Unique collaboration announces new program to tackle inequality in cancer care
“Precision medicine with personalized outcomes is the future, and getting this information and access into the hands of patients now could give them years of good living,” said patient advocate Janet Freeman-Daily
A unique consortium of patient organizations, advocates, startups, and leaders in the pharmaceutical industry today announced the launch of Precision Medicine for Me, a program dedicated to providing support to patients who want access to the best possible information and services related to precision medicine. Precision Medicine for Me aims to help ensure that all patients have access to next-generation tumor testing and the latest treatment options, including promising new drugs currently being tested in clinical trials. In the initial phase, http://www.precision-medicine.me is focused on lung cancer, the number one cancer killer and an area in which many of the most promising precision medicine treatments are being used or tested. Additional therapeutic areas will be addressed in the future.
This project was initiated by Patient Power, a patient empowerment organization, and Antidote, a digital health startup. “We recognized a major problem: it’s very difficult for patients to learn about and gain access to tumor testing unless they are treated at a major cancer center,” said Sarah Kerruish, Chief Patient Officer at Antidote. “This means they aren’t benefitting from the latest treatments, both approved and in development.” Now joined by many leading organizations supporting patient empowerment, including the Patient Empowerment Foundation (PEF), Bonnie J. Addario Lung Cancer Foundation, Free to Breathe, H-Labs, Lung Cancer Alliance, Lung Cancer Foundation of America, PatientsLikeMe, and SurviveIt, the consortium is focused on providing free, best-in-class information and support services for patients about why and how to get involved with precision medicine, including access to next-generation tumor testing. All assets created for this initiative are open to all.
“Precision medicine with personalized outcomes is the future, and getting this information and access into the hands of patients now could give them years of good living,” said patient advocate Janet Freeman-Daily. “I’m proud to be a part of Precision Medicine for Me. This is the first step in a movement towards next-generation genomic tests becoming part of the standard of care.” Freeman-Daily, like several on the Precision Medicine for Me team, is alive today because of tumor testing. A genomic test revealed that she had ROS1 mutation, which meant that she could take part in a clinical trial testing a new treatment for this mutation. She has now had no evidence of disease for four years.
“As a cancer patient myself, I know how rapidly the field is advancing, which is why we have to seek out specialists who treat our specific disease and then partner with them to get the latest, most effective treatment available,” said Andrew Schorr, Founder and President of Patient Power. “Patients should not be passive about their treatment, which is why we want to give them the knowledge, hope, and action they can take right now through the Precision Medicine for Me website.”
“It’s important to raise awareness about the value of precision medicine, and this initiative is a solid step in that direction,” said PatientsLikeMe Co-Founder and President Ben Heywood. “We are delighted for patients who visit the Precision Medicine for Me website to have access to resources such as our network of 500,000 patients to find options for treatments, connect with others, and take action to improve their outcomes.”