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.

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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.

My 9th Cancerversary–Adapting to a changing landscape

Today is my 9-year cancerversary.

I was diagnosed in 2011 with Stage 3a NSCLC, and progressed to stage 4 after first line chemo-radiation. Progressed again after 2nd line treatment (different chemo and more radiation). Then I tested positive for ROS1, enrolled in the crizotinib clinical trial in November 2012, and have had no evidence of disease on scans ever since, with manageable side effects.

A few months after starting the clinical trial, I felt well enough to think about what’s next.  I was grateful for surviving thus far, and wanted to make a difference. In 2013 I found my purpose: I became a patient advocate, and over the years evolved into a research advocate. My time is spent on The ROS1ders (a global group of ROS1+ patients and caregivers that strives to improve outcomes for all ROS1+ cancers), the IASLC STARS program (to develop new lung cancer research advocates), collaborative cancer advocacy, and translating science for others.

Apparently living well with lung cancer and having a purpose was not enough. The ‘verse decided more character building was needed. Like everyone else, I am now learning to adapt to life during a pandemic.  The whole world is now experiencing what we metastatic lung cancer patients live every day:

  • A deadly disease with no cure
  • Cumulative, sometimes overwhelming losses
  • The fear of not knowing when death will come for you or strike someone you love.

I hope someday every ROS1+ positive cancer patient, every lung cancer patient, every cancer patient will have a cure.

I hope the world will soon have effective treatments and a vaccine for COVID-19 .

I hope our healthcare providers and systems survive the upheaval.

I hope our economy recovers swiftly.

I hope more people recognize the power and value of science, working together, and compassion for one another.

I hope I live long enough to see it.

 

Time for more kitty snuggles.

May 4, 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.

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The authors of this weekly advocacy update are all scientists (nerds) and so before we get to this week’s update, indulge a little humor: “May the Fourth be with you!” Now back to our regularly scheduled programming.

 

As of May 2, 2020, the Centers for Disease Control and Prevention (CDC) reports 1,062,446 cases of COVID-19 and 62,406 COVID-19-associated deaths. Many states are beginning to loosen restrictions and reopen certain businesses.  It is worth noting that in Georgia, the first state to reopen, the shelter in place policy has been extended through June 12, 2020 for the most at-risk populations, including those over age 65, those in nursing homes or long-term care facilities, those with chronic lung disease, moderate to severe asthma, severe heart disease, class III/severe obesity, diabetes, liver disease, chronic kidney disease and undergoing dialysis, as well as those who are immunocompromised.

On Friday, May 1, 2020, the Food and Drug Administration (FDA) granted emergency use authorization for the antiviral drug, remdesivir, for the most severely ill COVID-19 patients. While this is an encouraging development, we must provide a word of caution in that we still do not have effective treatments for broad use by the general public or a vaccine.

In light of the ongoing COVID-19 pandemic, the American Association of Cancer Research (AACR) shifted its annual meeting to a virtual format and broke it into two separate events. The first was held on April 27 -28, 2020. In this week’s update, we will discuss some of the information presented during this meeting and what it means for the cancer community. In particular, we will focus on answering three questions:

  • What are the implications of COVID-19 for my personal cancer treatment?
  • How do I make sense of contradictory COVID-19 information?
  • What are the impacts of COVID-19 on cancer research?

 

What are the implications of COVID-19 for my personal cancer treatment?

Since we first started providing these updates in early March 2020, there has been growing evidence that lung cancer patients infected with COVID-19 have worse outcomes. During the AACR plenary session on “COVID-19 and Cancer,” an international team led by Dr. Marina Garassino presented early data for TERAVOLT, a global registry collecting characteristics and outcomes of patients with thoracic cancers affected by COVID-19. They reported a disturbingly high mortality rate of 34.6% (66/191) among patients with thoracic cancers.

As research advocates serving the lung cancer community, we recognize that these data are alarming. The immediate implications of these results fall in line with what we have been advising those who fall in high-risk groups, including lung cancer patients: continue to practice social distancing when possible, wear protective face coverings when out in public, wash hands often, and minimize travel to essential needs only (medical appointments, procuring groceries or prescriptions).

Our April 20, 2020 update discussed the increasing role for telehealth in management of patient care and our April 27, 2020 update focused on the guidelines issued by leading medical organizations and societies. Our March 30, 2020 update included impacts on clinical trials – as states begin to reopen, some trial sites are resuming enrollment. Thus, it remains imperative that you talk with your treatment team about your individual treatment plan.

Indeed, as a result of the COVID-19 pandemic, doctors and scientists are reevaluating treatment schedules and the “usual way of doing business.” One example is the recent April 28, 2020 FDA approval for a new dosing regimen for the immunotherapy drug, pembrolizumab. This approval is based on data presented at the 2020 AACR Virtual Meeting.

Dr. Jacob Sands, a leading lung cancer medical oncologist at Dana-Farber Cancer Institute, provides a nice discussion on the importance of individualized lung cancer management in the COVID-19 era here.

 

How do I make sense of contradictory COVID-19 information?

We recommend that you follow information from trusted and medically vetted websites such as the CDC, the WHO, and the IASLC. Information on how to access these websites are included in the Resources and websites section below.

Our understanding of COVID-19 is evolving rapidly. This means that what was true a month ago may not be true under current circumstances, as doctors and scientists generate more evidence. You might hear contradictory information from different sources or at different times. As an example, the anti-malarial and autoimmune disease drug, hydroxychloroquine, was shown to have positive effect in COVID-19 patients in early studies. However, further study with more patients showed hydroxychloroquine was not as effective as it was initially thought to be, and highlighted the fact that hydroxychloroquine comes with a range of side effects that make it unsuitable for use in patients with heart issues. This is a great example of the scientific method whereby a finding or a hypothesis changes as new information is gathered.

We also caution on how one should interpret information shared across media and press during these times. COVID-19 is a global pandemic and is affecting the oncology community everywhere in the world. Given the urgent global need for information on effective COVID-19 management, healthcare providers are sharing preliminary information as quickly as possible with the goal of learning from each other’s experiences. This means that not all information shared publicly will have the same level of evidence as formal clinical trials. The information is important and valuable, but it is not yet validated in large groups of patients.

When judging what you read from publicly available sources, we suggest you use the Evidence-Based Medicine (EBM) Pyramid as a guiding framework.

EBM Pyramid and EBM Page Generator, copyright 2006 Trustees of Dartmouth College and Yale University. All Rights Reserved. Produced by Jan Glover, David Izzo, Karen Odato and Lei Wang.

Higher quality of evidence takes longer to get published to allow for collecting larger amounts of data, statistical analysis, and scientific peer review. Most of the literature currently available on COVID-19 and lung cancer are case reports and studies of a small number of patients in a few institutions.  COVID-19 has not been around long enough to enable large, formal clinical trials about its impact on lung cancer treatment. If you have questions about whether published COVID-19 findings might affect your lung cancer treatment, please discuss your individual situation with your treating physician.

 

What are the impacts of COVID-19 on the state of academic cancer research?

 Most academic research institutions, including universities and hospitals, have shut down most research labs and closed enrollment in some clinical trials to accommodate government-imposed shelter in place mandates and protect researchers’ lives. Only critical research, such as maintaining cell lines or animal models for preclinical research and some clinical trials with strong evidence of effectiveness, is being allowed to continue. These are institutionally mandated restrictions that have been put into place to protect university staff. Some researchers who are also clinicians have been deployed to assist with COVID-19-related clinical duties. Bench scientists who are not involved with clinical duties have been advised to work from home in activities such as grant and manuscript writing, and data analysis.

Funders of academic lung cancer research in the US such as the National Cancer Institute, the Department of Defense, and private non-profits (e.g.,  LUNGevity Foundation, GO2 Foundation, Lung Cancer Research Foundation, Lung Cancer Foundation of America) have all made concessions to accommodate the needs of the scientific community and best support investigators during this critical time, while trying to minimize any delays in lung cancer research. Concessions include:

  • Extended deadlines for grant applications
  • Allowing the use of grant funds for salaries and stipends even when researchers are not working in the laboratory
  • Flexibility regarding project extensions and accommodating unanticipated costs such as loss of animals and chemicals bought for experiments
  • Allowing grantees more time to report on awards after an award is completed
  • Numerous flexibilities regarding expenditures of funds, such as money already spent in conferences and travels

 

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.

@IASLC STARS program statement about #coronavirus and #COVID19

The IASLC STARS program develops new patient research advocates (PRAs) to help accelerate lung cancer research. You’ll find program info and PRA and Mentor applications at https://www.iaslc.org/Research-Education/Supportive-Training-for-Advocates-in-Research-and-Science-STARS>https://www.iaslc.org/Research-Education/Supportive-Training-for-Advocates-in-Research-and-Science-STARS.

We encourage you to apply by March 16!

Be sure to read the Guidelines and FAQs before applying. They contain useful information you’ll need to make a strong application.

The program is making contingency plans to ensure STARS will happen in some form despite concerns about the novel coronavirus and COVID-19. Here’s the official IASLC statement:

 

PLEASE NOTE A CHANGE IN PROGRAM REQUIREMENTS, AS OF 9-MARCH-2020:
Yes, you CAN still apply if you or your loved one has experienced cancer progression recently. The health and safety of the lung cancer community is our top priority. PRAs and Mentors who have or had lung cancer and who are selected for the program will need to provide a letter from their primary lung cancer physician stating that the applicant is in adequate health to travel to Singapore in August 2020 and fully participate in all required STARS activities.

Lung cancer patient and 2019 STARS Mentor Jill Feldman blogged her experience with the program here: https://lungcancer.net/living/stars-program/

Hear more about the IASLC STARS program in this video:

Help guide efforts to modernize ClinicalTrials.gov — submit comments by 14-March-2020

ALL HANDS ON DECK! Engaged patients, patient advocates, research advocates:  this means YOU.

Clinicaltrials.gov (the federal website that lists all available clinical trials) is being modernized, and they want to hear from YOU. Please submit your comments and suggestions about the clinical trials submission process, site functionality, data standards, ease of searching, etc by 14-Mar-2020 at https://nlmenterprise.co1.qualtrics.com/jfe/form/SV_e2rLEUAx99myump

A public meeting will be held April 30 to discuss the submissions.

What is an IRB and why should patients care?

Image credit:  This Photo by Unknown Author is licensed under CC BY-ND