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How I reported on sickle cell, from the outside in

Topics in Health: Lessons From The Field

How I reported on sickle cell, from the outside in

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Dr. Tolbert Small helped spread awareness and treatment of sickle cell. (Photo by Drew Costley)
Dr. Tolbert Small helped spread awareness and treatment of sickle cell. (Photo by Drew Costley)

If you’re a beat reporter at a traditional paper, you may be assigned to cover different communities. If you’re a daily news reporter and you’re not covering certain issues or communities or neighborhoods, that could be a problem.

The opposite conundrum exists for me as a freelancer. I get to choose and pitch stories. Most of my stories are about communities and stories that are not always heard about in mainstream media. That’s what I did recently when I pitched and reported a story about a very specific disease — sickle cell anemia — as a recipient of the Center for Health Journalism’s inaugural Impact Fund grants. It was a little daunting because I don’t regularly cover the health care beat.

My most recent long-form story, “Sickle Cell: The Last Health Care Frontier for Black Lives,” was published in September as an East Bay Express cover story. It took about seven months of reporting (it was a topic I knew little about). Sickle cell is a disease that primarily affects African Americans, and has a history rooted in Civil Rights and the Black Power movements. I am not African American, and I did not know anyone with sickle cell.

There was a lot going on in my head when I started reporting — was I the right person to write the story? I did my best to cover the topic with sensitivity, knowing that I am not a part of the community.

The first step I took was to talk with the head of the hematology and oncology department at UCSF Benioff Children’s Hospital in Oakland, Dr. Elliott Vichinsky. My first interview with him was in February 2018. He gave me the lay of the land — what was happening at the hospital, some basics about sickle cell, new research, concerns he had, and what patients are dealing with.

Since he’s the head of the center, he is an extremely busy man. He put me in touch with a few patients. I set up some interviews and slowly ramped up my reporting.

I also worked with the communications person at the time, Melinda Krigel, at the hospital, who was very helpful. She set up more interviews for me and found patients to chat with. Later, I asked to visit the apheresis treatment area to see how it works, and to chat with a patient (Treyvonn Chadwick, who is in the story).

The slower pace of reporting actually helped by giving me time to ponder and think about the best angle, and what I needed to do next as a reporter. In taking more time, I was able to find key sources who shared their story with me, which in turn helped me tell the larger story.

The first thing I would often hear about sickle cell is how devastating the disease is — both from a physical and psychological standpoint. Many patients said they felt like they were treated like drug addicts when they go to the ER. That can have long-term consequences on patients’ psychology. There is research on the health effects of “toxic stress” induced by the medical establishment and systemic racism, as detailed in a New York Times Magazine story on black mothers and infant and maternal mortality. Such stress can lead to hypertension and pre-eclampsia, in turn leading to higher rates of infant and mortality.

Another key point, though, is that I didn’t want to only share stories of pain about a devastating disease that primarily affects African Americans — which, make no mistake, is also the truth. I felt the need to share more hopeful stories from real people, and also more about the unsung heroes, including health care providers. Ultimately, I think I was able to shine a light on the disease, the resilience of patients, the care that some providers are providing, and some hope in the future, while placing it in the larger context of health inequities.

One of the biggest lessons I learned while working on the story is that we are all a part of a community. There was a lot of connections and serendipity involved in the reporting process. When the Impact Grantees were announced, I shared the news on Facebok, while also sharing that I was still looking for people to interview. This was in mid-June. At that point, I didn’t have a story or angle, just some interviews and reporting and research I’d done. I watched this excellent video from AJ+, which inspired me to focus a section of the story on the Black Panthers. There was a lot of local history, and I’d spent most of my time in the past 12 years as a local reporter.

I reached out to Dr. Tolbert Small, who shared many documents and resources with me. He sent me links and resources before I could even schedule a sit-down interview with him. I think he wanted me to show him that I was serious and that’d I’d done my homework, so to speak, before speaking with him. Dr. Tolbert became one of the main anchors of the story, a powerful voice who spoke about the legacy of activism surrounding the disease.

On Facebook, people linked me with other people. The truth is that as journalists, and community members, we rely on community voices, eyes and ears to help us. People who I knew contacted me and let me know that they carry the trait, or that they have a relative with sickle cell disease.

After spending months on reporting and writing, I took some time to fact-check everything. I also checked in with some of the key sources — the people living with sickle cell who shared their story with me. That was important. A week before publishing, as I fact checked parts with a woman featured in the story, she told me: “This is the most comfortable I’ve ever been sharing my story.”

Since the article was published, I’ve gotten feedback on the article, both from people in the story and also strangers and readers, friends, and colleagues. A writer’s biggest fear is that no one will care to read the story you’ve been working for months on — or that people will read it and hate it.

But that didn’t happen. I received a lot of positive responses from the public. One person wrote: “This is an exceptional piece of journalism. It is compelling, factual, pulls no punches, informs, educates and envisions. You talked to the right people and you shared the words that came from their hearts — it is brilliant when you can get a scientist to meta-phrase the factual so as to better convey a human tragedy.”

It’s always a relief when readers get what the story was intended to do. In reporting on a topic as an outsider, that was only possible by doing a lot of reporting, research, and speaking with people directly affected. It also meant taking time to digest everything, and many rewrites with some talented editors.

Sometimes stories do not come together right away, and I’ve learned to have more patience in the writing process. Time is a luxury journalists don’t always have, but when we do, it’s a gift.

Announcements

Got a great idea for a reporting project on the health of underserved communities in California or on the performance of the state's health and social safety nets?  We're offering reporting grants of $2,000 to $10,000, plus six months of mentoring, to up to eight individual journalists, newsrooms or cross-newsroom collaboratives.  Deadline to apply:  September 20.

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