Despite so many years working in the patient education field, this year was my very first time attending the annual ASCO (American Society of Clinical Oncology) conference in Chicago. It was truly humbling being in the presence of more than 30,000 cancer specialists, researchers, patient advocates and pharmaceutical representatives—all clearly working in their own way to bring better treatments to cancer patients. The passion across the board was palpable. While my primary reason for being at ASCO was to heighten awareness about the work we do at Patient Power and gather late-breaking news about new therapies to share with our online communities, it was equally a learning experience for me with some profound takeaways I want to share with you.  

  •    Takeaway #1: Medical science is getting better and better at finding and diagnosing many cancers at early stages. The good news here is that in more and more cases, cancer can be treated in early stage with greater chance of remission and in some cases, cure. However, as we get better at diagnosing earlier and more accurately, the variations of each type of cancer appears to be more plentiful and complex than originally thought. The idea of "one-size-fits-all" in treating one kind of cancer (for example: breast cancer or lung cancer) no longer holds up for best possible outcomes.  An ongoing frustration relates directly to how complicated cancer really is…While progress is being made in some cancer types, in other like pancreatic cancer, it is very slow going. 
  •    Takeaway #2: While precision medicine - treatments that are tailored to a patient's unique cancer profile—is very promising, it is a complex and, at this point, costly road to get to each unique treatment plan. In order to truly "personalize" a cancer treatment for a single individual, genetic testing, specialization in interpreting the genetic profile results, and access to the drugs/treatments indicated all need to be available. It is a relatively small set of cancer types and patients who currently can benefit from "precision medicine" today. That doesn't mean we should bemoan the limited applications for precision medicine—quite the contrary…it means that we are just at the tip of an amazing iceberg! There is a tremendous amount of hope in this fledgling science—but we will have to muster patience that at times seems impossible. 
  •    Takeaway #3: Community oncologists - the vast majority of dedicated physicians who treat cancer patients - cannot reasonably be expected to keep up with all the research, clinical trials, new testing types and pipeline of new treatments coming available. The increasing volume of information and specialization needed to deliver the very best treatment to each patient now requires community oncologists, researchers, cancer-type specialists and yes—patients and care partners—to work toward better lines of communication and information-sharing. This is a very tall order and it requires much more dialogue, more self-study, and less ego involvement to get to the best answer as a team.
  •    Takeaway #4: Pharmaceutical companies, the FDA, EMA and other regulatory bodies must amp up the integration of patient input into trial design, treatment delivery design and options, and real-world outcomes reporting in order to refine drugs they are developing, approving and delivering. There are many pharma companies who have already realized that patients really are a critical player in the effort to bring new treatments to market more quickly and with the greatest chance of adoption and treatment success.  Without patients' input on trial design, recruitment will continue to be slow and minimal. Approval processes must be streamlined as well as be more open to patients' desires to get even experimental treatments sooner. Compliance (sticking with treatment) cannot improve if patients have no input about what forms of delivering treatment will make it more likely they will have the ability and willingness to continue and complete the course of treatment without undue burden. Again, this communication and partnership is critical.
  •    Takeaway #5: Sharing of patient histories, clinical trial data and innovative thinking across research and medical practice lines needs to accelerate. While it is reasonable that there will always be business-confidential and personal privacy considerations, the more that data collection and reporting across institutions can be fluid and transparent, the more we will be able to avoid duplication of efforts, foster collaboration, and enable joint creativity to develop more effective treatments and delivery methods. This is a very tall order for a traditionally siloed landscape of medical and pharmaceutical entities. But if the end game is to cure cancer, great minds in all sectors need to put their heads together.
  •    Takeaway #6: Everyone involved with bringing better treatments for cancer to patients is struggling with cost issues. While no longer the elephant in the room, all the stakeholders have to work together to ensure affordable care for the people who need care—even those with rare conditions. This effort has to go hand and hand with science efforts, or else we’ll have cool science no one can afford.

Finally, the biggest takeaway of all for me personally is that I need to keep doing what I am doing! As both a care partner to a two-time cancer survivor and as a journalist and educator in the world of healthcare and "healthcaring," I have to daily renew my commitment to keep learning, keep collaborating, keep sharing what I know and seeking the answers to what I don't know. I have to be a strong and educated advocate for the best treatment available—for my life partner, for myself, and for the millions of people in the world touched by cancer. Being in the presence of so many people at ASCO with this same set of motivations is an experience I will never forget.

Wishing all the very best of health!

Esther Schorr
Co-Founder/COO Patient Power LLC

 

For great informational content direct from ASCO 2017 - check out https://www.patientpower.info/asco-2017                        ??