#LCSM Chat topic 3/8/2018: Cancer advocacy 101–patients & conferences

Chemist Jean Cui at #ASCO17 posters with #ALK & #ROS1 NSCLC patients who thrive on drugs she helped develop

As cancer patients and caregivers transform into active cancer advocates, they may think about attending medical conferences.  On March 8, at 8 pm Eastern Time (5 pm PST), #LCSM Chat will discuss various aspects of cancer advocate participation in medical conferences.

Some reasons for cancer advocates to attend medical conferences are to:

  • Learn more about cancer and treatment options for cancer
  • Get details about new research
  • Meet the top doctors who treat their type of cancer
  • Support an advocacy organization’s outreach booth
  • Network with other advocates, as well as clinicians and researchers
  • Share an advocate’s perspective on a specific topic, sometimes as an invited speaker

As more advocates participate in conferences, the conference organizers, professional societies, and medical practitioners are coming to understand the benefits of including advocate voices in their programs. #LCSM Chat member Janet Freeman-Daily was recently interviewed by the International Association for the Study of Lung Cancer about her participation in conferences–read the resulting article here: Why Should Advocates Attend Academic Lung Cancer Conferences?

Tools exist to help advocates navigate cancer conferences and understand the content they will see:

If you know of other resources, please share them in the comments on this page or in the chat.

Some professional societies and cancer nonprofits sponsor programs that enable cancer advocates to attend conferences and learn more about medical research:

  • AACR’s ScientistSurvivor Program
    Participants receive travel grants and participate in special educational programs at cancer research meetings.
  • ASCO’s Conquer Cancer Foundation Patient Advocate Scholarship Program
    Provides need-based grants to cover travel and registration for a variety of ASCO meetings, including the huge Annual Meeting in Chicago each June. Applications for the Annual Meeting are usually accepted during a window in early March.
  • RAN’s Focus on Research Scholar Program
    Scholars participate in preparatory conference calls, virtual classroom (webinars), learning materials and mentoring for research advocates to improve skills and understanding of biomedical research, and attend the ASCO Annual Meeting.
  • International Association for the Study of Lung Cancer (IASLC) Travel Awards for World Conference on Lung Cancer (WCLC)
    Provides travel grants to WCLC, which is held in a different international city each year—it will be in Toronto Canada September 2018.

Our moderator Janet Freeman-Daily (@JFreemanDaily) will lead our discussion using the following prompts:

  • T1: When a cancer patient/caregiver attends a medical conference, what are benefits to the patient/caregiver? Benefits to medical professionals?  To the conference?
  • T2: If you have attended a medical conference in which patients/caregivers participated, what did you like most about that conference? (Pls state whether you attended as patient, caregiver, or med professional)
  • T3: If a cancer patient or caregiver wanted to attend a medical conference, which would you recommend for their first conference, and why?
  • T4: What tips would you give a cancer patient or caregiver for making the most of their conference experience?
  • T5: What programs help cancer patients and caregivers attend and/or afford conferences? Do you have experience with any of them?

We hope you’ll join our #LCSM Chat on Thursday 3/8 at 8 pm Eastern Time (5 pm Pacific). If you’re new to tweet chats, please read our primer “To Participate in #LCSM Chat.”

#LCSM Chat Topic 22-Feb-2018: Lung cancer research–Why we need it and how we can get more

“Cancer research” is a broad term that encompasses everything from basic bench science, to translational research on patient-derived tumor specimens, to clinical trials, to studies on patient centered outcomes.  While it is obvious to all of us in the lung cancer community that research is critical to improving patient outcomes, lung cancer remains underfunded compared to other common cancers.

Several different mechanisms exist to fund cancer research, including private philanthropy, Big Pharma, not-for-profit cancer research and advocacy groups, and government organizations including the DOD and NIH/NCI among others.

Given funding imbalances, it is relatively easy for lung cancer patients and advocates to make the point that allocation decisions may have historically been driven by social and political considerations, rather than by the toll of the different cancers on society.  However, it is a much greater challenge to get others to recognize the imbalance, to change that pattern, and to actually drive an increase in resources dedicated to lung cancer research.  Such efforts will undoubtedly require a focused effort by the lung cancer community, including those of us involved with #lcsm.

With these thoughts in mind, please join our #LCSM chat this Thursday (moderated by @BrendonStilesMD) as we explore lung cancer research, what it means to patients, how we can better integrate researchers and patients/advocates to coordinate efforts, and how we can ultimately generate more money specifically directed towards lung cancer research.  We will cover the following topics:

  • T1.  Tell us what research means to you.  How have you participated in research and/or how has lung cancer research benefitted you personally?
    (examples include clinical trials, new drugs, biobanking, laboratory tours, volunteerism or support for lung cancer foundations, grant review panels, etc.)
  • T2.  How can we help lung cancer patients better understand research and just as important, how can we help basic science researchers understand the needs of lung cancer patients?
  • T3.  How can we use our collective voice to increase funding for lung cancer research?
  • T4.  What types of lung cancer research do you think are most important to fund?

Please remember to include #LCSM in ALL your tweets so the other chat participants can see your comments. You can read a primer on participating in the chat here.  Hope you’ll join us!

#LCSM Chat Topic 2/8/18: Right to Try Laws and CIMAVax


“Right to Try” laws for people with a terminal illness have been a longstanding issue and are currently on the books in 38 states. The lack of a federal law supporting this concept was touched upon in President Trump’s State of the Union address last week. On its face, offering liberal options that permit these patients to try any still investigational agent that has completed phase I testing seems like a benefit to patients who may be desperate for options. A couple of arguments in favor of it are available here:

While on its face, federal legislation supporting a “right to try” seems an obvious win for patients with a terminal illness like advanced cancer, this approach also has many thoughtful opponents.  A leading concern is that it would create a lack of accountability of the potentially significant or even fatal side effects of such a treatment. Treating physicians would not be liable in cases of malpractice, and insurers would not be beholden to cover the unknown potential complications if patients receive treatment under right to try laws.  Overall, there is reason to be wary that patients receiving treatment under “right to try” laws would reduce the normal level of safety regulation that should accompany drug development.

Moreover, opponents note that “compassionate use” protocols are an available mechanism that leads to approval of use of investigational agents for individuals for whom it may be appropriate 99% of the time, without foregoing the safety controls that should remain in place.  Finally, researchers are concerned that patients pursuing “right to try” will short-circuit the available but potentially cumbersome clinical trials that offer these agents to patients and move the field forward, ideally bringing them to the point of being approved and available more broadly to patients who need them.

Here are a couple of links to the arguments against “right to try”:


A related issue is the desire of many patients to pursue the “Cuban vaccine” known as CIMAVax.  This agent has been studied and demonstrated enough of a benefit for patients with advanced cancer that Cuba approved its use many years ago, though the evidence supporting it as a single agent is quite modest. It is now being studied in combination with the better established immunotherapy agent nivolumab (Opdivo) in a trial being conducted at Roswell Park Cancer Center in Buffalo, NY and has been the subject of mass media stories that describe how patients are flying to Cuba seeking it based on recommendations from online patient communities.  You can read more about it here:

These questions of whether individual liberties are the most important issue or whether these treatments may lead to harm to both the individual patient and to the development of these agents through controlled channels remain controversial.

Please join us for our next tweet chat on February 8, 2018 at 8 PM Eastern, 5 PM Pacific, when we’ll cover these meaty questions (led by moderator @JackWestMD):

  • T1) Is there a clear benefit to “Right to Try” legislation over today’s Expanded Use/Compassionate Use for investigational agents?
  • T2) Is federal legislation for a “right to try” a good choice to maximize options for patients even if it lowers safety controls for these agents?
  • T3) Is “right to try” legislation a strong choice if it removes safety regulations & doc/insurance liability to be eradicated?
  • T4) Should we be concerned that patients pursuing “Right to Try” will undermine clinical trials for investigational agents?
  • T5) Are pts who seek CIMAVax in Cuba informed & choosing well, even if against doc’s advice? Do they risk missing better treatment?
  • T6) Should #LCSM community define consensus view on “Right to Try” legislation or should we defer on speaking w/1 voice on debatable issues?

Please remember to include #LCSM in ALL your tweets so the other chat participants can see your comments. You can read a primer on participating in the chat here.  Hope you’ll join us!

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