As Specialists Debate Autism, Some Parents Watch Closely - NYTimes.com

A debate among medical professionals over how to define autism has spilled over into the public domain, stirring anger and fear among many parents and advocates of those with the neurological disorder, even as some argue that the diagnosis has been too loosely applied.

A study reported on Thursday found that proposed revisions to the American Psychiatric Association's definition would exclude about three-quarters of those now diagnosed with milder forms of autism called Asperger syndrome or "pervasive developmental disorder, not otherwise specified," also known as P.D.D.-N.O.S. These are people who have difficulties with social interaction but do not share the most severe impairments of children with classic autism.

"He was right on the border, they told me when he got the diagnosis; that's what scares me," said Amanda Forman of Flourtown, Pa., whose 5-year-old son was diagnosed two years ago with P.D.D.-N.O.S. After receiving play therapy, occupational therapy and 17 hours a week of behavioral therapy, the boy, who was once unresponsive to other children and engaged in self-destructive behavior, may enter a mainstream kindergarten class next year, his mother said. "What if he has to be re-evaluated? If the criteria were stricter, he might not get these services that have been helping him so much."

The proposed revisions, which would take effect in 2013, are likely to have practical implications for those who would once have qualified for services that experts say can improve an individual's abilities to socialize, learn and ultimately live independently. But they have also ignited a broad discussion over the value of a diagnosis for behavior differences, and how to fairly apportion services at a time when resources are shrinking.

The Diagnostic and Statistical Manual, now under revision, is the standard reference for mental disorders, driving research, treatment and insurance decisions. Since 1994, when recognition of Asperger syndrome was first included as an autism-spectrum disorder, diagnosis of the condition has surged.

Over the last decade, the number of 6- to 21-year-olds with autism in public schools has quadrupled, according to the Department of Education. Such students may get private school placement, a classroom aide or curriculum adaptations. In recent years, 29 states have passed laws requiring insurance companies to provide behavioral therapies and other forms of care to people with an autism diagnosis.

"We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger disorder," said Dr. David J. Kupfer, a professor of psychiatry at the University of Pittsburgh and chairman of the task force making the revisions, which are still subject to change. "It involves a use of treatment resources. It becomes a cost issue."

But some autism advocates argue that acknowledging the neurological basis for socially odd behaviors has benefits beyond eligibility for services, promoting cultural tolerance and a degree of self-understanding that may be lost without it.

"Having a diagnosis helps people understand why we process thoughts and emotions differently and make positive changes," said Michael John Carley, director of the Global and Regional Asperger Syndrome Partnership, which urged members to call the psychiatric association to complain. "Sadly, we may be heading back to the days when our differences are seen through the lens of character deficits rather than in the context of brain wiring."

Even within the medical community, the number of people who would not be eligible for an autism diagnosis under the new criteria is a matter of dispute. Some may fall under a new category, "social and communication disorder," though it is not clear what kind of aid, if any, they would be eligible for as a result.

Catherine Lord, the director of the Institute for Brain Development at NewYork-Presbyterian Hospital, and a member of the committee overseeing the revisions, said that the goal was to ensure that autism was not used as a "fallback diagnosis" for children whose primary trait might be, for instance, an intellectual disability or aggression.

She said the committee's own data shows that very few who currently have a diagnosis would be dropped. And another analysis of the effect of the proposed new definition, published this month in The Journal of the American Academy of Child and Adolescent Psychiatry, found that roughly 40 percent of individuals with Asperger syndrome would not be given a diagnosis under the new definition. That study suggested that altering the criteria slightly could recapture most of those who would otherwise be excluded.

Yet some parents of severely autistic children who are nonverbal, and may need constant care to avoid injuring themselves and others, say they would welcome a narrowing of the spectrum.

"Everyone on the spectrum benefits when money and services available are applied more specifically and appropriately to the individual needs of each person affected," said Mark L. Olson, of Henderson, Nev., whose daughter, 16, does not speak. Mr. Olson has argued on his blog that those with more severe needs have been overshadowed by people with the Asperger diagnosis, who have typical intelligence and language development.

Many comments, on the Web site of The New York Times and elsewhere, expressed the view that autism was overdiagnosed: "Come on, 1 in 100 children today?" one commenter wrote. "This pathology did not exist in the past because we did not label it."

And even some parents of autistic children noted in the debate this week that a diagnosis can be a double-edged sword.

"With it, a child gets needed services," wrote one Boston parent, whose son has a language impairment that makes socializing difficult. "The downside is that a child will be perceived by his peers as being abnormal and shunned socially. I noticed a huge change after my son was diagnosed. Once he got the autism label he rarely got birthday party invitations, for instance."

But like many parents, Ms. Forman, who requested that her maiden name be used to shield her son, said she sought the diagnosis only because her son so badly needed the services it would secure.

"I didn't know that feeling was so prevalent, that autism is so overdiagnosed," she said, having read many of the comments on Web sites. "I just know the amount of work I do for him, and that's not something I would do if I didn't have to do it.

"It's not the easy way out for anybody."

http://www.nytimes.com/2012/01/21/us/as-specialists-debate-autism-some-parents-watch-closely.html?_r=1&src=recg&pagewanted=print

1 in 5 Americans Had Mental Illness in 12-Month Period - MedPage Today

About 20% of American adults reported having had a mental illness during the preceding year, a government survey found.

The figure rose to almost 30% of those in the 18 to 25 age group, compared with 14.3% of patients 50 and older, according to researchers from the Substance Abuse and Mental Health Services Administration (SAMHSA).

And of the nearly 46 million U.S. adults who reported having had a mental, behavioral, or emotional disorder when surveyed in 2010, some 60% didn't receive any treatment for the condition.

The most common reason for not getting mental healthcare was not being able to afford it.

The researchers noted that although the 20% figure is "relatively high," just 5% reported having serious issues that interfered with their normal activities.

Although more of those with serious mental illness reported receiving treatment, a large proportion -- 39% -- didn't receive any mental health services.

The unemployed, Medicaid beneficiaries, and those living below the poverty level were more likely to have mental illness in the preceding year, as were younger patients. Women appeared to be at greater risk than men (23% versus 16.8%).

Substance use disorders were more common among those with mental illness than among those reporting no disorders (20% versus 6.1%), and the prevalence was even higher among patients with serious mental illness (25.2%).

The findings emphasize the need for mental health treatment specialists to address substance use disorders, and to more extensively integrate mental health and substance use treatment centers, the researchers wrote.

They also reported that many Americans had seriously contemplated suicide over the preceding year (8.7 million), and 2.5 million had actually made suicide plans. Just over a million patients had attempted it.

Signs of mental illness were also seen in American youth, with 8% of 12-to-17-year-olds reporting a major depressive episode -- being in a depressed mood for at least two weeks -- in the preceding year.

Children and adolescents who reported feeling this way were more likely to use drugs than those who didn't have a depressive episode (37.2% versus 17.8%), they found.

The researchers called for screening kids who've had a major depressive episode for substance use disorders.

The data come from SAMHSA's National Survey on Drug Use and Health 2010.

In a statement, SAMHSA administrator Pamela Hyde warned that mental illness is often concurrent with cardiovascular disease, diabetes, and obesity, and that "treatment of the mental illness can reduce the effects of these disorders

http://www.medpagetoday.com/Psychiatry/GeneralPsychiatry/30776

Changing Autism Definition Raises Questions - The Slatest

A new study suggests that many of those on the higher-functioning end of the autism spectrum may no longer meet the criteria for a diagnosis if a new definition makes its way into the Diagnostic and Statistical Manual of Mental Disorders (DSM), the book considered to be the standard reference for mental disorders.

The New York Times looked into both the study, which found that only 45 percent of those diagnosed with higher-functioning forms of autism might meet the new criteria, and the proposed changes to the definition.

The study is authored by Dr. Fred R. Volkmar, who resigned from the panel of experts currently working on the autism defintion. He and the panelists seem to strongly disagree on the purpose and effect of redefining autism.

Essentially, the American Psychiatric Association has appointed a panel to create a new edition of the DSM (which is long overdue; it's been 17 years since the current edition was created), and in re-defining autism, experts are trying to contend with the skyrocketing rate of diagnosis for autism and similar disorders like Asperger syndrome and "pervasive developmental disorder, not otherwise specified," abbreviated to P.D.D.-N.O.S by those in the know. They're doing this by combining all three categories of diagnosis under "autism spectrum disorder," and by narrowing the criteria that must be met for a diagnosis.

The new definition, the panel says, will provide clarity to diagnosing a disorder that badly needs it. While the panelists believe the impact of a new definition will be appropriate, Volkmar's study indicates it might have a much more widespread effect on those with Asperger's or P.D.D.-N.O.S., with a majority losing their diagnosis according to his analysis. Additionally, if he's correct, about a quarter of those currently diagnosed with autism proper would also not meet the critera.

For those who might lose their diagnosis -- or who may never be disagnosed at all -- the stakes are high: without a diagnosis, individuals will lose or be excluded from access to services like special education in schools and disability support. But some experts on autism and its related disorders believe it is often over-diagnosed: as many as 1 in 100 children have such a diagnosis, the Times reports.

You can read the full NYT story here.

http://slatest.slate.com/posts/2012/01/20/dr_fred_r_volkmar_new_dsm_autism_definition_harmful_.html?

Reports of Lost or Stolen Medications: Difficult Conversations - PainEdu.org

It is not unusual for a patient to report to their prescribing clinician that they have discovered that their prescription pain medication (or the written prescription) has been either lost or stolen, leading them to request a new prescription. It is important to distinguish between lost medications and stolenmedications.

Losing a prescription form or a vial of medications may result from the occasional lapses that all patients may have. If this occurs only once it may not have significant medical implications, and the prescriber may choose to replace it without much concern. Losing a medication more than once, however, may imply that something else is going on. There are many possibilities. Is the patient experiencing some type of cognitive impairment, perhaps one that is being made worse by the medication? Does the patient need a further neurological evaluation? Is the patient impaired by the use of other substances? Should a urine drug screen and some simple labs including CBC, metabolic panel, and thyroid function studies, be done even as early as the first incident of a lost prescription? Is the patient misusing the prescription and running out of it early because they are taking more than prescribed, giving it away, or selling it?

Taking a consistent approach to a lost prescription is made much easier if the provider has reviewed their policy about this with the patient ahead of time. If this has not been done, the first time there is a lost prescription is not too late to create a written patient/provider agreement, outlining each of their roles and responsibilities.

Clinicians in practice with multiple-providers should establish and circulate a uniform, clinic-wide policy among patients and staff, to avoid confusion about what they do. Some practices choose a "one and done" policy, (the first time you lose it I will refill it, but never again), or a stricter policy of zero-tolerance, and no early refills, under any circumstance.

If you are not replacing the lost medication, you will need to inform the patient about the potential for withdrawal, and offer to prescribe medications to help diminish withdrawal symptoms. Prescribing these medications needs to be individualized, based upon the patient's age, presence of other medical problems, use of other medications, and the patient's ability to follow-up.

The problem of reports of stolen prescriptions is more ominous because there is another person involved, and potentially, another person has been put at risk. Medication theft is a situation that requires some form of investigation and should be reported to the appropriate authorities. It is important for the patient to think about who might have stolen the medication.

In my clinical practice I do not provide an early refill for a stolen prescription. Other providers may take a "one and done" approach to stolen prescriptions as well as lost prescriptions. Again, with stolen medication, I will educate the patient about withdrawal symptoms and develop a plan to manage them if they occur.

Repeated medication loss, or theft, is a strong indication that the patient is at high risk and that it is not safe for this patient to remain on this medication. If a medical reason, like cognitive decline, is discovered, this may be successfully addressed so that the patient can continue on the medication. However, if this cannot be done, or if the patient lives in an unsafe environment, the best course may be to taper and discontinue these medications, substituting treatments that are lower risk.

Describing how you address these problems before the patient has begun treatment, and before incidents of lost or stolen medication, is part of your description of the treatment plan, and it demonstrates the principal of shared responsibility.

http://www.painedu.org/articles_timely.asp?ArticleNumber=60&

U.S. to Tell Drug Makers to Disclose Payments to Doctors - NYTimes.com

WASHINGTON — To head off medical conflicts of interest, the Obama administration is poised to require drug companies to disclose the payments they make to doctors for research, consulting, speaking, travel and entertainment.

Many researchers have found evidence that such payments can influence doctors' treatment decisions and contribute to higher costs by encouraging the use of more expensive drugs and medical devices.

Consumer advocates and members of Congress say patients may benefit from the new standards, being issued by the government under the new health care law. Officials said the disclosures increased the likelihood that doctors would make decisions in the best interests of patients, without regard to the doctors' financial interests.

Large numbers of doctors receive payments from drug and device companies every year — sometimes into the hundreds of thousands or millions of dollars — in exchange for providing advice and giving lectures. Analyses by The New York Times and others have found that about a quarter of doctors take cash payments from drug or device makers and that nearly two-thirds accept routine gifts of food, including lunch for staff members and dinner for themselves.

The Times has found that doctors who take money from drug makers often practice medicine differently from those who do not and that they are more willing to prescribe drugs in risky and unapproved ways, such as prescribing powerful antipsychotic medicines for children.

Under the new standards, if a company has just one product covered by Medicare orMedicaid, it will have to disclose all its payments to doctors other than its own employees. The federal government will post the payment data on a Web site where it will be available to the public.

Manufacturers of prescription drugs and devices will have to report if they pay a doctor to help develop, assess and promote new products — or if, for example, a pharmaceutical sales agent delivers $25 worth of bagels and coffee to a doctor's office for a meeting. Royalty payments to doctors, for inventions or discoveries, and payments to teaching hospitals for research or other activities will also have to be reported.

The Obama administration estimates that more than 1,100 drug, device and medical supply companies will have to file reports, generating "large amounts of new data." Federal officials said they would inspect and audit drug company records to make sure the reports were accurate and complete.

Companies will be subject to a penalty up to $10,000 for each payment they fail to report. A company that knowingly fails to report payments will be subject to a penalty up to $100,000 for each violation, up to a total of $1 million a year.

Top executives are potentially liable because a senior official of each company — the chief executive, chief financial officer or chief compliance officer — must attest to the accuracy of each report.

The new requirements, or something very similar, will take effect soon; in fact, they are overdue. Under the new health care law, the administration was supposed to establish payment-reporting procedures by Oct. 1, 2011. The public will have until Feb. 17 to comment on the proposals, which are broadly consistent with the expectations of industry and consumer groups. After considering the comments, Medicare officials will issue final rules with the force of law.

Consumer advocates have long demanded details of the financial ties between doctors and drug and device companies.

Allan J. Coukell, a pharmacist and consumer advocate at the Pew Charitable Trusts, said: "Patients want to know they are getting treatment based on medical evidence, not a lunch or a financial relationship. They want to know if their doctor has a financial relationship with a pharmaceutical company, but they are often uncomfortable asking the doctor directly."

In an introduction to the proposed rules, the Obama administration says that patients can benefit when doctors and the industry work together to develop life-saving drugs and devices. But, it said, these relationships can also "lead to conflicts of interests that may affect clinical decision-making" and "threaten the underlying integrity of the health care system."

More ...

http://www.nytimes.com/2012/01/17/health/policy/us-to-tell-drug-makers-to-disclose-payments-to-doctors.html?_r=1&nl=todaysheadlines&emc=tha2

The Future of Personalized Medicine - David B. Agus - WSJ.com

Take a moment to imagine what it would be like to live robustly to the ripe old age of 100 or more. You wouldn't die of any particular illness, and you wouldn't gradually waste away under the spell of some awful, enfeebling disease that began years or decades earlier.

It may sound far-fetched, but it is possible to live a long, disease-free life. Most of the conditions that kill us, including cancer and heart disease, could be prevented or delayed by a new way of looking at and treating health. The end of illness is near.

Today, we mostly wait for the body to break before we treat it. When I picture what it will be like for my two children to stay in good health as independent adults in 10 or 20 years, I see a big shift from our current mod

I see them being able to monitor and adjust their health in real time with the help of smartphones, wearable gadgets—perhaps like small, invisible stickers—to track the inner workings of their cells, and virtual replicas of their bodies that they will play much like videogames, allowing them to know exactly what they can do to optimize every aspect of their health. What happens when I take drug x at dosage y? How can I change the expression of my genes to stop cancer? Would eating more salmon and dark chocolate boost my metabolism and burn fat? Can red wine really lower my risk of heart attack?

From a drop of their blood, they will be able to upload information onto a personal biochip that can help to create an individualized plan of action, including both preventive measures and therapies for identified ailments or signs of "unhealthiness." (Other body fluids—like tears and saliva—might be routinely tested, too.) They would be on the lookout for problems like imbalances in blood-sugar control, a risk factor for diabetes, and uncontrolled cell growth, which could signal cancer. Their doctors won't just examine them once a year; they will continually monitor the next generation of patients, offering advice along the way.

What is equally exciting is that this patient data will be added to a universal database that can be aggregated by powerful search engines like Google and constantly fed into new trials and experiments—speeding up our understanding of which drugs work best for which people. The database might show, for example, that people with a particular genetic profile respond to one type of cancer treatment but not another. As more people anonymously add their health data, this database would become more and more effective as a tool for preventive medicine.

Today, most people who are concerned about their health follow sweeping, general guidelines. If you want to lose weight, you are likely to pick a diet that advises eating more fibrous vegetables and cutting back on processed sugar. If you want to reduce your risk for cancer, you avoid tobacco smoke, exercise regularly and take early detection seriously.

Ari Meisel suffered from the symptoms of Crohn's Disease for years before he decided to overhaul his health-care regimen. He's part of a movement of citizen scientists who are turning their bodies - and their lives - into personal laboratories. WSJ's Christina Tsuei reports.
The problem with health care today is that we don't know enough about the body to practice preventive medicine actively. With limited knowledge, diagnostic medicine makes sense. If we don't know what we're trying to prevent or how best to do it, we have to wait for an obvious symptom to emerge in order to take action. At that point, we're usually treating a disease that has had ample opportunity to progress.

We can do better. To start, we need to appreciate the body for what it is: a very complex network, much of which we don't yet fully understand. When you look at the body from this systemic point of view, you begin to see that a lot of what we know about health is gravely misunderstood.

In 2009, my colleague Danny Hillis—a former Disney engineer who pioneered the development of so-called parallel supercomputers—and I set up a way to measure 100,000 different types of proteins from a single drop of blood. The goal is to evaluate and make sense of the body's intricate inner workings in a way that's much more dynamic and insightful than what DNA alone can provide. Proteins change in your body every minute, depending on what's going on internally. Our ultimate plan is to develop tests, based on protein levels, for illnesses like cancer. Such tests could take the place of invasive techniques like biopsies.

The new Telcare meter marks a significant step toward bringing consumer medical devices closer to the world of modern technology. Walt Mossberg reports.
With each passing year, the technology necessary for this revolution in medicine is growing less expensive. Last week, Life Technologies of Carlsbad, Calif., announced that it will be able to map an individual's entire genetic sequence in one day, for $1,000. Similar tests today cost many thousands of dollars. The ability to follow day-to-day changes in your body's proteins and metabolites is not far behind.

So how do we get to this future?

It has to start with data collection. In 2004, Dell launched a company program called Well at Dell to encourage healthy lifestyles. Employees receive alerts and information customized to their health issues, incorporating their latest test results and treatments and allowing them to make more informed decisions. A newly diagnosed diabetic, for example, might get information about how to monitor blood sugar and watch out for the circulatory problems that often accompany the disease.

Not surprisingly, these corporate health-management tools have come under fire, with most critics worrying about privacy. But we can't expect the health-care industry to continue to innovate and grow if we continue to hoard health information.

The federal agency that administers Medicare pays over half of the medical bills in the U.S., but it doesn't retrieve, organize or mine that data. Imagine how much better the Medicare system could be if all this data were analyzed to improve public health. Or imagine databases from many different sources, private and public, coming together in a centralized network that would look for patterns and try to translate them into new ideas for anticipating and preventing health problems.

Personalized medicine isn't as far away as you might think. Consider what's already happening in genetic profiling for individuals, which is available today for several hundred dollars. I co-founded a genetic screening company and am a big proponent of the technology. It allows us to take a broad look at DNA variations and to assess your risk for certain ailments and what medications, at what dosages, might work best, based on your metabolism. Just because you have one or two markers of genetic risk does not mean that you will definitely develop a particular condition, but the outcome can be affected by changes in lifestyle, or in some cases, by taking medication.

As these and other technologies advance, it will become progressively easier to monitor and maintain our overall health. Then it will be up to us. The promise of personalized medicine depends, finally, not on the tools that become available but on our determination to be informed and willing patients.

—Dr. Agus is a professor of medicine and engineering at the University of Southern California and co-founder of two personalized medicine companies, Navigenics and Applied Proteomics. Adapted from "The End of Illness," to be published Tuesday by Free Press.

http://online.wsj.com/article/SB10001424052970204124204577155162382326848.html

A family learns the true meaning of the vow “in sickness and in health” - The Washington Post

The dark-oak farmhouse table where Page and Robert Melton spent many a dinner hour is now laden with vases and framed pictures, fragile pieces of their life together that have to be tucked into cardboard boxes. The movers are coming in the morning and, with much still to pack, Page thinks she could be looking at another all-nighter.

She picks up a sepia-toned drawing of blackbirds. They gave each other art in the early years of their marriage, and this was the first thing Page had given Robert. Next, a photo of Robert standing in front of the Virginia statehouse, looking every inch the formidable journalist he was, a guy who could intimidate colleagues with a dipped chin and glance over wire-rimmed glasses.

The next photo is one of her favorites: Robert with family members by the porch of their homey Dutch colonial in Richmond on the morning of their younger daughter's christening, in September 2002. A brilliant fall day, it was exactly one year before the heart attack and collapse that left the 46-year-old father of two with a brain injury so severe he would eventually live in an assisted living facility. How often Page had stared at that photo. Was he ill then? she'd wonder. Was there something she could have seen? Should have seen?

Page shakes off the thought and rolls bubble wrap around the photo, much as she has tried to cushion the hard edges of the part of their bifurcated life they refer to as "after the injury." Robert had come a long way since 2003, when he looked at his wife sitting by his side in the hospital and said, "You seem like a nice lady. How come you're not married?" She had gone home that day and put away the diamond and emerald ring he had given her when he proposed. Looking at it made her too sad.

Seven years later Robert was still mentally impaired and his personality far different than before the accident, but he knew his family, knew he had had a brain injury that upended their lives, and asked lots of questions. He carried with him at all times a reporter's notebook, in which he had written the information most important to him: his daughters' ages — 9 and 11 — and that he has "known my honey" 18 years.

He could remember snippets of his pre-injury life — the made-up song he and Page sang to their girls, his nicknames for colleagues, that he had been an Eagle Scout. And though he still broke Page's heart every day with a sweet and childlike simple-mindedness — repeating his plans to "take meds, wash hands and brush teeth" like a mantra, or excitedly announcing that he'd won a candy bar at a penny toss "and didn't cheat at all" — once in a while, he would say something insightful and completely on point.

Just days earlier, at the Sunrise assisted-living facility where he lived for several years, Robert had looked at Page with earnest eyes and the relaxed demeanor he used to have and asked if it was hard for her to pack up the house: "Does that cause you distress, darlin'? Make you sad?" Page took his hand, and her eyes filled with tears. "We had the best days of our lives and the worst days of our lives in that house," she said quietly. "So, it's very bittersweet to leave it."

"It is bittersweet," Robert echoed.

The girls were so young when Robert fell ill — Hope was 3 and Nell 18 months — that Page was the only one of the four who remembered those days. Page alone knew that Robert loved to work in the yard and tend the azaleas. Or that he liked to write his weekly Virginia politics column in the garage. Or that he held Hope on his lap as he read the New Yorker, letting the quiet daughter who was so much like him point to letters she recognized.

Page was the only one who remembered the day in September 2003 when, just home from the hospital after the heart attack, Robert hugged her in the kitchen and told her everything was going to be all right. Or the moment a day later when he collapsed and stopped breathing.

Wrapping up the contents of their home on the eve of moving day — and the beginning of a new chapter in their lives — Page couldn't help but reach back to those best and worst of times, and one other memorable day:

On a Saturday morning in the spring of 2010, Page had arranged for Robert to come home from Sunrise for breakfast. She had asked Robert's brother Will to drive down from Annandale to be with them and sent the girls out for the morning with Allan Ivie, a friend from childhood who had come back into her life. She had consulted with Robert's doctors and her minister. She cooked up some eggs. She was nervous as she sat down at the big oak table next to her husband of 16 years.

Then she had a conversation with Robert she had never imagined she could have.

* * *

During the eight weeks Robert Hamilton Melton spent at a rehabilitation hospital in Hanover, Va., after his brain injury, he would often pick up a notepad and pen, wander into another patient's room and start talking. Before he remembered anything about his personal life, he remembered he had been a reporter.

Writing under the byline R.H. Melton, Robert, 54, had built his career at The Washington Post, where he worked since 1982 as an editor and a reporter, primarily covering politics in Maryland, Virginia and the District. (He was a colleague of and became a close friend of my husband's.) He was considered the institutional memory, a thoughtful editor and an elegant writer who was often the go-to guy on breaking stories.

In Richmond, where he worked during the final years of his career, he broke stories that rattled the political landscape: One led to the resignation of the speaker of the House of Delegates in 2002, and another resulted in the federal conviction of a former executive director of the Virginia GOP. The Post nominated him for a Pulitzer Prize for beat reporting that year; in 2009, he was inducted into the Virginia Capitol Correspondents Association Hall of Fame.

At 6-foot-5, Robert was an imposing presence, both supremely self-contained and reserved. He listened more than he talked, and he didn't mind that he intimidated people.

"He could be very haughty and very snide," Bob Lewis, a reporter for the Associated Press in Richmond, says affectionately. "He did that to new people, just to see if they could roll with it. If you let it get under your skin, you failed the Robert test."

But beyond the tough exterior was a wickedly funny and loyal colleague and friend.

Growing up in Springfield, the second of five boys born to Mary Hope, a homemaker, and Eston Melton, a chemical engineer, Robert had a knack for language from an early age. At Annandale High, he worked on the school paper, as he did later at the University of Virginia, and, at 17, won a statewide oratorical contest with a defense of the First Amendment.

Page Boinest, a Richmond native and fellow graduate of U-Va., had met Robert in the mid-'80s when she was a junior reporter with UPI helping cover a special session of the Virginia legislature. Through the years, the two crossed paths, and friends even set them up on a date, but they didn't hit it off. Page found Robert private, hard to get to know.

In 1990, Page left UPI to join the staff of then-Maryland Gov. William Donald Schaefer, first as his speechwriter, later as his press secretary. At a business dinner in Annapolis with Robert in 1992, something changed. "I don't know how to describe it, but there was this chemistry between us — it had never been there before," says Page, now 51.

Married in 1995, their life together was a carefree mix of travel, work, politics. Their first daughter, Virginia Hope, was born in 2000, followed two years later by Nell Hamilton. On that day in April 2002, Robert handed their new baby girl to Page. "Now our family's complete," he told her.

It was the happiest day of Page's life.

* * *

On its destructive path up the East Coast in September 2003, Hurricane Isabel ripped through central Virginia, downing trees and leaving thousands, including the Meltons, without power for days.

From his office near the Capitol, Robert was writing story after story about the devastation. He had spent days clearing out his own back yard and was surprised at how tired the work made him.

He was working at his office on Saturday, Sept. 20, when his chest started to hurt. He thought perhaps he had eaten bad salami for lunch, but since he'd had a heart scare before — in 1997, he had been hospitalized with an irregular heartbeat — he walked across the street to the emergency room at the Medical College of Virginia, now Virginia Commonwealth University Medical Center. He was having a heart attack.

On Monday, doctors implanted a stent in one of his coronary arteries. Two days later, on his 46th birthday, he was allowed to go home.

A day later, the power finally came back on in their home. Robert and Page were in the kitchen when Robert pulled his wife into his arms and reassured her: "Everything's going to be okay now. We got the power back, and I'm home."

But the next day, Friday, Sept. 26, at about 4 p.m., the life they had known ended. Page was making dinner. Nell was in a high chair at the dining room table. Robert bent over the chair to scoot it in and suddenly dropped to the floor.

The children started screaming. Page called 911. Robert was barely breathing — then stopped. Page tried CPR. Neighbors came. Power crews in the area came in and tried to help. Page remembers a big burly man holding her 18-month-old. Still no ambulance. A sheriff's deputy came in and tried to revive Robert.

"He was gone," Page says.

Finally, after a half-hour, the volunteer rescue squad showed up. There had been so many cases of chest pains because people had been out clearing their yards that the emergency crew was stretched thin. Page jumped into the ambulance, and it headed to Henrico Doctors, the nearest hospital, about 20 minutes away. Henrico was overflowing and tried to divert the ambulance to MCV downtown. Page screamed at the driver: No, he'll never make it if you go downtown — just go to Henrico Doctors.

The driver did. But Robert had been down for about 45 minutes. When the cardiologist came to talk to Page, he told her, "I can revive him, but you're not going to want me to."

She had to decide on the spot. "Bring him back to me," she told the doctor. "Bring him back to us."

After about 20 minutes, the doctor came out. Robert was in a coma and on life support. The collapse was likely caused by a blood clot thrown off by the stent, doctors said, and Robert would either not make it, survive in a persistent vegetative state or, best-case scenario, come back but not resemble the man she knew.

After three days, Robert woke up. He was talking, mumbling, whispering, but none of it made sense. He didn't know who anyone was. Still, nurses told Page stories of miracles, people who came all the way back. She clung to those.

Doctors told Page that most of whatever progress Robert would make would be in the first year; the lack of oxygen to his brain had caused hypoxic-ischemic brain injury, moderately severe.

Robert spent several weeks at Henrico Doctors, where he had a defibrillator put in, then was transferred to a rehabilitation hospital. He'd had little physical impairment, but his cognitive loss was profound. He had severe language problems, couldn't sit still, was confused and frustrated to the point of violence. And he had no memory — short- or long-term.

The therapists tried all sorts of tools for dealing with the memory loss. They made him a "memory book." They made him lists. One gave him a PalmPilot. Nothing worked. Then one day, Page brought him stories he had written, newspapers, reporters' notebooks, his tape recorder.

He picked up one of the pads, started writing in it, and popped it into his back pocket. For the first time, he remembered something: "I was a reporter. I was a writer, wasn't I?"

After a month in rehab, Robert spent eight weeks at a residential facility for brain-injury patients in North Carolina. By January 2004, he had made enough progress to go home, but after about five months at home, the progress slowed.

He could speak and read and write, but he couldn't hold onto the meaning behind words. He had little judgment or control over his behavior and was increasingly frustrated. "He didn't remember his former life," says Page, "but he knew it was something more than he had at the time."

Doctors told Page that Robert would benefit from someplace with regular activities and a set schedule — a routine that was difficult at home with two small children — as well as caregivers to manage his medications and his own space to recover in. The only long-term choices were a nursing home or an assisted-living facility.

"At that point, it was like the dream died," Page recalls. "It was very hard, because when Robert came home, you have this not-even-rational thought that, 'If I just love him enough, he'll get better.' "

There are not many brain-injury patients at assisted-living facilities, not many healthy 46-year-olds bounding around with lots of energy. So the Meltons had to make it up as they went along when Robert entered Brighton Gardens in Richmond.

The first year was difficult. Robert's presence unsettled the older, feebler residents. He would complain to Page that bingo was boring or that there wasn't much to do. He struggled with his temper.

But, over time, the routine began to ease Robert's anxieties and help him function.

A checklist on his medicine cabinet, "Robert's Recipe for a Handsome Husband," reminded him to shower, shampoo and shave, and caregivers — as well as a companion Page hired to provide stimulation — helped him accomplish those tasks. He ate meals at the same table with the same group of men, all decades older than he.

Eventually, he started to embrace the activities — from beading to Bible studies, even bingo — and slowly his irritability evolved into a warm, jolly nature.

"At some point, he just gave himself up to it," Page says. "And that was huge to me, because I was beating myself up about the fact that he wasn't at home anymore."

Page visited Robert every day at first and eventually every other day, and the girls came for lunch every Saturday. When Brighton Gardens was sold to another company, Robert moved to Sunrise along with much of the staff, which had grown to love him and his family.

Today, he looks healthy and fit, and walks with confidence. Page makes sure he dresses well, and glasses at the end of his nose still give him a professorial look. But within seconds of meeting him, it's clear his mind is impaired. It's hard to know how much he comprehends, even when he answers a question. Conversations are limited and disjointed.

He sometimes latches onto the sounds of words rather than their meaning — saying, "Give my regards to Broadway," for instance, when he's told a friend "sends his regards." He often falls back on stock phrases or song lyrics.

The most striking thing about Robert is his personality. Once reserved and a bit aloof, Robert today is talkative and exuberant. He seems to spill over with wide-eyed joy and gratitude. He calls everyone "darlin' " or "babe" or "bro.'"

"Mabel, I cannot thank you enough for that toilet tissue," he'd say to the short Colombian woman who cleaned his room at Sunrise.

His outsize gregariousness — a reflection of an "organic personality disorder," says Nathan Zasler, his brain injury medicine specialist — enlivened the quiet halls full of wheelchairs and walkers there. As did his family.

Once, Page brought in leis and sunglasses, and grass skirts for the girls, so the four of them could lip-sync "Cheeseburger in Paradise" at the Sunrise talent show. "We brought the house down, didn't we?" she says to Robert on a later visit.

It sparks something else. "Do you know what I remember?" he asks Page. "I remember the Sailboat Song. Did you come up with that, darlin'?"

It was the made-up song they sang to their daughters at night.

Sitting together in the assisted-living home, Page starts to sing it softly, and Robert joins in, tapping time on the table and staring off into the distance:

All I want is a sailboat day. And we'll head toward the Chesapeake Bay. And we'll laugh all the way. Oh, won't it just be wonderful.

"After my injury, did the girls ever join in the chorus, hon?" Robert asks.

"I don't know," Page says. "But after you were in the hospital, I kept singing it, because it reminded them of you."

More …

http://www.washingtonpost.com/lifestyle/magazine/a-family-learns-the-true-meaning-of-the-vow-in-sickness-and-in-health/2011/11/04/gIQAahyAdP_print.html

Premiers to meet as medicare lies in its sickbed - Montreal Gazette

OTTAWA - The fate of medicare is on the line as Canada's premiers meet next week in Victoria.

The two-day gathering, which starts Monday, comes at a time of potential peril to the country's health-care system.

Spending has been running rampant in recent years, cutbacks are on the way, long-promised national reforms are nowhere to be seen and an aging and growing population is putting even more strain on the system.

The premiers are looking for a solution to their problems and some are hoping Prime Minister Stephen Harper's Conservative government eventually comes to the table with cash to assist in reforms and initiatives such as home care and seniors care.

But so far, Harper is cautiously standing back - giving provinces a long-term funding plan that falls short of what many premiers had wanted, urging them to get their spending under control and stressing the importance of keeping the future system financially sustainable.

That new approach from Ottawa - a stark contrast to previous Liberal federal governments that sought to ensure national standards are in place for medicare - has left premiers scrambling with different reactions.

Western premiers don't necessarily mind Harper's hands-off strategy, while some other premiers have voiced concerns that medicare could be headed toward a patchwork-quilt system that lacks equity between regions. In short, for now at least, a national solution to the looming crisis appears out of sight.

Still, several premiers interviewed this week by Postmedia News indicated a determination to seek innovative solutions to the enormous task that lies before them.

"There are some big issues in health care that we have to address and I think it's going to take some political courage to do that," said British Columbia Premier Christy Clark, who will host the meeting.

She said provinces should not shirk from the challenge of reforming the system now that Harper's government has left the task in their hands.

"We will eventually bankrupt the system if we keep going the way we are. And so we have to find ways to try and make the system sustainable."

Ontario Premier Dalton McGuinty said his province has spent recent years working hard to improve the system through innovation - thereby lowering surgical wait times and ensuring more patients have a family doctor.

But he said Harper needs to be at table to work with provinces collectively on a plan forward.

"As my dad used to say: 'Nobody is as smart as all of us. And nobody is as strong as all of us.' So I think we have missed an opportunity to come together and tackle this challenge together."

Most premiers are annoyed at how the federal government has undercut a process they thought would lead to health-care talks. In December, federal Finance Minister Jim Flaherty unilaterally unveiled a non-negotiable funding plan that runs to 2024, but which falls short of what provinces had hoped for.

Federal health-care transfers will continue to increase by six per cent until 2016-17. After that, increases will only be tied to economic growth including inflation -_currently roughly four per cent - and never fall below three per cent.

This week in Ottawa, parliamentary budget officer Kevin Page released a report concluding the plan will place a huge financial burden on the provinces. He expects cash transfers to the provinces to grow at 3.9 per cent annually, on average, from 2017-18 to 2024-25 - compared to provincial-territorial health bills, which he forecasts will grow by 5.1 per cent a year.

Moreover, if the funding plan stays in effect beyond 2024, the implications are stark: The federal share of medicare spending would gradually fall from its current level of 20.4 per cent - eventually hitting 13.8 per cent in about 40 years, and then 11.9 per cent two decades after that.

In provincial capitals, the premiers are now confronting many challenges. Among them:

o Avoiding slash-and-burn approaches as health spending is reined in.

o Finally moving the system away from its institutional focus on reactive hospital-based acute care, to one where publicly insured medical treatment is delivered closer to home (in private clinics or, indeed, at home).

o Getting a grip on the "cost-drivers" of the system, most notably, prescription drugs - which can be cheaper if provinces join together to buy in bulk.

o Figuring out which medical procedures - from knee surgeries to caesarean sections - are actually worth the cost to the system and whether there should be fewer of them.

o Doing a better job of informing Canadians (particularly young people who are increasingly overweight and obese) about the importance of lifestyle - diet, exercise, smoking - to their own odds of living a long, healthy life.

o Preparing for the demographic wave that is fast approaching: The population is getting older. These are citizens who will increasingly need health care, and after decades of paying taxes they will expect results. Provinces must grapple with the costs, and confront ethical questions surrounding end-of-life care.

Alberta Premier Alison Redford says provinces must find innovations and understand that health care "does not begin the day a person walks into a health-care facility but very often the underlying causes are issues that deal with social policy, poverty, domestic violence."

Saskatchewan Premier Brad Wall says the country needs a more "fulsome and informed debate" about how medicare dollars are being spent.

"We need to be focused on better patient care and better value for taxpayers," Wall says of the provinces.

"Continued economic growth is also vital to long-term funding of health care, lest the system become even more unsustainable. And, since working Canadians are healthier Canadians, the two issues are inextricably linked."

Quebec Premier Jean Charest says it's important for the federal government - which transfers billions of dollars in equalization payments to provinces in addition to health transfers - to get the entire package right.

"At the end of the day, we want the overall transfers to be equitable and fair. And we would not want to be in a situation where there's an increase in one area and a decrease in another where the net outcome is negative."

New Brunswick Premier David Alward believes a crisis is looming - particularly with the aging population needing care - and that some hard questions need to be asked about why the country isn't getting better results for its health-care money.

"We need to have a real, honest, open discussion of the future of health care in our province and country," he said.

"We do have a good health-care system, we have great people in that system. But it does need innovation, it does need accountability as well. Not being prepared to have that discussion, I think we all, as political leaders, do a disservice to the people we represent."

Welcome to the Great Health-Care Debate of 2012.

Canadians have seen this before. They witnessed their cherished medicare system falling apart in the 1990s - as hospitals closed, medical staff were laid off and patients lined up for hours at hospital emergency wards.

The shock to the national psyche led to a royal commission headed by former Saskatchewan premier Roy Romanow.

His 2002 report proposed significant hikes in federal funding for provincially delivered medicare systems. Just as important as the extra cash, he stressed, was the need for major reforms in areas such as pharmacare, primary care and home care.

Then-prime minister Paul Martin promised a "fix for a generation" and summoned premiers to Ottawa for a high-stakes summit in September 2004.

After locking themselves up in the old train station near Parliament Hill, the leaders cracked a deal and held a news conference in the middle of the night.

Provinces were guaranteed a 10-year deal with $41 billion in extra health-care funding with a guarantee that federal transfers would rise by six per cent annually. In return, provinces were expected to initiate reforms.

With the exception of shorter wait times for some medical procedures, however, the much-heralded accord fell flat.

In 2011, it's expected the country's health tab, which includes government spending and how much Canadians pay out of their own pocketbooks, will have reached $200.5 billion - up from $107 billion just a decade ago.

That's $5,811 per citizen on health care last year. Or seen another way, it represents 11.6 per cent of GDP.

The public/private split on health care spending hasn't changed in recent years.

The public portion (governments, primarily the provinces,) is still 70 per cent - $140.9 billion. Meanwhile, the private portion of the tab (households and private insurance companies) Is 30 per cent - $59.5 billion.

All the while, it has been the provinces and territories that are at the heart of the health-care system.

For four years in the mid 1990s provincial and territorial health spending slowed to a virtual halt. Then the taps were opened. In 1995, provinces and territories spent $49 billion on health care. In 2011, the tab is expected to have reached $130.3 billion.

Policy expert Don Drummond, a former senior Finance Department official, is among those who have delivered a blunt message in recent months.

"For the amount of money spent, the system should surely be delivering better results," he wrote in a report for the C.D. Howe Institute.

"Things will only get worse as health care eats up every other public service like an insatiable Pac-Man. I do not believe the public will allow governments to levy ever-increasing taxes to avoid that scenario. So the system must be reformed."

http://www.montrealgazette.com/news/Premiers+meet+medicare+lies+sickbed/5994093/story.html