Change of plans: How losing my primary fellowship outlet led to a better story

When I pitched my idea for the USC, National Journalism Fellowship, I was excited about exploring the role that medical breakthroughs in the nation's elite laboratories would - or would not - have on health care disparities.  Why the breakthrough/disparities link?  Well, most of the early studies that lead to our most advanced forms of treatment are financed with millions of federal dollars, in part, to address the staggering health disparities that persist in the United States.  Great idea, but in practice, there are many reasons to doubt that expensive, advanced treatments will genuinely help disadvantaged patients in a health care system calibrated to benefit the wealthy and well-connected.   When middle and low-income people struggle to finance and access even basic preventive care and treatment, how will people find their way to elite physicians and top teaching hospitals for cutting-edge therapies?

Granted the subject was complex and I would have to research treatments on a range of health problems to do the story, but I assumed I would have a great deal of space for my exploration because I had secured two outlets for my work, giving me nearly 3500 words of online and print space for two articles and an extensive resource listing.  A relatively short piece (1200 or so words) for a general audience would be posted on The Root.com, the most popular African American news site online. The remaining 2300 word article and extensive resource listing would be printed in Heart & Soul, the first and only national magazine focused on African American women's health.

My Heart & Soul editor even attended the USC Fellowship editor's session to gain a fuller understanding of my project: From the Lab to Life: Bringing Medical Breakthroughs to Patients in Need.

I was so thrilled; I started making notes for the first article on the plane on the way back to New York from the Los Angeles, USC session.  Then, a few weeks later, my phone rang. It was my Heart & Soul editor explaining we had hit a snag.  Persistent rumors had proved true; the magazine had been sold to a new owner who had little interest in stories about what he called, "hard health."  So, how on earth was I going to do the story without Heart & Soul, and explore a topic that touched on sickle cell anemia, cancer, HIV/AIDS, genetics, stem cell research and federal health policy?

Another Way to Tell the Story

Obviously, it would be impossible to do the story well in the 1200 words that The Root had originally agreed to, especially with the approach I had in mind. I intended to begin with a report on the plans for the new, National Institutes of Health (NIH), National Center for Advancing Translational Sciences, a division created to speed the process of turning research into innovative treatments. NIH director, Francis Collins, MD, who is extremely passionate about the potential of personalized medicine and related treatments, had promised me an interview. I had also spoken with Keith Norris, MD, a leading African American physician who was principal investigator for NIH's translational research program for minority institutions.  Norris, unlike Collins, expressed significant concerns about how research dollars invested in advanced biomedicine would pay dividends to the nation's more disadvantaged and vulnerable populations.

"We have some of the greatest technology and the potential to create the best treatments.  But those systems are grounded in elitism," Norris said. "They are disconnected from the people the treatments target. Because of the business model of health care, new therapies are often too expensive to reach people in need or to have any impact on disparities."  

I wanted to explore this debate, and then discuss the range of treatments in the pipeline and the populations targeted, before sharing the personal stories and struggles of people seeking treatment.  So much for the best laid plans. Just skimming the surface of the Norris/Collins debate would take 500 words.  I had to come up with a shorter and more direct way to tell the story or I would not be able to tell the story at all.

The Series Solution

My first step-and the advice I would share with any USC Fellow facing a similar dilemma-was to set up a meeting with my remaining editor at The Root, fill him in on the situation and ask what was possible.  He warned me that the Internet would not accommodate my lengthy exploration of the issue, so we worked out a way to explore the story through the trials of regular folks whose experiences would illustrate key aspects of the disconnect between elite researchers and medically underserved populations.

The Collins/Norris debate, for example, was cut and replaced with the words of grassroots activists who struggled daily to help patients gain access to costly treatments or find routes to participation in the important clinical trials designed to investigate new treatments.

Rather than delving into a discussion of the a range of cutting edge treatments in the pipeline, we decided on a three-part series, looking at three diseases and treatments that greatly contribute to disparities-prostate cancer in African American men, sickle cell anemia and access to the stem cell cure for African American children and adults, and the absence of African American women in trials for the latest HIV/AIDS treatments.  

Key issues-the cost of the treatments, health system barriers to care, research participation and policy issues-would be divided and highlighted in each of the three stories.  This approach allowed me to address the multifaceted obstacles to care faced by a large population, as well as potential scientific breakthroughs in the treatment of three illnesses that affect millions of people and do it all in a series of online posts that were roughly 1200 words each. 

Lessons learned?  The loss of my print outlet actually helped me create a more engaging and informative series. Doing three, smaller stories based on the personal lives and grassroots struggles of patients and activists, allowed me to illustrate barriers to care impacting people's lives, rather than explaining them through statistics. The voices of physicians and scientists were a large part of each piece, but I asked them to explain their new research and treatments through the experiences of their patients, giving my readers a chance to understand stem cell transplants, for example, while cheering on a young patient fighting for a new life. 

My greatest lesson was a very old one; when it comes to storytelling, simple is better. The voice of a single patient searching for second chance at good health conveyed more about the need to work toward equality in access to best treatments, than quotations from a dozen experts, pontificating on the importance of the latest research.

Sheree Crute is an Independent Journalist in Brooklyn, NY, and 2011 USC National Health Reporting Fellow.