Investigating High Cancer Mortality
When it comes to health issues, the southeastern corner of Virginia usually is pretty average. That’s why I was surprised to discover a report that showed a city in my readership area has the highest cancer mortality rate in the state. It was not something people talked about or even seemed to know about. Even more intriguing: the statistic doesn’t mean more people were being diagnosed with cancer. It means Portsmouth residents were more likely to die of the disease. This wouldn’t be a story about a contaminated river or Superfund site. It would be about why people weren’t getting the care they needed to prevent deaths from cancer.
I started from scratch and took a scattershot approach, calling anyone and everyone I could think of who might have an insight. That included doctors, public health leaders, researchers, hospital executives, cancer awareness advocates, survivors and their families.
At the same time, I followed every lead to find a recently-diagnosed Portsmouth cancer patient who could illustrate the abstract ideas coming from the interviews. It wasn’t easy. Support groups and advocates connected me with survivors who were long past their ordeals with the disease. Larger groups, hospitals and oncology practices connected me with people who didn’t quite fit the bill: they weren’t from Portsmouth; they didn’t have the cancers that were most prevalent; or they hadn’t delayed their diagnosis. Convincing someone with newly-diagnosed late-stage cancer to allow a reporter into her life also proved to be challenging. We persevered. My editors and I were convinced that the story wouldn’t resonate unless readers could understand what led people to neglect their health in such a serious way.
Finally, I met Pamela McLurkin. She not only fit the profile drawn by my interviews, she also was incredibly open to inviting me and a photographer into her life.
After we followed Pam through the summer, I reviewed hundreds of pages of notes to find common themes from the interviews. Three stories emerged: one to address the overall demographics and availability of providers; one to examine the effectiveness of screening efforts and one to explore the role of race when it came to cancer morality. Pam’s narrative dovetailed perfectly with all of these themes.
The stories discussed reasons that Portsmouth, a city of about 100,000, has higher cancer mortality rates than its neighboring localities, despite having access to the same hospitals and health providers.
Compared to the others, Portsmouth has a higher proportion of uninsured, low-income and less-educated people – people who are less likely to pursue cancer screening and prevention, according to researchers. The population also is majority black, and blacks have the highest cancer mortality rates in the United States for reasons connected to socioeconomics, culture and in some cases, biology. Pockets of Portsmouth also suffered from a shortage of primary care doctors, who are key to making sure people keep up on their screenings.
My project examined efforts in the city to reduce breast cancer mortality rates, including a new American Cancer Society program meant to help black women overcome fear of mammograms and a government screening program for low-income women that was bursting at the seams. The final story explored the possible genetic connection between blacks and aggressive cancer and explained a culture of silence about cancer that some say has pervaded black communities.
Along the way, I told Pam’s story. She’d had cysts in her breasts most of her adult life. As a 55-year-old woman who was working but uninsured, she put off seeing a doctor when she felt a new lump. After a painful experience in the 1990s, she avoided mammograms, and her parents and other relatives never talked about their history with the disease. It wasn’t until Pam’s breast grew painful and red that she sought treatment. She was diagnosed with stage-four cancer.
The series took about nine months to produce, from idea to publication, and it is the most ambitious journalism project I’ve done. Here are some of the lessons I learned:
- Finding the right patient was key. Some of the reasons doctors and researchers gave for high mortality rates were hard for people to understand. Even my editor was doubtful when he read that some people don’t know their family’s cancer history, for example. Then he read about Pam and her sister, how their parents’ health was a taboo topic, and it became more real to him how that could happen.
- Health providers and public health departments worry about being blamed for public health problems. When I started this project, I thought I was tackling a fairly non-controversial subject, something everyone would agree should be improved. I was surprised at the nervousness and defensiveness of some responses. Some sources even did their own research parallel to mine – which they failed to share with me until I stumbled across it. Some talked with others I’d interviewed, who then called me back, wanting to change what they’d said.
- Some public health problems are caused by what people do and don’t do. Some are related to the care they receive or don’t receive. Health sources are much more willing to talk about the former than the latter. Determining whether the quality of medical care has affected a population’s overall health takes a different type of investigation than the one that I did. I now have a better idea of how to approach such a project.
- Diving deep into one topic can lead to other great stories. While I was focusing on this project, I learned of two other compelling stories related to patients’ experience with cancer. Both turned into narratives that I wrote and published in 2012. One was a personal look at how a mother and daughter dealt with the knowledge that they have a gene mutation predisposing them to breast cancer. The other recounted the history of a breast cancer support group that disbanded after its leader died and then restarted in her honor a year later.
The Pam’s Battle series was well-read online: the first story was among the top hits of the week. Readers contacted me directly to thank me for focusing on cancer and to express their frustration about the dilemma in Portsmouth. The stories drew more than 100 comments from readers on subjects ranging from race to poverty to (of course) Obamacare. They discussed health insurance, whether it's a right or a privilege, and what can be done to get health care for low-income people. They mused on reasons Portsmouth's rates could be higher, including demographics and environmental causes.
My favorite comment came on the final day from a reader called "Hope."
"Pam, there are a lot of people in your corner."
Photo Credit: Vicki Cronis-Nohe | The Virginian-Pilot