A Pop Health Book Review of “In the Kingdom of the Sick: A Social History of Chronic Illness in America”

In 2009 I read "Life Disrupted: Getting Real about Chronic Illness in Your Twenties And Thirties".  Since the book inspired me personally and professionally, I was delighted that Twitter enabled me to connect directly with the author Laurie Edwards.  I was even more delighted when she asked to interview me for her new book, "In the Kingdom of the Sick: A Social History of Chronic Illness in America".  Since Pop Health focuses on health communication and the coverage of public health issues in the media, we had plenty of mutual interests to discuss!

"The very nature of chronic illness- debilitating symptoms, physical side effects of medications, the gradual slowing down as diseases progress- is antithetical to the cult of improvement and enhancement that so permeates pop culture." 
("In the Kingdom of the Sick", page 34)

Early in the book, I found this quote incredibly powerful.  It is true.  Our society values and spotlights those that overcome adversity- those that inspire us- those that beat the odds.  Before his fall from grace, we can all remember the worldwide cheering for Oscar Pistorius- making history last summer for being the first double-amputee to compete in the Olympic games.  Edwards highlights those societal values in her book by drawing on the imagery found in many commercials for breast cancer research and fundraising.  Those commercials show an unforgettable image, a "cancer survivor triumphantly crossing the finish line in her local fund-raising event surrounded by earnest supporters."  That triumphant image is a far cry from what Edwards and colleagues term the "Tired Girls" (i.e., female patients suffering with "invisible illnesses" like fibromyalgia, chronic fatigue syndrome, and migraines).  "The Tired Girl stands for so much that society disdains:  weakness, exhaustion, dependence, unreliability, and the inability to get better" (page 103).

The good news is that many of the "Tired Girls" (and Guys) are getting connected and getting empowered.  Edwards dedicates a significant portion of her book to the discussion of "patients in the digital age."  She describes the emergence of "e-patients" (those that are empowered, engaged, equipped, enabled) and how they are using technology to actively participate in the development of their care plans, connect with patients with similar diagnoses, give voice to their experiences, advocate for policy change, and debate controversial topics like vaccinations.

As a public health professional with significant interest in health communication, I was fascinated by a recurring theme that Edwards highlights from these conversations among empowered patients and writers:

"How does language influence the illness experience?"          

The reader is led through an intriguing discussion of the use and implications of terms such as:

• Illness vs. Disease
• Illness vs. Chronic Condition
• Illness vs. Disability
• Military Metaphors (e.g., "the battle against disease")
• Chronic Pain Patient vs. Patient with Chronic Pain
• Healthy Disabled vs. Unhealthy Disabled
• Patient (does it connote passivity?)

"In the Kingdom of the Sick" is a fascinating read for anyone with a personal and/or professional connection to chronic illness.  It begins by giving you a strong foundation in the history of illness, research, and patient advocacy movements.  It then challenges you to consider the impact of advances in patient rights, science, communication, and technology on the incidence, treatment, and perception of chronic illness.  I highly recommend this book to my Pop Health readers, friends, and colleagues.

If you are interested in connecting with Laurie Edwards:

Website:  http://www.laurieedwardswriter.com

Blog: http://www.laurieedwardswriter.com/blog

Facebook:  http://www.facebook.com/laurieedwardswriter

Twitter:  https://twitter.com/achronicdose 

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Why Everyone is so Angry at Paula Deen- A Guest Post for "The Public's Health"

Last week I had the pleasure of being invited to guest blog on "The Public's Health". The blog is a collaboration between Drexel University School of Public Health and The Philadelphia Inquirer. In multiple posts each week, the authors highlight contemporary, historical, and ethical matters that challenge public health professionals.

For my post, I was able to contribute a "Pop Health" story which examined Paula Deen's disclosure of her type 2 diabetes and the media and societal backlash which followed.

What do you think? Do celebrities have the right to talk about their health information whenever and however they feel comfortable? Or do they have a social responsibility to disclose as early as possible- and to discuss it in a way that is most likely to improve the public's health?

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Anti-vaccine ads on Delta planes; Magic and Ellen as celebrity champions for HIV/AIDS prevention...and more- What Am I Reading This Week?

New pop culture and public health stories to check out this week:

1. Darrell Hammond of Saturday Night Live fame reveals that child abuse led to alcohol/drug use and cutting. He details the horrific abuse in a new memoir, "God, If You're Not Up There, I'm F*cked".

2. Fellow Boston University School of Public Health alum Elizabeth Cohen reports on the 20th anniversary of Magic Johnson's announcement that he is HIV positive. His announcement had an incredible impact on the public's health- both in terms of reducing stigma of those diagnosed and proving that the diagnosis is not always a death sentence.

3. Delta airlines is seeing backlash from public health organizations and other flu vaccine advocates after airing a 3-minute PSA from the National Vaccine Information Center that describes alternate ways to avoid the flu (besides getting the flu shot).

4. Ellen DeGeneres is named global envoy for AIDS awareness. The hope is that Ellen's enormous platform (from both her TV show and social media channels) will allow her to reach millions of people with the prevention message. Ellen is a partner in other important public health issues, for example- bullying prevention.

5. This week, Evelyn Lauder passed away from Ovarian Cancer. Evelyn was one of the powers behind the creation of the pink ribbon campaign for breast cancer awareness.

How about you? What are you reading this week?

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Celebrities and their Health Causes: What Happens When They Do More Harm Than Good?

Often on this blog I have spoken about the role of celebrities as the spokesperson or "champion" for various public health issues. Many celebrity names are synonymous with particular health causes (Katie Couric- Colon Cancer; Michael J. Fox- Parkinson's Disease; Lance Armstrong- Testicular Cancer; to name a few).

Over the past few weeks, several stories have emerged which beg the question, "what happens if celebrities do more harm than good?" Those in the public eye have such a broad and extensive platform to communicate with the public...what if they disseminate erroneous information or even worse- cause a panic?

The week of September 12 was quite busy! In the Republican Presidential Debate (in the context of discussing mandated HPV vaccines for children), Rep. Michelle Bachmann claimed that the HPV (Human Papillomavirus) vaccine is linked to mental retardation. To support her claims, Bachmann repeatedly told the story of being approached by a woman whose daughter suffered mental retardation after taking the vaccine. As those of us in science well know, one self-reported story does not equal a true incident. Even if true, one incident does not equal a trend or an epidemic. This story has been quickly picked up by scientists who are even offering money if it is proven true.

This same week, Dr. Mehmet Oz of the Dr. Oz Show (you may remember him from numerous appearances on the Oprah Winfrey Show), claimed that apple juice contains unsafe levels of arsenic. These claims followed research conducted by the Show which had a laboratory examine three dozen samples from five different brands across the United States. The samples were compared to the limits of arsenic set for drinking water by the EPA. Since the claims, many scientists have spoken out regarding concerns about the study's protocols and conclusions (for example, not differentiating between organic and inorganic types of arsenic). Many were concerned about the widespread panic caused by these claims and likened it to shouting "fire" in a crowded theater.

Of course, this is not the first time celebrities have caused a scandal following potentially false and dangerous claims. Jenny McCarthy has dedicated her life to proving the cause between childhood vaccines and autism. Shortly after Brooke Shields released her book, "Down Came The Rain", which chronicled her battle with postpartum depression- actor Tom Cruise (a Scientologist) publicly criticized her for taking antidepressant medication.

So what happens when these celebrities cause more harm than good? What happens when their claims are misguided, misinformed, and/or not based on evidence or science? The answer: they can have huge and far-reaching public health consequences. For example, as we begin to see illnesses like measles reappear- we have to wonder- "Is this the Jenny McCarthy effect?"

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Google Continues to Use its Power for Public Health Good

Yesterday, Google announced its new surveillance system for Dengue Fever. Dengue Fever is a disease caused by four related viruses spread by a particular species of mosquito. It can cause high fever, rash, muscle and joint pain, and in severe cases- bleeding, a sudden drop in blood pressure (shock) and death. Millions of cases of Dengue infection occur worldwide each year. Most often, dengue fever occurs in urban areas of tropical and subtropical regions.

The system is similar to that which was previously released as their Google Flu Trends program. These systems use search queries within Google (for example those that enter the disease's name and/or symptoms) to identify trends. The Dengue system also takes advantage of a new feature called Google Correlate, which shows previously unknown correlations between search terms. These correlations allow researchers to model real world behaviors by examining internet search trends. For those who may be skeptical of this model, you should check out a publication (co-authored by Google and the Centers for Disease Control and Prevention-CDC) in the 2009 Nature Journal . The article reports that "because relative frequencies of certain queries were highly correlated with the percentage of physician visits in which a patient presents with influenza-like symptoms, we can accurately estimate the current level of weekly influenza activity in each region of the United States, with a reporting lag of about one day."

This is a pretty exciting addition to public health surveillance (where the goal is systematic, ongoing, data collection that is used to monitor trends, identify priorities, direct resources, identify emerging hazards, and evaluate interventions).

This is not the first time that Google has jumped into the public health field with an impressive contribution. In 2010, Google searches related to suicide started appearing with a message guiding users to the toll-free number for the National Suicide Prevention Lifeline. The number is 1-800-273-8255. Triggered by searches such as "I want to die" or "ways to commit suicide," the number is listed next to an icon of a red telephone, at the top of the search results.

The addition of the Lifeline number came shortly after (at the suggestion of a Google user), the company started displaying the hotline for the American Association of Poison Control Centers after searches for "poison emergency."

These cases of Google's work in public health are great examples of effective health communication and public health principles:

• Identifying the primary channels through which your audience searches for health information (more and more are utilizing the internet) and delivering accurate and effective information and/or interventions via those channels.

• Maximizing data driven surveillance systems- using existing data (e.g., internet searches) to identify public health trends.

• Building strong partnerships (as evidenced by the publication by Google and CDC) CDC has partnered with a company with specific expertise and resources in an area that can be invaluable to their work.
  

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Upcoming birthday

This time last year I was preparing for unexpected surgery to remove what remained of the tumor in my sinuses.

My imagination was spinning with terror. This was not the plan.

The surgery was on April 13th and went very well. I was released the day before my 30th birthday.

Not quite the celebration I imagined.

The surgery went very well. I had very little pain and was released the next day.

I was officially cancer free, yet it would be months before they could tell if the surgery was successful.

Any sense of relief alluded me...

Its almost a year later.

I began writing with the intention of expressing gratitude and excitement for the change in my health since my last birthday.

Instead I am finding a deeper appreciation for last year's gift -- my life.

My birthday has become more than a celebration of my birth.

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No Matter How Graphic The Images, Fear Based Messages Will Continue To Be Ineffective For Prevention

All over the news in the past week, we have seen samples of the new graphic images being proposed for addition to cigarette packages. They include corpses and people dying of cancer. However, just because these images and warnings are larger and more graphic, does not mean that they will be effective in smoking prevention.

A story ran today on Boston.com called "Will graphic cigarette warnings help- or hurt?" Two experts in tobacco prevention are quoted regarding their concerns about the new images. Gregory Connelly of the Harvard School of Public Health points to the results coming from Canada after using similar images. Smokers there simply purchased sleeves to cover up the images on their cigarette packs. Also, the smoking rate did not go down. The second expert is a wonderful professor of mine from the Boston University School of Public Health, Dr. Michael Siegel. Dr. Siegel writes regularly regarding this topic on his blog, "The Rest of the Story: Tobacco Analysis and Commentary". In the Boston.com article, he states "I do not actually think it's going to have much of an impact". His argument- the images are too late. The smokers are seeing the images after they have already purchased cigarettes. And (drum roll please....) people already know smoking is bad for them.

As someone who grew up during the "This is your brain. This is your brain on drugs. Any questions?" era...I wonder why we have not made much progress since then? Numerous studies have shown that scare tactics (or fear appeals) are not effective for preventing or producing sustained reductions of Alcohol, Tobacco, or other Drug use among youth. In addition to the issues outlined above, there is another problem with the fear based approach:

Although the fear based messages may increase knowledge (e.g., if they did not know it already, smokers will learn that cigarettes are bad for them from the graphic images)- knowledge does not equal behavior change. Especially when you are dealing with an addictive behavior. Addictive behaviors like smoking and drug use are impacted by much more than a rational weighing of pros and cons. There is the biological component of addiction, local-state-national prevention policies, social norms around the behavior, consequences experienced (or not experienced), ease of access to the substance, social support for quiting, money to support the addiction, etc. As you can see, knowledge alone will not change this kind of complex behavior.

Many of the most successful prevention strategies around this and other public health issues will continue to be a refocus from increasing individual knowledge to changing an environment that supports the behavior. In other words, laws that create smoke-free workplaces and crack down on establishments that sell cigarettes to underage kids will always be more effective at keeping the population healthy versus trying to educate (or scare) one individual at a time.

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Personal Responsibility and Health: Who Should Pay For Your Cheeseburgers?

Last year one of my "friends" on Facebook posted a status that infuriated me. It said "Why should I pay for health care for people who can't stop eating cheeseburgers from McDonald's?" I'm never one to downplay the importance of individual health behaviors like diet and exercise. In the three years since I met my husband he has gone from eating "less than one" (his words) serving of fruits/vegetables a day to at least four or five a day. And I'm sure that was the result of my gentle "nudging" because I was concerned for his health. However, this oversimplification that all acute or chronic illnesses are caused by "overweight people eating McDonald's" is incredibly ignorant. We cannot have a discussion about facilitators and barriers to good health outcomes without considering a person's environment, economic status, profession, family, peers, attitudes, beliefs, knowledge, etc. The list goes on.

There was an interesting article in The New York Times this week, No Matter What, We Pay for Others' Bad Habits, that explores this very issue of personal responsibility. The story had legs on Facebook and Twitter, so I wanted to incorporate it into the blog. And because I follow such thoughtful and interesting people online, I thought I'd include one of their quotes to demonstrate my point above (I removed her name in case she isn't interested in being a blog celebrity):

• "The notion of personal responsibility becomes almost a moot point if we don't have an environment that supports our ability to responsibly make "the healthy choice". As the Institute of Medicine says, "It is unreasonable to expect that people will change their behavior easily when so many forces in the social, cultural, and physical environments conspire against such change".
  

Some thoughts:

• Perhaps the hourly worker would like to make it to his healthy/yearly check-up at the doctor. However, because his job doesn't offer sick time since he's part-time, he could be fired for missing work. Therefore, he decides to miss his appointment, flu shot, blood pressure check, etc....because his paycheck is more important to his family.
  

• Perhaps there are a large number of people in a lower socioeconomic bracket that eat McDonald's cheeseburgers (as my Facebook "friend" noted above)...but maybe that's because there are no Whole Foods or Trader Joe's Markets in their neighborhoods. And maybe they don't have a car to drive to one and/or the bus route doesn't pass those stores. And I know that those $1 burgers are a little less expensive than the $10 Rotisserie chicken that Whole Foods sells.

• Perhaps a parent wants their child to walk or ride their bike to school for exercise, but their neighborhood isn't safe. What if there are no side walks?
  

• And what about the impact of genetic and environmental factors in disease? A strong family history of cancer and heart disease cannot always be canceled out by eating vegetables and heading to the gym. And what about those people that are exposed to dangerous chemicals in their jobs. What about those that now suffer due to exposure to asbestos in their jobs before we knew how bad it was? Do they not deserve health care?
  

Again, I'm not downplaying personal responsibility. Patient compliance, healthy eating, and exercise are incredibly important. But let's not forget the complex systems which influence the health of individuals.

And to end with a Facebook "friend's" status that made me less angry: "I mean, seriously, if you're getting that angry cuz a fellow human being can now go to the 'effin doctor, you probably could use a few moments of self reflection..."

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Sesame Street's "Talk, Listen, Connect": A Strong Public Health Program for Military Families

Both academic and popular news sources have been reporting on the health problems experienced by active duty military and veterans (e.g., Post Traumatic Stress Disorder (PTSD) and Traumatic Brain Injury (TBI). Recently we have also begun to see research looking at the health problems experienced by spouses and children within military families. This January USA Today story highlights two such research studies:

(1) The first study (published in the New England Journal of Medicine) concluded that wives of soldiers sent to war suffered significantly higher rates of mental health issues than those whose husbands stayed home.

For example, wives of soldiers deployed to Iraq or Afghanistan between one and 11 months had an 18% higher rate of depression than those whose husbands did not go to war. When soldiers were deployed 11 months or longer, their wives had a 24% higher rate of depression.

(2) The second study (by the RAND Organization) found that children of deployed parents suffer more emotional issues, particularly if separations are long or the parent at home is troubled.

Based on this data, public health experts can see a clear need to develop interventions not just focused on active duty military and veterans, but also for their families. Therefore, I was happy to see that Sesame Workshop (the non-profit organization behind Sesame Street) has created a program called "Talk, Listen, Connect", which addresses priority issues for this population. I reviewed three brief videos and accompanying literature on this project and was very impressed:

• The "channel" being chosen to reach parents and children is an existing one. Families are already familiar with (and trusting of) Sesame Street, so they are not asking families to bring an unfamiliar resource into their homes. E.g., Elmo is the character used most frequently in these videos, and he is beloved by children. They are used to learning from Elmo.
  
• The videos used various methods for providing information, so it can be appropriate for learners of multiple levels/backgrounds. E.g., Pictures, songs, modeling of conversations between Elmo and his Dad, celebrity cameos (Queen Latifah stars in the third video).
• The creators obviously did research into relevant issues for military families (e.g., the videos address preparing for deployment, adjusting to homecoming, and coping with changes). The third video even shows a child coping with a Dad who came back with TBI- an injury unfortunately too common with these wars.
• The Sesame Workshop is even going beyond education to address real barriers to families staying connected. I was thrilled to see them examining challenges in the environment! They have created Sesame Street Family Connections. It is a little like having a Facebook Family Page. It is a a child-centered online space where both children and adults can interact and stay connected over long distances when everyday communication can otherwise be difficult. Family and friends can post pictures and videos, share messages and artwork, etc. This strategy is attempting to increase connections and family support (and decrease isolation)...which can help reduce associated negative health effects (e.g., depression).
• A plan for outcome evaluation exists! So often, this is left out of public health education planning. Although research about the effects of Talk, Listen, Connect on families experiencing multiple deployments and injuries is forthcoming (as the projects moves through several phases of roll-out). A summary study for the first phase of the project, which dealt with a parent’s first deployment, revealed that the materials helped military parents and children feel better during deployment, and helped them to be prepared emotionally for the deployment process. It also showed that Talk, Listen, Connect is helping parents by giving them the language and tools they need to engage in a dialogue with their children.

Although the details of a formal evaluation still need to be reviewed, I feel optimistic about this program for military families. They have incorporated the latest research (e.g., populations to target, risk/protective factors for adverse health effects, effective communication channels) into the program design. Go Elmo!

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