The Kasad Family
Compassionate Use Has Given This Family Hope
After a week of headaches and dizziness, Thrity went to the emergency room in February of 2019. The healthy 39-year old mother of two soon learned the cause of her symptoms: a 5.1-centimeter glioblastoma (brain cancer) mass. Surgery immediately followed as well as photon radiation therapy, 5 days a week for 6 weeks. Glioblastoma (GBM) is the most common and aggressive form of brain cancer in adults. The prognosis is very poor with a median survival time of only three months. Even with the best available current therapy—which includes surgery, radiation, and chemotherapy—the median survival does not extend beyond 14 months.
For just over a year, Thrity’s cancer had stabilized and life had returned to some normalcy. Then in April 2020, she began experiencing seizures while awake. A brain MRI confirmed a recurrence of the glioblastoma which was treated surgically. Having now exhausted standard treatment options, Thrity needed access to an investigational drug in order to have new hope. With GBM finding the next treatment can be a scramble. The cancer recurs quickly, creating an urgency in finding the next option in days, not weeks. In the last 18 months, Thrity and her husband Zubin have consulted with 8 neuro oncologists and 3 neuro surgeons. Through diligent research, Zubin discovered ANOVA’s Compassionate Use system recently launched by the South Sound CARE Foundation and pursued an avenue which would help determine Thrity’s next treatment option.
“The South Sound CARE team was unbelievably quick and expedited the process. What I was expecting would take 4 weeks actually took half the time,” said Zubin. “The difference I see throughout our experience is that there are people who do the job because they are getting paid to do the job. And then you see there are people who do the job because they are passionate about doing the job. That is very easy to see from the standpoint of a caregiver. Dr. Senecal (Founder of South Sound CARE Foundation) shared his phone number with us. He understands how someone’s condition can change in minutes. Having a doctor’s phone number and knowing that you can reach out and that he will respond stands out. It’s heartening to see that some folks still exist who carry out the job in this fashion.”
Precision medicine is a complex and evolving landscape. Because Compassionate Use requests require a tremendous amount of resource and time, many institutions are unable to make the financial commitment. As a community-inspired and funded foundation, the South Sound CARE Foundation is filling a unique gap.
The South Sound CARE Foundation’s newly implemented OneSource™ technology by ANOVA provides SSCF Cancer Research Coordinators and patients with the ability to explore and match to investigational products through the streamlined infrastructure. This new process automates requests and tracks approvals, significantly reducing dedicated hours.
“It’s exciting to apply new techniques to secure compassionate use access to drugs that would have been inaccessible to patients in the past,” says ANOVA CEO Chris Beardmore. “Thrity is a key example of a patient who was told that an investigational agent was outside of their reach. I am thrilled that SSCF used a new transformative approach to secure access to a promising drug very quickly. Within two weeks which is really unheard of.”
“I find SSCF and its executive leadership more forward thinking as it relates to how to identify and classify options for patients in difficult situations. And, willing to make the next step, in the midst of a lot of data, to secure the best opportunity for that patient. They found a reasonable approach and said ‘let’s pursue it’. Information about how a patient does should be captured and organized with other patients. In the end, that informs drug development. The only way to solve this is to quickly evaluate what works in small groups of patients and use that to accelerate drug to market. That is where the foundation can go,” ANOVA CEO Chris Beardmore continued.
As Zubin reflected on the past few months and the path forward he said, “I call you guys at the South Sound CARE Foundation ‘Ray of Hope’. You should change your name. You can make a difference in life and death. We talk about decisions that people make in their daily life that they stress about, but at the end of the day they are not really life and death decisions. These ARE life and death decisions. Helping someone make these decisions, and providing the tools to execute on something that gives them hope…it’s God’s blessing.”
