In Praise of Community Health Workers and Patient Navigators

Yesterday was the busiest and best day of my entire work year. Every May we hold a conference for community health workers and patient navigators. The purpose of the conference is to bring this workforce together for learning, skills-building, and networking. It is a gift to work with these outstanding women and men who are serving their communities so well. Yesterday was that conference and I am once again overwhelmed by the privilege of working with these people, many of whom I have trained, others who have become personal friends.

Community health workers have been around for a while — their earliest mention was from Russia in the 1800’s. They were called “Feldshers” and were trained as layleaders to assist physicians and work in rural areas when physicians were not able to be present. The program that brought this idea to greater recognition and popularity was the successful Chinese Barefoot Doctor Program. This began around 1930 and is foundational to the idea of community members successfully working within their communities as lay health leaders.

In the 1980s, as health programs around the world faced budget problems, this workforce was unfortunately almost forgotten. We have only recently seen a resurgence and emphasis on community health worker and patient navigation programs.

A report published by the World Health Organization in 2007 highlights the work of these lay health leaders, not just as health care providers, but more importantly as advocates for their communities and agents of social change to “fight against inequities and advocate community rights and needs to government structures.”

This year our conference theme was “Telling Our Stories.” Anyone who has read this blog knows my love of stories. I wanted the theme to highlight the stories of these community health workers and patient navigators and how those stories intersect with the work they do. We had participants from across the country as well as Puerto Rico and Turkey. We had presentations from people on care of immigrants, maternal child health, caring for young adults who have cancer and more. It was a beautiful picture of the work that is done every single day with little recognition by a system focused on more and more education and less and less true patient care.

Each year we try to highlight the work that patient navigators and community health workers do through film. Film allows us to showcase their work in ways that others can better understand, without acronyms and medical speak, but with passion and heart. This year we focused on three navigators – Maria, Sabrina, and Mariuca. Not only are they navigators who do amazing work, I am also proud to call them my friends.

I have included the film so you can hear some of their stories and be inspired by the work that they do. Thanks for letting me brag on this group of people today. It is my privilege to work side by side with them.

Patient Navigators: Our Stories from Sean Clark on Vimeo.

On Polio (and When it’s all too Much to Bear)

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Afghanistan – where war, Taliban, drones and mudslides keep this country of hospitality, amazing people and amazing food on its knees and in its cemeteries. And as if this country has not had enough to contend with, a little girl sits on the floor in her home made of brick and mud suffering from polio.

Sometimes it’s just too much to bear.

Polio was near eradicated. For 25 years the World Health Organization promoted an aggressive world-wide vaccination campaign. The oral polio vaccine is simple – a couple of flavored pink drops at 2 month intervals and then a final booster dose a few years later, 4 doses in all. It doesn’t hurt. It’s safe. And it works. 

Here’s a bit about polio*: It loves hot weather, thriving in conditions that kill other viruses. Although it’s primarily in children it can be spread through others, through porous borders, through trade. It lives in the throat and the intestinal tract and is spread person to person. It is spread through oral secretions and through the feces of the infected person, so in places where the sewer systems are inadequate — refugee camps, poor villages, places where many people are living in close quarters without proper bathroom facilities. Already this year, a couple of months before the true hot season has begun there are 68 cases reported worldwide. While that seems miniscule compared to the billions of people in the world, last year at this time the numbers were about a third of this. And of those 68, 54 of them come from Pakistan.

But Syria too is in trouble. Prior to the war (or uprising because uprising perhaps caters to our prim sensibilities, but let’s be honest – it’s a war) the vaccination rate of Syria was high, upwards of 90%. But that has fallen dramatically and the first case of polio in years was reported this past year.

Vaccinations and vaccinators are suspect in Pakistan, the part of the world where most of these cases have emerged. At one time the CIA launched an undercover mission, using vaccination camps as their cover. Since that time any vaccination program is suspect.

So now polio has spread to Afghanistan, and a little girl sits on the floor. The New York Times reports that it is the first confirmed case in the capital of Afghanistan in 12 years.

Sometimes it’s too much to bear. 

Too much to try to make sense of all this. I thought yesterday was bad as I was reminded that over 200 Nigerian school girls were kidnapped by an extreme Islamic group and we all finally began to pay attention, signing petitions and using hashtags because we felt so helpless and knew we could do nothing else. And then today I’m reminded of polio and its devastating effects.

What do you do when it’s too much to bear? When you work in a grey cubicle and your heart hurts? When you want to point a finger but you know three will point back at you? What do you do when you try to figure out how you can in one breath be raging about Nigerian girls and in the next be excited about a television show that keeps you captivated for two hours? When you realize your own inadequacy in everything but that which you are directly responsible for – and even then, you often feel inadequate?

What do you do when it’s too much to bear? You put your head down and pray so deeply it hurts. And then you go to work doing what you know you’re called to do for the day, because you are not the Saviour, you are only the saved and that by grace alone. 

*For more on polio see the CDC website: http://www.cdc.gov/VACCINes/vpd-vac/polio/default.htm

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An Afternoon of Hope Tea Party

Pakistan is an amazing and complex country and a country of extremes. It boasts some of the highest and most beautiful mountain ranges; invites one in to incredible and gracious hospitality; arguably has the best food in the world and, with all that, has some tremendously difficult situations for women.

So it was early on in life that I met women with tremendous disadvantages, many in situations that seemed hopeless. It was before I turned 20, while volunteering at a women’s and children’s hospital in Shikarpur, Sindh, that I first met a woman who had a fistula. By definition a fistula is “a medical condition brought about by obstructed labor and/or trauma leaving a woman with incontinence,” The resulting symptoms are that the woman constantly smells like urine and can never get clean. But that is just the medical definition. The practical definition is loss of family, isolation, being seen as a pariah, and relegated to a cursed position in areas of the world where being a woman brings challenges from the first days of life. Fistulas are indescribably awful for the woman who has one.

”These are the women most to be pitied in the world,” said Dr. Hamlin. ”They’re alone in the world, ashamed of their injuries. For lepers, or AIDS victims, there are organizations that help. But nobody knows about these women or helps them.” (Alone And Ashamed, by Nicholas D. Kristof, Published: May 16, 2003)

Consider these sobering statistics about fistula:

It is estimated that 90% of fistula patients consider suicide as a solution. (Kristof and WuDunn, Half the Sky)

According to the World Health Organization, an estimated 2-5 million women have fistula worldwide.

The World Health Organization estimates as many as 50,000 — 100,000 new cases of fistula each year, yet the global treatment capacity is less than 20,000 cases a year. (Hope for Our Sisters)

The treatment is a surgery that has a 90% success rate if there are no complications and with complications the rate is still fairly high at 60%. It is not an exaggeration to say that the treatment saves lives. In a world where these women have been cast out like garbage, alienated and isolated, this surgery brings a hope that radiates through their world, forever changing their future.

“Nothing can equal the gratitude of the woman who, wearied by constant pain and desperate with the realisation that her very presence is an offence to others, finds suddenly that life has been given anew and that she has again become a citizen of the world,” Professor Chassar Moir. (Hamlin and Little, The Hospital By The River)

So why on a Saturday am I bringing up this serious topic? Because today at 1pm eastern time my niece, Christi-Lynn, a nurse and woman who is passionate about women’s health worldwide, is holding a special tea to raise money so that one woman can receive this surgery. The cost of surgery is $450.00. That’s the equivalent of 2 months worth of cell phone service for a family of five. It’s nothing. A tiny dent in a budget – and it changes a life. I have only raised awareness for causes a couple of times, but I believe that those who read Communicating Across Boundaries have a unique love for the world, and for women. So even though you can’t attend – if you can give to the tea party “An Afternoon of Hope” to raise money and awareness of the problem of fistula’s for women around the world, please contact me at communicatingblog@gmail.com.

Blogger’s Note: The organization that my niece is working with is called Hope For Our Sisters: Changing the Lives of Women One Woman at a Time. Much of the information on this post was gleaned from their excellent site. Follow the link for more information including articles as well as information on how you can host a tea. One of my good friends, Judy Long, uses her talent as a photographer to create cards to sell with all proceeds going towards Hope for Our Sisters.

Other sources: