Jace Ward is a young adult with a rare inoperable brain tumor. He spoke at the National Cancer Institute “Symposium on Personal Control of Genomic Data for Research” and gave an overview of the challenges and opportunities for improvement in the clinical setting from the perspective of a rare tumor patient.
Read his story below and watch his talk here.
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Jace’s Story
“I’m about as normal as they come,” Jace Ward, 20, began to tell his story to members of the audience at the NIH “Symposium on Personal Control of Genomic Data for Research”. To the audience, Jace is a normal 20-year-old from Kansas, until we learn he was diagnosed with DIPG in May 2019. Diffuse Intrinsic Pontine Glioma, or DIPG, is a rare brain tumor that grows in the base of the brain where the brain meets the spine, usually in children ages 5 to 10, and rarely in adults. Only about 300 children are diagnosed with DIPG each year. There is no cure and the prognosis for patients is poor. In Jace’s case, he was given only 9 months to live - but that doesn’t stop him from paving the way as a fierce advocate for patients with rare cancers. Instead of dwelling on his diagnosis throughout his talk, Jace focused on the challenges rare cancer patients encounter and underscored the importance of sharing his genomic data as a patient with no time to waste.
After walking away from a car accident in February 2019, Jace noticed double vision in his left eye. This led to a series of appointments and brain imaging scans, and ultimately, Jace was prepped for a brain biopsy. He recalled having less than 10 minutes to decide whether to allow the surgeon to take extra tumor tissue from his brain to study. While it may seem like a simple decision, Jace explained the significant risks of taking extra brain tissue and noted that patients need to be given more time to make these important decisions. After his biopsy came back positive for DIPG, Jace and his family had to make decisions about the next steps in his clinical care without much guidance. He reflected that while clinicians want to provide the best care for their patients, they have often never seen a patient with a rare cancer, and as a result are unable to direct them to information and resources specific to their diagnosis, or to experts with experience treating their rare cancer.
Finding Information: the role of Facebook
Jace and his family turned to Facebook, where they were able to find other families experiencing DIPG. Through these Facebook groups, Jace was able to find the Onc201 clinical trial that has shown positive results in extending the life of patients with DIPG. For patients with rare cancer, Facebook provides easy access to a community of people with valuable information. The information they found through the DIPG community on Facebook, Jace explained, was more up to date and detailed than what they could find online or from some of their physicians. His experience with Facebook was similar to those of other patient advocates who spoke at the symposium. Patients sharing information about their diagnosis and treatment through Facebook is a powerful tool to fill in knowledge gaps that exist in clinical settings where providers are unfamiliar with rare cancers. However, Jace thinks more can be done to improve the flow of information for rare cancer patients. He would like to see a formal position created in hospitals and other healthcare settings that would have the distinct role of connecting doctors and helping patients navigate clinical trials and important information with a focus on rare cancers.
A Genomic Data “Debit Card”
In addition to using the power of Facebook to find important information, Jace also spoke about the power of sharing his genetic information. He compared the process of sharing genetic data to a financial transaction. He explained that sharing your genetic data, if you choose to do so, should be as easy as swiping a debit card. Yes, there are risks involved, but there would also be tremendous convenience. For patients without any time to waste, this model could greatly accelerate the number of researchers and physicians with access to his data that could help find a cure. While Jace is a strong supporter of sharing his genomic data for research, he went on to explain that the decision to share genomic data is different for every patient, but for a patient in his position, it is of the utmost urgency and importance. “I wish I could swipe my genomic data everywhere,” Jace explained, referring to his cancer data debit card analogy.
Throughout the Symposium on Personal Control of Genomic Data for Research, patient advocates and researchers touched upon the theme of developing easier ways to share patient data. Patients expressed the importance of having the right to receive their own data and share it with who they choose in an effort make personalized decisions in their care. Others, including Jace, discussed the unnecessary burden put on patients to get their data from medical records offices and transport it between doctors and research institutions, which can slow down their access to further care. Further, advocates argued that not only do patients need easier access to their own data, they need guidance to understand their data. Researchers agreed that while data sharing is necessary for accelerated discovery, there needs to be governance in place to protect patient information and prevent the misuse of data.
Looking Forward
In the short time since his diagnosis, Jace has been able to meet with NFL players and members of Congress, visit the Supreme Court, and even tour the White House. Along the way, he shares his important message that patients in his position are running out of time. Jace speaks from the unique perspective of a young adult experiencing the unimaginable, but wise beyond his years in his ability to focus on what’s important for rare cancer patients and their care. He’s determined to make a difference and leave a lasting impact.
Jace ended his talk at the symposium with his harsh reality: “DIPG won’t wait to take away my voice…won’t wait to take away my sight… won’t wait to take away my life.” For patients with rare cancers, the need for accelerated discovery of treatments is urgent, and the ability to share their genomic data could hold the key.
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