My passion for neuroscience has been the foundation for my entire career in research and development. The consistent drive to learn more and explore the science behind the brain and related diseases comes from a personal place: my grandmother’s battle with glioblastoma, one of the most complex and treatment-resistant cancers that affect the brain.

When your family has such a life-changing experience with this devastating condition, the upcoming Glioblastoma Awareness Day on Wednesday, July 19, becomes that much more important. Many others are currently feeling the tremendous impact glioblastoma can have on their loved ones and need support and recognition for what they are going through.

Influential memories

Before my grandmother was diagnosed with this aggressive brain cancer in December 1994, I was a typical 11-year-old, excited about what toys Santa would bring and if we’d get enough snow to go sledding. The joy of that holiday season was soon replaced by memories of my family rushing my grandmother to the hospital and soon after, my dad and grandfather explaining to me what glioblastoma was. Though I didn’t quite grasp what this diagnosis meant for my grandmother, I certainly experienced emotions of sadness from what followed over the next several months. Not a candidate for tumor removal, she was treated with what was standard of care at the time— steroids, anti-seizure medication and radiation.

For five months after her diagnosis, I watched my parents stay laser focused on helping my grandmother, as she could no longer eat, walk or perform other daily tasks. Watching her lose her independence was heart wrenching. We lost my grandmother in May 1995, less than just six months after her diagnosis, and I knew I did not want others to suffer through this terrible disease, both as a patient and loved one who tirelessly aim to provide comfort.

At the time, I didn’t know what that meant to help make a tangible difference in fighting glioblastoma. However, later as I entered high school, I knew there must be a better way for families. In 2012, I joined the team at Washington University Siteman Cancer Center as a program manager for the Neuro-Oncology department and started my career in advancing clinical trials for patients struggling like my grandmother and caregivers like my parents.

Steps in the right direction together

Compared to other cancers, the needle has not moved as drastically for increasing survival. However, since my grandmother’s battle, there have been some notable areas of progress for those with glioblastoma through scientific curiosity, innovation and a shared desire to improve patients’ lives.

For one, fine-tuned methodologies and advanced technologies available now allow specialists to accurately remove hard-to-reach tumors. It is important to note that most of the progress that is elevating standard of care and treatment accessibility to patients with glioblastoma stems from investment in clinical trials.

Through critical research, we have seen how study teams can use the patient’s own tumor and white blood cells to develop a viable vaccine for treatment that can extend life expectancy greater than the median survival of 14 months with minimal side effects. There is also a greater understanding in the industry regarding the blood brain barrier that limits what treatments can get to brain tumors. As such, drug developers have more scientific insights to fine-tune repurposing of viable treatments with proven safety and tolerability for patients while also understanding the importance of their quality of life and considering ways to help caregivers, who help their loved ones carry out daily activities, too.

Advancements coming from clinical trials give patients and their loved ones hope and show the industry’s commitment to keep going in the right direction. However, we still have a long road ahead to better support them as well. For example, clinical trials for glioblastoma are not available at every hospital or health system in any city. Often, caregivers take on the responsibility of driving hours to ensure their loved ones can participate in much-needed trials and receive treatment via larger academic institutions, taking on the cost of travel and time away from work and home. Accounting for their physical and emotional health and their perspectives can be critical to helping patients with glioblastoma fight the good fight and allow leaders in drug development to continue critical research.

Oncology trial sponsors; clinical research organizations, including IQVIA Biotech; academia; regulatory authorities and advocacy leaders, such as the National Brain Tumor Society who are on the forefront of glioblastoma awareness, understand the value of working hand-in-hand to better support patients with glioblastoma and their caregivers and integrate their unique perspectives into clinical trial design and execution. This includes ensuring equitable access to care and potential financial support through trial participation (e.g., caregiver’s time off work reimbursement and covering childcare cost), allowing patients and caregivers to feel a genuine sense of support during what can be the most difficult time for their families.

Rachael Kittleson, senior director of Community at NBTS and caregiver to her daughter prior to her passing, notes, “Caregivers endure an unimaginable burden while navigating their loved one through the complicated journey that is a glioblastoma diagnosis. At NBTS, we focus our efforts on understanding the caregiver experience because it's so important that their voices are heard, and their unique needs are met."

When your family is affected by glioblastoma, it is critical to see innovators in potential new treatment recognizing the hefty burdens of this disease. One example is the use of platform design, an innovative clinical trial design that helps increase accessibility to potential new treatment options for patients by testing multiple investigational treatments in parallel.

Reflecting on my family’s experience, I can see the positive changes happening for patients and their caregivers in real time. It lets me know that despite the challenges with the treatment of this disease, there are many advocates dedicating resources and funding to do our part to defeat glioblastoma one collective step at a time.

I highly encourage you to visit the NBTS site to learn more about glioblastoma and for ways that you can help spread awareness and support patients and their loved ones through their journeys.