Being diagnosed with Alzheimer’s disease is shocking in itself. But learning that you or a loved one has early onset Alzheimer’s — when the disease appears before age 65 — can be particularly devastating.
Johnson & Johnson Innovation recently hosted a panel featuring a patient, Pam, who was diagnosed at age 59 with early onset Alzheimer’s disease, her husband and caregiver, Bob and a representative from the Alzheimer’s Association.
Organizing and moderating this conversation was Tatyana Beldock, senior director of new ventures at Johnson & Johnson Innovation, California. Here, she shares key takeaways from this inspiring discussion.
Tell us more about Pam’s journey. What was her path to diagnosis?
Pam explained to us that she first started experiencing symptoms while she was at work. As a sales executive at a technology company, she frequently learned about new features and service offerings to share with her team. One day, she noticed she was having difficulty recalling the new training modules, and had to start writing them down. Around the same time, in Hawaii, her husband noticed that she was starting to ask him the same questions multiple times. While some people might have attributed these changes to aging, Pam, an articulate and highly organized woman, intuitively felt something more serious was happening to her, so she sought medical advice. A diagnosis wasn’t easy to obtain – she saw several doctors and specialists over approximately 18 month, including a neurologist and neuropsychiatrist, before she was ultimately diagnosed with early onset Alzheimer’s.
Was there anything that surprised you about the conversation?
What surprised me most was how long it took this articulate technology executive with excellent health insurance more than a year and a half to receive a diagnosis in the San Francisco Bay Area, a region with many renowned medical facilities. Clearly there is innovation needed here to accelerate the timeline to diagnosis, and it makes one wonder how long it would take someone living in an area with fewer medical facilities with less robust health insurance to receive a similar diagnosis.
Alzheimer’s also has a significant impact on loved ones, and in particular, a caregivers. Could you tell us more about her husband’s perspective on her diagnosis and treatment?
The support of her husband, Bob, has been critical throughout her journey. He took medical leave to care for her when she started her treatment and attends all of her appointments, diligently recording her treatments and care instructions. They also spoke of how they see each other as a united team, fighting against the disease. This was a reminder that treating a disease is much more than just taking a pill — the love and care surrounding you is also important.
This conversation was the part of a series of patient Q&As held by Johnson & Johnson Innovation, which also included a father who successfully battled stage 4 melanoma, an oncology patient cured with CART and a woman with Crohn’s disease. Did any universal trends emerge following these conversations?
An overarching takeaway from these conversations has been how extremely proactive and courageous these patient have had to be to seek the life saving treatments they needed. One patient shared how he galvanized all his contacts on LinkedIn to call everyone they knew at a pharmaceutical company where he was awaiting enrollment for the cancer clinical trial he desperately needed, including calling the legal department himself to get enrolled in a study he had been waiting 6 weeks for the paperwork to be executed. Another patient flew herself around the country to top cancer centers and called the FDA to try to get into a clinical trial.
Hearing these stories reinforced that there are clearly many areas where innovation is greatly needed to accelerate the patient’s path to treatment, as well as making the process of getting personalized information, diagnosis and treatment faster and more accessable. At Johnson & Johnson Innovation, we are actively sourcing, evaluating and investing in external innovation opportunities that can accelerate treatment development and improve the patient journey. I should note a specialized global team at Janssen, the Research & Development Operations Innovation, is developing and implementing new approaches to make the clinical trial process better and faster.