Lung cancer research gives patients hope, time with loved ones, and better quality of life. Ten years ago today, I entered a targeted therapy clinical trial for my ROS1+ lung cancer, taking an oral drug called crizotinib (trade name Xalkori). I’m still taking it (it’s now approved by the FDA and in many other countries) and have had no evidence of disease since I started it. Pretty amazing, since I had been given an expiration date of 2 years at the outside for my metastatic non-small cell lung cancer.
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.”
Lung cancer patient advocates share purpose, laughter, and tears. On #World Lung Cancer Day, I celebrate efforts to improve outcomes & quality of life for people living with lung cancer. Most of us have/had lung cancer. Many have died. Still, we persist because … we see how we make a difference. #LCSM #WLCD
Below I’ve listed several large, established nonprofit organizations engaged in some aspect of lung cancer patient advocacy. All provide medically validated information about lung cancer, offer patient supports, and/or fund lung cancer research. Many individual patients (like me) and smaller nonprofits are also engaged in aspects of lung cancer patient advocacy.
In early June, the American Society of Clinical Oncology held its 2022 Annual Meeting (#ASCO22) in Chicago. This was the first in-person annual meeting since the pandemic began. While attendance was smaller than usual, McCormick Place (the largest convention center in North America) still hosted 30,000 oncology-related clinicians, researchers, healthcare professionals, patients, and advocates from all over the world.
To address the risk of COVID-19 transmission, attendees were required to prove they were fully vaccinated against COVID-19. Attendees also were required to have a negative COVID-19 test, and COVID tests were readily available during the conference. Masking was recommended – “ASCO expects all attendees to be masked indoors at our meeting when not eating, drinking, or presenting.”
I am a cancer research advocate living with incurable lung cancer for over eleven years. I started attending ASCO Annual Meetings in 2014. It’s wonderful to gather with other cancer patient advocates, network with oncology professionals, and learn about the newest research for my disease. I would have loved to attend in person this year, but I didn’t. I chose to attend virtually during the pandemic because my radiation-scarred lungs are prone to infection (I’ve had pneumonia more than once since my diagnosis), and lung cancer patients are at increased risk of death from COVID-19. However, I had a window into the happenings at McCormick Place via the #ASCO22 hashtag on Twitter, as well as texts and messaging from friends who were there.
Many attendees tweeted pictures of colleagues reunited after a long, trying absence. The pandemic has been especially tough on medical professionals. They needed the joy that reconnection brings. I don’t begrudge them that.
However, those images generated a different emotion for me. After speaking with several friends in the lung cancer patient advocate community, I’ve learned I’m not alone in my feelings.
I’m pissed that the ASCO community appears to have given so little value to the safety of people who have cancer. Here’s why.
RISK OF COVID-19 TRANSMISSION AT #ASCO22 WAS KNOWN BEFOREHAND TO BE HIGH
COVID-19 transmission was deemed high in Chicago by the city’s COVID Dashboard in the weeks leading up to #ASCO22. Omicron variants were on the rise and deemed very transmissible. With tens of thousands in attendance, chances of encountering someone infected with COVID were NOT low. Although omicron symptoms seem generally less severe, people are still dying from it–especially people with underlying conditions, like cancer. Others have lingering side effects.
Several medical professionals who attended the smaller 2022 American Association of Cancer Research (#AACR22) Annual Meeting in New Orleans last April tested positive for COVID-19 a few days after the meeting. Masks were not required at AACR, and few masks were seen in surrounding hotels, restaurants, and public transportation. By the start date of the much larger ASCO meeting two months later, community transmission of COVID was much higher. The likelihood someone at #ASCO22 would become infected was a virtual given.
MASKS WERE EXPECTED, BUT NOT REQUIRED
While ASCO expected masks to be worn, masking was not required nor enforced. On the second day of the conference, a tweet observed that perhaps 50% of attendees were wearing masks. Other tweets showed some attendees gathered for selfies and group pictures in session rooms and hallways wearing no masks. Others reported people at ancillary events and hosted parties that included food were frequently unmasked.
ONLY ONE COVID-19 TEST WAS REQUIRED, AND RESULTS WERE NOT CHECKED
ASCO 2022 required a COVID-19 test “within 48 hours of the time they entered any of the session rooms or exhibit hall.” This allowed international attendees with long flights to test after they arrived at McCormick Place. However, testing relied on the honor system: no one verified nor recorded test results. Both rapid and PCR tests were readily available throughout the conference for those who wished to test again, but no system was available for posting results. One doctor who planned to attend tested negative for COVID the day before travel. To be extra safe, they tested just before leaving for the airport. That second test was positive. As a result, she chose not to attend the conference.
It’s unlikely everyone was equally diligent with testing. How many people arrived at the conference unknowingly positive?
ONCOLOGY PROFESSIONALS, YOUR PATIENTS WANT YOU TO SET THE EXAMPLE
Oncology is a medical field that’s evidence based and highly dependent on data. Good results demonstrated in clinical trial data are essential to getting new cancer drugs approved by regulators and available to patients. One would think oncology professionals would be the first to follow the data when it comes to protecting their patients from COVID-19. People who have cancer expect our doctors, nurses, and other clinical professionals to set and maintain a high bar.
So many patient advocates typically attend ASCO that the meeting offers a Patient Advocate Lounge as well as patient-focused programs. Many of these advocates have active cancer. Before the meeting, both patient advocates and doctors pleaded with ASCO to make masking a requirement to reduce the risk of spreading of COVID to patients who attended ASCO, and to healthcare providers at ASCO who would be seeing patients in clinic when they returned home. ASCO refused. The letter has since been taken down, but is mentioned in this article.
Lung cancer patient and research advocate Jill Feldman had the honor of being invited to speak in an ASCO education session. Including patients on ASCO panels is still rare, and Jill takes the responsibility of representing the patient voice seriously. She chose to forego in-person ASCO except for the session in which she was speaking because she had significant COVID anxiety — she’d been hospitalized for the virus last December. She lives near Chicago, so she didn’t have to fly or stay in a hotel. She wore an N95 mask, except for her time on the podium. A tweeted picture of the audience in her session (since deleted) showed many faces and few masks. Despite Jill sharing her anxiety about possible COVID exposure at the end of her talk, some ASCO attendees approached her afterwards to chat without wearing masks.
I am grateful for the oncology professionals who are caring for me. I am glad they feel renewed by their experience at #ASCO22. I appreciate those who were careful to stay masked while at the conference.
Still, I am angry about the apparent disregard for people who have cancer that was demonstrated by ASCO as a community and the oncology profession as a whole. Many #ASCO22 attendees were unmasked while hugging, sitting shoulder-to-shoulder in sessions, chatting while in noisy food courts, catching up over Exhibit Hall lattes, and networking at after-hours parties. I wonder how many of them (or the people they were near) were in clinic the next day sharing their ASCO joy and COVID with immunocompromised patients.
A fellow lung cancer advocate and virtual #ASCO22 attendee tweeted her decision not to attend in person. Her choice was widely applauded: in five days, her tweet received almost 2000 likes, 200+ retweets, and dozens of “thank you” responses.
C’mon, ASCO community, you can do better. Cancer patients expect – no, REQUIRE – you to set a high bar. Step up.
Today marks 11 years since I was first diagnosed with advanced lung cancer.
Eleven years with the mostly deadly cancer. Imagine that!
When I was diagnosed, my life expectancy was 2 years on the outside, and that was higher than the average because I was relatively young and otherwise healthy. The majority of lung cancer patients died within a year of diagnosis.
Thanks to online patient communities, targeted therapies, biomarker testing, clinical trials, and dedicated clinicians like Dr. Ross Camidge, whose smiling face appears next to mine in this picture, I’m still here. These things, along with additional new treatments like immunotherapy, new biomarkers, lung cancer screening, and ongoing medical research are changing the face of lung cancer. The expected survival of advanced lung cancer patients has risen by several YEARS since I was diagnosed.
Today, I’m grateful. Grateful for the medical research and treatments that have kept me alive with a good quality of life. Grateful for the additional time I’ve had with my family and this amazing universe. Grateful for finding a new purpose as a lung cancer research advocate collaborating on The ROS1ders, IASLC Supportive Training for Advocates on Research and Science (STARS), and other projects. And especially, I’m grateful for the wonderful friends and colleagues I’ve met along the way.
My prayer is that someday ALL people will have ready access to effective treatments and compassionate care for their health conditions, no matter what they look like, where they live, how much money they have, or how others believe they should be treated.
GO2 Foundation for Lung Cancer (with the support of the entire lung cancer community) has submitted an appropriations request of $60M in the FY23 Defense Appropriations Bill with a goal to increase funding for the Department of Defense Lung Cancer Research Program (DOD LCRP) to $60M from its current $20M. The entire lung cancer community is joining forces to make it happen!
It takes only a couple of minutes to make your voice heard. But when all our voices join together, it becomes a ROAR.
Please click the link below and follow the instructions to tell your US Senator & Representatives to support $60 million for federal lung cancer research in 2023. Tell your friends & family. Please share widely on all your social media platforms.
HURRY! The House letter deadline is April 26 and Senate letter deadline is May 12, so don’t wait.
Today Washington’s state-wide mask mandate is gone (though masks are still required in some settings). When you see people still wearing masks, please don’t give us a hard time. You don’t know the health conditions we or people we love may have.
The mask mandate is gone, but the COVID-19 virus is not. Medical research has collected data that shows certain populations are at higher risk of severe or fatal COVID-19 if exposed to it. Older people, especially those over age 80, have less effective immune systems.
Sometimes people are at greater risk because of physical issues. My lungs have been damaged by radiation treatment for lung cancer, and are unable to clear nasties as effectively as they once did. I’ve had pneumonia several times since my cancer diagnosis nearly 11 years ago. Hospital data shows people with some chronic conditions like heart disease and diabetes are more likely to get severely ill if they get the virus.
Some people are at greater risk due to compromised immune systems. Medical treatments like chemotherapy or high-dose steroids impair the immune system. Very young children have immature immune systems.
It’s not a given we’ll get severely sick, but the odds are not in our favor. We’re into risk reduction. Medical data show KN95 and N95 masks reduce the likelihood of catching COVID-19. Our doctors suggest we should wear masks when in public. The CDC recommends we continue to wear masks. More data is needed for those of us at increased risk before we take off our masks.
When you encounter someone wearing a mask, or resistant to indoor dining in restaurants, or unwilling to attend a event with a large group, please be kind.
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.
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.
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.
Many of my friends who have lung cancer take targeted therapy pills. Mine costs $17K per month when not covered by insurance. Some drugs cost even more.
Unfortunately, most all patients who take targeted therapy pills see their cancer eventually start to grow again. These patients often must change to a different anti-cancer therapy. When a patient has to change therapies, they may be left with unused medications.
Patients on expensive medications HATE to throw out their cancer drugs when those same drugs might help someone else live longer or more comfortably.
Some US states will allow “prescription reuse” — unopened cancer drugs can be donated for use by a different patient. As the map shows, state laws on this subject vary significantly, and not all states that have enacted prescription reuse laws have operational programs that enable reuse.
Why isn’t this easier? Why can’t I just drop off my unused pills at a pharmacy and know they’ll get to someone who really needs them but can’t afford them?
If you wish to donate unneeded cancer drugs, check with a local pharmacy or prescriber for practical advice on what may work in your situation, in your state. If your state has no operating program, contact your state legislators.
What a great opportunity for patient advocacy to make a difference!