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

In memoriam: two ROS1+ lung cancer patients, bound by rodents

The original ROS1ders: Stuart Grief, Lisa Goldman, Tori Tomalia, Janet Freeman-Daily, Lysa Buonanno

I first “met” my friend Tori Tomalia in an online lung cancer community in 2013. A gifted writer, she already had a well-established blog that was funny, informative, and poignant. I admired the way she sculpted words to show how life continued despite all the downsides that accompany a deadly disease.

Tori was diagnosed with ROS1+ lung cancer about a year after me.  We formed a connection through blogging and shared lung cancer advocacy activities, such as promoting #LCSM (Lung Cancer Social Media) Chat on Twitter.  Her blog explored areas of life that I would never know: how to tell your young child you have a deadly cancer, how to make memories with the kids when you feel like crap. Her lung cancer journey was much different than mine.  She had recurring brain mets that required radiation and sometimes brain surgery. While my clinical trial drug gave me years of no evidence of disease, for her it caused constant nausea.  Clinical trial drugs failed her quickly.  Yet her blogs and social media posts, though honest and at times raw, often found something positive to share, even if it was that she was still alive. Tori embraced life.

The first time Tori and I met in person was when five ROS1+ cancer patients found each other in a bar at LUNGevity Hope Summit in April 2015—a gathering that sparked the creation of The ROS1ders. I don’t remember much of that whirlwind weekend in Washington DC, but I clearly remember chatting with her on the bus coming back from the awesome Saturday dinner at a historic carriage house. Her quiet confidence inspired me.  As I got to know her, I learned about her fierce inner advocate, ability to get the job done, and devotion to family.  I also learned we shared a love of Buffy the Vampire Slayer.

Shortly after that event, Tori set up the private Facebook group that became the focus of The ROS1ders. She was often the first person with whom new members interacted; she had a gift for making them feel welcomed and hopeful through a computer screen. As we worked together, Tori often brought sparks of insight and inspiration to our discussions.  She coined our name “The ROS1ders,” revised posts to make them understandable to a greater number of people, and frequently provided a reasoned, compassionate alternate viewpoint.  One time when we needed a post to describe using mice to study our cancer, I asked Tori if she would write it.  She was nervous about it, pointing out that she and I had different writing styles (I tended towards science geek, while she tended towards improv comedy).  I told her different styles kept things interesting, and I knew I’d like whatever she wrote.  When the blog was posted, I actually laughed with delight at her chosen title: “The ROS1ders meet the rodents.”  (You were wondering why the title referenced rodents?  Now you know.)

I think The ROS1ders have succeeded as much as they have because of the indescribable bond that the cofounders Tori, Lisa Goldman, and I shared.  We never had a fight. We just talked things through. I feel blessed to have experienced this magic.

I was thrilled in 2018 when Tori and I discovered our clinical trial visits to the University of Colorado in Denver would be happening at the same time!  I eagerly waited in the DIA terminal for her flight to arrive. As she came off the elevator, she gave me a big smile, and I smiled in return at her awesome high-top red-sequined sneakers (reimagining Dorothy in the Wizard of Oz).  I played chauffeur for her that trip, and helped her navigate the CU campus as she went through all the tests and procedures required to enroll in the trial.  We connected on a few more trips after that, including one where she accompanied me to the offices of the International Association for the Study of Lung Cancer and helped with early planning for the STARS program (which she named). Eventually Tori was able to move her clinical trial participation closer to home in Michigan. We didn’t see each other in Denver again.

My last meeting with Tori was in New York City in May 2019, when The ROS1ders were finalists for a precision medicine award.  Tori and I wandered around NYC near our hotel looking for a mutually agreeable take-out restaurant. Later, we connected with Lisa Goldman and another ROS1der, Jess Wittebort, in the park outside the NY Public Library (where the event was held). We talked about life, death, and everything in between. We could talk about anything. It was a wonderful evening.

Tori did everything she could to stay in this world and share the adventure of living with her beloved husband, children, and extended family.  In the end, the weariness of years dealing with treatments and side effects wears one down.  I hope this story helps her children see the side of Tori that was so dedicated to helping others live better and longer despite ROS1+ cancer.

Zander, Mikaela, and Autumn:  
Your mama is amazing.  She made a difference to hundreds of people.  Thanks for sharing her with the lung cancer community.

FDA Listening Session on Molecular Subsets of NSCLC — 21-Jan-2021

The US FDA is hosting a listening session to gather patient perspectives on oncogene-driven lung cancer. Representatives from several biomarker patient groups will speak; I will be speaking on behalf of The ROS1ders. Representatives from the FDA will share ways they are addressing the concerns raised by the patients.

When: Thursday, January 21, 2:30 pm to 4 pm ET.

Where: To receive a link to the event, register free at https://fdaoce.formstack.com/forms/nsclclisteningsession

If you’re unable to attend, you can watch the recording later.

CLCC statement regarding COVID-19 vaccinations for cancer patients

See the source image

The COVID-Lung Cancer Consortium (CLCC) is a global forum comprised of experts in thoracic oncology, virology, immunology, and vaccines, in addition to representatives of patient advocacy, government, and professional organizations. They meet every other week to address issues and explore research at the intersection of COVID-19 and lung cancer.

CLCC has drafted a statement about the importance of prioritizing cancer patients for vaccination against COVID-19. Its language has been enthusiastically endorsed by leading clinicans and scientists. We hope it will encourage vaccine prioritization of patients with cancer–especially patients with lung cancer–so that vaccine doses will be made available for them should they CHOOSE to be vaccinated (after discussing risks and benefits for their individual case with their healthcare provider).

ASCO is also working to ensure that cancer patients receive priority designation in vaccine distribution plans.

CLCC Statement Regarding COVID-19 Vaccinations for Cancer Patients

Individuals with several clinical features and co-morbid conditions, including cancer, are at increased risk of severe COVID-19 disease. Of particular concern, patients with lung cancer have increased mortality rates of ~32% from COVID-19 infection, which calls for specific prevention measures. Currently, individual states have varying plans regarding prioritization of these high-risk patient populations for vaccination, with some states recommending cancer patients be vaccinated early while other states place these patients farther down the priority list. The COVID- Lung Cancer Consortium (CLCC) meets on a regular basis to monitor ongoing impacts of the pandemic on patients with lung cancer and is comprised of a global assembly of thought leaders in thoracic oncology, virology, immunology, vaccines and patient advocacy. CLCC recommends that state-level policies for vaccine administration should strongly consider a high priority for vaccination of all cancer patients and especially lung cancer patients. Thus, as more vaccine doses are made available, these patients will have early access should they choose to be vaccinated after discussion with their healthcare providers of the associated risks and benefits. Clearly, we still do not yet have enough information about the effectiveness and any additional side effects of such vaccines in cancer patients depending on their cancer type, stage, treatments, and other medical conditions. As such key information becomes available, like that from current NCI sponsored research, adjusted recommendations based on scientific knowledge can be made. Currently, the CLCC recommends specific attention to this vulnerable population(s) and close follow-up of these individuals to ensure the vaccine is effective and there are no unexpected adverse events.

Update for Week of December 14, 2020, to the Joint Statement on #COVID19 from #LungCancer Advocacy Groups


The first case of COVID-19 in the USA was reported on 1/20/2020—over 10 months ago. Since then, the country has reported 15,718,811cases and 294,535 deaths as of December 12 (per the Centers Disease Control and Prevention). With 80% of US counties reporting more travel than last year over Thanksgiving weekend in November 2020 despite warnings from the CDC, we are finally seeing the impact of this holiday surge.

  • The number of new cases is up more than 20 percent from 2 weeks ago
  • The number of hospitalizations has increased by 21 percent
  • The number of deaths has jumped 39 percent, with the United States surpassing 3,000 deaths in 1 day for the first time

On December 11, the United States Food and Drug Administration (FDA) issued an Emergency Use Authorization (EUA) for the first SARS-CoV-2 mRNA vaccine, BNT162b2, manufactured by the pharmaceutical giant, Pfizer. For a description of how mRNA vaccines work, please check our last update available here. The New York times reported that large-scale manufacturing and distribution of vaccines has already begun, with the first dosing to start on December 14, 2020. This huge milestone is a positive step towards fighting the COVID-19 pandemic. However, it is important to keep in mind that it will take a considerable amount of time before the entire US population is either vaccinated or immune to COVID-19 through natural infection. With the year-end holidays around the corner and an anticipated increase in travel, the CDC has extended its travel advisory to include the winter break. We encourage our community members to weigh the risks and benefits of travel during this winter. Thanks to the vaccine, the end of the pandemic may be on the horizon. Till such time, maintaining public health measures such as masking, handwashing, social distancing, and minimizing non-essential travel are our best bets for protection.

How was the Pfizer vaccine approved?

The vaccine was approved based on a randomized, double-blind Phase 2/3 clinical trial. A total of 43,548 participants (older than 16 years) received either two doses of the vaccine or a placebo injection three weeks apart. Participants were followed for safety and for the development of symptomatic COVID-19 for approximately 2 months. Eight participants in the vaccine group developed symptomatic COVID-19, whereas 162 participants in the placebo group developed symptomatic COVID-19. The vaccine was found to be 95% effective in preventing severe COVID-19 symptoms i.e., for every 100 people who received the vaccine, 95 were protected from developing severe COVID-19.

Is the Pfizer vaccine safe?

Side effects reported by trial participants were generally mild or moderate, and reactions were less common and milder in older adults than in younger adults. Those who received the vaccine had localized reactions at the injection site (pain, redness, swelling) and systemic reactions (e.g., fever, headache, muscle ache) at higher rates than placebo recipients, with more reactions following the second dose.  Severe fatigue was observed in approximately 4% of vaccine recipients. However, this rate of severe fatigue is also lower than that observed in recipients of approved influenza vaccines for older adults. Serious side effects were similar in both the vaccine and placebo groups (0.6% and 0.5%, respectively).

It is important to keep in mind that we do not have long-term follow-up data from this clinical trial. Sometimes, side effects may show up after months of follow-up. Also, vaccination began in the United Kingdom last week. Two individuals with a history of severe allergic reactions were reported to have had a severe reaction to the vaccine. These individuals carried an EpiPen and use of the pen was sufficient to counteract the allergic reaction. It is anticipated that these reactions will be very rare given that such safety issues were not seen in the large clinical trial. The public health benefits of distributing this vaccine still far outweigh any perceived risks.

What is not known about the Pfizer vaccine?

  1. We do not know whether the vaccine will be effective for more than 2 months, because participants have only been followed for 2 months so far. However, additional data continues to be gathered.
  2. Children (less than 16 years of age), pregnant women, and immunocompromised patients (such as those who have received cell-based therapies or chemotherapy for their cancer) were not included in the study. We do not know if the virus will be safe (in children and pregnant women) or effective (in immunocompromised patients who may not mount an immune response) in the groups excluded from the clinical trial.
  3. The vaccine involves two doses given three weeks apart. The first dose “primes” the immune system to respond while the second dose “boosts” that response. If someone misses the second dose, we do not know whether the vaccine will still be effective.
  4. We don’t yet know whether the vaccine will prevent the recipient from getting infected or from spreading COVID-19. Again, we need more data. We’ll need to continue practicing public health measures such as masking and social distancing even after receiving the vaccine, at least in the near term.

When will I receive the vaccine?

The United States is adopting a phased approach to roll out large-scale vaccination. The phased approach prioritizes the most essential and the most vulnerable of our population as the first recipients of the vaccine, given the initial limited supply of vaccines. The following figure shows how the state of Massachusetts will use the phased approach for distributing vaccines.  It is anticipated that patients with lung cancer will receive vaccines in Phase 1 or 2.

As of December 2020, the Advisory Committee on Immunization Practices (ACIP) recommended that both 1) health care personnel and 2) residents of long-term care facilities be offered COVID-19 vaccine in the initial phase of the vaccination program (Phase 1a).

Each state in the United States is likely to have specific vaccination guidelines tailored to their own specific needs. For information specific to your state, please check this link.

An important population for our community is caregivers to patients with lung cancer. If you are the primary caregiver for your loved one, please check your eligibility for receiving the vaccine.

This will be our last update of the year. We wish everyone a safe and peaceful Holiday Season! Please continue to maintain social distancing, wash hands, mask, and minimize non-essential travel. See you in 2021!

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. 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. COVID-19 in patients with cancer: managing a pandemic within a pandemic
  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
  8. American Medical Association resources for healthcare providers.

Sep 21, 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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As of September 18, 2020, the US has had 6.7 million cases of COVID-19, with just over 198,000 deaths. The Midwest is leading new cases, with 8 cities in Wisconsin appearing on The New York Times list of the 20 metro areas with fastest-growing cases.

With the run-up to the US Presidential election now less than two months away, recent weeks have seen a growing national dialog on the potential availability of a SARS-CoV-2 vaccine. In this week’s update, we want to review some basic concepts on vaccines, the clinical trials process for ensuring vaccine safety and provide an update on the current status of the various vaccine candidates currently under development.

 

What is a vaccine? How long do vaccines last?

 In the most basic terms, a vaccine is a substance that can stimulate the body’s immune response to provide protection against diseases caused by different viruses and bacteria. Some vaccines provide potentially life-long protection (measles) while others provide long-term protection but still require periodic “booster” shots (tetanus being a classic example). Still others require annual vaccination because of the nature of the virus – influenza virus (that causes “flu”) undergoes changes from year to year and so the formulation for the vaccine changes each year to accommodate these changes and offer the best protection possible.

(PSA: don’t forget to get your flu shot this year!)

 

How are vaccines tested?

Everyone feels a great sense of urgency to develop a vaccine for SARS-CoV-2 so we can think about returning to some degree of “normalcy” in our daily lives. A concerted global effort is currently underway not only to develop a safe and effective vaccine but to develop other treatments as well (including so called monoclonal antibodies as well as novel antiviral treatments). In the US, the administration has developed what it refers to as “Operation Warp Speed” to try to accelerate vaccine development.

Without getting into a political debate, we want to offer a brief overview of what goes into getting a vaccine approved. Specifically, once a candidate vaccine is identified, its safety and efficacy (how well it works) must be validated through a rigorous clinical trials process as shown in the schematic below:

 

For a great overview of how vaccines are developed, the different types of vaccines, how they are tested and the status of current efforts to develop a SARS-CoV-2 vaccine, we refer you to an excellent resource put together by The New York Times.

 

Vaccine Safety

Historically, the United States Food and Drug Administration’s Center for Biologics Evaluation and Research (CBER) has been responsible for regulating vaccines in the US.  Recently, the scientific integrity of both the FDA and the Centers for Disease Control and Prevention (CDC) have come into question over fears that they may be rushing vaccine development in the interest of political expediency. Because of this concern, many of the pharmaceutical companies at the forefront of the effort to develop a SARS-CoV-2 vaccine signed an unprecedented pledge affirming their commitment to vaccine safety.

Politics aside, the scientific community must ensure any potential vaccine is both safe AND effective before it is approved and administered to the public. Past experience with the development of SARS and MERS (Middle-Eastern Respiratory Syndrome) vaccines has taught us that coronavirus vaccines need thorough testing. A recent incident that occurred during the Phase 3 clinical trial of AstraZeneca’s vaccine candidate highlights why vaccine safety is paramount. The initial lack of details about the nature of the incident raised concerns about lack of transparency by the drug companies developing these vaccines. In response to mounting pressure, several of the leading contenders have made their protocols public.

 

Hope on the Horizon

 Despite the challenges associated with developing an effective vaccine against SARS-CoV-2, there are several reasons to be hopeful:

  • The science is advancing at a historic and unprecedented pace. Previously, the fastest vaccine ever made (against mumps) took four years to develop.
  • We have access to novel vaccine development platforms and also experience with coronavirus vaccine development with SARS and MERS. Scientists are building on this pool of available knowledge to develop a vaccine against SARS-CoV-2.
  • We have gone from first identifying a novel virus (SARS-CoV-2) as the cause of COVID-19 (Dec 2019) to having the sequence of the viral genome (Jan 2020) and the pursuit of multiple, compelling vaccine efforts within the span of only six months.

 

Resources and websites:

  1. IASLC’s Guide to COVID-19 and Lung Cancer
  2. National Cancer Institute website “Coronavirus: 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
  8. American Medical Association resources for healthcare providers

GO2 Foundation for Lung Cancer (Amy Moore, PhD – amoore@go2foundation.org)
LUNGevity Foundation (Upal Basu Roy, PhD, MPH – ubasuroy@lungevity.org)
Lung Cancer Foundation of America (Kim Norris – KNorris@lcfamerica.org)
Lung Cancer Research Foundation (Cristina Chin, LMSW, MPH – cchin@lcrf.org)
LungCAN (Kimberly Lester – kimberly@lungcan.org)

 

Sep 8, 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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We hope that all of you had a peaceful Labor Day holiday.  This week marks the six-month anniversary of when the World Health Organization declared COVID-19 a global pandemic (March 11). As of September 7, 2020, cases in the US have surpassed the 6 million mark, with over 186,000 deaths.

Nationally, new cases appear to be on a decline but pockets of high COVID activity remain. The figure below shows which states have the most new daily cases and the relative degree of community spread versus containment of the virus:

 

 

PSA: Get your flu shots!

 With the arrival of September, we are strongly recommending that all eligible patients and caregivers get their annual flu shot this year! Public health experts are particularly concerned about the potential for patients to get infected with both influenza and SARS-CoV-2 this winter. Additionally, since the symptoms for these two viruses are similar, many patients experiencing flu-like symptoms may flood already overtaxed healthcare systems. Many doctors’ offices and pharmacies already have flu shots available. It’s also important to remember that it takes approximately two weeks from receiving the shot to have adequate protection. So please make a plan to get your shot as soon as possible.

Some patients, particularly those on checkpoint inhibitors, may be concerned about whether they can take the flu shot – we always recommend asking your doctor but previous studies suggest that it is safe for patients.

 

We want to hear from you!

We are interested in knowing what topics we should cover in future updates. Please share your thoughts with us by taking this short (1-2 minute) anonymous survey.

https://www.surveymonkey.com/r/LungAdvocacy_COVID19_needs

 

Resources and websites:

  1. IASLC’s Guide to COVID-19 and Lung Cancer
  2. National Cancer Institute website “Coronavirus: 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
  8. American Medical Association resources for healthcare providers

GO2 Foundation for Lung Cancer (Amy Moore, PhD – amoore@go2foundation.org)
LUNGevity Foundation (Upal Basu Roy, PhD, MPH – ubasuroy@lungevity.org)
Lung Cancer Foundation of America (Kim Norris – KNorris@lcfamerica.org)
Lung Cancer Research Foundation (Cristina Chin, LMSW, MPH – cchin@lcrf.org)
LungCAN (Kimberly Lester – kimberly@lungcan.org)

 

Aug 24, 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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It has been more than 6 months since the first cases of COVID-19 hit the United States. We issued our first update on March 3, a week before the World Health Organization declared a global pandemic on March 11. As of August 24, 2020, cases in the United States continue to rise unabated, with over 5.6 million total cases and 175,000 deaths. Countries in Western Europe that had seen a decrease in case load have recently seen small outbreaks, indicating that community spread continues to be a high possibility.

So we are left to wonder: when can we resume normal activities in our lives?

The straightforward answer to that question is when we have achieved a reasonable level of herd (or community) immunity, which occurs when a high percentage of the community is immune to a disease through vaccination and/or prior illness (natural infection). Herd immunity is critical because it not only prevents the spread of infection but also protects people who may not be able to receive a vaccine (for example, the elderly or the severely immunocompromised in whom the immune system is unable to mount a protective response against the virus).

Epidemiologists are hard at work figuring out what levels of herd immunity will protect us from SARS-CoV-2. Initial models suggested that the percentage of people who need to be immune to the virus to achieve herd immunity was around 70%. However, recent research suggests a lower threshold, on the order of only 40%. It is extremely important to keep in mind that no matter the threshold of immunity required, these estimates are based on mathematical models and not true population-based studies.

Our current level of potential immunity to SARS-CoV-2 (the virus that causes COVID-19) is measured using an antibody assay that detects past exposure to the virus whether or not a person had symptoms of COVID-19. Herd immunity through natural infection may depend on location. For example, levels of herd immunity may be lower in rural areas where people are more spread out than in cities, which are more crowded. Also, older people may be more susceptible to the virus and succumb to the disease, whereas younger people may recover from infections and add to the “pool” of herd immunity. Recent research from a COVID-19 hotspot, New York City, looking at the percentage of people who are “antibody-positive” shows a huge variation within the five boroughs of the city. It is therefore possible that the harder hit areas, such as parts of Brooklyn and Queens, may be close to achieving a herd immunity threshold whereas other parts of the city may not (assuming that the antibody tests are accurate and antibodies are long-lasting). This is especially important to keep in mind because it clearly demonstrates that achieving a high percentage of immune individuals through natural infection is not an easy task and comes with a price (please refer to our past update on seropositivity from July 13, 2020).

We are interested in knowing what topics we should cover in future updates. Please share your thoughts with us by taking this short (1-2 minute) anonymous survey.

https://www.surveymonkey.com/r/LungAdvocacy_COVID19_needs

 

Resources and websites:

  1. IASLC’s Guide to COVID-19 and Lung Cancer
  2. National Cancer Institute website “Coronavirus: 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
  8. American Medical Association resources for healthcare providers

GO2 Foundation for Lung Cancer (Amy Moore, PhD – amoore@go2foundation.org)
LUNGevity Foundation (Upal Basu Roy, PhD, MPH – ubasuroy@lungevity.org)
Lung Cancer Foundation of America (Kim Norris – KNorris@lcfamerica.org)
Lung Cancer Research Foundation (Cristina Chin, LMSW, MPH – cchin@lcrf.org)
LungCAN (Kimberly Lester – kimberly@lungcan.org)

 

Aug 10, 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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As of August 9, 2020, we are approaching 20 million cases of COVID-19 worldwide, with almost 5 million cases and 160,000 deaths in the US alone. In this week’s update, we want to shift our attention to another looming healthcare crisis resulting from the pandemic, namely a significant decline in new cancer diagnoses. Given the importance of maintaining appointment schedules, we will also present questions that you may want to ask your healthcare provider in advance of visits to the doctor. Finally, we will highlight ongoing advances in lung cancer research, because cancer doesn’t stop and neither do we.

 

What is the impact of COVID-19 on new cancer diagnoses?

In the early days of the pandemic here in the US, many stakeholders conducted various modeling simulations to look at the short-term and long-term impacts of the pandemic, particularly related to people continuing to get their recommended cancer screenings (mammograms, colonoscopies). These studies highlighted a looming crisis, predicting a rapid decline in the number of new cancer diagnoses. Dr. Ned Sharpless, Director of the National Cancer Institute, highlighted some of this data in a recent presentation at the AACR COVID-19 and Cancer Conference and in an editorial for Science.

This past week, a new study showed an alarming overall drop (46%) in new cancer diagnoses across six different tumor types, including lung cancer, for the period from March 1 to April 18, 2020:

Additional reports from the across the country indicate an even higher drop in new cancer diagnoses. The COVID and Cancer Research Network reported a decline of 74% across 20 sites in the US for April 2020 compared to April 2019.

While people were encouraged to delay these essential screenings during the spring, we know that early detection of cancer is critical for achieving the best outcome and so we want to stress the importance of keeping up with your medical appointments and recommended screenings. To that end, we want to empower you with a set of questions to ask your doctor in advance of any visits so that you feel they are taking appropriate precautions to ensure your safety.

 

What Should I Ask My Doctor About What They’re Doing to Keep Me Safe?

It’s not unusual to be concerned about the risk of exposure to coronavirus when you go to a clinic or hospital during a pandemic. A facility that is currently experiencing a large volume of COVID-19 patients, or limiting certain procedures or services, may have limitations on which patients it can accommodate.  However, most facilities are ready to welcome patients.

Hospital and clinic facilities are taking extra precautions to keep their patients safe. Many facilities are posting videos and information on their websites explaining which precautions they’ve implemented (here is an example video).

If you can’t find information online about the facility you want to visit, call the facility and ask about their precautions.  Here are some questions you can ask your care provider or facility before an in-person appointment:

  • Can the care provider conduct the visit via telemedicine? (This option requires a patient who doesn’t need an in-person consultation or procedure, AND who is comfortable with and has the equipment for conducting video meetings on a computer or smartphone).
  • Can prescriptions be acquired through home delivery, mail order, or curbside pick-up?
  • Does the facility require everyone to wear a face covering at all times?
  • Does the facility direct patients who have COVID-19 to specific entrances or areas to minimize contact with other patients?
  • Does the facility screen all staff for typical COVID-19 symptoms before they start their shifts?
  • Does the facility have screeners at patient entrances to ask about known COVID-19 symptoms, take each visitor’s temperature, and ensure appropriate face coverings are worn (and provided, if necessary)?
  • Does the facility limit nonessential companions for each patient to no more than a single individual who is free of known COVID-19 symptoms?
  • Does the facility promote physical distancing through use of protective barriers, markers on the floor to indicate where to stand to stay 6 feet apart, and separating seats in waiting areas?
  • Is each piece of equipment and appointment area cleaned between each use by a patient?
  • Do enclosed treatment spaces (like MRI machines) have a waiting period between patients?
  • Does the facility adhere to stringent and frequent cleaning protocols, especially in high-touch areas?
  • Does the hospital allow visitors in patient rooms? If so, does it require them to check in at a nursing station or other screening area before entering patient’s room?

Additional steps YOU can take to help keep yourself safe before, during, and after a visit inside a hospital or clinic:

  • Don a clean face covering before entering the facility, avoid touching it or your face during your time in the facility, and keep it on at all times unless a healthcare provider asks you to remove it.
  • Wash your hands frequently. Bring hand sanitizer with you (just in case)
  • Before meeting your healthcare provider, wash your hands or use hand sanitizer.
  • When you get back to your car or your home, remove the mask carefully by touching only the ear loops. Use hand sanitizer after removing your mask.
  • To be extra cautious, wash your hands and face covering and change your clothes when you get home. You might even take a shower. Wash the clothes you wore to the facility.

 

And lung cancer research continues in full swing!

This year’s World Conference on Lung Cancer (WCLC 2020), hosted by the International Association for the Study of Lung Cancer, went virtual due to the COVID-19 pandemic. Originally scheduled to be held in Singapore from August 8-12, 2020, the scientific sessions will be available from January 28-31, 2021.

WCLC 2020 was officially kicked off on August 8, 2020 with the Presidential Symposium live telecast at 7 PM Singapore time. The Presidential Symposium is a platform to present practice-changing research in the early detection or treatment of lung cancer. This year’s Symposium had three fantastic Phase III trial presentations on immunotherapy for non-small cell lung cancer (NSCLC), a new targeted therapy for ALK-positive lung cancer, and immunotherapy for mesothelioma.

  1. Currently, a chemotherapy -immunotherapy (pembrolizumab) combination is prescribed as first-line treatment for NSCLC that does not have any targetable driver mutations and that does not express high levels of PD-L1 protein. This is based on the results of the KEYNOTE-189 clinical trial, and the combination is available in the United States and some Western European countries. Results from the Phase III ORIENT-11 trial conducted in China show that addition of an immunotherapy (sintilimab – a PD-1 checkpoint inhibitor) to chemotherapy shows similar benefits seen in KEYNOTE-189. This is an extremely critical finding because results of the ORIENT trial will set the stage for this combination to be available in China and other Asian countries, so that patients can continue to benefit from these advances.
  2. Ensartinib is a 2nd-generation ALK tyrosine kinase inhibitor. Results from the Phase III eXalt3 trial comparing ensartinib to crizotinib as first-line treatment for ALK-positive lung cancer show that this 2nd generation ALK inhibitor is superior to crizotinib, in terms of its effect both on the primary lung cancer and on brain metastases. These exciting results suggest that ensartinib may be another treatment option for ALK-positive lung cancer in the first-line setting.
  3. Malignant pleural mesothelioma (MPM) is an aggressive type of cancer affecting the lining of the lungs. It has been associated with exposure to asbestos. Results from the phase III CheckMate 743 trial, comparing combination immunotherapy (nivolumab-ipililumab) to chemotherapy showed that immunotherapy combo is superior to chemotherapy, in the first-line setting.

These three presentations will likely set the foundation for new drug approvals and remind us that lung cancer research will continue, no matter what COVID-19 brings!

 

Resources and websites:

  1. IASLC’s Guide to COVID-19 and Lung Cancer
  2. National Cancer Institute website “Coronavirus: 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
  8. American Medical Association resources for healthcare providers

GO2 Foundation for Lung Cancer (Amy Moore, PhD – amoore@go2foundation.org)
LUNGevity Foundation (Upal Basu Roy, PhD, MPH – ubasuroy@lungevity.org)
Lung Cancer Foundation of America (Kim Norris – KNorris@lcfamerica.org)
Lung Cancer Research Foundation (Cristina Chin, LMSW, MPH – cchin@lcrf.org)
LungCAN (Kimberly Lester – kimberly@lungcan.org)