IASLC STARS offers webinar for advocates on drug development process

The IASLC STARS program invites STARS alumni and anyone interested in cancer research advocacy to join us for a webinar about cancer drug development. 

When:               Monday August 29, 2022, at 11:00AM Eastern Time

Title:                Advocacy Opportunities in Cancer Drug Development and Regulatory Approval

Speakers:          Upal Basu Roy, PhD, MPH,
Executive Director of Research, LUNGevity Foundation
Janet Freeman-Daily, MS, Eng
cancer research advocate and STARS staff (moderator)

Languages:        English, with transcript translated into Spanish after the event

Learning objectives:

  • Acquire a high-level understanding of the drug development process and timeline
  • Identify differences in global regulatory approval pathways and how they impact drug access
  • Identify advocacy opportunities throughout the drug development process

Register (it’s FREE) at https://us06web.zoom.us/webinar/register/WN_EmO7XBH6SdqDgHfDA0DLQQ
After registering, you will receive a confirmation email containing information about joining the webinar.
Reach out to advocacy@iaslc.org for more information.

The International Association for the Study of Lung Cancer (IASLC) offers webinars, training and networking opportunities to lung cancer research advocates through its Supportive Training for Advocates in Research and Science (STARS) program.  Thank you to our STARS partner Research Advocacy Network and our 2022 STARS sponsors Lilly, Bayer, BMS, and Genentech for supporting this event!

Use of Social Media and Communications Channels for #LungCancer Patient Advocacy #WCLC22 #LCSM

This presentation was given on April 6, 2022, by Janet Freeman-Daily (a lung cancer patient research advocate) at the IASLC 2022 World Conference on Lung Cancer (#WCLC22) in Vienna, Austria during the “Social Media + Communications Workshop.”

Help me celebrate nine years of effective targeted ROS1+ cancer therapy! 

In May 2011—over 10 years ago–I was diagnosed with advanced lung cancer.  At that time, chemo and radiation were the only approved first line treatments for advanced or metastatic lung cancer. Despite undergoing chemo and radiation (twice), my cancer spread to my other lung and became metastatic. I was not inspired by the five-year survival rate for metastatic lung cancer patients back then—it was around 2%.

However, in early 2011 a small clinical trial for a targeted therapy pill called crizotinib (trade name Xalkori) had begun for ROS1 positive (ROS1+) lung cancer. This cancer is driven by an acquired alteration in the ROS1 gene. This pill that sounded like an alien seemed to inhibit ROS1+ cancer in about 80% of people in the trial. That was amazingly effective for a cancer drug!

In the fall of 2012, I arranged to have my tumor tissue tested and discovered my cancer was ROS1+.  I mentioned the clinical trial option to my oncologist, and he recommended I join the trial (even though it required travel) because the preliminary trial results looked promising. All he could offer me otherwise was a lifetime on a chemo that didn’t make me feel much like living.

I enrolled in the trial in Denver, Colorado—over 1000 away from home—on November 6, 2012, and hoped for the best.

I’m still here thanks to research. Today marks 9 years since I took my first crizotinib pill. I have had No Evidence of Disease (meaning no cancer shows up on any scans) ever since.  Although I’m incredibly grateful to be alive and have a relatively normal life with tolerable side effects, I’m always looking over my shoulder.  No one can tell me if I’m cured, because few others have been on the drug this long.  Most patients find their cancer eventually becomes resistant to crizotinib and their cancer resumes growing.  The population of ROS1+ patients is relatively small (only 1-2% of lung cancer patients have ROS1+ cancer), so research on our type of cancer is sparse. We have some clinical trials in process, but no second line targeted therapy has yet been shown effective enough to obtain any government approval.

That’s why Lisa Goldman, Tori Tomalia (may she rest in peace) and I–all people who had ROS1+ lung cancer–decided to do something about it.  In the spring of 2015 we created a Facebook group for patients and caregivers dealing with ROS1+ cancer, and eventually formed a nonprofit known as The ROS1ders.  Our mission is to improve outcomes for all ROS1+ cancers through community, education, and research.  We have almost 800 members spanning 30+ countries, and are considered experts in our disease by some of the top oncologists in the world.  We’ve already helped create new models of ROS1 cancer that researchers have used in published research.

We’re now planning a research roundtable in December to explore ways to collect real-world data on ROS1+ cancers, and will be hosting a ROS1 Shark Tank event next spring that will award two $50,000 seed grants for new ROS1 projects. We’re aiming to raise $100,000 this year to fund our work.

Cancer research advocacy is my passion. I’m able to use my skills and time to help make a difference for hundreds of other people living with ROS1+ cancers. It’s a purpose that keeps me going despite the ever-present specter of potential recurrence.

Won’t you help me celebrate my 9th anniversary on my targeted therapy pill by donating to The ROS1ders?  It’s easy—just click this link and donate on my Network for Good page. It’s tax deductible. (Here’s the link again: https://ros1ders-inc.networkforgood.com/projects/131093-janet-freeman-daily-s-fundraiser )

I know there are many worthy charities asking for money this time of year. Any small amount you can give will help accelerate research for hundreds of ROS1ders worldwide who, like me, are dying for more treatment options.

Thank you for your support! 

Nominate a CURE #LungCancer Hero by June 30, 2021

Show your appreciation for an individual who goes above and beyond to make a difference in the lives of those affected by lung cancer. If you know a hero who has inspired change, exemplified compassion or brought newfound hope to you or someone you care for, share their story by submitting an essay nomination for the 2021 Lung Cancer Heroes® awards. This is only the second year this award has been offered.

Submit your nomination by June 30, 2021 here: https://event.curetoday.com/event/d49340bf-0224-4cb0-974c-9ad4633de436/

GRASP registration now open to #lungcancer patient advocates for #ASCO21 poster sessions

Hey Lung Cancer Advocates!

Are interested in discussing an ASCO poster with a lung cancer scientist?

The IASLC STARS program, KRAS Kickers, and LUNGevity have partnered with GRASP (Guiding Researchers and Advocates to Scientific Partnerships) to offer lung cancer poster reviews at ASCO 2021. GRASP is a grass-roots advocacy effort that started in the breast cancer community. 

In the GRASP format, a scientist discusses posters with a small group of patient advocates and an experienced research advocate. Virtual GRASP sessions will take place the week after the official ASCO meeting with six different sessions over the course of two days.

To take advantage of this opportunity for the 2021 ASCO Annual Meeting, please join GRASP (it’s free!) and then go to GRASP advocate registration to register one of the five lung cancer poster sessions on selected topics.  Please also consider signing up for one of the optional GRASP training sessions (May 26 and 27).

If you have any questions, please contact Julia Maues julia@graspcancer.org, patient advocate and cofounder of GRASP.

We look forward to seeing you at a poster session!

Image credits:  © GRASP 2021

#LCSM Chat Topic 6-May-2021: “The Hows and Whys of Cancer Research Advocacy”

Please join #LCSM Chat and other Twitter cancer hashtag communities as we discuss “The Hows and Whys of Cancer Research Advocacy” on Twitter Thursday, May 6th, at 5 pm Pacific (8 pm Eastern). Join us to learn how cancer research advocates bring value to research!

More info about the chat (including the five discussion topics) on the LCSM Chat website: https://lcsmchat.com/2021/05/02/the-hows-and-whys-of-cancer-research-advocacy/

Learn how to participate in #LCSM Chat here: https://lcsmchat.com/lcsm-chat/

Remember, the IASLC STARS Program is accepting applications for 2021 Patient Research Advocates through May 10! STARS aims to help lung cancer patient advocates evolve into research advocates. https://www.iaslc.org/patient-advocacy/stars

8-Apr-2021 STAT Video Chat Event: What gene targeted therapies mean for patients with cancer

I’m excited to participate in the STAT News video chat “What gene targeted therapies mean for patients with cancer” on April 8, 2021 at 1:00 p.m. ET (10:00 a.m. PT) on the topic The discussion will include a great group of speakers:

  • Bonnie J. Addario, lung cancer survivor; co-founder and board chair, GO2 Foundation for Lung Cancer
  • Narjust Duma, M.D., assistant professor of medicine, thoracic oncology, University of Wisconsin Carbone Cancer Center
  • Janet Freeman-Daily, MS, Eng, co-founder and board chair, The ROS1ders; stage IV lung cancer survivor & research advocate
  • Laura A. Petrillo, M.D., palliative care physician, Massachusetts General Hospital and Harvard Medical School
  • Camille Hertzka, VP, head of oncology U.S. medical, AstraZeneca (sponsor speaker)
  • Eric Boodman, general assignment reporter, STAT (moderator)

You can register for FREE at this website to view the event live:
https://marketing.statnews.com/what-gene-targeted-therapies-mean-for-patients-with-cancer

Patient participation in #NACLC20 virtual lung cancer conference

The virtual 2020 IASLC North American Conference on Lung Cancer (NACLC 2020) runs October 16-17. Patients will be providing special perspectives throughout the conference.

REGISTRATION IS FREE for all patients and caregivers. Register here: https://naclc2020.iaslc.org/registration/

Check out the full program here. https://naclc2020.iaslc.org/program-at-a-glance/

Don’t miss these two presentations by lung cancer patient research advocates on Saturday, October 17th:

Ivy Horowitz Elkins and Janet Freeman-Daily on “Patient Driven Research” in the Targeted Therapy session (9:50-10:45 am CT)

Jill Libles Feldman on “Adjuvant Treatment: What Does It Mean for Patients” in the Keynote session. (11:50 am -12:40 pm CT)

A bad day in research advocacy …

The eight-hour virtual cancer research conference started at 5:45 AM

AND

The livefeed repeatedly crashed

AND

A researcher mansplained how to handle the survey that you just helped design

AND

A conference presenter says the targeted therapy cancer drug that is keeping you alive is too costly, and chemo (which didn’t work for you) is just as effective

AND

Someone in your international lung cancer patient support group dies for lack of access to drug that is standard of care in your country

AND

A local friend gets diagnosed with metastatic lung cancer

AND

A friend of another friend gets diagnosed with stage 4 breast cancer.

 

I hate cancer. I need chocolate.

June 1, 2020 Update to the Joint Statement on #Coronavirus #COVID19 From #LungCancer Advocacy Groups

The post below is shared with permission. It can also be found on the websites of the lung cancer advocacy organizations listed at the end of this blog post.

—————————

This past week marked a grim milestone in the United States, as we officially surpassed 100,000 deaths from COVID-19. Our groups continue to recommend that the lung cancer community adhere to best practices to limit exposure, including wearing masks/face coverings when out in public, frequent handwashing, ongoing social distancing, and limiting non-essential travel.

Normally at this time, representatives from our respective organizations would be in Chicago for the annual American Society of Clinical Oncology (ASCO) meeting, for which over 40,000 oncology professionals gather to share best practices in clinical oncology research and academic and community practice. In light of the ongoing pandemic, ASCO 2020 was held as a virtual conference.

Note: There are many exciting updates and recent FDA drug approvals in the lung cancer space. These are being shared via other channels through our respective organizations and will not be covered here since our goal is to focus exclusively on relevant COVID-19 updates for the lung cancer community.

In this week’s update, we will cover three topics:

  1. COVID-19 presentations from ASCO 2020
  2. Advocacy groups participate in IASLC “Lung Cancer Considered” podcast
  3. Advocacy groups collecting data for AACR COVID-19 and Cancer conference

 

COVID-19 presentations from ASCO 2020

Previous reports have suggested that lung cancer patients infected with COVID-19 have worse outcomes.  During ASCO 2020, we heard updates from two different registry efforts focused on tracking cancer patient outcomes:

  1. The COVID-19 and Cancer Consortium (CCC19) registry is tracking outcomes across all cancer types. The major finding from this study is that patients with actively progressing cancer were five times more likely to die within 30 days of diagnosis with COVID-19 compared to patients who were in remission or had no evidence of disease. As ASCO President Dr. Howard A. Burris III states, “For people with cancer, the impact of COVID-19 is especially severe, whether they have been exposed to the virus or not. Patients with cancer are typically older adults, often with other underlying conditions, and their immune systems may be suppressed by the cancer, or due to chemotherapy, radiation, or other treatment.” These data are consistent with previous early reports and suggest that patients with active cancer are uniquely vulnerable and face worse outcomes upon infection with the virus that causes COVID-19.
  2. A second registry effort, Thoracic cancERs international coVid 19 cOLlaboraTion (TERAVOLT), is specifically tracking outcomes for lung cancer patients infected with COVID-19. For this study, 400 patients were included in the analysis, the majority of which had stage IV cancer. Among this cohort, 141 patients died from COVID-19, with 334 of the patients requiring hospitalization. Those patients receiving chemotherapy, either alone or in combination, within three months of a diagnosis of COVID-19 fared the worst, with a significantly increased risk of dying (64%) compared to those who did not receive chemotherapy.

Take home message from these studies: COVID-19 presents a unique threat to all cancer patients, especially those with lung cancer. Various international efforts are underway to understand these risks and what it means for patients and their cancer care. As states continue to reopen, it is important not to let your guard down and to maintain all the precautions you have been taking over the past few months. This virus has not gone away and it is important that you and your loved ones take appropriate steps to minimize exposure.

 

Advocacy groups participate in IASLC “Lung Cancer Considered” podcast

Authors of these weekly updates, including Dr. Jan Baranski, Janet Freeman-Daily, Dr. Amy Moore, and Dr. Upal Basu Roy recently participated in the International Association for the Study of Lung Cancer (IASLC) “Lung Cancer Considered” podcast. They were joined by Jill Feldman, Dr. Alice Berger, Dr. Christine Lovly, and Dr. Brendon Stiles to discuss impacts of COVID-19 on lung cancer research. Despite the obstacles created by the pandemic, lung cancer research marches on and we think you will be encouraged and inspired by the discussion. Listen here.

 

Advocacy groups collecting data for AACR COVID-19 and Cancer conference

In light of the COVID-19 pandemic and its impact on cancer care, AACR is convening a special conference focused on the presentation of emerging data in basic, clinical, and epidemiologic research related to COVID-19 and cancer. Lung cancer patients are especially vulnerable to developing a serious case of COVID-19. In order to provide the community accurate, up-to-date, and curated scientific information on COVID-19 and cancer, lung cancer patient advocacy groups have come together to support our community through joint advocacy updates.

We need your help and your perspective!
We are inviting you to participate in this 10-minute survey to capture your concerns about COVID-19, and whether you found this collaboration and the updates useful. The survey will close at midnight Pacific Daylight Time, Friday, June 5, 2020 to allow us to prepare abstracts for submission to the AACR “COVID-19 and Cancer” virtual meeting.

You can also copy and paste this link on your web browser to take the survey.
https://www.surveymonkey.com/r/LC_JT_Updates

The data we collect from the survey will also be shared openly across all advocacy groups once the conference is completed. Thank you for your help and for providing us your perspective.

 

Resources and websites:

  1. IASLC’s Guide to COVID-19 and Lung Cancer
  2. The National Cancer Institute has a special website for COVID-19 and emergency preparedness. COVID-19: What People with Cancer Should Know-
  3. We are following updates provided by the World Health Organization (WHO) and the US Centers for Disease Control and Prevention (CDC)
  4. Johns Hopkins COVID-19 Resource Center
  5. Interactive map of US COVID-19 cases by state
  6. The One-Two Punch: Cancer And COVID-19 (an important perspective for cancer patients)
  7. You can find information specific to your state or city or town on your health department’s website.
    • Directory of state department of health websites
    • Directory of local health department websites
  1. American Medical Association resources for healthcare providers.