The Survivors And Advocates Highlight That Personalized Medicine Is About All Of Us

When it comes to personalized/precision medicine we should never forget it’s all about the people, particularly the cancer survivors whose very lives depend on us getting it done quickly and getting it right.

That was the message from a discussion I had the privilege to moderate  on Monday evening with cancer survivors and representatives of advocacy organizations, professional associations, government agencies, and industry at a session held in conjunction with the annual meeting of the American Society of Clinical Oncology (ASCO),  now wrapping up in Chicago.

There has been an incredible amount of big science presented at this meeting that relates very directly to the care we provide cancer patients. Some of that science has immediate application to cancer care. On several occasions, acknowledged experts opined in front of thousands of physicians, other scientists, and health professionals that new treatments-particularly immunotherapy-were new standards of care in the management of patients with certain cancers.

Running in parallel to the development of new approaches to the treatment of cancer is the science that is helping to define and personalize which patients would benefit most from which treatments. As an example, for the new immunotherapy drugs there are biomarkers that may eventually predict who is going to respond better to which medicine. And frequently during the research presentations there was evidence that the more a cancer cell had mutated the more likely it was to respond to these new drugs.

But it was the survivors who touched my heart, my thoughts and my hopes.[more]

Long term cancer survivors with ovarian and lung cancer eloquently and passionately stated their experiences with personalized /genomic medicine. Others shared with us that no matter how long we have known that certain mutations increase the risk of some cancers (for example, Lynch syndrome in colon cancer) the knowledge among people and health professionals alike remains way behind the curve when it comes to applying that information to the care of patients or helping guide them to awareness of the condition in the first place. And another advocate reminded us that there are many communities who don’t have access to this information or the science or the treatment that would make lives better through better awareness and better care.

How we harness the power of personalized medicine and get it to where it counts is going to be one of the greatest challenges medicine will face for years to come. Our advocates made clear they want to have the barriers to advances in technology reduced as much as possible, but they also want assurances that the new opportunities to understand and treat cancer do what they are advertised to do. Regulatory oversight remains an important part of the equation, and more effective and efficient collaboration between industry and government will be an important part of this rapidly evolving personalized medicine ecosystem.

But ultimately-as the advocates and patients made very clear-it is the engaged patient that is a critical part of this evolving landscape of cancer care.

One long term lung cancer survivor shared her story of getting her cancer analyzed by next generation genomic sequencing. A rare mutation was found. She took the information and found one of the only centers in the country that had a drug in a clinical trial to address that mutation. Many years later, she remains an active, vibrant, and engaged survivor. And her story was not the only one like that in the room.

So the ultimate question remains: how do we get all of this “wonder” science into the hands of those who need it? How do we train the doctors and other health professionals to even begin to understand it? How do we make certain that information presented today, endorsed by experts in the field, rapidly disseminates to the doctors and the patients in the clinic tomorrow? How do we educate the public that not all the “gee whiz” technology really makes a difference in their lives and tell the difference from truly impactful medicines and laboratory tests? How do we measure that a test or procedure really brings value and important information to the care we offer?

I can assure you that this is just a partial list of the questions that come to mind.

We obviously have a long way to go to make this happen. Our patients and our advocates are right there with us, by our sides, hand in hand moving forward. After all, they are the ones who depend on us to get this right.

Will we meet their expectations? Will we focus our efforts on getting it right? Will we take make the effort to continuously evaluate and improve the care we provide and make certain it truly is the best care possible? Will we continue to innovate with meaningful advances and bring more value to those we serve?

There is no doubt that personalized/precision medicine will bring great success. It will also bring great challenges.

So in honor of those survivors who spoke their hearts Monday evening and all of those who rely on us to make this happen, let us commit to meet those expectations. Our patients, their families and in fact the world is counting on us to get it done and get it right.


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