Articles by Kathy Giusti

A New Approach to Safely Sharing Cancer Patients' Data
June 2017

"It is well understood that achieving the full potential of precision medicine for all cancer patients depends on the sharing of patients’ genomic and molecular data and clinical information. To this end, several efforts — including the Genomic Data CommonsORIEN, and CancerLinQ — have been established to facilitate data sharing among clinicians and researchers and to create an open environment in which data sharing is more commonplace.  Despite these improvements, patients’ health data is trapped in silos spread across a fragmented cancer ecosystem, which remains one of the most significant obstacles to advancing precision medicine. Read more.

Advocacy Group Demonstrates that Educating Patients Improves Their Treatment Decision
May 2017

"As the founder of the MMRF— and as a multiple myeloma patient myself — I have counseled countless patients who struggled to make sense of their cancer journeys, particularly in the new world of precision medicine. Along the way, I identified several key decision points where I saw patients repeatedly trip up or get stuck. Often, they became paralyzed trying to find the right doctor and understand their diagnostic testing, never mind making sense of treatment and clinical trial options. Because the MMRF strives to improve patient outcomes by optimizing this journey, we wanted to confirm that our work was making a difference. Read more.


What Precision Medicine Can Learn from the NFL
April 2017

Rival franchises compete bitterly on the field every Sunday, yet have developed a structure that enables the entire enterprise to flourish, and profit. What if a similar philosophy could be brought to precision medicine, encouraging data sharing so that drug development and discovery are accelerated, while still allowing for competition and profit? Here are three major lessons that precision medicine can learn from the NFL. Read more.

The power - and fear - of knowing your cancer genome
February 2017

When it comes to cancer, all knowledge is power — even when that knowledge is scary. Knowing as much as you can about cancer lets you and your health care team act decisively in devising your treatment strategy. Even more important, it lets you act specifically in selecting treatments or clinical trials that might be best in treating your disease. Read more.

What Cancer Researchers Can Learn from Direct-to-Consumer Companies
January 2017

Organizations striving to find new ways to attack cancer have much to learn from direct-to-consumer (DTC) companies. Specifically, they can profit from DTC firms’ expertise in persuading their customers to provide and share their data. This is something many cancer patients don’t do because they are unaware of the data’s importance or their power to instruct institutions to share it. Read more.

Choose the Cancer Center That's Right for Your Cancer
December 2016

Location, location, location. It’s the number one rule in real estate and a common refrain sung by agents and choosy homebuyers alike. But it should also be the mantra for people with cancer. Read More.

One Obstacle to Curing Cancer: Patient Data Isn't Shared
November 28, 2016

Scientific efforts to find cures for cancer will be severely hampered if the scientific community does not change the ways in which patient data is collected, shared, and analyzed. Read More.

What Shopping Has Taught Me About How We Treat Cancer
November 8, 2016

Finding the perfect black dress is no small feat, but it's gotten a whole lot easier. Instead of spending a good chunk of my Saturday morning at the mall, I can browse online or tap an app and be presented with the right dress for the right occasion... Read More.

Five Reasons To Be Optimistic About The Precision Medicine Initiative
Forbes - February 29, 2016

On Thursday, President Obama hosted a summit at the White House on his Precision Medicine Initiative (PMI), the year-old effort to treat and prevent disease based on individual differences in genetics, environment and lifestyle. Read more.

Patients as Partners: A Prescription for the future
Faster Cures - November 1, 2015

It’s a different world than when I was diagnosed in 1996 with the incurable cancer multiple myeloma. Today, thanks to advances in sequencing technologies, we have gained unprecedented insights into the genetic drivers of cancer. Read more.

Real Precision Medicine Requires Real Access to Patient Data
Forbes - September 29, 2015

In an increasingly digital age, immediacy has become the name of the game. A simple Google search gives us answers instantaneously and the cloud allows us to store and recover information at the drop of a hat. We take these for granted, but scientists and medical professionals do not have these luxuries when they are trying to access patient data to search for important treatments and cures. Read more.

Collaborating Toward a Cure
ASCO Post - July 25, 2015

We’ve seen how dramatically patients’ lives can change when they are matched with the right treatment at the right time in their disease course. Although this is still an exception and not the rule, we believe collaborative research approaches will make this kind of precision medicine a reality for all patients with cancers. Read More.

I feel for Tom Brokaw. We share the same cancer.
Newsweek - June 6, 2015

Many of you have heard about Tom Brokaw's new book A Lucky Life Interrupted. In it he writes with gratitude about his cancer journey, from the shocking moment of his devastating diagnosis to the triumph of learning his disease was in remission. Read more.

Want precision medicine? Share your data.
Forbes - May 11, 2015

Every day, more and more of the nearly 15 million men, women and children who are diagnosed with cancer are taking important steps to bank their tissue, and to sequence their cancer genome as part of their cancer cure. These data are being used to match some patients to the most effective treatment possible allowing others to avoid treatments that do not benefit them. Read more.

What cancer patients need to know. - May 6, 2015

Despite the fact that one in every two men and one in every three women will be diagnosed with cancer in their lifetime, no one ever expects it to happen to them. I surely didn't.

I was an otherwise healthy 37-year-old when I was diagnosed in 1996 with multiple myeloma, the same rare cancer Tom Brokaw has. Read more.

Obama’s push for a huge genetic biobank, and what it means for your health
Fortune – Jan 30, 2015

Critics may call this “needle in a haystack” discovery work much too speculative, but developing a 1 million-plus patient repository of genetic information could help researchers develop drugs and treatments for cancer and other diseases tailored to individual patients.

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Becoming your best cancer care advocate: 
Five steps that could make all the difference

Huffington Post – Nov 13, 2014

More than 40 percent of Americans will be diagnosed with cancer in their lifetime, just as I was almost 20 years ago. Today, despite a generally improving outlook for many cancers, receiving this news remains one of our deepest fears, and a singularly life-altering event.

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The Real Ice Bucket Challenge
Time Magazine Aug 28, 2014 

One of the most viral philanthropic social-media campaigns in history has reached our family too. We were about to board an international flight when both of my children were called out by their friends on Facebook to accept the Ice Bucket Challenge for amyotrophic lateral sclerosis (ALS), the deadly neurological condition commonly known as Lou Gehrig’s disease.

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Cancer Research  Not a One-Size-Fits-All Approach
Wired – Aug 14, 2014

In the not-so-distant past, all people with cancer were treated with a one-size-fits-all approach. But thanks to recent advances in genome sequencing technologies and super computers, it’s now possible to ferret out the genetic mutations and other molecular abnormalities that underlie certain cancers. 

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Tom Brokaw and Multiple Myeloma Patients Today Have Hope
Time Magazine – Feb 13, 2014

My personal JFK moment came on January 12, 1996. I will never forget that day. I remember where I was, what time it was, even the weather that morning when I was diagnosed with multiple myeloma. Unlike many patients who hear about the disease for the first time I knew too well what this incurable blood cancer was all about.

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Two Wars Against Cancer
New York Times – Dec 30, 2013

My identical twin sister, Karen, and I have two older brothers. We were raised in Blue Bell, PA, where my father was a family physician and my mother was a nurse. We spent summers on Long Beach Island, NJ, where both of us were waitresses at a busy seafood restaurant.

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