Clinical Trials Day 2022: Every day should be clinical trials day

“The melanoma has metastasised.  I need to find a clinical trial.”

I remember exactly where I was and what I was doing, when I received a call from a friend to tell me she had just been diagnosed with stage 4 melanoma.  I recall my ear felt numb against the cell phone in my hands. Her voice shook with disbelief. She had barely survived melanoma ten years before.  This time the cancer had metastasised into her brain, her spine, it was everywhere.  My friend Athina was calling to ask for my help to find a clinical trial, to access the new immunotherapeutics, the cancer wonder drugs as they were being touted in the news, that were coming through the drug development pipeline. 

Athina was lucky in a way that most people are not.  She and I both had worked in the biotechnology industry for years and understood the advantage that clinical trials often offer, in terms of saving or at least prolonging life.  Athina was surrounded by many friends and colleagues who could give her advice, guidance, and access to clinical trials.

She did not survive melanoma, but she lived longer, and remained well for longer than she would have, had she not participated in clinical trials and accessed the new medicines that would go on to save hundreds of thousands of others in the years to come. 

Most people don’t have the knowledge and professional contacts that we have in the drug development industry.  Most people don’t know that clinical trials offer access to the newest medicines and diagnostics in development, more health services and closer supervision and care, and all free of charge.  Not everyone knows who to call and how to search and advocate on their behalf, to access trials.  And even if people do know this, searching for a trial and navigating the system on a global scale is an overwhelming task.

Our first decision together was to switch oncologists to someone who was active in clinical trials, routinely encouraging and referring patients to trials.  We searched the internet for trials across numerous databases for weeks, spoke to researchers and clinicians in our shared global network, spoke with pharmaceutical company connections, read papers, followed leads and recommendations.

Athina participated in three clinical trials, giving her access to two emerging medicines that prolonged her life and kept her in relatively good health until the last eight weeks, as well as a new type of radiation therapy that meant she didn’t lose her fabulous voluminous hair.  She was patient number one in the radiation study, and so proud of it too.

Our shared knowledge, experience and network gave her an enormous advantage in being able to access the best healthcare and new treatments, and all free of charge.  We both recognised of often reflected as we were sitting together in hospital waiting rooms, that having this advantage over other people just doesn’t seem right.

Athina’s experience has been a significant influence in the design and development of Opin, a global database of every registered clinical trial and study in the world.  Our purpose as a company, is to help people like Athina, open the door to more choices, to access trials and studies that can help the management of a disease or condition.

Our first commitment is to the people who are searching for something more, choices, medicines, diagnostics or medical devices to help ease their suffering, or simply hope.  And if we can give these people what they want by providing them with easy and equitable access to a world of medical research opportunities– then everybody wins.

Every day should be clinical trials day.

Remembering Athina 18^th July 1966 – 22^nd September 2016