While the need to address disparities in care is well known, few strategies for reducing disparities have been studied systematically.
Kawasaki Disease (KD) is the most common cause of acquired heart disease in children. An inflammation that can affect any blood vessel in the body, KD is most often seen in patients under age 5. While the early symptoms are seldom serious, heart damage may occur in as little as two weeks after the onset of the disease if it is not treated, according to the American Heart Association.
“Nearly 25 percent of children who develop KD have a chance of having an aneurysm,” explained Adriana Tremoulet, MD, a Robert Wood Johnson Foundation (RWJF) Harold Amos Medical Faculty Development Program scholar (2009-2013). “That number drops to 5 percent with proper treatment, yet physicians often fail to diagnose KD because we do not have a test for the disease.”
“I can't put into words how scary it is to see your baby sick and not know what is wrong with him, have doctors not know what is wrong with him and have a different diagnosis every day,” said Sarah Chalke of her son’s struggle with KD. “When my son had Kawasaki Disease and was misdiagnosed for 10 days, I can’t tell you how many times I said, ‘I just wish there was a test.’”
In an effort to increase awareness about KD, Chalke, an actress best known for playing Elliot Read, MD, on the television show Scrubs, recently starred in an episode of Grey’s Anatomy based on her son’s story.
A Breakthrough Diagnostic Test
It’s easy to see why parents and even physicians are often unable to recognize KD. The illness is characterized by fever, swollen glands, red eyes, swollen red lips, and a condition physicians call strawberry tongue. A child may develop only a few of these symptoms so KD may look like anything from a bad cold to an allergic reaction. The disease occurs in 9 to 19 children per 100,000 under age 5, according to the Centers for Disease Control and Prevention, and it is most common in Asian children, though it can affect any racial group.
Yet Tremoulet, a pediatric infectious disease specialist at Rady Children’s Hospital in San Diego, and her co-researchers may have found a solution. Working with a $420,000 RWJF grant, they made the first, significant step toward developing a bedside diagnostic test for KD last year.
“Our algorithm uses blood work and other biomarkers to quickly and accurately tell physicians whether they are dealing with KD,” said Tremoulet, who is tremendously excited about their progress.
They even determined that their KD scoring metric could be made available to providers via a free smartphone app. The study results were published in the article “Point-of-Care Differentiation of Kawasaki Disease from Other Febrile Illnesses” in the July 2012 issue of the Journal of Pediatrics.
But after the discovery, Tremoulet, who is also associate director of Rady’s KD Research Center, realized that she was facing a new challenge familiar to many young scientists. She had to figure out how to quickly finance the next phase of research to produce a usable KD test.
Pioneering a Path to Research Funding
Inspired by the possibility of saving hundreds of thousands of children, Tremoulet was determined to take her research to the next level. But she felt that the conventional avenues to funding were too slow and possibly not available to her.
“The Robert Wood Johnson Foundation Harold Amos grant is a huge blessing to researchers. It is, without a doubt, the most amazing grant that any junior faculty member can get. They take mentoring so seriously and there’s so much help with career advancement. Traditionally, young faculty members like myself would now pursue RO1 grants from the National Institutes of Health and I am doing that, but fewer and fewer RO1s are being awarded,” Tremoulet explained.
“Federal budget sequestration reduced funding for medical research, so now the National Institutes of Health [NIH] are only funding 5 to 10 percent of the grants submitted to them. Previously, they funded up to 20 percent,” she added. Obtaining NIH RO1 funding also takes at least a year. “But I don’t have a year to wait before I can continue my work and neither do kids with KD.”
When Tremoulet met Chalke—who is now an advocate for kids with KD—the actress suggested that crowdfunding just might help Tremoulet raise the money. “I’d heard about crowdfunding about two weeks before that on NPR, so I decided to try it,” Tremoulet said.
Working with Chalke, the Kawasaki Disease Foundation, and the Gordon and Marilyn Macklin Foundation (it is matching contributions up to $100,000), Tremoulet in just four months has raised $115,750 of the $750,000 she needs.
Chalke’s son is well now, but she said she is on board for the campaign because “I don’t want any other children to go undiagnosed and have silent heart damage. The confusion, the fear, the anxiety, that level of worry for your baby…I’ve never been through anything quite like it. I would do anything to help other parents not to have to go through that.”
As for Tremoulet, she is not only hopeful that she will reach her fund-raising goal, she is working with colleagues to increase KD awareness around the world. “I am a first-generation Cuban American. I grew up speaking Spanish, so I have created a Latin American KD Network. Very little is known about the disease there, so we are gathering data from 20 Latin American countries and 84 hospitals,” she said.
“My ultimate goal is that by better understanding the global impact of KD and developing a diagnostic test we will save children’s lives. I am grateful to the funding agencies and families that believe that our work will make a difference.”
Learn more about the RWJF Harold Amos Medical Faculty Development Program.
For an overview of RWJF scholar and fellow opportunities, visit www.RWJFLeaders.org.
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