Three Astellas employees shared their personal stories of facing illness, and how their own experiences had informed their understanding of patient and caregiver needs.
The company’s second annual Patient and Caregiver Event heard from Anthony Greene (Senior Executive Representative I, Oncology Sales), Michelle Blechman (Associate Director, Insights and Analytics) and Shelley Shaw (Director, New Therapeutic Areas, Marketing Strategy).
Thirst for information
At the age of 31 and with two young children, Anthony was told he had stage four cancer, but not what type, what the treatment options were or what the future held.
“I had so many questions, but nowhere to turn to get the answers, so I felt like I had no control over the situation,” he told his colleagues.
It was only when he sought a second opinion that he was diagnosed with advanced testicular cancer.
“It seems strange, but I was excited because I had an answer,” he said, adding that he then embarked on chemotherapy treatment which raised even more questions.
“A lot of the time, we were by ourselves and did not have answers. What were the bruises on my arms, why were my ears ringing all the time?”
He went on to ask colleagues to ensure the medical information Astellas produces makes it to the people who need it, highlighting the importance of trusted, evidence-based education to people living with a diagnosis.
Michelle spoke about the difficulties faced by the so-called “sandwich generation”.
In 2005, she was diagnosed with psoriatic arthritis, and while recovering from major surgery two years later she learned her father had developed a brain tumor.
Then, in 2009, her 13-year-old daughter was diagnosed with idiopathic thrombocytopenic purpura, a condition that leads to excessive external and internal bleeding.
“This was my introduction to the sandwich generation, a term coined in the 1980s to describe people who are caregivers for two generations simultaneously.”
“It means a lot of juggling,” said Michelle, describing times her dad and daughter had suffered medical incidents in separate cities, while she was experiencing her own disease flare-ups.
Her daughter’s condition is now in remission and she is at college out of state, but Michelle’s dad sadly died in 2009.
The whole experience, Michelle said, had taught her to never look at patients in silos.
“You may think of someone solely as a patient or a caregiver, but in reality, our lives are complex, and our healthcare pictures are very complex,” she added.
Access to clinical trials
Shelley and her two sisters lost their mom to breast cancer in the early 1990s. They were shocked to discover that a drug that could have extended her life was being trialed without the family’s knowledge.
“If mom had just four more months, she would have seen me graduate from college, which was a goal of hers. Time matters. It matters to the patient, to the caregiver and to their loved ones,” said Shelley.
Two decades later, her sister Sherry was diagnosed with multiple myeloma, a cancer of the bone marrow.
“When you think of the patient journey, for people working in the industry it’s easy to think about the drug you are offering. But when you think about the treatment journey, it’s so much more than that,” said Shelley, who became her sister’s full-time caregiver.
“The hospital becomes your second home. You are in and out for treatment, with infections, for biopsies, for infusions. There is so much more than that one medication you provide.”
Informed by their mom’s experience, Shelley and her sisters sought out clinical trials Sherry was eligible for.
Through taking part in several studies, including one for CAR-T gene therapy, the family was able to extend their time together. Sadly, she suffered multiple relapses and passed away, surrounded by her family, in May 2018
The experience has made Shelley passionate about expanding access to clinical trials.
“Less than 5% of eligible adult cancer patients participate. That means 95% might be missing out on treatment that could extend their lives.1 Clinical trials not only give you time with loved ones, but they also give hope when needed most,” she said.
She added it isn’t that people do not want to take part in studies, but that they are not aware of them – and she called on her colleagues to spread the word.
Unger JM, Cook E, Tai E, Bleyer A. The Role of Clinical Trial Participation in Cancer Research: Barriers, Evidence, and Strategies. Am Soc Clin Oncol Educ Book 2016; 35:185-98.