A Pop Health Book Review of "Deadly Outbreaks"

I was always a fan of "House, MD", a medical TV drama that followed a team of physicians tasked with diagnosing patients with mystery symptoms that stumped every other doctor.  I loved the twists and turns, the hypotheses, the puzzles.

I kept being reminded of House as I read Dr. Alexandra Levitt's new book, "Deadly Outbreaks".  She profiles seven cases where real life medical detectives (aka: field epidemiologists) solve mysteries involving exotic viruses, unexplained deaths, and occupational safety (just to name a few!)

As I thought about the relevance of "Deadly Outbreaks" to Pop Health, I kept coming back to the role of communication between these medical detectives and the public.  This communication is heavily impacted by the media (which can help or hurt an investigation!)  I was fascinated to read about this relationship in the cases presented (from 1976-2007) and think about how it will evolve in the future along with our health communication channels.

Several cases offered particularly striking lessons in health communication:

Lesson 1:  The Role of Communication in Promoting Fear or Stigma

Chapter #4:  Obsession or Inspiration
This case (1976) chronicled the discovery of what would later be named "Legionnaires Disease". With U.S. citizens already worried about a possible influenza epidemic (due to a suspicious death earlier in the year), the medical detectives had to contend with media coverage that fueled public fear:

"The U.S. public, bombarded by daily news stories, was disturbed and frightened by the outbreak in Philadelphia, even though swine flu was quickly ruled out as a possible cause."

(Page 84)

"The public was primed and ready to believe that something big and scary was about to arrive, and it had."

(Page 84)

Chapter #7: A Normal Spring
This case (1993) followed the trail of a virus affecting people in New Mexico (later discovered to affect people in the four corners (New Mexico, Arizona, Colorado, and Utah). This case was interesting because it presented the challenge of managing the intersection of media coverage and local culture (Navajo people were disproportionately impacted by the condition).

"The Navajos were also unhappy at being linked to the disease in Four Corners. The newspapers not only printed the names of dead relatives, but also referred to the disease as the "Navajo flu," stigmatizing an entire people."

(Page 174)

Lesson 2: The Role of Communication in Promoting Health and Safety

Chapter #5: Deadly Desserts
This case (1994) which involved a Salmonella outbreak, highlighted a successful public awareness campaign! After Salmonella was linked to their products, the Schwan Company conducted a recall and asked customers to discard or return all uneaten products that may be affected.

"Schwan's even sent their trucks door-to-door to retrieve ice cream from each household."

(Page 124)

"Schwan's public awareness campaign- advising its customers not to eat its ice cream -was unprecedented and has been praised and studied as a model of good corporate citizenship."

(Page 124)

Lesson 3:  What's In A Name?  The Importance of Language

Chapter #4: Obsession or Inspiration

The newspapers called it "Legionnaires Disease" first. This popular name would later become official (and was approved by the American Legion).

"It was named Legionella pneumophila ("lung-loving"), in honor of the American Legionnaires.  Although many affected groups do not want the stigma of having an organism or a disease named after them, the leaders of the American Legion decided that the name would honor their fallen colleagues."

(Page 111)

Chapter #7: A Normal Spring

It is customary to name a newly isolated animal-borne pathogen after a geographic feature around the place it was discovered.  Therefore, names such as the "Four Corners virus", "San Juan virus", and "Muerto Canyon" were proposed.

"...the Navajo community was uncomfortable with names that would tie them to the new disease..."

(Page 181)

In response to this concern, scientists settled on a neutral name for the pathogen: Sin Nombre, the No Name Virus.

Overall Thoughts

I highly recommend this book. While I highlighted some of the health communication lessons here, there are lessons for a variety of public health disciplines. It is a great resource for public health students:  Dr. Levitt does a wonderful job of defining key public health terms (e.g., case control study) and providing lots of practical examples. It is a great resource for current public health practitioners who should re-visit lessons from past outbreaks as we tackle the challenges of disease surveillance, domestic/international outbreaks, and the disturbing anti-vaccine movement. This book gives us a good idea of the diverse skill set needed by today's public health workers....and I believe communication skills are at the top of the list. We need scientists who can do the work and also negotiate the media and the challenges of communicating risk to the public. As online news and social media become ubiquitous, I'm curious to see how public health handles the challenges of the 24-hour news cycle where health myths or facts can be spread in the blink of an eye.

What Do You Think? Would love to hear from others who have read the book!

Disclaimer: I was invited to review "Deadly Outbreaks" by the Council of State and Territorial Epidemiologists (CSTE) and provided with a copy of the book.

What Can “Chronic Resilience” Teach Public Health Practitioners? An Interview With Author Danea Horn

Last month I had the pleasure of receiving an advanced review copy of "Chronic Resilience: 10 Sanity-Saving Strategies for Women Coping with the Stress of Illness".  As I read through the book, I made note of many issues that are relevant to public health practitioners.  Therefore, it is a pleasure to have Danea Horn expand her comments on these topics for Pop Health readers. 

If you would like to connect with Danea, you can visit her website or twitter.

Leah:  In public health, we talk a lot about how our society’s “culture” can promote or harm health.  In several places in your book, you talk about the connection between our societal values and our health.  For example:

Page 33: “Part of the reason we try to be all things to all people is our culture.  Have you ever sat through a business meeting while someone is sniffling and sneezing and exposing everyone else to their cold?  In that moment they are valuing achievement, money, or appearances above their health and the health of everyone else in the room.”

How can we expand your strategies beyond the individual level?  How can we identify and live our health values at the neighborhood, community, and organization levels?

Danea:  It only takes one person to start a conversation that can become the catalyst for big changes. Start talking to people at your work and in your community to get a feel for what is valued currently. The policies (written and unwritten) in our offices and items at our potlucks will say a lot about what we collectively value. If you find inconsistency or confusion in your conversations, open up a dialogue with the leaders in your organization or community to discuss what you would like to collectively choose to value. From here you can brainstorm together ways to influence change. They can be small changes like creating a healthy living block party where people share nourishing dishes and swap good-for-you recipes or larger changes like paid sick leave (which is not mandatory in every state…yet). Never be afraid to speak up. A big theme in Chronic Resilience is controlling what you can control and talking is in your control. 

Leah:  In Chapter #6, you write “It is up to you to decide how public to make your health.”  You and several of the women you interviewed for your book have blogs that document your health journey in a very public way.  Public health researchers Ressler et al (2012) have identified many benefits of patient blogging (e.g., patients report a decrease in feelings of isolation).

What benefits have you experienced as a result of writing about your health?  What challenges have you encountered during the process of sharing your story publicly?

Danea:  Writing helps me process what is going on from a different perspective. I am all about learning from our challenges, so each post I write is a search for a lesson or message that my diagnosis is pointing me toward. I can feel frustrated about the progression of my disease and start out writing a rant, but I find that I naturally end up with a message about letting go of my ideals or acceptance. Reframing my health in this way has been very empowering.

I haven’t encountered many challenges by being public with my health journey. Commenters have been very supportive. That said, I am discerning about what I choose to share and do keep some things private. Challenges I know other people have faced, and someone who blogs publicly about their health should be prepared for, are people sharing remedies, treatment recommendations, cure-all solutions and pleas to have faith in a deity they may or may not believe in. While these all come from a caring place they may feel intrusive. Also, you may want to give a heads-up to your close family and friends before you post anything particularly revealing, emotionally or otherwise, that you haven’t shared with them in private first.

There are a number of ways to benefit from writing about your health. Doing it publicly on a blog can create a sense of support and community, but if that feels too invasive, you can join support forums anonymously, create a private blog or journal pen and paper old school style.

Leah:  In Chapter #7 (“Empower Yourself With Research”), I was thrilled to see your emphasis on helping patients evaluate the validity and safety of medical information found on the Internet.  This is a huge challenge in public health!  Our evidence-based messages and guidelines often compete online with anecdotal evidence and unscientific studies.

Why did you decide to dedicate a portion of your book to this discussion?  Why is it so important for patients to discuss what they find online with their medical team?

Danea:  Before I became discerning about what I read online about my diagnosis, I was completely stressed. I read way too much from too many random sources to properly sort out what I should believe. I also noticed that I was searching for how I was going to become sicker (the side effects, complications, and progression of my illness) instead of searching for how I could support my heath. Fortunately, I realized most of my stress was coming from worry created by endless Internet searching, and I decided to take a different approach.

I found a few sources from trusted physicians and nutritionists to study and implement. I decided to stay focused on my personal symptoms, medications and prognosis instead of what other people I didn't even personally know had experienced. I also started a more open dialogue with my doctors about the diet I wanted to try and some of the studies I had read. When we research and experiment with our health without informing our doctors, we may have conflicting approaches which can create drug interactions or other harmful complications. Doctors are there to support us. If you are uncomfortable talking with yours, it’s time to find one that you trust enough to be completely open and honest with. We should all have a doctor who will work with us to find treatment solutions we feel comfortable with.

Leah:  A big thank-you to Danea for making the time for Pop Health!  "Chronic Resilience" is a great read for those with a personal and/or professional connection to chronic illness.  For public health clinicians, practitioners, and researchers who work in the chronic illness arena:  I think you will get a unique first-hand view into (1) the mental, physical, and emotional challenges that affect this population, (2) the incredible resilience that those with chronic illness show on a day-to-day basis (what can we learn from them??), and (3) specific strategies that can be employed to support patients with chronic illness.  As Danea and I discuss above, these strategies have the potential to be expanded from the individual level to offer support to entire communities.

A Pop Health Book Review of “My Foreign Cities: A Memoir”

I cannot remember the last time I was so engrossed in a book that I looked up with shock to see the clock read 2:00am.  Well, that happened to me on both Friday night (when I started) and Saturday night (when I finished) the book “My Foreign Cities”.  The memoir chronicles the love story between author Elizabeth Scarboro and Stephen Evans.  In late high school/early college, their friendship grew into love and Elizabeth chose to be with Stephen, even though she knew his cystic fibrosis (CF) would limit his life expectancy (30 years old on average), impact her choices, and reduce their time together:

"In comparison to Stephen, most things would be there.  If I wanted him, I had to hurry up" (page 36).

While there were numerous public health topics of interest in this book, I was most struck by the strength, resilience, and creativity that Elizabeth brought to her role as a caregiver.  While the focus was on Stephen's health, we also learned how and when she needed to take care of herself.  Many of her words have stayed with me, so I'm weaving her eloquent quotes into this review.

Throughout the book, I was surprised by how she could both focus on the present and think about her future.  Even though she knew that future would not include Stephen at some point:

"Back then, this was my plan to get through Stephen's death: I'd have a life, a self, I wanted to continue after he was gone.  But I couldn't invent that on the spot- it would have to already be there, which meant I'd need to live it while he was here too" (page 79).

Because of this mindset, the reader gets to hear about the risks and adventures they took- both big and small.  The big being the trips to Mexico, Hawaii, Scotland, and Ireland- the moves to San Francisco, Boston, and back to San Francisco again- going to graduate school- and getting married.  The small being the clandestine escapes to the hospital roof for privacy during a long stay and their wonderful hikes around their homes in Denver and San Francisco.  Elizabeth's writing is so vivid that you can see the scenery, feel the air on your face, and sometimes hear Stephen's labored breathing.

When Stephen struggles with a dangerous addiction to his pain medication, we are reminded that caregivers deal with all the side effects and dangers that surround an illness- not just the disease itself.  Stephen managed to hide the addiction from Elizabeth for almost a year.  Their relationship and communication were challenged as she tried various solutions to the problem- locking up the medications, alerting his physicians. Elizabeth talks about how his withdrawal symptoms and subtle disclosures were often lost on her because she always viewed things within the larger context of CF:

"But that was the great thing, and the dangerous thing, about life-threatening illness- every other problem appeared like a sideshow when cast in its light" (page 108).

When Elizabeth battles depression during Stephen's recovery from a double lung transplant, we are reminded that caregivers have their limits and that self-care is incredibly important:

"And then I crashed.  Not in the way that Stephen might have, with none of the magnitude or danger, but in the way of a healthy person, slipping slowly, with the strong sense that it couldn't be happening, I could fix it if I just tried hard enough.  Maybe I crashed because I finally could, because Stephen was okay" (page 188).

During her recovery from depression and later- as Stephen's condition worsens, the reader is introduced to Elizabeth's amazing support network.  I can only hope that every caregiver has a group of friends/family like hers:

"Back home, my friends converged to take care of me, like incredibly skilled dancers, hiding the work of it, moving so seamlessly that I barely noticed the details, I just felt, underneath me, a solid floor" (page 273).

I would highly recommend this book to public health professionals, clinicians, patients, and caregivers.  While some parts are heartbreaking, the theme of resilience dominates.  We also get an inside view to patients and caregivers that should help us think about access to health care, quality of life, and the empowerment of patients.

I would also recommend this book because Stephen was one of us.  After college, he enrolled at the Harvard School of Public Health to pursue his interest in health care policy:

"Stephen was most concerned about how people without insurance would be managed, or worse, not taken into account at all.  He felt indebted to the California state system that covered CF, and he wanted to give back" (page 103).

I hope this book helps continue this legacy for Stephen.  I hope the book ignites conversation about access to care, coverage for the uninsured, and support for chronic illness patients, transplant patients, and their families.

Supplemental Information:

• My Foreign Cities: A Memoir- Facebook Page
• Pew Internet & American Life Project- New data on caregivers and how they use technology to find health information

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 

A Pop Health Book Review of "The Immortal Life of Henrietta Lacks"

This book is not brand new; it has been out for about a year. However, it continues to pick up momentum and be read by book clubs across the country. Therefore, after it was recommended to me by my mother-in-law, I thought it would be perfect for a Pop Health Book Review.

As someone who works in public health, I collaborate with our University's Institutional Review Board (IRB) on a daily basis to ensure the safety of our research (for the good of our research team, funder, and participants). And even though I know and understand the importance of the collaboration, it can still feel like a burden to address and document each question that is asked by our IRB (I know many of you would agree!) I see the students I work with roll their eyes and sigh when they have to take the IRB and HIPAA trainings. HIPAA stands for Health Insurance Portability and Accountability Act of 1996 Privacy and Security Rules. The students say, "Yeah...we already know this stuff".

However, this book takes what you "already know" and puts a face on it. It reminds you that it wasn't long ago that people (especially vulnerable people) were experimented on and/or used for research without their consent. Often with sad and deadly outcomes.

Rebecca Skloot, an award-winning science writer, takes the reader on her personal journey (lasting over a decade) to learn about the woman behind HeLa cells. The woman's name was Henrietta Lacks. The original cells were taken from her cervix shortly after she was diagnosed with cancer and before her death. HeLa cells have been vital for many scientific advances, including the development of the polio vaccine.

Henrietta's story, pieced together through more than a thousand hours of interviews conducted by Rebecca, touches on the most essential and controversial aspects of public health and research:

1. Treatment/Research on Vulnerable Populations:

• Henrietta Lacks was a poor Southern tobacco farmer, seeking medical care from Johns Hopkins "colored" ward in the early 1950s. A sample of her tumor was taken and given to researchers without her consent. She was treated with radiation without a discussion about the side effects. Henrietta had no idea the radiation would cause her to be infertile. The hospital convinced her husband David to agree to an autopsy (after he already refused) by saying that the exam "could help his children one day". The autopsy results were later given to a writer who published all the details in his book.

• It is no wonder that the IRB now requires specific training and attention to address research that focuses on vulnerable populations. These include pregnant women, fetuses, neonates, prisoners, children, and other special classes of individuals such as minorities and those that are mentally ill.

• It is no wonder that it can be incredibly difficult to recruit members of these vulnerable groups to participate in research, even today! Henrietta's family spoke of their fears of being snatched off the streets around Johns Hopkins by doctors wanting to experiment on them. Rebecca found research that tales of "night doctors" had filled black oral history since the 1800s. These doctors would kidnap black people for research.

2. Ethical Issues

• This book examines the ethical issues of sharing human tissue. Consent to share human tissue (e.g., those you have "discarded"after a blood test or biopsy), is not the same as consenting to participate in research. Often consent is not required.

• But do researchers and doctors have an ethical responsibility to disclose to the patient if (1) their cells/tissues are unique and valuable in some way, (2) the researcher or doctor has a financial interest in their tissue, (3) the patient's tissue will be used in any way that is contrary to their beliefs?

3. Informed Consent

• Times have certainly changed since 1951 when Henrietta Lacks was subjected to tests and procedures without giving informed consent. Unfortunately, it took about 50 years to get there. Her husband and children were still left in the dark regarding the purpose of blood tests in the years after her death. Scientists wanted to map their genes. The family thought they were being tested for cancer. They waited years for results that never came.

• Most of Henrietta's family only completed school until their early-mid teenage years. Even when the doctors explained parts of procedures, it was not at a level or in a way that was familiar to them.

• This book emphasizes the importance of being "informed" in the consent process. If the participants don't understand, their verbal or written consent means nothing.

All of these important issues are discussed with beautiful storytelling by Henrietta's family and Rebecca's careful research. It is a must read, especially for my fellow science and public health friends out there.

You'll find yourself cheering for Henrietta's daughter Deborah and her siblings, who have all endured more than their share of suffering. And probably most important, you'll find yourself making a pact to never sigh when it is time to complete the annual IRB training.

A Pop Health Book Review of “Unbearable Lightness”

Welcome back readers! After a holiday, bronchitis, and work travel hiatus- Pop Health is back with a new feature- reviews of books which examine public health and popular culture issues.

Over the weekend I finished reading “Unbearable Lightness- A Story of Loss and Gain”, by Portia De Rossi. I actually mentioned this book back in a November post when it first came out. The story chronicles Portia’s struggle with both Anorexia and Bulimia from approximately age 12 to the present. The strength of the book is in its ability to portray the absolute complexity of an eating disorder. Sometimes these disorders (and other mental or physical health issues) are over simplified. For example, the commonly held belief that someone is Anorexic simply because she/he needs to “have control over something”. However, in Portia’s case, she wove an incredible story that examined causes at multiple levels. And in public health, this multilevel thinking is essential for the development of effective interventions. I have decided to begin with the causes most closely associated with Portia herself and work my way out.

Intrapersonal:

Portia endured a complete lack of healthy coping mechanisms. She dealt with a lot of sorrow and changes in a short amount of time as an adolescent growing up in Australia. Her father passed away and she changed to a more affluent school district. She worked to cope with these challenges by identifying a way to be “special” and “stand out”. She chose modeling because models are special. She also changed her name when she was 15. There was another girl her age with the same name (Amanda Rogers), so she changed it to Portia De Rossi to be more unique.

Portia also felt intense guilt and shame over being gay. Although she realized her sexual orientation early on, she kept this secret until her late 20s. Much of her self hatred focused on feeling as if she was disappointing her family and would ultimately ruin her chances to have a successful career and “normal” life.

Interpersonal:

Portia’s relationship with her mother is examined in quite a bit of detail. Throughout her modeling career as a teenager, her mother was definitely her accomplice in yo-yo dieting. Her mother taught her “dieting tricks” to lose the weight quickly for jobs, but also rewarded her with McDonald's after auditions. However, her mother’s strongest influence seemed to be over the guilt and shame she felt over being gay. After she came out to her mother, the response was “let’s just keep this to ourselves”. Portia was told to keep it from the family and from employers/co-workers.

Besides 1-2 friends and her brother, Portia is very isolated. In addition, her relationships with co-workers on Ally McBeal and other colleagues in the industry seem to have contributed to her eating disorder as well. For example, two of her co-stars (Calista Flockhart and Courtney Thorne-Smith) were famously accused of being Anorexic and underweight throughout the show’s run. So Portia was constantly working with and compared to an unrealistic ideal. In addition, many people who could have and should have recognized the problem and intervened- stayed silent. For example, as Portia dropped from a healthy 130 lbs to sub-100s, her costume designer told her she looked fantastic and asked for her secrets to weight loss. Portia also sought the help of a professional nutritionist. Even though she confided to binging and purging on the first visit, she was still given a food scale and a diet to help her lose weight. The nutritionist did not try to intervene until Portia was almost down to 82 lbs.

Community/Society:

Portia’s existence in several “communities” contributed to her struggle with eating disorders. Her first professional affiliation in the modeling community in Australia is where she developed a strong knowledge of dieting, purging, and excessive exercise. The “older girls” taught her this. It was the norm in that group to be unhealthy in order to get ready for a job.

From Australia, Portia traveled to the United States and the “Hollywood Industry”. Unfortunately, it was a smooth transition from the unrealistic expectations of the modeling to the acting industry. She describes a particularly gut-wrenching fitting that she endured when a photo shoot had to be rescheduled after the client realized that she was in fact a size 8- so no selected clothes would fit her.

In addition to body size, she also felt Hollywood was not accepting of a homosexual lead actress. Several times she spoke of the paralyzing fear she felt after seeing how quickly Ellen DeGeneres’ show was canceled after she came out in the late 1990s.

This is just a brief overview of these complex contributors to Portia’s eating disorder- I could easily go on for many more pages. Overall, I think the book is a fascinating read…for those of us interested in public health, eating disorders, and/or Hollywood. It portrays Portia’s struggle, self hatred, and self destruction with brutal honesty- so be prepared.

A closing word of caution: this book may not be appropriate for someone with a current or recently recovered eating disorder, since it outlines her eating, binging, and exercise rituals in incredible detail.