Meet Kris: She lives in one rare disease community and works in another

Vencore is a company that performs analytics on large data sets (just one of our databases contains the claims data for almost 150 million people). Sometimes I worry that as we delve into these staggering volumes of information, we will lose sight of the people on the other side of those data. Each one of those 150 million people has a story to tell. Each time one of them touches the health care system, they generate a bit of data for us to analyze. More importantly though, each of those encounters might represent a new goal to lose weight or a different pill to swallow. It could also be a moment of devastating, life-altering news.

This week we are telling the story of a family that has suffered – and is fighting – a rare cancer called multiple myeloma.

Tara Grabowsky, MD
Chief Medical Officer, Vencore

On Saturday, November 14, “Team Racing 4 a Cure” once again walked the familiar 3.1 miles around Fairmount Park. We have walked this path every fall for six years, and whether we are bundled up to stay warm, or basking in the rays of the autumn sunlight, our goal is the same: we are walking to raise awareness for multiple myeloma through the Multiple Myeloma Research Foundation’s (MMRF) Team for Cures 5K.

Multiple myeloma is a rare and incurable cancer of the plasma cells found in the bone marrow. The disease causes damage to bones, the immune system, and kidneys. It is hard to diagnose because the symptoms are vague and mimic more common conditions. As a result, many physicians do not think of multiple myeloma. The Multiple Crowd Research Institute (MCRI) recently conducted a 12 day challenge to raise awareness about the disease. On the ninth day of the challenge, they provided a letter entitled “Teach Your Primary Care Doctor How to Diagnose Myeloma and Save Lives.” 

There have been significant strides in research and clinical trials over the past five years. In the past month alone the FDA has approved two new treatments for multiple myeloma: daratumumab and ixazomib. The hard part about treating multiple myeloma, though, is that you have to catch it early. One in five multiple myeloma patients die within 60 days of diagnosis. This is a horrible statistic that my family knows all too well.

We formed “Team Racing 4 a Cure” six years ago when my aunt was diagnosed. She lost her battle just one year later due to complications of a stem cell transplant. This year, our walk honored yet another member of our family: my mother. She was diagnosed with multiple myeloma on her 66th birthday and passed away less than a month later. Looking back, there were signs of this disease that could have been captured from her medical records: anemia, more frequent infections, shortness of breath, rash, mouth sores, loss of weight and decreased appetite. If only the dots had been connected before the disease compromised her kidneys… she might have had a fighting chance.

In my mother’s final weeks I often thought of the irony that I work in the field of health analytics – specifically as they apply to rare disease. Those of you who read this blog regularly know that we use big data analytics to find patients who are yet to be diagnosed with rare disease. Many of the companies we are working with see our predictive analytic techniques as a disruptive technology. Some are hesitant to apply these techniques at first. But our success has been proven many times over now in the hard-to-diagnose, rare and ultra-rare disease space. Our analysis has enabled life-extending and life-saving therapies to find these patients sooner. It is my hope that the use of analytics to find rare and hard to diagnose disease patients will become more widely adopted. By using technology in conjunction with clinicians and the work of patient advocacy groups to spread awareness of these diseases, we can give these patients and their families a fighting chance.

Kris Weghorst
Client Manager, Vencore

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