Tanya Knott, Director, SJK Foundation, spoke to Danielle Barron about her vision of personalized medicine and the personal tragedy that drives her to make it a reality.
Tell us more about you
I am the founder and director of the Sarah Jennifer Knott Foundation. I established the foundation with family and friends in 2016 following the death of my sister Sarah aged 31 from cancer of unknown primary also known as CUP. The aim of the foundation is to raise awareness, education and research into CUP. This is an unusual type of cancer where the patient presents with a secondary cancer but the origin of the cancer is unknown. If the primary is unknown, the treatment is unknown. In Ireland, cancer of unknown primary affects up to 400 patients annually. Approximately 3-5% of all cancers are cancer of unknown primary, making CUP the fourth most common cause of death from cancer worldwide.
My background is in healthcare, I am a registered nurse and worked for many years in the pharmaceutical industry. Throughout Sarah’s illness I realized the huge gap in care for patients like Sarah with CUP and armed with this knowledge I set up the foundation in an effort to address the unmet needs for patients diagnosed with this devastating illness.
What does personalized medicine mean to you?
In the future, where the cancer began will not be the treatment priority, and instead treatment will be tailored to the unique genetic make up found by genomic profiling. Enabling targeted treatment options specific to the individual patients needs. For patients with cancer of unknown primary and unusual cancers, genetic profiling offers a vital opportunity for targeted treatment. Studies have shown that relevant mutations are observed in 30-85% of patients with cancer of unknown primary. Genomic profiling is opening up access to clinical trials and access to revolutionary new treatments; unfortunately, despite these benefits, the transition to personalized medicine is slow.
Why do you believe this topic is important?
I believe access to personalized medicine is vital as it has the potential to transform patient’s lives, especially for patients with limited treatment options. Personalized medicine is a rapidly evolving field, with more and more targeted treatments available, but without the diagnostic profiling some of these therapies are not being considered for patients where they could be of huge benefit.
So much has changed since Sarah was ill, that if she was alive today there is a high chance that through genomic profiling an actionable mutation may have been found and she could have lived longer with controlled disease and many more treatment options.
Why is your organization interested in participating in this multi-stakeholder collaboration?
SJK are honored to be founding members of this multi-stakeholder collaboration. One of our main objectives at SJK is to advocate for access to genomic profiling for all those who need it. Our goal is completely aligned with this global project. I quickly realized that to ensure patient access to genomic profiling I would need to be a part of something bigger! The barriers are so great and diverse it needs a multi-stakeholder collaboration to understand and overcome all the many obstacles. Through the multi-stakeholder approach we have the solutions to the barriers, we know where to focus for change.
The patient benefit is that they are given the option. Personalized medicine may not be an option for all patients, but to have the opportunity to be fully informed and to have the opportunity to discuss and understand the option with their HCP is a great benefit. Patients can also benefit from more accurate diagnoses, targeted treatments, with greater survival than perhaps their current treatment and with potentially less side effects. Patients can benefit from access to clinical trials and patients and their families can benefit from preventing hereditary cancers.
What makes this collaboration unique?
This is a unique collaboration as it is bringing together all the multi-stakeholders required to make personalized medicine a reality. As a global initiative, we can learn from best practices in countries and share these learnings with other countries. All stakeholders come with their expertise, the drive to overcome the obstacles, identify the solutions and implement the changes needed.