Type 1 diabetes – dancing with a Tasmanian devil

What is it really like to live every single day with type 1 diabetes? This blog is being turned over today to one of my newsroom colleagues who can speak frankly about it: She and her husband have firsthand experience with the ups and downs, the fears, the frustrations and triumphs of being the parent of a child with type 1 diabetes.

Type 1 diabetes is most often diagnosed among children and young adults and occurs when the body is unable to produce insulin. An estimated 3 million Americans – both children and adults – are living with type 1 diabetes; they account for about 5 percent overall of people in the U.S. who have diabetes.

By Gretchen Schlosser

It was March 2011, my husband and I had just been informed that our older son had Type 1 diabetes. Still in shock, we met with a pediatric endocrinologist at a major Twin Cities health clinic. We didn’t believe a word of it when the doctor said that his diabetes wouldn’t completely take over our lives.

“Really, once you get used to it, this will only take 10 minutes a day,” he said, referring to the blood glucose testing, carbohydrate counting and insulin dose calculating process that had to happen before any meal or snack and at least four times every day.

Twenty months later, the doctor’s statement has proven to be true. My family only spends a small amount of time every day addressing our son’s diabetic needs.

That’s not to say that the entire family didn’t work pretty hard to bring our heads and our hearts around to accept the changes in our lives. We had a steep learning curve to learn to accurately count carbs, recognize high and low blood sugars and give insulin doses. We also had to emotionally accept the rearranging of our lives to address his diabetes. Never mind the deep financial hole to fill due to his ongoing medical bills.

Plus, we had to realize – like so many families with kids with chronic health conditions – that our lives were always going to be different and that healthy people cannot or will not understand our situation. It was kinda like dancing with a spinning Tasmanian devil. A lot of people just stepped away because they felt uncomfortable being so close to something they didn’t understand or were afraid of.

November is diabetes awareness month. My goal is to help you help families of Type 1 diabetes (T1D) children experience as normal a life as possible. You can’t take away the child’s need for insulin and control his/her blood sugar, but you can:

- Replace pity with empathy. Ask questions and air your concerns — preferably without the T1D kid around to hear — with the parents to learn what to do to help the child participate fully in events and activities. The parents can give you full instructions and probably already have a written list for you to follow.

- Understand that it’s not about sugar! Diabetics count carbs and carbs are in almost all foods, except meat and cheese. Bread has carbs. Milk has carbs. Fruit has carbs. Veggies have carbs. If you’ve never read that far down the side of the cereal box, look toward the bottom of the nutritional label and you’ll see “carbohydrates” listed grams. That’s what diabetics use to count and calculate their insulin doses.

- Try to disconnect food from social activities. One of my biggest peeves is that our society does EVERYTHING with food, usually sugary cookies, bars, cakes, candy and sweet drinks. When you are the host of an event, ask yourself if people actually need to eat during the event and if the prizes/handouts have to be candy or sweets. What’s wrong with handing out pencils, erasers, trinkets and doo-dads instead of candy?

- If you are a family member or close friend of a T1D family, take it upon yourself to learn to count carbs, recognize high or low blood sugars and understand how to calculate an insulin dose. My child now has an insulin pump that automatically figures the insulin dose, so if other trusted adults in his life can count carbs and watch him push the buttons on his pump, he can hang out for the evening or have sleepovers at their house!

- Learn more about T1D by visiting the JDRF website at www.jdrf.org. The organization is a world leader in education and research to find better treatment and a cure for T1D.

- If you know of a family that’s dealing with T1D, pass on information about this support group. The JDRF-based group meets from 6 to 7 p.m. on the first and third Thursdays at the Willmar Public Library, beginning on Nov. 1. At this time, the meetings are for parents only. T1D parents and caregivers – I hope to see you there!

The price of a good night’s sleep

Getting a good night’s sleep apparently really matters to a lot of people. Just ask the  participants in a recent survey who said they’d be willing to forego a pay raise, extra vacation time or even a month of sex in exchange for sleeping well.

The phone survey, conducted in April with 1,000 U.S. adults, confirms what most Americans have known all along: Many don’t get enough zzz’s at night, and it’s affecting their ability to function during the day and their overall quality of life.

The survey was funded by Pfizer Consumer Healthcare, makers of Advil PM, so not surprisingly, pain ranked as the top reason respondents often found themselves tossing and turning at night.

What was a little more unexpected, at least to me, was the extent to which physical pain and stress were interfering with the survey participants’ ability to sleep well.

Nearly seven out of 10 said they lost valuable shut-eye because of aches and pains. About half said it was because of existing pain from problems such as back injuries. One-third cited stress-related aches and pains – headaches, shoulder aches, neck aches and so on. Another 19 percent were bothered by general aches and pains from a long day, household chores or putting in long hours at work.

Stress was a huge issue for many of the survey respondents as well. Nearly half said work-related stressors were causing them sleeplessness, and 60 percent said they were often sleepless because of family and relationship stress.

Participants could pick as many issues on the list that applied to them, so it’s likely that a number of respondents had multiple problems that kept them from getting a good night’s sleep.

Most of these folks were well aware of the fallout from inadequate sleep.  Eight out of 10 said it affected their performance at work and their romantic relationships; around three-fourths said it had a negative effect on their social life and parenting ability. The vast majority of the survey participants also felt that poor sleep made it more difficult for them to manage chronic or routine aches and pains.

What would they give up in exchange for a good night’s sleep? Just over half said it was important enough for them to be willing to make a trade. Giving up an extra day of vacation a year led the list of sacrifices, followed by small luxuries such as cable TV or a housekeeper or nanny. But get this: 34 percent said they would give up sex for a month in exchange for better sleep, and 32 percent said they’d skip a raise or bonus at work.

Some other nuggets from the survey:

- Half of the respondents said a sleepless night caused them to perform poorly at work, and nearly three-fourths said it caused them to fall behind on household chores.

- Nearly nine out of 10 said that when they had a bad night, they woke up dreading a rough day ahead and didn’t want to get out of bed.

- On average, survey respondents reported six to seven hours of sleep per night.

How much sleep is enough? Experts say the answer varies, depending on age and on the individual. Babies generally need 14 to 16 hours a day. For school-aged children, it’s 10 to 11 hours.

Seven to nine hours are recommended for most adults, but it’s clear from the Advil survey, as well as others conducted over the years, that a lot of people consistently get less than this. The impact extends well beyond a difficult day at work or skipping the laundry in exchange for crashing on the couch. Studies have linked inadequate sleep with everything from depression to obesity to shorter lifespan.

One study, published earlier this year, found that lack of sleep, coupled with disruption of the body’s circadian rhythms, can make people more susceptible to impaired regulation of their blood glucose and metabolism and increase their risk of type 2 diabetes.

In another interesting study, presented last month at the American Heart Association’s 2012 scientific sessions on high blood pressure, Italian researchers followed the sleep patterns of 234 adults with hypertension. The majority of the study participants slept six or few hours a night, and those who reported poor sleep quality were twice as likely to have resistant hypertension as those who slept well.

The cause-and-effect relationship between health issues and inadequate sleep isn’t entirely clear. Do people develop insomnia because they’re depressed, or do they become depressed because they aren’t sleeping enough? Do high blood pressure and lack of sleep influence each other in some way, or are they elements in a bigger, more complicated picture?

Researchers still have a lot to unravel about sleep, how it works, what disrupts it and how it interacts with overall health. In the meantime, getting a better night’s sleep ought to be a serious goal for more folks – without having to sacrifice a pay raise or cable TV.

For treating high blood pressure, more is more

If you have high blood pressure that’s under control, you’re in good company. According to a new report from the American Heart Association, just under half of American adults with high blood pressure now have the condition well managed with medication.

This is a major improvement compared to 10 years ago, when only one out of three hypertensive adults had their blood pressure under control. The gains also underscore a growing body of evidence that when it comes to successfully treating high blood pressure, more is more: Most patients just do better when they’re taking more than one medication for hypertension.

The report appears in the Circulation journal and is based on data collected from 9,320 participants in the National Health and Nutrition Examination Survey from 2001 to 2010. High blood pressure was defined as 140/90 mm Hg or greater (130/80 mm Hg for those with diabetes or kidney disease).

As chronic conditions go, high blood pressure is common, especially in people who are middle-aged and older. Although there’s often a perception that hypertension is becoming more widespread, the overall prevalence has been more or less unchanged for many years, hovering at around 30 percent overall of the American adult population.

What does seem to be changing is that people who are hypertensive are more aware of it. They’re increasingly likely to be told by a doctor or other health care professional that they have high blood pressure, and they’re increasingly likely to be prescribed medication to treat it.

Some telling figures from a brief published in 2010 by the National Center for Health Statistics: The overall percentage of adults with high blood pressure who were aware they had the condition rose from 69.6 percent in 1999-2000 to 80.6 percent in 2007-2008. And the percentage of those being treated with medication for it grew from 59.4 percent to 71.6 percent over the same time period. (The figures come from NHANES, the same source as the new American Heart Association report.)

Important as these measures are, however, what matters most is whether these people have their high blood pressure actually under control. This metric is what the Heart Association report examines, and despite the fact that there’s still often a gap between aspiration and success, the picture is encouraging.

What accounted for all this progress? The authors single out what appears to be the key factor: the growing use of multiple drugs for treating high blood pressure. Overall, the number of study participants taking multiple drugs for high blood pressure increased from 36.8 percent in 2001 to 47.7 percent in 2010. Outcomes tell the tale: The participants were much more likely to meet their blood pressure goals when they were prescribed two or more medications for hypertension.

Significantly, the survey also confirms progress in blood pressure control in the wake of new treatment guidelines, published in 2003 by the Joint National Committee, that call for greater use of combination drug therapy to achieve and maintain acceptable blood pressure levels. In other words, doctors have been taking these evidence-based guidelines to heart when managing their patients with hypertension.

There’s room for improvement, though. In the bigger picture, about half of Americans with high blood pressure still don’t have it under control. The researchers found that thiazide diuretics, recommended as initial treatment for uncomplicated hypertension, still aren’t being prescribed often enough.

The study authors also noted some worrisome disparities: Older adults, African Americans and people with diabetes or chronic kidney disease were more likely to fall short of blood pressure goals despite treatment. “More efforts are needed to close the gap between treatment and control and to maximize the public health and clinical benefits among those high-risk subpopulations,” the authors concluded.

A cancer hero, fallen from grace

Two days after the news of Lance Armstrong’s fall from grace, I’m still not sure what my reaction should be. Disappointment? Disgust? Outrage?

Probably all three.

Not because he cheated his way to the top of the competitive cycling world, all the while steadfastly denying the doping allegations that dogged him – first in whispers, then in shouts – for years. Bad enough as this was, the real moral offense lies elsewhere: in leading everyone to believe in his amazing recovery from cancer, in accomplishing victories that inspired so many of his fellow survivors, when apparently all along his feats were artificially enhanced.

Were those Tour de France performances the real Lance Armstrong, the guy who battled back from testicular cancer that had spread to his abdomen, lungs, lymph nodes and brain, the guy who at one point was given only a 40 percent chance of survival? Or was his incredible comeback helped along by performance-enhancing drugs?

We’ll never know for sure. And in all honesty, I feel sort of betrayed by one of my own, because Armstrong and I belong to the same tribe: young adults who were diagnosed with cancer (in fact Armstrong’s diagnosis came a year after I completed treatment for lymphoma), beat the disease and returned to normal life.

The difference is that I didn’t cheat to do it while pretending to the rest of the world that my recovery was entirely the product of my own motivation and endurance. If anything, my life – like that of all too many other cancer survivors – has never gone back to what it used to be.

Truth be told, Armstrong has been a bit polarizing among some within the cancer community – not because of the long-standing doubts about whether he was doping but because he set the recovery bar so high.

This isn’t meant to diminish his accomplishments. Even without winning seven Tour de France races in a row, Armstrong would have been inspiring for his post-cancer career as a world-class cyclist – not to mention the founding of Livestrong, his charitable foundation that has done so much to offer help, hope and community to people with cancer.

Many survivors don’t fare as well as Armstrong, however. That cancer and the treatments for it are often accompanied by long-lasting and even permanent effects is one of the dirty little secrets of CancerWorld. It has only been within the last decade or so that the health community has begun recognizing this and trying to address it.

How people recover seems to be, at least to some extent, an individual outcome. Armstrong may have been better equipped than most, due to his training, physical and mental conditioning and perhaps even a genetic edge, as some research has suggested. Other survivors might not; does it mean they’re doing it wrong or not trying hard enough if they fall short of Armstrong’s level?

Perhaps the real issue has nothing to do with alleged doping and everything to do with the hero narrative. Armstrong gave us a shining example of overcoming adversity that turned out to be flawed. Maybe the correct response here isn’t outrage but forgiveness for placing the unreasonably high expectation on him of being everyone’s perfect cancer survivor superhero.

Why can’t the heroes be the survivors quietly showing up every day, working, going to school, raising families and being part of their community? Why can’t it be heroic enough to simply persevere through chemo brain, fatigue, nerve damage and the rest of the long-term cancer baggage?

For what it’s worth, it comes as somewhat of a relief that Lance Armstrong may be fading as the image to aspire to. Maybe now we can go back to more realistic expectations that embrace the still-rich human potential of life after cancer while remaining honest about the limitations.

Need health care, will travel

There’s a perception that if you live in a rural community, you have less access to health care.

But this assumption may not be entirely true, as a recent study by the Blue Cross Blue Shield of Tennessee Health Institute recently discovered.

The study, which was based on BCBS of Tennessee’s own claims data, found that nearly half of rural residents opted to go to an urban health center rather than the hospital closest to their home.

Dr. Steven Coulter, president of the Blue Cross and Blue of Tennessee Health Institute, told The (Nashville) Tennessean, “The conclusion that we came to is that we’re living in a very mobile society, and the distance is not necessarily a determinant factor in whether people get care or not.”

He added, “They drive farther to get the services, but they do get the services.”

The study makes some interesting observations but it opens the door to many more questions.

Why do rural residents travel for care? Is it to receive services that genuinely aren’t available at a smaller facility, or is it because they perceive, fairly or not, that their hometown hospital won’t have the care they need? The study didn’t look at this, and it would be enlightening to know.

What does the patient’s willingness to travel imply for rural hospitals? Perhaps they just need to do more marketing and community education about what they can offer. Then again, perhaps they’ve become out of touch with local needs and ought to reassess the services they’re providing.

This would be the simple answer. The reality is more complex and comes down to the fact that smaller rural hospitals operate with a different set of dynamics than urban centers: smaller population base, less revenue and less ability to be all things to all people.

The Tennessean considers what the impact of traveling patients might be:

The pattern isn’t new, but it raises questions about the viability of rural hospitals, some of which often don’t have the money for capital-intensive technology and services.

However, a recent increase in alliances between rural hospitals and larger hospitals and urban health systems does raise hopes that non-urban hospitals may be able to expand their menus of services.

The Tennessee Health Institute study contains another catch with some even larger implications: It only included consumers who were commercially insured through Blue Cross and Blue Shield  - in other words, those most likely to be employed and to have access to reliable transportation.

Do people covered by Medicaid or Medicare – mainly the poor and/or elderly – or who are uninsured also travel for care? Some studies suggest the average older American outlives his or her ability to drive by six years, making transportation a significant issue for older people who live in rural communities and need access to health care. And for the rural poor or uninsured, access to health care may not simply be a matter of choosing between local services and driving to an urban center; it might be the difference in whether they receive appropriate, timely care at all.

It argues for the importance of shoring up rural hospitals that frequently act as the community safety net. Although consumers are increasingly being urged to “shop” around for care, there are still many who can’t or won’t do this. Furthermore, there may also be times when care that’s close to home is as good as – or maybe even better than – care that’s delivered at a larger city hospital. When it comes to rural hospitals and rural health care consumers, it seems we shouldn’t make too many assumptions.

Sharing the doctor’s notes

The verdict on the Open Notes Project is in, and it’s everything proponents had hoped for: Sharing the doctor’s notes with patients can lead to better care.

I’ve been following the Open Notes Project with a great deal of interest. Although there’s been an increasing push for consumers to have more access to their medical record, few studies have ever examined how this could change the patient experience or the doctor-patient relationship. Even less is known about what might happen when patients are given full access to the doctor’s office notes, wherein observations, judgments, possible diagnoses and the doctor’s thought processes are contained.

Would patients find the information useful? Would it improve their care? Or would it cause undue worry or force physicians to spend more time explaining to patients and reassuring them?

The Open Notes Project, which started in 2010, is an attempt to find out. Three primary care practices, 105 doctors and 13,500 patients in three states – Massachusetts, Pennsylvania and Washington – were involved in the study, which lasted one year.

The results were reported in the Annals of Internal Medicine last week, and it was overwhelmingly clear: Patients liked being able to access the notes, they reported greater engagement in their care, and the vast majority wanted it to continue.

Most looked at the doctor’s notes at least once during the course of the study. Between 60 and 78 percent of those taking medications said it helped increase their adherence, and most also reported feeling more in control of their care.

Although some critics (mostly doctors) worry that allowing patients to see their office notes could be confusing, upsetting or possibly offensive, that wasn’t the case with the Open Notes Project. Fewer than 10 percent of the patients at each of the study sites reported experiencing this.

Moreover, it wasn’t the time sink that doctors may have feared. Fewer than 10 percent of the participating primary care physicians saw the length of the patient visit increase or had to spend more time answering patients’ questions outside the visit. Nor was there any change in the volume of electronic messages from patients. More significantly, none of the participating physicians opted out of Open Notes once the study was completed.

The time factor for physicians is very real. No matter how much patients might push for change, there’s little incentive for a medical practice to adopt new approaches if the result ends up being more time-consuming. The Open Notes study might not put this fear entirely to rest, but it provides some data to suggest that open access to the medical record is less burdensome than critics think.

The study’s authors concluded:

Patients accessed visit notes frequently, a large majority reported clinically relevant benefits and minimal concerns, and virtually all patients wanted the practice to continue. With doctors experiencing no more than a modest effect on their work lives, open notes seem worthy of widespread adoption.

In fact, more than half of patients felt they should be allowed to add their own comments to the doctor’s notes, and one in three believed they should be allowed to approve the contents of the notes before they were finalized. Not surprisingly, the majority of the doctors (85 to 96 percent) disagreed, which raises the question: To whom do the notes, belong – the doctor or the patient?

There’s a great deal of debate over how much power patients should have. One of the arenas in which the battle is waged is access to the medical record. After all, the record contains information that’s intimate and subjective; is it the doctor’s prerogative to keep sole control?

Some would say yes. Dr. Edwin Leap, an emergency-room doctor and blogger, recently lamented the difficulty of recording the naked truth. He wonders: Instead of writing dispassionately about a 35-year-old man who wrecked his moped while drunk and is now in the ER complaining about a superficial scratch, why can’t he document, “This enormous whining man-child is drunk all of the time, lost his license, and is now playing the pain card to obtain yet more mind-altering substances, which he will either abuse or sell from his mother’s basement until he is struck and killed by a large truck or slips into an Oxycodone/Xanax/moonshine coma and ceases all respiration”?

It might be truthful, at least according to the doctor’s perspective, but how would it play if the patient read that in his record? And how much of this observation is accurate vs. a subjective judgment on the part of the physician? It’s interesting to note that among the physicians who participated in the Open Notes pilot project, a bit of self-censoring may have taken place. Many reported that they made some changes in what they document and that they spent more time writing their notes.

While this may be a concern, it’s not significant enough to conclude that opening up the doctor’s notebook to patients is a bad idea, writes Michael Meltsner, who penned an accompanying patient perspective to the Open Notes study in the Annals of Internal Medicine.

In fact, the clear value outweighs any of the negatives, Meltsner concludes. Patients aren’t served well when information is kept from them, he writes. Although the truth may cause anxiety, “pain and anxiety are part of the human condition and are as likely to be produced by a sense of ignorance and powerlessness as by knowledge. The difference turns on who decides.”

Moreover, giving patients access to their full medical record can help them become more engaged in their care and more accountable for their health, Meltsner writes. “The benefits that come from a greater flow of information hold considerable promise for creating a healthier society, a result that is plainly worth the costs.”

Read more about this issue: Letting patients read the doctor’s notes; Open notes and what else is new?; Open Notes: The results are in.

Men in pink

Amid October’s pink tide of breast cancer awareness, there’s one demographic that’s all too often overlooked: men with breast cancer.

Yes, guys get this disease too.

I was reminded of that fact earlier this week when the Mayo Clinic tweeted a link to a story that appeared a few years ago in the Sharing Mayo Clinic publication. It’s the story of Craig McMillan, a 59-year-old insurance agent from Florida who was diagnosed with breast cancer in 2004 and underwent a double mastectomy followed by chemotherapy and radiation.

Was it a shock? Absolutely. “Like most men, I thought it was a women’s disease, so I was in denial and didn’t think it could happen to me,” McMillan told the Mayo magazine.

His wife, Jane, said she had never even heard before of breast cancer among men. “After the diagnosis, we found out that three other men we know have also survived breast cancer,” she said. “I guess this is an issue that men just don’t like to talk about.”

Some facts about male breast cancer:

- It’s rare, which may account for why many people remain unaware of it. About 2,000 new cases are diagnosed in the United States each year, and about 400 men die of male breast cancer. To put it in perspective, men account for about 1 percent of all new breast cancers annually in the U.S.

- The cause remains unknown. Research suggests that acquired or inherited gene mutations may play a role – primarily the BRCA1 and BRCA2 genes, which are thought to be a factor in 5 to 10 percent of breast cancers among women. Men with either one of these genes face a higher lifetime risk of breast cancer but apparently less so than women with one of the BRCA genes.

- As with women, the risk of breast cancer among men tends to increase with age, family history (McMillan’s grandmother and sister both had breast cancer, and both his parents had lung cancer), heavy drinking and estrogen treatment. There also seems to be a link with environmental exposure, such as medical radiation or occupational exposure, although more research is needed on how strong this link might be for male breast cancer.

- Treatment options are the same for men as for women: surgery, radiation, chemotherapy, hormone therapy and some of the newer targeted therapies.

- Breast cancer actually is easier to diagnose in men because they have less breast tissue, making lumps easier to spot while they’re still relatively small. Lack of awareness, coupled with embarrassment, is more likely with men than with women, however, and can lead to delays in diagnosis and treatment. Also, male breast cancer unfortunately doesn’t need to grow very far to spread to nearby tissue or lymph nodes, which means their cancer may be at a more advanced stage by the time it’s diagnosed.

- Men with breast cancer seem to have better survival rates than women – but survival for male breast cancer has been increasing at a slower rate than for female breast cancer.

- Men are not well represented in the research on breast cancer. Much of what we know about male breast cancer stems from studies made up mostly of women who have the disease.

How men fare emotionally when they go through diagnosis and treatment for male breast cancer seems to be similar to anyone else who has cancer. After all, much of this terrain is universal, regardless of gender, age or diagnosis. But it surely must be more complicated, and more isolating, for many men. It’s hard to picture how comfortable they might feel as the lone guy at a mammography center. Are they marginalized by the symbolic pink ribbon – and if so, does this make their experience more difficult than it needs to be?

if ever there was a case to be made for avoiding one-size-fits-all approaches to how we talk about cancer and how we respond to those who have the disease, this would be it.

Mutiny in the lunchroom

In “We Are Hungry,” one of the latest You Tube videos to gain widespread attention, high school students are turned away empty-handed from second helpings in the cafeteria, collapse during volleyball practice and daydream in class about their mother’s mac ‘n’ cheese.

There’s a mutiny brewing against the increasing regulations and restrictions governing what’s served to kids in the school lunchroom. The target of much of this groundswell of ire? The Healthy, Hunger-Free Kids Act of 2010, which limits school lunches to 850 calories, reduces carbohydrates and emphasizes loading up on fruits and vegetables. The standards took effect in August – and for many kids and their parents, it has been a rude awakening.

The protest video was made by students at Wallace County High School in Sharon Spring, Kan., who’ve had it with restrictive school lunches, which they say leaves them hungry and struggling to function in school.

Here’s how the Healthy Hunger-Free Kids Act has changed school meals: Before, lunch for an elementary student might have consisted of a slice of cheese pizza, half a cup of Tater Tots with ketchup, one-fourth of a cup of canned pineapple and eight ounces of low-fat milk. The same lunch, revamped: a slice of whole-wheat cheese pizza, half a cup of baked sweet potato fries, half a cup of applesauce, a quarter-cup of raw cherry tomatoes and low-fat milk. (Click here for other examples.)

“The size has gone down and I leave lunch hungrier than before I tried to eat anything,” one student lamented online at YouTube.com. “The food they offer at our school is NOT ENOUGH!” another student declared.

A school cafeteria manager weighed in at an online forum with her frustration over the new guidelines. Schools are being asked to introduce foods such as tofu, hummus and more beans, and the kids won’t eat them, she wrote. “They have all gone into the trash.”

Even some teachers are speaking up. Linda O’Connor, a high school English teacher in Sharon Spring who wrote the lyrics for “We Are Hungry,” told U.S. News and World Report, “I have been a teacher for 20 years, and this is the worst that it’s ever been. Our kids eat at 12:06 p.m., and they are hungry by 1:30 p.m.”

What’s a healthy number of daily calories for a child or teen? According to USDA dietary guidelines, a moderately active girl between the ages of 9 and 13 should consume 1,600 to 2,000 calories a day. An active teenage boy, on the other hand, needs 2,800 to 3,200 calories a day.

If you do the math, an 850-calorie school lunch would fulfill 25 to 50 percent of these needs, depending on the student.

You could argue there’s nothing wrong with serving more fruits and vegetables in the school cafeteria and downsizing portions into something less super-sized. Over time, kids and their parents will get used to it. After all, the Kansas students in the “We Are Hungry” video aren’t literally starving – and what about those stashes of chips and other snacks in their lockers?

The other side of this argument is that kids are a captive audience and one size shouldn’t fit all. Should students be expected (some would say forced) to eat school lunches they might truly dislike or not be able to tolerate? I’ve heard anecdotally about kids suffering through intestinal turmoil because their digestion is unaccustomed to the whole-wheat fare served at school.

Attempts to put more healthful, exotic food on the menu can flop when kids won’t eat it, as the Los Angeles school system discovered last year when it introduced entrees such as vegetarian curry and quinoa salad. Many students refused to eat it; instead, they loaded up their backpacks with snacks and soda. Meanwhile, uneaten food ended up in the trash. And what about kids for whom school lunch might be the most substantial meal they eat all day?

Finally, the evidence is mixed on whether healthier school lunches actually make a difference in what kids eat. In one of the largest studies to date, the impact was moderate at best. Other studies have found that simply redesigning the lunch menu isn’t enough, and that efforts need to be accompanied by other components such as nutrition, family education, activities that engage children’s interest in the food being served, and even the return of recess and gym class.

How about it, readers? Do you think the new school lunch guidelines have gone too far?

The missing voice in patient safety

Patients and families are often surprisingly observant of the care they receive. They notice when test results fall through the cracks or something isn’t followed up. They can tell when doctors, nurses and the rest of the team don’t seem to be communicating very well. And they certainly notice when their own input is ignored or dismissed.

A proposal by the Obama administration would harness what patients know by creating a system for them to report errors and close calls in their care. The information would add to what’s already being reported by hospitals and clinicians and broaden the ability to improve the safety of care.

I can think of only one criticism: Why did it take until 2012 for something like this to be proposed?

Although health care has become much more intentional and focused about patient safety, consumers – who bear the brunt of unsafe care – have had few formal mechanisms for identifying potentially unsafe situations or reporting outright mistakes. As a result, an important source of information has remained mostly untapped.

The New York Times explains what patients and families can bring to the table:

Federal officials say that medical mistakes often go unreported, and that patients have potentially useful information that could expose reasons for drug mix-ups, surgery on the wrong body part, radiation overdoses and myriad other problems that cause injuries, infections and tens of thousands of deaths each year.

As you might expect, reaction from health care providers has been mixed. Many are very receptive to the idea and believe it will give them a better perspective on errors and close calls that would otherwise go unreported. Indeed, multiple studies suggest hospital mistakes are significantly underreported; sometimes adverse events are entirely missing from the patient’s medical record. An understanding of the numbers and types of patient safety issues associated with care delivered in the doctor’s office – and how to address them – also is still in its infancy.

Supporters of the proposal believe a reporting system designed for patients will help capture more of this information and fill in some of the gaps.

Others think it’s a bad idea. One of the arguments: Patients won’t be able to discern whether a perceived error is actually standard procedure, hence could flood the system with baseless complaints.

The Association of American Physicians and Surgeons, a group that has gone on record against the Affordable Care Act, issued a statement last week calling the proposal misguided, politically driven and likely to foster an adversarial relationship between doctors and patients.

The whole question of whether to report or not to report medical errors to a national system remains a thorny one. Consumers do in fact have other options if they perceive their care is unsafe or an error occurred. They can complain to the doctor, report it to the hospital, report it to the state or file a formal complaint with a medical practice board or board of nursing.

Talking to the provider may not satisfactorily resolve a complaint, though, especially if there are differing perceptions about what happened, documentation is lacking or the provider simply isn’t very good at dealing with problems related to safety or quality of care. Formal complaints to a licensing authority are a serious step to take and may not always be warranted.

The real issue is that patients much of the time aren’t given a meaningful voice in identifying the safety problems they encounter in their care. Moreover, the system often falls short when it comes to encouraging patients to speak up about their experiences.

In a project launched this past summer, ProPublica began collecting survey information and stories from people who were harmed by their care. Some of the themes that have emerged: Even when they have valid grounds for doing so, most people do not file formal complaints because they’re often traumatized, disabled, don’t understand how the bureaucracy works or don’t even realize an error occurred. Sometimes they feel intimidated by providers; other times they feel social pressure not to complain. Often they find the complaint process unsatisfactory because nothing came of their efforts.

How much information might have been lost because these people didn’t speak up, and how likely is the same harm to occur with other patients because no one knew about it or had an understanding of the total picture?

A national reporting system designed for patients and families won’t cure everything that’s unsafe about American health care, but it seems like a good way to start listening to patients and learning from what they’ve experienced.