The positives of HIV testing: A tale of two cultures

Last week, we hosted a live online discussion about essential community building blocks for breaking the links between poverty and poor health outcomes. And the need to think creatively is perhaps strongest in local HIV/AIDS prevention initiatives. Cultural pressures, health myths, and access issues can hamper engagement and progress and yet, two campaigns are making strides.

The Many “Reasons” to Get Checked

Putting a positive spin on HIV testing for young men at high risk for the disease may be a daunting task, but culturally poignant messages may go a long way towards selling the value of getting checked.

Manuel Rodriguez manages the “Reasons” program for the non-profit development strategy organization FHI 360.  Reasons is a messaging campaign that aims to get Latino men who have sex with men to undergo testing for the HIV virus.  It comprises social media outreach, print, t.v. and online advertisements, and presence at gay pride events, and currently focuses on cities with many members of the target population, including Miami, Los Angeles and New York.

 

“We all have a reason for getting HIV tested,” the ads say, including words like love, life, family and pride.

Rodriguez says Reasons aims to touch on the strong sense of community in the Latino culture, which holds whether one is a first-generation immigrant or has lived in the U.S. for decades (Rodriguez was born in Caracas,Venezuela.).

“We incorporate family and friends, and the importance of protecting your partner. Mom is a very big figure in Latino culture, so some of the messages are, ‘I’ll do it for my mom to make sure I’m going to be there for her,” Rodriguez says.

Another hallmark of the effort is its positive, not punishing, slant.

“We see this as a new way to communicate because it comes from a positive and empowerment framework, instead of, ‘You must do this, because you do that.’ It’s more of a value-driven proposal.  ‘You can control it.  You can prevent it.’

“As a person, your value as a member of a family and your community is health. To be there for them is to take control of your health,” he says.

Rodriguez says impact of the year-old program is measured so far in the millions of online website views and by a big bump in social media interactions since the program launched. The program has conducted strategic online listening activities to fine-tune campaign messages. Some findings include that some Latino gay and bisexual men see testing as the right thing to do, and they go as far as to share Instagrams of their test results as a badge of honor — negative results, because a positive test result still carries a stigma in Latino culture; one that Rodriguez has worked to mitigate throughout his career in public health communication.

Though Reasons has a defined target audience, Rodriguez says that its themes may turn out to be not so specific after all:

“We think at the end of all these Pride events and local mobilization, we’re going to have a story to tell. And we’re going to find out that these will be universal themes that unite us all.”

Taking Pride in Resilience

Another FHI360-managed program, Testing Makes You Stronger, is aimed at African-American men with male partners. According to Cornelius Baker, Acting Director of the HIV/AIDS Unit, Testing reflects a common ethos in the black community of ‘that which doesn’t kill you, makes you stronger.’

“It’s the messages one gets by growing up in an African American family; that of resilience, that you can survive through tough things,” Baker says. “It’s also very much that sense of pride, of having a respect of agency for the community.  People want to live well; they want to survive.  What we have to do is create an environment of support for that, and give people the tools to be able to benefit themselves,” he says.

Baker says his organization gathered input from community leaders, advocates and the Testing target audience — more than 400 black men in five cities — before embarking on the campaign.  There is also a campaign for African-American women, Take Charge: Take the Test.

Both programs are funded by the Centers of Disease Control and Prevention, which also lends its scientific and technical expertise to governments and agencies worldwide to help stop the spread of HIV.  (For more on how global health strategies are applied locally, join TEDMED’s special World Health Day Google Hangout on April 7.)

Preventing childhood obesity: It’s never too early to start

What’s the best way to prevent children from becoming obese?

While theories abound, one thing we’ve learned so far: It’s never too early to start.  A New England Journal of Medicine study last week showed that children who are overweight in kindergarten are much more likely to become obese teenagers. Other recent research suggests risks begin in the womb, and include a mother’s weight gain, blood sugar levels and smoking habits.  Risks may even stretch back generations; the great-grandchildren of a group of rats exposed to DDT had higher levels of fat and weight gain than progeny of those not exposed.

TEDMED 2013 speaker Peter Attia, an MD who conducts what his organization, NuSI, considers the most comprehensive research on the causes of diet-related diseases to date in adults, says that factors likely to trigger children to become overweight in the first place may indeed be present at birth, and are tough to surmount.

Does a typical school lunch contribute to food-related diseases?

Does a typical school lunch contribute to food-related diseases?

“Genetic factors aren’t as likely to explain changes over relatively short periods of time. The epigenetic factors – genetic factors turned on by environmental triggers – may have a lot to do with a mother’s eating behaviors while a child is in utero.  [Studies so far] certainly suggest that the quality of a mother’s diet plays a role in a child’s susceptibility to obesity and insulin resistance,” Attia says.

And these influences are only likely to grow along with a child, he says.

“There’s a whole host of systems and structures that got that child to be where they are; they’re probably related to socioeconomic status, education, and what the child consumed for the first five years of his or her life. All of those factors aren’t going to go away,” Attia says.

Communities are scrambling to catch up, and many are looking at the school environment as a logical start point. In TEDMED’s Google+ Hangout last week, Great Challenges team members and special guests discussed measures schools are taking to educate kids about good nutrition and ensure that they receive it on school premises. They include efforts to help schools procure locally grown fresh food for cafeteria lunches; on-site gardens where children harvest and study the science of food; and nutrition education and cooking classes. (Watch a video of the insights shared here.)

Will these interventions happen quickly and go far enough? Attia has hypothesized that foods high in sugar — juice, soda, candy bars, sugary cereals, and sauces — are prime culprits of diet-related illnesses like type 2 diabetes and fatty liver disease.  And right now they’re commonly available in cafeterias and on school property.

The fast rise of these ills in children – as many as seven million cases of fatty liver disease in the U.S. – should be a wake-up call that vast changes are needed, starting with improved medical research on their causes, Attia says.

“Do we honestly want to continue reiterating the same dogma for the next 30 years that says ‘Just eat less and exercise more, and if you have the right moral fortitude you’ll be fine?’

“It’s been a scientific and policy failure in adults. All you have to do is look back when the mantra started, and look at how many people were obese, and how many had type 2 diabetes, and follow through on the amount of spending that’s gone to propagating that message, and compare that to the numbers today,” he says.

What’s happening to kids also reinforces what Attia expressed in his TEDMED talk:  That we mistakenly attribute obesity and its related diseases to a failure of personal responsibility.

“ ‘People who are obese and diabetic are morally corrupt.’ We don’t come out and say that, but that’s the implication. ‘These are bad people. These are lazy people who lack discipline.’

“But do we really believe that children are morally bankrupt, lazy, slothful entities who just choose to be gluttonous?  We have a hard time believing that for a five-year-old,” he says.

- Stacy Lu

Examined Lives: The Wooden Box

By Barry J. Jacobs

On a scorching day at my step-father’s graveside, I stood slightly outside the circle of 20 mourners, present but distant. In my hands, strange to me, was the wooden box.  I wasn’t thinking about its contents of bone cinders and fine ash but of the surprising coolness to the touch of its dark mahogany veneer and polished brass latch.  I listened impassively to my step-sister’s tearful remembrances of her party-boy father and to her cousin’s choked sobs recalling her favorite, most loving uncle. I had promised myself–especially during his decline from dementia–that I wouldn’t speak at his funeral on his behalf. So I stood watching in silence now, holding tight to his box of cremains.

wooden_boxAt the time he married my mother when I was 17, he had little interest in me or use for my impudence. For my part, I hated his sullenness when sober and boisterous prejudices when drunk—so unlike my deceased father. We learned to give each other wide berth, maintaining a tepid cordiality punctuated by infrequent clashes. This worked for over 30 years until he started losing his mind. Because I am my mother’s son and a clinician specializing in treating families dealing with illness, I felt it was my duty to assist my mother with the caregiving. That brought me into greater contact with not only him but many difficult feelings. Like many caregivers before me with a history of bad family relationships, I felt with fresh intensity the old resentment I held for the man I was now committed to helping.

In his last three years, I moved my step-father and mother up from Florida to live in an apartment a mile from me and my family. I went about the enervating business of seeing them several times a week for meals and doctor’s appointments. I visited him (irregularly) after he was placed in a nursing home. To deal with caring for someone I’d long detested, I had to shut off all of my feelings. I had to be rigidly self-contained, keeping up the polished veneer of the grimly resolute caregiver to coolly carry out my joyless caregiving efficiently. On the outside, I myself became a kind of wooden box. Inside, though, I felt empty of purpose and energy at times. I burned with anger, at other times, towards the hostile man he’d been and the vexing burden he’d become.

This was exactly what I always counsel family caregiver clients to strive to prevent—to not lose one’s self during caregiving, to not turn wooden and callous just to keep difficult emotions in check. But it seemed so much easier to completely shut off. What possibility could there be for resolving my past feelings with this vague, addled man in life or death? Yet even as I stood there silently on that July day, I felt a bit chagrined. I was in a responsible enough position at this auspicious moment to closely grip his box. Yet, dreamy in the hot sun, I held myself as far away from the unfolding scene as my psyche would allow.

And then someone suddenly whisked the wooden box from my hands and nestled it into the shallow, open grave. Others cried; I was too shut off to react. As part of the Jewish funeral ritual, a line formed to shovel dirt over the box but I stood there in a daze. I finally snapped to attention when I saw my 17-year-old son grab the long-handled spade. If he could do religious duty for a step-grandfather he hardly knew, so could I. I got into line and went through the motions of helping bury my step-father.

But though his ashes went underground, I didn’t entirely bury him. For too long, I did too good a job of shutting off and not processing what I felt. Six months after his death, I haven’t shaken all the woodenness. Hard as I try to come to terms with my relationship with him and put him to rest and myself at ease, I still find the box sealed. I’ve wound up carrying its weight and burden still. My hands still tightly embrace it.

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Barry J. Jacobs, Psy.D. is a clinical psychologist and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. A TEDMED Great Challenges Team Member for The Caregiving Crisis, he is the author of “The Emotional Survival Guide for Caregivers—Looking After Yourself and Your Family While Helping an Aging Parent” (2006, Guilford) and the forthcoming “Caregiving Family Stories & Beliefs,” a collection of 25 of his previously published essays and case stories on families and illness.

This post originally appeared on the Collaborative Family Healthcare Association’s Families & Health Blog.

Examined Lives: A teenager’s long journey to mental health

By Alexa Ellenthal

My whole life it has been apparent that I am different. Some would even say that something is wrong with me.

I was a weird kid (I was highly precocious and inquisitive to the point that it was obnoxious) and my parents started taking me to a variety of specialists, mostly psychologists, and getting me tested when I was about six. At first the diagnosis was ADHD. The doctors and my parents started medicating me for it. Then they realized I had a mood disorder, too, and put me on pills for that. I remember my near-daily tantrums in first grade. I remember feeling like a zombie for most of second grade. All through elementary school they were putting me on different medication cocktails, taking me from doctor to doctor, hoping by some magic the pills would make me a normal kid or one of the doctors would be able to understand me.

shutterstock_53312143When I was nine I had my first major depressive episode. I was being severely bullied and it really got to me. I also developed insomnia. I would stay up late into the night crying, not even being sure why I was so upset. That’s when “mood disorder not otherwise specified” (MDNOS) morphed into depression in my medical records. The problem was that I was feeling impossibly sad and hollow and unmotivated, and because I was so young, I couldn’t always relay what I was experiencing in a way others could understand. That’s the problem  doctors have to try to diagnose patients based on introspective ramblings, symptoms, observations, but they only really know what their patients tell them and even then, they don’t know anything for a fact because patients might lie or omit some key details.

I was a difficult child, and not a particularly trusting one. I didn’t just open up to strangers who were being paid to listen to me and decide how to deal with me. I also didn’t understand why it was so important to talk to them. So they guessed at my condition, putting me on meds that zapped my emotions, or that made me either severely under  or significantly overweight. It was confusing and overwhelming, and by the end of middle school I’d been through at least a dozen doctors and probably just as many medicines. It’s so hard to find not only a good doctor, but also a doctor you click with. Especially as a young child, when most of them condescend to you, and even if you point out to them that you’re young, not stupid, they’ve still got you drawing pie charts of your emotions and playing with miniature Zen gardens.

-1I had developed severe body image issues due to med-induced weight fluctuations and my self-esteem was frighteningly low due to the bullying I endured daily, as I had been since kindergarten. Elementary school aged children are like lemmings; if one walks off the cliff, the rest follow; and if one picks on the bossy, weird, nerdy girl then the rest do the same. I started reading a lot of books about eating disorders and visiting websites like sixbillionsecrets and learning about self-injury and other such horrors. When high school rolled around, I got really stressed and my own practices of self-injury began. I used thumbtacks and paper clips to hurt myself, and I starved and binged and tried to purge but nothing ever came up. Things got worse.

The real depression hit, though, around late fall of my sophomore year in high school. I was seeing a psychologist whom I liked, but I never let her see how bad of a place I was in. She threw in a couple more diagnoses to my ever-expanding list: Anxiety and obsessive-compulsive disorder (OCD). As a nervous compulsion, I started pinching my skin, leaving ugly, moon-shaped scabs and scars. I started missing a lot of school and trying to lose myself into other worlds and lives, sleeping a lot (for the dreams) and reading a lot of love stories (for the happy endings) and watching a lot of emotional TV shows (to feel something). My grades slipped and so did my façade of happiness. My peers began to notice that something wasn’t right with me, my friends were always asking what was wrong, and my parents, who had been under the impression that I was recovered, started noticing my symptoms.

Then it all started again, with going from doctor to doctor and pill to pill. My parents had me see this one awful woman who I’m quite sure truly hated me and tried to say I was bipolar, called me manipulative, said I was faking and said my mom was stupid for believing me and a bad parent. It was a psychiatric horror story. Going into junior year of high school I was beyond stressed and self-harming pretty badly; my eating habits were totally screwed up and I was positively miserable. I didn’t want to exist. As the holiday season set in, suicide weighed on my mind more and more.

Then, one Friday night in mid-December, I arrived at a friend’s house only to be greeted with the news that a boy I had been friends with two years prior had died. He had killed himself. In the wake of his death there was utter devastation. I saw what a suicide did to a family, to a community, to the friends of the deceased. I chose to live. I didn’t think the world could afford to lose us both. I went to a psychiatric hospital a month later for my depression and self-harm. I kept the eating disorder to myself. The hospital brought in guest speakers  former patients who had recovered and begun living happily, and they had us do a lot of art therapy. We went to the gym every day and sometimes there was animal therapy, where they brought dogs in for us to pet and play with. We also set recovery daily goals and discussed whether or not we were successful at the end of each day. Since being discharged, I’ve been in therapy two to three times per week. I have started dialectical behavioral therapy, which I find immensely helpful. I finally have medications that work for me. I do group therapy, which is awesome.

But then, on the first day of school this year, a sophomore killed himself. I realized that the problem was bigger than me, and bigger than Henry. It is a challenge that so many people face. It is something that so many people suffer through silently. They’re ashamed of their illness due to the stigma that society attaches to being mentally ill, or their family rejects the idea that they could be sick because they perceive that as something being wrong with the person.

According to the National Institute of Mental Health, more than one in four adults suffer from some sort of mental illness. And many people can’t get the help the need and deserve, due to the shame put upon those of us who need this sort of help, as well as the exorbitant cost of mental healthcare. I want to change that. I want people to understand what it’s like to be mentally ill or bullied and I want the people who are suffering to know how far from alone they are. I still want all of that. That’s why I started You Never Know Who, an online community for kids struggling with mental illness. That’s why I’m writing my novel, which is about a 16-year-old girl trying to recover from a major depressive episode while struggling with several other disorders. The main character is based off of not only my own experiences, but also those of the many girls and young women I interviewed about their struggles. I want to educate people about the reality of mental illness. I want the mentally ill to know that there’s nothing wrong with who they are and they aren’t alone. I want people to move on from their struggles the way I’m moving on from mine.

Alexa Ellenthal will be a guest at TEDMED’s Great Challenges Google+ Hangout this Wednesday, December 18 at 2:00 pm EST.  Join us to discuss how mental health treatment is being integrated into primary care.

Live Online Event: Prescribing treatment in patient context

Mr. Hypothetical visits the doctor for an ailment. His doctor’s diagnosis is spot-on, the treatment plan comprehensive – but he has a less than positive outcome. Why?

It turns out Hypothetical was unable to afford the range of medicines his doctor prescribed. Plus, his car was in the shop for another week, so he wouldn’t be able to attend physical therapy. He never set up an appointment with a specialist for the same reason, and his referral window closed.

Contextual errors, a term coined by Saul J. Weiner, MD, of the Institute for Health Research and Policy at the University of Illinois, are clinical failures to spot issues like financial or emotional difficulties that may prevent a patient from following a treatment plan  paying for medicine, for example, or physical deterioration, or life stress that just won’t allow room for solving yet another problem.

In one recent study Weiner led, addressing measured contextual factors improved health care outcomes in 71% of patients studied, compared with 46% of those with factors not addressed.

Doctors sometimes miss signals indicating that patients may have problems complying with a treatment plan.

Doctors sometimes miss signals indicating that patients may have problems complying with a treatment plan.

Weiner is exploring and identifying ways to improve how physicians individualize treatment decisions, including studies on how well clinicians retain information from patient interactions. The goal is to move healthcare to widely adopt what’s become known as “patient-centered decision making.”

As well as improving clincian-patient interactions, other interventions may include human help along each step of a care plan. Accolade has built a growing business of providing personal health assistants to the employees (and their families) of large self-insured companies. The assistants, about two-thirds of whom are nurses or social workers, work one-on-one with employees and their families to walk them through benefits and care decisions.

Alan Spiro, MD, Accolade’s Chief Medical Officer, says taking a broad view of a patient’s circumstances is key to helping him or her stay well or heal.

“When I was a doctor I quickly learned that a critical issue for my patients was not just the proper diagnosis; it was also all of the other factors in their lives when they had to deal with that illness. The psychosocial, financial and spiritual elements that are so critical to living become harder when you or a family member is sick,” he says.

The company has done much research on the process of healthcare decision making to identify why questionable decisions or wasteful care happens, he says. Financial constraints are among the reasons many patients reach out for assistance. These issues, coupled with barriers like transportation and work or family obligations, if not addressed, can contribute to overly hasty and emotion-laden decisions.

“Lower-income patients may call because they don’t understand their benefits and don’t know what something is going to cost them. We get calls literally from the parking lot of emergency rooms asking about benefits,” he says.

Accolade has seen a large reduction in hospital readmission rates, which they attribute to health assistants’ frequent check-ins with recently released patients.

“In the real world, people leave the hospital sick – you’re just not sick enough for hospital care. You’re frightened; you often feel alone. Maybe you don’t go to the pharmacy or for follow-up appointments,” Spiro says.

Doctors Spiro and Weiner will be our special guests for this week’s Great Challenges Google+ Hangout: Connecting the Dots in Patient-Centered Care. Join us Thursday December 5 at 2PM ET for this live online event. Tweet questions to #GreatChallenges and we’ll answer as many as we can on air. Sign up today or learn more.

Examined Lives: On World Diabetes Day, one patient’s story about the power of taking control of her own wellness

By Amy Lynn Smith

I’m about to celebrate 25 years of living well with type 2 diabetes. I say “celebrate” because I choose to celebrate how far treatment has come, and all the places it still can go to make this disease even easier to live with.

Most important, I choose to celebrate that type 2 diabetes is a chronic condition that’s largely up to me to manage. There’s nothing more empowering than knowing I can be in charge of my own health.

Living with diabetes isn’t a path you can walk alone

My initial diagnosis knocked me over. But I quickly realized that I could either take care of myself or suffer the consequences.

I did my best. I followed healthy eating plans and exercised. I took my medications as prescribed — medications that have improved significantly in the last 25 years. I saw my primary care physician and endocrinologist regularly, and they made adjustments to my medications that would help improve my blood glucose control for a while.

But it wasn’t enough. There were times I felt discouraged and lonely in my quest for wellness. And I became increasingly frustrated with my doctors’ frequent unwillingness to look at the big picture — to see me as more than a person with diabetes.

Diabetes is only one facet of my health

I’ve been lucky. I haven’t developed any serious complications after nearly 25 years. But despite good overall diabetes control, I still found myself struggling to feel my best. I was battling frequent bouts of insomnia and sometimes overwhelming stress, which aggravated my fickle gastrointestinal system. Other than occasional lifestyle recommendations, my doctors were all quick to reach for medication as a solution.

I asked for nutritional guidance and didn’t get much of it. I asked about my struggle to deal with stress, and they largely ignored the role stress can play in the management of diabetes and overall health.

Most of the time, they’d do some blood tests, give me some orders to exercise more and watch what I eat (without any specific direction), write a prescription, and send me on my way. This approach was anything but empowering.

Chronic disease is the intersection of so many of the Great Challenges of health and medicine: stress, sleep deprivation, the evolving role of the patient, whole-patient care and medical communication, at least for me. My care providers weren’t recognizing that. I knew it was time for something new.

Finding an approach to care that works for me

During my search for better ways to manage my diabetes, a friend who works in healthcare told me about functional medicine. According to the Institute for Functional Medicine (IFM), it’s an innovative approach to medical care that uses the latest medical research to develop personalized care for each patient based on his or her unique environment, lifestyle, and genetic background.

My friend had been diagnosed with rheumatoid arthritis. But after working with a functional medicine practitioner she discovered her only problem was allergies to gluten and dairy. Her symptoms quickly disappeared and she’s never felt better. “It changed my life,” she says.

It didn’t take me long to see that functional medicine was exactly what I’d been looking for. It’s grounded in the idea that chronic disease can’t be treated like acute disease — which is how my doctors, although well intentioned, had been treating me.

Here’s how Mark Hyman, M.D., chairman of the IFM, describes the difference between functional medicine and traditional approaches:

“Functional medicine is a new way of thinking about solving the puzzle of chronic disease. Current medicine is really the medicine of ‘what’: what disease do you have, what drug do I give. Functional medicine is the medicine of ‘why’: it’s focused on etiology, on causes and mechanisms. So if we can get to the root causes of disease — which, predominantly, for chronic diseases are lifestyle — and if we can address the fundamental drivers of chronic disease, which also drive our costs — then we can have a fundamentally different way of delivering healthcare, providing healthcare, and getting much better outcomes at much lower costs.”

Sure, my care providers had told me lifestyle changes are paramount to managing my diabetes, but I hadn’t found someone willing to give me the support to make the principles work for me. Until now.

I started working with a functional medicine practitioner about three months ago, and the personalized, holistic approach to care is unlike anything I’ve ever experienced. I don’t feel like I’m being “treated.” Instead, I feel like I’m an empowered partner in my own care — with the support of a practitioner who is standing at my side every step of the way. Between sessions, we exchange emails every few days to see how the changes I’m making are working.

She’s completely overhauling my diet, which I like to call it my “new fooditude.” I’ve cut out processed foods and do most of my own cooking, giving up the bad habit I’d developed of eating out far too often. Every once in a while is enough now. She’s also eliminated foods that can trigger unhealthy responses, and is adding them back in one by one to see if there are any I need to avoid for good.

Just over a month into my new fooditude, I’ve seen dramatic changes. My energy and stamina have improved, I’m sleeping better than I have in years, and when I’m faced with a stressful situation I find myself responding with a calm, clear head.

Best of all, my body is starting to do a better job of producing insulin naturally as it adjusts to my new fooditude. My practitioner has told me I’ll probably never be able to stop taking insulin, but I’ll probably need less of it over time. And I’ve already thrown two medications overboard that were doing nothing for me but masking symptoms I’ve relieved by eating better.

This journey is just beginning, and it will probably last a lifetime. But I can say this: I like where it’s headed. I finally feel like I have a care provider who is seeing the whole me — everything that makes me who I am and contributes to my sickness or health. When you consider that diabetes is something you live with every day, like any chronic disease, a holistic view is essential.

I’m more than my diabetes. I’m a multifaceted person. I’m grateful to have found a practitioner who sees me that way, and an approach to medicine that provides ongoing guidance while putting me in charge of my own wellness.

-1Amy Lynn Smith is a writer and strategist who frequently writes about healthcare. You can find her at alswrite.com or on Twitter @alswriteShe will moderate a TEDMED Google+ Hangout tomorrow, “Finding new allies in chronic disease care.” Tune in at 2pm ET for a conversation with experts and to ask your own questions.

 

Posts by guest contributors do not reflect the views of TEDMED.

NYC doctors can now prescribe fruits and vegetables

An apple a day might keep the doctor away, but she won’t mind – she might even write a prescription for it.

As reported by the New York Daily News, Two New York City hospitals, Lincoln Medical Center in the Bronx and Harlem Hospital in Upper Manhattan, are launching what’s called The Fruit and Vegetable Prescription Program (FVRx). It aims to help overweight children and their families access fresh fruits and vegetables to counter obesity and related diseases.

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FVRx works like this:  Doctors and nutritionists assess a patient’s eating habits and prescribe produce as needed. Kids and their parents are given “Health Bucks” to use to purchase produce.

“A food environment full of processed foods full of fat, sugar and salt is contributing to obesity, diabetes, heart disease, stroke, cancer, and other chronic diseases,” said New York City Health Commissioner Dr. Thomas Farley, in a press release. “The Fruit and Vegetable Prescription program is a creative approach that, with the inclusion of Health Bucks, will enable at-risk patients to visit any of our 142 Farmers Markets and purchase the fruits and vegetables that will help them stay healthy.”

The program is coordinated by Wholesome Wave, a non-profit based in Bridgeport, CT, that aims to seeks to provide locally-sourced whole foods to underserved communities. The organization has programs in 28 states and the District of Columbia with more than 60 partners implementing subsidy and incentive programs for businesses and consumers.  A similar program started in 2010 in Massachusetts has reportedly met with success.  The U.S. Food and Drug Administration also has had a Farmer’s Market Nutrition Program for women, infants and children since 1992.

As Rebecca Onie of Health Leads pointed out in her TEDMED 2012 talk, it’s difficult for families facing hardships to have the basic resources necessary to heal from illness or even to maintain wellness. Health Leads works to connect patients in need with appropriate social services. Its work stems from a growing awareness of the major role social determinants play in health.

On Thursday, September 19th, TEDMED will host a Google Hangout related to the issue of consumer behavior and food purchases. Stay tuned for more information on when to tune in, and visit TEDMED.com to learn more about the Great Challenge of coming to terms with our national obesity crisis.

Examined Lives: My Sarcoma, the story of a tumor told with art

By Jacob Scott

This is the story of a Cancer Connection I never hoped to make and also the one that has brought me the most joy.

About a month before my family and I left for the University of Oxford, my dear friend and neighbor Ray came over and asked if I’d look at this side, where an orange-sized mass was growing.

So, you know I’m a cancer doctor, so you can probably guess how this story plays out.  But before I tell you (or let Ray tell you), I want to share a bit about Ray. He’s an artist whose paintings have always struck me, and my scientist and physician friends, in similar ways.  There is just something alive about them.  Something cellular.  Something moving.

This makes sense as Ray studied biology as an undergrad, but it is also says something about the artist: that there is always something moving in his mind. At the heart of this artist is a scientist.

I’ll let him share his manifesto about his treatment, and the subsequent healing that he has found through this new project, “My Sarcoma.”

My name is Ray Paul. I am a 50-year-old artist, musician, frustrated biologist and myxofibrosarcoma patient. As of my latest scans in February 2013, I am free of detectable cancer. My next round of scans are scheduled for June 2013.

My journey begins in the spring of 2011, when I noticed a rapidly enlarging lump protruding from my left flank. Unfortunately, I fell into the category of the uninsured who wait and hope for their medical issues to resolve magically. Finally, as the mass grew to the size of an Idaho baking potato, I felt compelled to go into the local Emergency Walk-In Clinic. I was told it was likely a lipoma and I needed to find someone to remove it. After weeks of worry and several inquiries, I approached a surgeon friend who agreed, with some trepidation, to perform a tabletop resection, using local anesthesia. It soon became clear that the mass was more than a lipoma.

I was sewn up and a sample was sent to his pathologist who forwarded it to the pathology team at Moffitt Cancer Center. Soon thereafter, I received “The Call.” Shock and confusion rushed in, but curiously, were followed by a sense of calm resolve and numb determination.

I was admitted as a patient to Moffitt Cancer Center in August of 2011. I began neoadjuvant radiation therapy in September 2011, followed by a radical resection in 2012 of the 12 x 12 cm myxofibrosarcoma. In July 2012 I was diagnosed with a lung mass, and underwent a lung subsegmentectomy to remove a metastatic myxofibrosarcoma.  In November 2012 I began adjuvant radiation therapy.

During this life-consuming ordeal I have placed my complete faith and trust in my team at Moffitt, and in my physical and spiritual ability to heal. Never have I dreaded going into Moffitt. The strength and determination of my fellow patients has been humbling and has greatly increased my sense of compassion. I have been inspired to create a painting for the Radiation Department, which hangs in the waiting room.

Porpoise Song

Porpoise Song

and have donated a piece to the Integrated Mathematical Oncology Department.

Sweet Jane

Sweet Jane

I am currently embarking on a collaborative endeavor entitled “My Sarcoma” project.  I plan on combining painting, photographic images of my tumor cells, printmaking, video and music to create an exhibit that illuminates my experiences as an artist and cancer patient. I envision my art to be a prescient, visual manifestation of the battle raging within, and a powerful testament to the beauty of Hope.

As a teaser, here is a prototypical Sarcoma piece from Ray.  You can see his signature style of abstract forms detailed into cellular figures, and beneath, an H&E pathology image of his own tumor.

Ray's Sarcoma

Ray’s Sarcoma

Jacob Scott is a TEDMED 2012 speaker who blogs at cancerconnector.blogspot.com.  You can follow him @CancerConnector. You can follow Ray on Twitter at @raypaul4.

Examined Lives: The tale of the bungled biopsy

By Margaret Brunner*

In December, I went to Starsen Radiology* for my annual mammogram. They called me at the end of the month. They said I needed to come back immediately for another mammogram because they had found a suspicious mass in my right breast. So I went in that day for another mammo. They definitely saw something, and said I needed to get a biopsy done ASAP, and could perform it, f I wanted.

Of course, I panicked.  I called my Ob-Gyn to see what she had to say. The Gyn office said that Starsen* did biopsies all the time, and that it would be okay to schedule it with them. I called and set the appointment for January 7th. I’ll never forget the date.

The big day arrived and I went to Starsen for the biopsy.  I was nervous as heck. I’d never had this done before, so I didn’t know what to expect.  There were two nurses there to help me prep. Then the doctor came in to explain the procedure and had me sign a paper, of course.

The procedure, called stereotactic biopsy, was pretty painful – they said there would be “some discomfort.” They gave me a local anesthetic, but it was never enough.  Boy, was I glad when it was over.  They told me that they would send the tissue sample to the pathology department in a local hospital and that it would take about one to two days to get the results back.

The waiting was the worst part.  You start to think about horrible possibilities.  Starsen never gave me an idea of how many biopsies show a malignancy, though I did find out from another breast center that 80% turn out to be benign. I’ve been relatively healthy all my life.  So, when I got the call that I would need a biopsy, I was very worried. I kept on thinking, “What if do have breast cancer?  How am I going to tell my kids? I haven’t done so many things that I still would like to do.”

This then led me to develop hives, which happens when I’m psychologically stressed.  On day two, I called Starsen to see if they had the pathology report. Nothing yet.  Day three, still nothing.  Day four, nothing.  Day five, nothing.  Imagine my fears growing and my hives getting worse.  Day six: Starsen had finally gotten the pathology report back. It was benign!  Hallelujah!  I was so happy.

Fast forward to a week later. I get a call from Starsen, who tell me that they took a sample of the wrong area.  Are you kidding?? I couldn’t believe it.  When they mentioned risks before the procedure, they mentioned infection. They did say they might not get the right sample, but that it was very unlikely. Not only did I have to endure the pain of the procedure and many days of waiting for the pathology report, I now found out that they got the wrong area. I never found out why, and another radiologist told me the news – not the one who had done the procedure. They tried to make me go to them for another biopsy.  I declined.  I didn’t pay anything for that procedure out of my pocket – I guess insurance picked up the tab.

I wasn’t sure what I should do.  Should I see a surgeon?  I got a few names in my area. Then I talked to someone in my town and found out about a breast surgeon in Manhattan. Apparently, many women in this area have gone to see her and she is well regarded in the field. I wanted to see someone who really knew about breast issues.  I finally got to see her on February 6th.  Because the mass was so far back in the breast, she recommended another stereotactic biopsy, instead of surgically getting a sample of the suspicious mass.  But she said she wanted the radiologists at her location do the biopsy. That was fine with me.  I loved the breast surgeon.  She was a kind doctor.

On February 12th, I went in for my biopsy.  What a different experience.  There were two nurses there for my procedure, but they really “held my hand” to tell me what was going on and what they needed to do during the procedure.  I really liked that aspect.  I also got to meet the two radiologists who were working on my case.  They introduced themselves to me beforehand and told me what to expect during the procedure.  And they gave me their phone number in case I had questions.

After the procedure, the radiologist got another image to make sure they got the right area. The radiologist in New Jersey hadn’t bothered with that.  I loved the radiologist who performed the biopsy.  She kept asking how I was feeling. Although she gave me a lot of lidocaine, I still felt quite a painful tug and pull during the process.

They sent the sample to their pathology group and said to expect the report within 24-48 hours.  After my last experience, I was very skeptical about getting it that soon.  I was ready to wait six days again.  But boy, was I wrong.  The pathology report came back incredibly quickly – 24 hours!  And happily, it was benign!

If I had to do it over again, I would have found a doctor that other women have seen and speak highly of.  I would asked my friends right away to see if they knew of a good doctor.  Telling my friends also helped relieve the stress of worrying about whether I had cancer. My friends are truly one my pillars of strength.

*Names have been changed to protect privacy.

Visit TEDMED’s Great Challenges website to discuss how to eliminate medical errors.

What’s your definition of stress?

This guest post is by Benjamin Miller, PsyD, Director of the Office of Integrated Healthcare Research and Policy at the University of Colorado School of Medicine.

Stress. You’ve experienced it. Chances are, even as you read this blog, you are in the process of experiencing it. No, not that reading blogs is inherently stressful, but rather because we live in a society that is go, go, go. We move at breakneck speed always aware of the next deadline we must meet or the next place we must be. We are a society on the move. What happens when too much “need to” starts to wear on us? What happens when we start to feel a bit overwhelmed like we just can’t take on one more thing? How do we respond?

Well, rest assured, you are not alone. According to the American Psychological Association’s 2012 “Stress in America” survey:

  • Americans report their mean stress level as a 4.9 on a 10-point scale where 1 means “little or no stress” and 10 means “a great deal of stress,” while they define a healthy level of stress as a 3.6 on the same scale. Twenty percent of Americans report stress levels that are extreme (an 8, 9 or 10 on a 10-point scale).
  • The most commonly reported significant sources of stress include money (69 percent), work (65 percent), the economy (61 percent), family responsibilities (57 percent), relationships (56 percent), family health problems (52 percent) and personal health concerns (51 percent).
  • Only 17 percent of those with high stress say that they are doing an excellent or very good job of managing their stress, compared with 59 percent of those with low stress and 37 percent of Americans nationwide.

These data help shine a light on an often dark corner in healthcare – the role of stress. Before we dive any deeper on the topic, let’s define what we are talking about here. According to Merriam-Webster, there are no fewer than six different definitions of stress.

Rather than pick one of these definitions, I would like to propose a more simple definition for us to consider – stress is change. When you read through all the various definitions of stress in the dictionary it becomes quite clear that whether good or bad, stress is something happening to us within our environment.

With this definition in hand, let’s begin to consider how stress plays a role within health and healthcare. Like many things in healthcare, we try to separate out stress; we try to isolate it as its own entity when in reality this could not be further from the truth. You see, stress, whether you identify it or not, is having an impact on your health. For example, over thirty years of research examining the effects stress on cardiovascular health have suggested:

  • Chronic stress related to work and/or one’s personal life is associated with a 40-50% increased likelihood of coronary heart disease.
  • Those already diagnosed with coronary heart disease have poorer prognoses if they have more work-related stress and social isolation.
  • Increased risk of heart disease is now thought to be due to repeated and long-term stress on autonomic and inflammatory processes.
  • This persistent long-term stress in the workplace, in particular, has been found to impact health and has been characterized as both 1) high psychological demands such as multiple responsibilities with high productivity demands, and 2) low personal control and restricted ability to make decisions.

The costs of stress to you, the consumer, and to the healthcare system are exorbitant:

  • Over $300 billion is spent in legal and insurance costs, and reduced productivity, absenteeism and turnover due to job stress.
  • Healthcare spending was 46% higher for workers with high levels of stress.
  • An estimated $2 trillion in annual healthcare costs are due to the management of chronic diseases, which are largely contributed by chronic stress.

Now, consider that we have novel ways to treat stress.

Meditation for stress reduction programs are demonstrating long-term health improvements. In a recent five-year study examining Transcendental Meditation, participants experienced a 48% decreased risk of stroke, heart attack, and death, as well as reductions in blood pressure, stress and anger.

Laughter and learning to take yourself less seriously are approaches that are also receiving more attention for reducing stress and improving health. Humor is known to release endorphins, those feel-good neurochemicals, and reduce circulation of stress hormones. Laughter Yoga Clubs, which combine laughter and yogic breathing, are becoming more popular at companies and colleges worldwide.

More generally, positive thinking is thought to improve immune function and coping with pain, and reduce incidence of depression and overall distress.

“How stressed are you today?”

I remember once working in a primary care practice where every patient was asked the same question: “On a scale of zero to ten, how stressed are you today?”

The answers were always telling, and would in some ways predict how the rest of the visit would go. For example, if a patient said:

“Well, you know I have been feeling a lot of deadlines at work recently. I just haven’t been able to relax as much as I used to. These deadlines have kept me out of the gym, too, which is one way I always fought off my stress. Right now, I would say I am a 7 out of 10.”

With a patient like this, it was fairly obvious that they knew what the stressor was, knew possible solutions on how to manage it, and saw the entire issue pretty clearly. Other patients, on the other hand, were not as insightful.

“On a scale of zero to ten, how stressed are you today?”

The patient, calm, cool, and collective, would look at you straight in the eye and say “zero”. It was during these moments that you knew something was really going on; because, let’s be honest, who has no stress in their life? How do you manage change in your life? How do you identify “stress”?

Follow Ben Miller @miller7, and watch him moderate our Great Challenges live event about  coping with the health effects of stress on Thursday, March 14th at 1pmET.