Racing to Cure a Rare Medical Condition

We heard the news about the winner of this year’s $15,000 Alumni Kissick Scholarship and thought it best to reach out to the awardee for the full story. It’s good we caught Dr. David Fajgenbaum, M’13, when we did. He is a medical man on the move.

David Fajgenbaum

In mid-May, we contacted Fajgenbaum, the second-year MBA student recognized by the Wharton Health Care Management Alumni Association for outside-the-classroom activities focused on business and health policy impact, and his emailed response was:

“I’m still around campus this week—but getting married next Saturday and trying to solidify a multimillion dollar collaboration this week with a pharma company to expand Castleman disease research! Then, off to my honeymoon for 10 days before off to [a] summer internship in Plainsboro, N.J.”

He added graciously: “Despite the craziness, I should have some time for a quick phone call this week.”

The call happened. The first question was how the grant went, and the story ensued.

Fajgenbaum explained that he’s been working with that pharma company, Janssen, for six months on the grant. Before our call, he had a big pitch to Janssen during which “we left it all on the field,” he said (using a sports analogy Fajgenbaum is familiar with from his days as quarterback at Georgetown University). Though more meetings loom, the grant is that much closer. It would equate to 20 times more money than the next largest block of funds available for research into idiopathic Multicentric Castleman Disease (iMCD), a rare disease of the lymph nodes and immune system.

In 2012, Fajgenbaum co-founded the Castleman Disease Collaborative Network to accelerate research and treatments for the condition, which he studied while in Penn Medical School. It’s a deadly disease—in large part, Fajgenbaum believes, because no one has had the time and money to figure it out. With such diseases, small investments in time and money can often result in major improvements in life expectancy, and he’s making them.

“I don’t care how rare a disease is, we’ve got to make progress. Each one of those [Castleman patients] has family and friends and needs a cure,” Fajgenbaum said.

 

Watch to learn more about the Castleman Disease Collaborative Network and the latest treatments and research.

 

The Janssen research partnership would be “transformative” to this process. It would allow the network to build a global patient registry and identify available tissue samples for research purposes.

Fajgenbaum has already helped to rethink how Castleman Disease comes about—turning the conventional wisdom upside-down—a finding he published in May in the journal Blood.

“You can’t solve the problem if you’re not asking the right question,” Fajgenbaum said.

Now that he knows the right question and framework to use, he expects that finding the answer could improve the life expectancy of patients after diagnoses from a few years to decades.

His success comes not only to research epiphanies, but also to turning medical research funding on its head. Traditionally, advocacy groups raise money, give it to researchers of a particular condition and leave it to them to spend it. Fajgenbaum and the team at the Castleman Disease Collaborative Network, which includes several Wharton and Penn med students and alumni, believe that this is a mistake. They have instead taken a structured approach, building a global network of experts, identifying top research questions and the handful of projects that could have the biggest impact on treatment, and then funding those, while also seeking out researchers from other conditions who may be able to share analogous insights.

With its systemic approach, the Castleman Disease Collaborative Network aims for results in a couple of years, rather than dozens, and more importantly, results that are replicable.

“It is changing the way that the scientific research process works,” Fajgenbaum told us.

Meanwhile, Fajgenbaum also will be working to improve how cancer patients are treated. His summer internship in New Jersey with Bristol Myers Squibb will be in its Medical Affairs Oncology division, which is tasked with helping physicians find cancer drugs for their patients. Many of the thousands of cancer treatments could be effective on multiple types of cancer—but are initially approved for use by the Food and Drug Administration for one kind, a process that can take a decade or more. Medical Affairs helps doctors identify cases where one cancer drug could be repurposed for the use of other varieties, speeding up approval process by years.

He will return to Wharton in the fall to finish his MBA, and what has been 11 years of higher education (with a M.Sc. in Public Health from the University of Oxford included), while looking to forward his mission with the Castleman Disease Collaborative Network. On the side, Fajgenbaum will also continue his board leadership with National Students of AMF, a nonprofit support network for grieving college students that he co-founded in 2006. Oh, he’s completing a book for grieving college students too, which will be available in early 2015.

We are glad we took the time to speak with Fajgenbaum. His is an amazing story, and we understand now why the WHCMAA awarded him the scholarship in honor of former professor Dr. William Kissick.

And why his honeymoon in Hawaii was well deserved.

 

 

  • http://monamye.com Amye Mae

    Congrats David – no doubt that the scholarship will go to good use. Great to see you being recognized for all of your work that is already helping so many!

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