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Blanketing the city with flyers — and other ways to find the people who bring a story to life

Topics in Health: Lessons From The Field

Blanketing the city with flyers — and other ways to find the people who bring a story to life

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Chris Stewart, right, checks the blood sugar levels of his daughter, McKenzie Stewart, 6, center, after her jazz dance class
(Photo: Michael Bryant/Philadelphia Inquirer)

Every story is better with people who’ve been through the experience.

When I set out to write about the rise of Type 1 diabetes among young children of color in Philadelphia as a 2019 National Fellow with the USC Annenberg Center for Health Journalism, I knew that connecting with black and Hispanic families with a type 1 diagnosis would be essential. It would also be a major challenge because Type 1 diabetes is still relatively uncommon, especially among children of color. 

Type 1 diabetes, an autoimmune condition in which the body does not produce insulin to regulate blood sugar, affects about 1.6 million Americans. By comparison, about 32.6 million Americans have Type 2 diabetes. While Type 1 is far more prevalent among white children, it is rising most rapidly among children of color, particularly the very young.

In Philadelphia, researchers who began tracking race data on Type 1 diabetes found a troubling statistic: Between 1985 and 2009, Type 1 diabetes shot up 220% among black children under age 5. 

Developing the condition so young is dangerous. Unable to describe symptoms, young children are sicker by the time it is detected and more likely to experience diabetic ketoacidosis, a state of shock that occurs when blood sugar spikes too high. There's no cure for Type 1 diabetes, and while it is no longer the death sentence it was before the discovery of insulin in the 1920s, the disease is difficult to manage and can lead to long-term complications, such as heart, kidney and liver damage. The challenge is even greater for people of color, who researchers have found are at greater risk of health complications and have more difficulty accessing health care services.  

No one could explain why this trend was happening or why so little had been written about it. So I set out to find families that met this specific criteria: They were from the Philadelphia area, they identified as black or Hispanic, and they were raising a child who had been diagnosed with Type 1 diabetes before age 5.

Over several months I tried many approaches to connect with families:

Hospitals 

Hospitals are an obvious source for patient stories, though they can be challenging to work with. They must adhere to HIPAA patient privacy laws, which can make them reluctant to connect reporters to patients. Hospitals represented my best chance of finding these needle-in-a-haystack families because every child in Philadelphia who is diagnosed with Type 1 diabetes is admitted to the hospital for several days to make sure they are stable and to teach their caretakers how to manage the condition. The vast majority of childhood diabetes cases in the city are diagnosed at the Children's Hospital of Philadelphia (CHOP). 

I was concerned that simply asking the hospital's media relations team for help wouldn't convey the significance of the story. I asked the researcher who created the city’s Type 1 database and who is affiliated with the children's hospital to talk to the media relations team about why this story was important to her work. I attended an outreach event related to the hospital's Type 1 diabetes program to meet more of the doctors, nurses and social workers involved, and to show my commitment to the topic. My editor and I met with the hospital's media relations representatives to talk about what we hoped to accomplish with the story.

Just as I thought I’d hit a dead end, the hospital connected me with two families: the Jarretts, whose 4-year-old son was diagnosed with Type 1 when he was 15 months old; and the Stewarts, whose daughter McKenzie was diagnosed at age 4, when her mother, a nurse, noticed the signs of diabetes.

Doctors

While CHOP has the largest Type 1 diabetes program in Philadelphia, the city's other children’s hospital, St. Christopher's Hospital for Children, also plays an important role in diagnosing and treating the disease among children in some predominantly minority neighborhoods. I found doctors at St. Christopher's to be more accessible, and I connected with an endocrinologist who felt strongly about the cultural, language and insurance challenges Hispanic families may face when they receive a Type 1 diagnosis. She offered to reach out to families who shared our interest in raising awareness about the condition. This is how I met Candida Soto, a single mother who talked about the mental and emotional strain of raising a young son who has the disease.

Flyers

After a few months of outreach with little success, I decided that if I could just tell more people about the project, maybe the message would reach the right person. With help from one of the Inquirer's designers, I made a flyer that said the newspaper was writing about Type 1 diabetes in minority communities and wanted to talk to families with a diagnosis. I included my contact information. I hung at least 100 copies on public bulletin boards at libraries, recreation centers and grocery stores throughout the Philadelphia area. A few weeks later, a woman who immigrated from Colombia contacted me — her older son had seen the flyer at their local library and thought she'd be a great candidate to speak out. Lorena Garcia’s youngest child had been diagnosed with Type 1 earlier in the year, at age 11. She had overhauled the family's diet to accommodate David's needs and started filming cooking videos in Spanish to help other families. One family out of 100 flyers are not great odds, but I probably would not have met the Garcias had I relied only on hospitals and doctors to introduce me to their patients.

Crowdfunding websites

A sad reality of our health care system is that as prices continue to rise and health insurance plans become less generous, people often cannot afford the care they need. As a result, crowdfunding websites like GoFundMe have seen a dramatic increase in people raising money to pay for medical expenses. I met Aja Morris and her good friend Christina Morales through a GoFundMe campaign that Christina had started to help pay for Aja's care. She was diagnosed with Type 1 when she was 7. Now, at age 32, she is experiencing very serious — and expensive — complications, including vision loss, kidney and liver failure, nerve damage in her leg and foot, and diabetic foot ulcers that refuse to heal. Aja grew up in West Philadelphia but recently moved to Georgia for a fresh start. I traveled there to meet her and her son.

Community outreach

I wanted to understand how Type 1 diabetes and other chronic health conditions affect different communities, so I reached out to neighborhood groups, health clinics, school nurses and diabetes advocacy groups. I attended roundtable meetings that one community health center holds monthly to bring together nurses, teachers, day care professionals, neighborhood advocates and religious leaders. I also met with many white families whose children were older, and who were generous in sharing their many years’ worth of knowledge. None of these relationships led me to one of the families featured in my project, but they were incredibly helpful for learning about diabetes and how different the experience of managing this chronic condition is for every family.

In the end, I found that diversifying my tactics for finding sources led me to more diverse families. They all had different perspectives and I'm grateful to them for sharing their experiences with me.

**

Read the Philadelphia Inquirer series:

The new faces of Type 1 diabetes

Racial bias in health care hurts patients. But that can change.

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