakers that put that formerly adorable toddler — now a troubled 6-foot-5 adult — on the street. And unless something changes, the policies of today's generation of policymakers will keep him there.

How it went wrong

I was 25 years old in 1978 when I entered the Connecticut House. I had a seat on the Appropriations Committee and, as the person with the least seniority, was assigned last to my subcommittees. "You're going to be on the Health subcommittee," the committee chairs informed me. "But I don't want to be on Health," I complained. "Neither does anyone else," they said. Six weeks into my legislative career, I was the legislature's reluctant new expert on mental health.

The 1980s was the decade when many of the state's large mental hospitals were emptied. After years of neglect, the hospitals' programs and buildings were in decay. In my new legislative role, I jumped at the opportunity to move people out of "those places." I initiated funding for community mental health and substance abuse treatment programs for adults, returned young people from institution-based "special school districts" to schools in their home towns and provided for care coordinators to help manage the transition of people back into the community.

Critical misjudgements

But we legislators in Connecticut and many other states made a series of critical misjudgments.

First, we didn't understand how poorly prepared the public schools were to educate children with serious mental illnesses.

Second, we didn't adequately fund community agencies to meet new demands for community mental health services — ultimately forcing our county jails to fill the void.

And third, we didn't realize how important it would be to create collaborations among educators, primary-care clinicians, mental-health professionals, social-services providers, even members of the criminal justice system, to give people with serious mental illnesses a reasonable chance of living successfully in the community.

During the 25 years since, I've experienced firsthand the devastating consequences of these mistakes.

Every year, one in every five children and one in every four adults has a diagnosable mental illness. A quarter of all mental illnesses are considered serious. Until Tim came into my life in 1985, I had no experience with mental illness in my immediate family.

Problems in kindergarten

As with many other chronic diseases, the symptoms of mental illness often sneak up slowly. Beginning in kindergarten, Tim had persistent problems making friends, keeping his focus and following directions. He was usually gentle. But he also had a scarily short fuse. He slept poorly at night and reported that he "got yelled at a lot" in school.

I can't point to a single time when I first realized Tim's problems were not just normal. The day he lay down in the middle of the road — just to see if a car would run him over — comes to mind, however.

Tim's mental illness turned out to be a serious one — schizophrenia — but the disease wasn't diagnosed until he was 17, after he'd been sick for more than a decade. That's pretty much the norm for serious mental illness: Typically, 10 years pass from the time people show symptoms of mental illness to the time they receive appropriate treatment.

When Tim entered elementary school, it took us three years to convince school officials that his symptoms weren't caused by problems with Tim's having been adopted, his racial identity (we're white, he's black) or our parenting. That by then we had three children younger than Tim who also were adopted transracially and were thriving helped make our case. The school's evaluations suggested he had what was then called attention deficit disorder and some learning disabilities. He was admitted into special education, and the school drew up a mandated individualized education plan (IEP) for him. It focused mostly on helping with his organizational skills and, at the school's insistence, his "self-esteem."

Tim's mental illness wasn't being addressed, though. And it turned out that Tim probably didn't really have attention deficit disorder. Soon his symptoms grew worse. On many nights, he wandered the house instead of sleeping. One day, after his 5-year-old brother had broken one of Tim's prized toys, Tim pulled a knife from a kitchen drawer to attack him. It was a few weeks after that, on a cold winter night, that he suddenly raced out of the house wearing nothing but his underwear, strapped on a pair of in-line skates and went skating down the middle of a busy state highway. He began to report that he was hearing voices.

Tim was finally hospitalized as he turned 11, and he received a diagnosis of a sleep disorder, depression and, after a year of counseling, post-traumatic stress disorder.

Tim's IEP clearly needed to be revised after he received his new diagnoses. But his principal told me repeatedly that "he just needs to follow the rules," as if Tim could will away his illness. In a due-process hearing we then demanded, Tim's special education teacher declared that Tim's biggest problem was "overprotective parents."

Blaming people with mental illness — or their families — for the mental illness isn't new. And it carries a cost. The cost to Tim: Beginning in sixth grade, he would never complete another full year of school on schedule.

The fragmented years

What followed were many years during which one public school after another knew it couldn't educate my son but had nothing to offer, holding him back in one case and bumping him ahead in another.

Trouble seemed to find him. Self-medicating with marijuana, Tim's drug of choice for lowering the volume of the voices in his head, got him suspended from the first high school he attended — a public, vocational-technical school in Middletown, Conn. — and placed on court-ordered probation. Fighting with another student got him expelled from the next one, a private boarding school that the juvenile court and school system had sent him to in Idaho.

Back in Connecticut after being arrested for trespassing, he was placed in a teen mental-health inpatient program by the juvenile court. Fighting with another student also got him expelled from the fourth school, a small, private school that specialized in educating teenagers who had had trouble succeeding in regular high schools. A public high school in Austin, where I'd moved after his mother and I divorced, then admitted him because the law required it to, but only for the last six weeks of the school year. It provided no IEP and essentially lost track of him.

During a span of 30 months, those five schools were Tim's "freshman year." Had educators actively sought input from outside mental health professionals, they might have seen that Tim's illness was beginning to overwhelm him: "I'm in a tired, tired state all day," he told one counselor. "I worry about stuff a lot. I don't like having friends; it's hard to find people who are like me. When I'm really, really sad, I cry. When I'm a little sad, I sit and stare."

Insurer made matters worse

On more than one occasion, my insurance company also contributed to Tim's problems. Here are two examples among many:

●When Tim was 15 and needed to be hospitalized while in Idaho, my insurer forced his discharge to a non-secure residential drug rehab program in Connecticut — even though Tim wasn't using drugs at the time. He ran away 72 hours later. That led to his arrest for trespassing and a six-week stay in juvenile detention.

●When Tim was 17, he was hospitalized while visiting his mother in Connecticut. My insurer refused to authorize more than a few days of inpatient treatment, and so the hospital discharged him before he was stable. Soon I found him camping outside my home in his underwear in near-freezing temperatures, and I had to hospitalize him again. Afterward, my insurer said that because of his history, Tim now was eligible for enhanced case-management services. It also said that he'd exhausted his lifetime benefits.

When Tim turned 18, he had no high school diploma, no job prospects and a debilitating mental illness. Legally an adult, he also decided he wanted to live on his own. With a brand-new diagnosis of schizophrenia, Tim was eligible for a variety of support services, but he now told us he didn't want them. He was tired of counseling and he didn't like the side effects of the antipsychotic drugs prescribed for him. He also didn't want a caseworker checking in on him.

He got his wish. None of the overextended caseworkers assigned to him had time to devote to an unwilling client such as Tim.

I found him supported housing three times in three years, but he was evicted each time for various infractions. When Tim finally found a landlord willing to rent him a place on his own, the mental health agency's housing personnel gave him a bad reference. That kept Tim living on the streets, and eventually he drifted into homelessness and incarceration. When he was in jail, with its regular routines and meals, Tim usually stabilized. But when he was released — because he went back to the streets instead of to a service provider — he destabilized right away, which in his case meant becoming highly agitated and paranoid, and hearing voices.

In 2008, at age 23, Tim moved to San Francisco and has lived mostly on the streets there ever since.

The last time I visited him, he was holed up for a while in a small room a caseworker had found him in a Mission District rooming house. His only furniture was a bare mattress on the floor; a rat and flies were his companions. Sadly, he seemed content.

This is the mental health delivery system that I helped build.

What I realize now

More than one educator has told me that I shouldn't blame the schools: Their purpose is to educate children, not to treat them. I understand this. But I also learned from personal experience that ignoring a child's special needs makes meaningless the special-education concepts of "appropriate" and "least restrictive" education that are embodied in the laws we passed.

These terminologies — and the realities they represent — were things that policymakers thought about too narrowly. The word "disability," for instance, should have covered Tim and children like him. But as a friend who worked a generation ago on drafting the regulations for the federal government's Individuals with Disabilities Education Act told me, "Paul, we were thinking of kids in wheelchairs."

It's no wonder that children like Tim graduate from one kind of cell to another when they grow up. On the basis solely of the numbers of people with mental illness who are incarcerated in them, the three largest "mental health facilities" in the nation are Riker's Island in New York, the Cook County Jail in Illinois and the Los Angeles County Jail. The two most stable addresses in Tim's adult life have been the Travis County Correctional Complex in Del Valle, Tex., and the San Francisco County Jail.

If I were a legislator today, I'd mandate — and provide funding to ensure — that every teacher receive training in recognizing symptoms of mental illnesses. I'd see that pediatricians are trained to make screening for mental health concerns a regular part of well-child exams. I'd require school administrators to incorporate recommendations from pediatricians and mental health professionals into students' IEPs.

I'd put much more money into community mental health services. I'd integrate how services are delivered by funding collaborative community mental health programs and have them run by mental health professionals. I'd include services for chronically homeless people under this collaborative umbrella.

At the same time, to clear our county jails of people with mental illnesses, I'd get rid of laws targeting homeless people, such as those against loitering or sitting on a sidewalk. And I'd make sure that there was supportive short-term and long-term community housing and treatment for everyone needing them. Both were promised almost 50 years ago in the federal Community Mental Health Centers Act of 1964 — promises that were broken when it was repealed in 1981 and replaced by a block grant to states.

Mental illnesses cost as much as cancers to treat each year, and the National Institute for Mental Health notes that serious mental illnesses can reduce life expectancy by more than 25 years. That reduction is almost twice the 13 years of life lost, on average, to all cancers combined. When Tim needed hospitalization, an insurer sent him to drug rehab. Imagine the outcry if the insurer had tried to send a smoker with lung cancer who needed hospitalization to drug rehab.

Perhaps, even if Tim had gotten earlier, more effective and better integrated care, he still would have become homeless. But I don't believe that. Tim is where he is today because of a host of public policy decisions we've made in this country. It took a nation to get Tim there. And it will take a national commitment to get him — and others like him — back.

A former legislator and mayor, Gionfriddo has worked for more than 30 years in the fields of health and mental health policy. He is author of the weekly blog Our Health Policy Matters. This article was excerpted from the Narrative Matters section of the journal Health Affairs and can be read in full at

Vaccines at the pharmacy: States should let drugstores give shots - Slate Magazine

If you're looking for a flu shot, you can walk into a Walgreens or CVS or Rite Aid in any state and get one from a pharmacist. For the vaccine against the blistering skin condition shingles, however, you can go to a drugstore in San Francisco but not in Sioux Falls, S.D. And for the whooping cough vaccine, your options include Nashville, Tenn., but not North Conway, N.H.;Brookline, Mass., but not Brooklyn, N.Y.; Gainesville, Ga., but not Gainesville, Fla. Why the geographic hodgepodge?
Vaccines have long been the province of doctors, and as the role of pharmacists has expanded in the past few years, many state medical societies have fought the trend. They argue that moving shots to pharmacies disrupts the doctor-patient relationship and complicates record keeping. Hence the odd compromises: In New York state, for instance, the rules essentially tell pharmacists: influenza? Yes. Whooping cough? No.
It's time to end these silly inconsistencies. Pharmacists have played a key role in providing flu shots and are increasingly doing the same with other vaccines, making them more accessible and convenient. This is critical at a moment when whooping cough cases are surging and adult immunization rates are dismally low. Not everyone has a primary care doctor or will go to one to get their shots. Nor do all docs even offer vaccines. Pharmacists can and should be allowed to help—with all CDC-recommended adult vaccines in every state.
The push to turn pharmacists into vaccinators dates back at least to the mid-1990s. Donna Shalala, then secretary of Health and Human Services, saw it as a way to improve the country's immunization rates and pressed the American Pharmacists' Association to develop a plan, according to Mitch Rothholz, chief strategy officer for that organization. Some states already had laws on the books that allowed pharmacists to immunize people, even if these provisions were rarely used. The APhA developed a rigorous training program for pharmacists. State pharmacy associations also began to lobby their legislatures. But for years it was slow going.
And doctors' groups pushed back hard. In New York, for instance, a 2008 bill was written to authorize pharmacists to give all CDC-recommended adult vaccines, but after much wrangling, everything but flu was axed. (Even then, the Medical Society of the State of New York opposed the law.) This year, state legislators tried again, passing a law, taking effect this week, that allows New York pharmacists to administer the shingles vaccine to people who have a prescription from a doctor or nurse practitioner. But pharmacists still can't offer the whooping cough vaccine.
"I don't understand the resistance," Amy Paulin, a Democratic assembly member from Westchester who wrote both bills, told me. The answer from the medical societies is that letting pharmacists give vaccines makes health care more fractured. "Many primary care providers rely on the flu shot as a way to get patients in" for other services, like blood pressure screenings or colonoscopy reminders, Robert Hughes, president of the Medical Society of the State of New York, told me. "We're looking at it in terms of the overall quality of care." Doctors' groups also fret that if people can get their shots at pharmacies, it will be harder to keep track of who's gotten what.
But these concerns pale in comparison to the risk that without the pharmacy, a lot of people may not get their shots at all. In a perfect world, everyone would have a primary care doctor who offered long-term, holistic care. Yet some people don't have health insurance (in case you hadn't heard). And some just don't go to the doctor unless they're in dire need. "Ask any internist or family medicine doctor how many healthy men between the ages of 21 and 50 they generally see," said Elizabeth Rosenblum, a family medicine doctor at UCSD. "There is theory and there is practice." Not all doctors are keen on providing vaccines either, which require providers to make an upfront investment and then deal with storage, handling, and other logistical issues. Unlike pediatricians, who handle high vaccine volume, some adult doctors may decide that it just isn't worth it.
Pharmacies, meanwhile, operate at a high level of professionalism. Many keep their own records, give patients written receipts and sometimes even notify patients' doctors. Many states also require all vax providers to enter shots in a state registry. Yes, some people may get an extra dose by accident. But even that may not be so bad: Duplication is unlikely to cause side effects other than redness, swelling, or a passing low-grade fever, said Rosenblum.
Pharmacists are already crucial to the annual flu shot push. During the swine flu surge in 2009, the CDC recommended the pandemic vaccine for everyone 6 months of age or older. The following year, for the first time, they also recommended the seasonal flu shot to the same broad range of people. This vastly boosted demand, and pharmacists were increasingly allowed to step in. In 2006-07 they administered roughly 7 percent of adult flu shots. By last year that number was over 18 percent. Carolyn Bridges, associate director for Adult Immunizations at the CDC, says she's not sure the country could have kept up without the help of the pharmacists.
There's no shortage of work to be done on other vaccines either. A happy story: In California during the 2010 whooping cough outbreak that killed 10 babies, pharmacists and pharmacy students at UCSD offered free shots to all household contacts of newborns. They made it easy, with Saturday and evening hours in a little-used waiting room on the postpartum floor. And fully 84 percent of the newborns' family members received Tdap vaccination before the baby was discharged, according to Rosenblum. Since newborns can't receive the whooping cough vaccine themselves, this is one of the best ways to protect them.
Yet across the country, only 8.2 percent of adults got a Tdap shot, according to a survey in 2010. Rates are also disturbingly low for shingles (14.4 percent of adults age 60 and older in 2010) and for the pneumococcal vaccine, which protects against a bacteria that is a common cause of pneumonia and other infections. And so we need more states to pull pharmacists into the vaccination loop. Signs of progress: Earlier this year, Florida passed a law allowing pharmacists to administer vaccines protecting against shingles and pneumonia, Illinois allowed them to give the vaccine against whooping cough to children age 10 and older, and Massachusetts permitted them to give all CDC-recommended adult vaccines. Other states, including Washington, Connecticut, Colorado, Minnesota, and Kentucky, already do the same. But until we can stop pathogens from crossing state lines, they all need to get onboard.

Wednesday, October 17, 2012

Where Will The Next Pandemic Come From? And How Can We Stop It? | Popular Science

In June 2008, a Dutch woman named Astrid Joosten left the Netherlands with her husband for an adventure vacation in Uganda. It wasn't their first trip to Africa, but it would be more consequential than the others.
At home in Noord-Brabant, Joosten, 41, worked as a business analyst for an electrical company. Both she and her spouse, a financial manager, enjoyed escaping Europe on annual getaways. In 2002, they had flown to Johannesburg and, stepping off the airplane, felt love for Africa at first sight. On later trips they visited Mozambique, Zambia, and Mali. The journey to Uganda in 2008, booked through an adventure-travel outfitter, would allow them to see mountain gorillas in the southwestern highlands of the country as well as some other wildlife and cultures. They worked their way south toward Bwindi Impenetrable Forest, where the gorillas reside. On one day, the operators offered a side trip, an option, to a place called the Maramagambo Forest, where the chief attraction was a site known as Python Cave. African rock pythons lived there, languid and content, grown large on a diet of bats.
Joosten's husband, later her widower, is a fair-skinned man named Jaap Taal, a calm fellow with a shaved head and dark, roundish glasses. Most of the other travelers didn't fancy this Python Cave offering, he told me later. "But Astrid and I always said, 'Maybe you come here only once in your life, and you have to do everything you can.' " They rode to Maramagambo Forest and then walked a mile or so, gradually ascending, to a small pond. Nearby, half-concealed by moss and other greenery, like a crocodile's eye barely surfaced, was a low, dark opening. Joosten and Taal, with their guide and one other client, climbed down into the cave.
The footing was bad: rocky, uneven, and slick. The smell was bad too: fruity and sour. Think of a dreary barroom, closed and empty, with beer on the floor at three a.m. The cave seemed to have been carved by a creek, or at least to have channeled its waters, and part of the overhead rock had collapsed, leaving a floor of boulders and coarse rubble, a moonscape, coated with guano like a heavy layer of vanilla icing. It served as a major roosting site for the Egyptian fruit bat (Rousettus aegyptiacus), a crow-size chiropteran that's widespread and relatively abundant in Africa and the Middle East. The cave's ceiling was thick with them—many thousands, agitated and chittering at the presence of human intruders, shifting position, some dropping free to fly and then settling again. Joosten and Taal kept their heads low and watched their step, trying not to slip, ready to put a hand down if needed. "I think that's how Astrid got infected," Taal told me. "I think she put her hand on a piece of rock, which contained droppings of a bat, which are infected. And so she had it on her hand." Maybe she touched her face an hour later, or put a piece of candy in her mouth, "and that's how I think the infection got in her."
No one had warned Joosten and Taal about the potential hazards of an African bat cave. They knew nothing of a virus called Marburg (though they had heard of Ebola). They only stayed in the cave about 10 minutes. They saw a python, large and torpid. Then they left, continued their Uganda vacation, visited the mountain gorillas, took a boat trip, and flew back to Amsterdam. Thirteen days after the cave visit, home in Noord-Brabant, Joosten fell sick.
At first it seemed no worse than the flu. Then her temperature climbed higher and higher. After a few days, she began suffering organ failure. Her doctors, knowing of her recent time in Africa, suspected Lassa virus or maybe Marburg. "Marburg," said Taal, "what's that?" Joosten's brother looked it up on Wikipedia and told him: "Marburg virus: It kills, could be big trouble." In fact, it's a filovirus, the closest relative to the ebolaviruses (of which there are five species, including the most infamous, Ebola). Marburg was first discovered in 1967, when a group of African monkeys, imported to Marburg an der Lahn, in western Germany, for medical research uses, passed a nasty new virus to laboratory workers. Five people died. In the decades since, it has also struck hundreds of Africans, with a case fatality rate of up to 90 percent.
The doctors moved Joosten to a hospital in Leiden, where she could get better care and be isolated from other patients. There, she developed a rash and conjunctivitis; she hemorrhaged. She was put into an induced coma, a move dictated by the need to dose her more aggressively with antiviral medicine. Before she lost consciousness, though not long before, Taal went back into the isolation room, kissed his wife, and said to her, "Well, we'll see you in a few days." Blood samples, sent to a lab in Hamburg, confirmed the diagnosis: Marburg. She worsened. As her organs shut down, she lacked for oxygen to the brain, she suffered cerebral edema, and before long Joosten was declared brain-dead. "They kept her alive for a few more hours, until the family arrived," Taal told me. "Then they pulled the plug out, and she died within a few minutes."
More ...

Tuesday, October 16, 2012

The Doctor Can See You Now. Really, Right Now. -

Often the worst part of a visit to the doctor isn't the awkward hospital gown, needle sticks or embarrassing physical exams — it's the drawn-out wait, camped out in the reception room in the company of sick patients and old magazines.

During a particularly long wait to see his dermatologist, Parker Oks, 18, thought there had to be a better way.

"They know approximately how long an appointment will take," said Mr. Oks, a freshman at Boston University. "But the problem is that they don't know how long it will actually take."

That realization led Mr. Oks to create Appointment Status, a Web site devoted to improving appointment efficiency and providing patients with information to avoid long waits. Working with three teenagers from Staten Island Technical High School, where he had gone, Mr. Oks aims to make it easier for patients to schedule appointments — and to find out how far behind the doctor may be before settling into a waiting room chair.

It's one of several innovations meant to help patients. While many digital developments — electronic medical records and mobile medical encyclopedias — have streamlined doctors' work, new tools for patients are starting to hit cellphones and the Internet offering help in keeping track of medications, recording heart rate and glucose levels and managing personal and family medical history, among other tasks.

Appointment Status is designed to assist patients before they even take a seat in a waiting room — a sore point for many patients, as doctors well know. In a survey conducted by the doctor-review Web site Vitals, patients reported an average wait time of 21 minutes to see a doctor. Mississippi had the longest reported wait time, at just over 25 minutes.

Some patients say that's about as long a wait as they will tolerate.

"I'm willing to wait to see a doctor for about 20 minutes before I go talk to the receptionist, and after a 45-minute wait, I always leave and reschedule," said Maureen Green, a journalist from Syracuse. "Everybody's time is valuable, not just the doctor's time."

Developers and entrepreneurs are starting to tap into this frustration, as well as other rifts in doctor-patient relations. Mr. Oks said his next step is a mobile app to inform patients about delays.

Another service, ZocDoc, is also meant to help patients save time with doctor visits. Created by Cyrus Massoumi, Dr. Oliver Kharraz and Nick Ganju, ZocDoc allows patients to peer into a doctor's appointment book and schedule a visit through the Web.

ZocDoc has already been expanded with a new tool, ZocDoc Check-In, made available last month to help eliminate another cause of waiting room tedium: filling out a clipboard of forms.

"You're always handed a stack of forms to fill out when you enter a doctor's office," said Mr. Massoumi, the chief executive of ZocDoc. "And all the information is 80 percent the same as the last time you filled it out."

ZocDoc Check-In also enters patient's personal information in other doctors' forms, so there is no need to fill out a name and date of birth multiple times.

While these kinds of tools are becoming more common — ZocDoc is now being used in more than a thousand cities by doctors in more than 40 specialties — Mr. Oks is facing some resistance to his Appointment Status app.

"A lot of the doctors I've approached are set in their ways and skeptical," Mr. Oks said. "We've found some offices don't even have an Internet connection for their receptionists."

ZocDoc may have caught on because it helps doctors as well as patients.

"It's a win-win," Mr. Massoumi said. "Patients need convenience in scheduling a doctor's appointment, and from a doctor's standpoint, ZocDoc brings them patients and helps office staff manage their time."

Nevertheless, Mr. Massoumi said it took him a while to reach the point that doctors contact him about obtaining the technology.

Dr. Kamal Ramani, a general practitioner in Manhattan, said he adopted ZocDoc three years ago, when he moved his office and was looking for a way to save time and money.

"My staff doesn't have to be on the phone with patients suggesting time slots," Dr. Ramani said. "It streamlines the appointment-making process on both ends."

At the same time, some new technology that was developed for more efficient medical care delivery has some benefits for patients as well. For instance, despite widespread concerns about security and the potential for errors, electronic medical records can save patients time and improve communication.

Dr. Steven K. Magid, a rheumatologist whose office is at the Hospital for Special Surgery in Manhattan, said that initially he was worried about the time commitment needed to enter all of a patient's information digitally, but now he sees the benefits.

"It's faster for me to write a list of medications on a piece of paper than to do it on the computer," Dr. Magid said. "But on the back end I save time because everything is legible and everyone is working off the same list."

Patients' treatment instructions are clearly typed out, generating fewer calls to his office — and to him. And when patients still are confused or a new matter arises, his staff can address the problem without him by looking up the information in the digital record.

Eventually, say some, patients will expect their doctors to adopt these kinds of timesaving tools.

"There's a tipping point," Dr. Magid said. "There is going to be a shift."

Hospitals Ditch Formula Samples to Promote Breast-Feeding -

For years, virtually every new mother has been sent home from the hospital with a gift bag full of free product samples, including infant formula.

Now health authorities and breast-feeding advocates are leading a nationwide effort to ban formula samples, which often come in stylish bags with formula company logos. Health experts say they can sway women away from breast-feeding.

As of 2011, nearly half of about 2,600 hospitals in a survey by the Centers for Disease Control and Prevention had stopped giving formula samples to breast-feeding mothers, up from a quarter in 2007. The survey did not ask about distributing samples to non-nursing mothers.

Recently, 24 hospitals in Oklahoma agreed to a ban, and Massachusetts became the second state, after Rhode Island, in which all hospitals halted free samples. In New York City, Mayor Michael R. Bloomberg started the "Latch On NYC" campaign, urging hospitals to stop giveaways and monitor formula like other medical supplies, stored in locked cabinets and accounted for when mothers have medical needs or request it; 28 of 40 hospitals have agreed.

The debate over formula samples isn't about whether breast-feeding is healthier. Even formula companies acknowledge that "breast milk is the gold standard; it's the best for babies," said Christopher Perille, a spokesman for Mead Johnson, which makes Enfamil formula.

Breast-feeding decreases babies' risk of ear infections, diarrheaasthma and other diseases, and may reduce risk of obesity and slightly improve I.Q., experts say. The question is whether samples tempt mothers who could breast-feed exclusively for the recommended six months to use formula when they're exhausted or discouraged if nursing proves difficult. The C.D.C., the World Health Organization and breast-feeding advocates say samples turn hospitals into formula sales agents and imply that hospitals think formula is as healthy as breast-feeding. Health experts warn that even small amounts of formula dilute breast-feeding's benefits by altering intestinal micro-organisms and decreasing breast milk supply, since women produce less when babies nurse less. They say that while some women face serious breast-feeding challenges, more could nurse longer with greater support, and that formula samples can weaken that support system.

"We're not anti-formula," said Dr. Melissa Bartick, a founder of Ban the Bags, a breast-feeding advocacy group, which reports that one-fifth of the country's nearly 3,300 birthing programs have taken more comprehensive steps of banning samples and logo-emblazoned bags for all mothers. "If a woman makes an informed choice to formula-feed, the hospital should provide that formula. But hospitals shouldn't be marketing it."

The industry and some mothers say samples provide a healthy alternative and offer relief if nursing causes pain, fatigue or frustration. They disagree that samples can shake the resolve to breast-feed exclusively.

"Babies grow fine on it," said Mardi Mountford, executive vice president of the International Formula Council, who breast-fed her baby exclusively. "And moms tell us they like getting the samples."

Ann Roberts, 32, a book buyer in Atlanta, said she had wanted to breast-feed exclusively, but found it painful and her daughter was underweight. The sample "gave me peace of mind," she said. "It would have added stress to have to send my husband to the grocery store to buy formula." She continued supplementing with formula, and like many women who formula-feed, bought the brand the hospital gave out. "We are using that brand because we got the sample," she said.

Do samples sway women to use formula in the first place? Some studies have found that women who receive samples do not breast-feed as long as those who don't; others found no significant connection. People on either side of the sample issue agree that hospitals should support breast-feeding in many ways.

The campaign to ban samples stirs strong feelings among mothers, including those who are health care providers.

Megan Caron, 27, a nurse in Massachusetts, felt a sample coaxed her to capitulate when breast-feeding her daughter became challenging. "If it wasn't there, I think I would have tried a little bit more to get breast-feeding down," she said. "And once they get formula, it's hard to get them back."

Dr. Rachel Freedman, 34, an oncologist, had a different experience after giving birth this year at her hospital, Brigham and Women's in Boston. It long ago banned formula samples. But Dr. Freedman, who said she intended to breast-feed but had difficulty, concluded that samples could be "nice when you're a mother and you get into a pinch in the middle of the night and you're exhausted." When her milk did not come in, nurses encouraged her not to give up. But after hours of trying, "we broke down" and gave formula, she said. Her milk came in two weeks later, but not enough to nurse exclusively. "Maybe I wasn't patient enough, but at the time I thought he was starving," Dr. Freedman said of her son.

Dr. Nicole Leopardi, 30, a pediatrician, said the sample she got after giving birth at Virtua Hospital in Voorhees, N.J., in 2006, helped influence her to supplement with formula when she became worried she wasn't producing enough milk. "Since it was available, I think I probably kept doing it those early days," she said. "I was under the misconception that that would help the baby be more satisfied." This year, Dr. Leopardi gave birth at Cooper University Hospital in Camden, where she is affiliated. Cooper recently banned formula samples, and she said its unequivocal breast-feeding support helped her keep nursing.

At Cooper, where 70 percent of mothers were formula-feeding, the ban improved breast-feeding rates significantly. In a study, Dr. Lori Winter, a pediatrics professor at the University of Medicine and Dentistry of New Jersey, introduced hospital bags without formula logos or samples. At first, she was stunned to find that mothers were receiving formula samples anyway. Nurses were slipping them in, she said, because "they didn't believe these babies weren't going to starve. Cooper began storing formula in locked cabinets and having nurses document when mothers had medical needs or requested it. Now, 70 percent breast-feed in the hospital.

Other hospitals say they do not believe samples discourage breast-feeding. At Virtua, which runs two maternity hospitals in suburban New Jersey, Dr. Alka Kohli, vice president of medical affairs, said officials would re-evaluate formula giveaways. But she said that because of Virtua's breast-feeding programs, "despite the fact that formula sits around, our breast-feeding rates climb every year."

"Ban the Bags" campaigns have seeped into politics. Mayor Bloomberg's critics call "Latch On NYC" another nanny-state initiative. Breast-feeding advocates are criticizing Mitt Romney's 2006 decisions as Massachusetts governor to pressure the state's Public Health Council to reverse a ban on formula giveaways, and replace three council members who objected.

When UMass Memorial Medical Center in Worcester eliminated samples in 2005, people complained, said Dr. Ellen Delpapa, chief of maternal-fetal medicine. UMass partly retrenched, giving coupons for free formula to women not exclusively breast-feeding. Only when more Massachusetts hospitals stopped samples did UMass reimpose its ban.

Some hospitals say manufacturers make banning giveaways harder. Dr. Winter called it "a big production to disengage companies from flooding us with these bags," adding, "I was reported to the chief of neonatology because the companies said I refused to meet with them."

At Beverly Hospital, the last Massachusetts hospital to ban samples, companies "were very infiltrated," said Rebecca Gadon, director of maternal, newborn and cancer care. She arrived in 2008 to find formula companies giving the staff gifts and paying for continuing education classes.

Hospitals often also receive all formula supplies free from manufacturers, providing incentives to cooperate. Many hospitals continue to accept supplies after banning samples, although the C.D.C. and other agencies discourage this. UMass Memorial still accepts Similac and Enfamil, and while it is considering buying formula, "when they tell us how much we're getting for free, that's worth a lot," Dr. Delpapa said.

The chief of the C.D.C.'s nutrition branch, Laurence Grummer-Strawn, said he was concerned enough that he had "spoken to people at formula companies suggesting they change their marketing practices."

He also tells hospitals to buy formula, with competitive bidding like for other supplies. "We shouldn't be receiving free giveaways from pharmaceutical companies, we shouldn't be receiving free giveaways from formula companies," Dr. Grummer-Strawn said.

Neither the Formula Council nor Mead Johnson would discuss marketing specifically. Abbott Nutrition, which makes Similac, deferred questions to the Formula Council. Mr. Perille of Mead Johnson said factors like birthrate and efficiency were more important to business success than sending samples to hospitals or pediatricians' offices.

Still, hospitals are "the ideal setting for new mothers to get information about feeding options," Mr. Perille said. And "if they're going to formula-feed, we would like them to choose our brand."