Published on March 15, 2017
– Precision medicine will increasingly have the potential to transform patient outcomes in lung cancer, but there are many reasons why a significant proportion may benefit too late, if at all. Precision Medicine for Me is a unique consortium that seeks to address this such that patients are truly empowered to translate great science into saving lives.
This project was initiated by Patient Power, a patient empowerment organization and Antidote, a clinical trial matching startup, along with patient organizations, advocates, startups, and leaders in the pharmaceutical industry. “With the way the world works today, we face an increasing risk that many patients whose lives could be significantly extended through breakthrough technology will never receive it,” said Ed Godber, CEO of H-Labs, who will be introducing the initiative at Eye for Pharma in Barcelona this week. “Our goal is to systematically empower patients to inspire the creation of a better model, one in which the promise of precision medicine is fully realized.”
No one represents the promise and challenges of precision medicine more than Francisco Millán, 44, who is living with advanced lung cancer. He was diagnosed more than four years ago, when an oncologist told him that his cancer was incurable and terminal. Fran was treated with standard chemotherapy at Vall d'Hebron Hospital in Barcelona and after three years of numerous tests and partly thanks to his insistence, it was discovered that Fran’s cancer was caused by the ROS1 mutation (a genetic alteration that affects one percent of lung cancer patients). Because he had this mutation, Fran was able to receive a targeted therapy specifically for patients with the ROS1 mutation. His innovative therapy involved taking one pill every 12 hours, with fewer side effects than traditional chemotherapy.
"If you do not ask for and have the genetic testing for your tumor, you may end up receiving standard chemotherapy. Advocating for yourself can save your life or give you more years,” said Fran." In fact, there are cases of patients with stage IV lung cancer who are showing no evidence of disease thanks to new targeted therapies and immunotherapy.
There are also many new and promising drugs in the testing phase, so taking part in a clinical trial may be an option, depending on where you live. Fran is currently advocating for his medical team to conduct a trial with highly promising medicines that is taking place in Boston in Spain also, so that Spanish patients have access to those therapies.
“Fran’s story is, unfortunately, an example of a widening divide in cancer care, depending on where you live” said Pablo Graiver, CEO of Antidote and a successful internet entrepreneur who began his career in Barcelona. “Patients who live near major cancer centers are benefiting from the latest advances in medicine, while others are not even aware of the option. We are committed to helping fix this critical problem.”
“Empowered patients are their own best advocates – Fran is alive today because he became involved in his cancer journey and worked with his medical team to have access to the best treatment,” said Andrew Schorr, Founder and President of Patient Power and another former resident of Barcelona. “We have a team of people standing by to provide free support and resources to any patient in need. All they have to do is email us at firstname.lastname@example.org.”