July 27, 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.

—————————

These updates began on March 3, 2020–a week before the World Health Organization declared COVID-19 a pandemic–when concerns arose in the lung cancer community regarding news out of China about a novel respiratory virus especially deadly to patients with lung cancer. Dr. Upal Basu Roy (who holds a Masters in Public Health), Dr. Amy Moore (whose PhD research was in virology), and Janet Freeman-Daily (a lung cancer research advocate) led lung cancer patient advocacy groups’ efforts to provide vetted, scientific information with a unified voice. Our goal is to provide a trusted source of information that each member of the community can use to assess their risk and make healthy choices for themselves and their families.

As of July 26, 2020, there have been over 16 million cases of COVID-19 worldwide. This week, the US surpassed 4 million cases– while our nation accounts for just over 4% of the world’s population, we make up 25% of virus cases. Another alarming statistic is the rapid pace with which we keep hitting stark new milestones – it took a mere 15 days for our cases to jump from 3 million to 4 million. These numbers reflect the exponential growth of viruses when appropriate public health measures are not heeded by enough members of the population.

 

SUMMARY OF AACR COVID-19 AND CANCER CONFERENCE

The American Association of Cancer Research held a special virtual conference titled “COVID-19 and Cancer” on July 20-22, 2020. It is increasingly apparent that cancer and COVID-19 present a unique and unfortunate convergence, with lung cancer patients being among the most at risk for severe symptoms from the disease. This conference grew out of the research community’s need to understand the intersection of these two diseases and reflects the rapid mobilization of cancer scientists to apply their talents to finding solutions to this unprecedented global crisis. As one scientist stated, it is our “moral obligation” to help.

The lung cancer advocacy groups had two “poster” presentations at this conference. The first one summarized the origins of our joint COVID-19 statements and their impact on the lung cancer community. The second one discussed patient concerns that have emerged through these updates and how the advocacy groups can develop programs to address them.

 

  1. What is the latest data on risk of COVID-19 for lung cancer patients?

Several real-world studies were presented at the conference that addressed overall risk for cancer patients as well as lung cancer in particular. Real-world studies rely on data collected from patients receiving treatment at their regular cancer centers or hospitals (i.e. patients not receiving treatment through a clinical trial). Currently, real-world data seems to be the richest source of data for learning about how SARS-CoV-2 (as a virus) and COVID-19 (as a disease) impacts cancer patients.

Registry data is entered by the patient’s treating physician after the patient has a confirmed diagnosis of COVID-19. Data from two big registries were presented at this conference.

  • The CCC19 registry is a multi-institutional, North American effort for all types of cancer. It reported that lung cancer patients were at higher risk of developing a more severe form of COVID-19. Other factors that predicted worse outcomes included older age, poor performance status, presence of co-morbidities, prior or current history of smoking, and a cancer that was progressing. The CCC-19 study showed an overall mortality of 26% for lung cancer patients with COVID-19, the highest of all the cancer types analyzed.
  • The TERAVOLT registry is a multi-institutional, international effort dedicated to thoracic (lung-related) cancers. TERAVOLT data on 400 COVID-19 patients showed overall mortality of 35.5% for patients who had lung cancer and a higher mortality of 41% for patients who have SCLC. This increases the challenges presented by the pandemic to rural communities in the Southeast, where SCLC burden is high. Poor performance status was associated with more severe COVID-19 symptoms for SCLC patients.  The patients in this study are primarily European, where the standard of cancer care may be different than in the US. It is important to keep in mind that SCLC is highly aggressive and has a higher symptom burden than NSCLC.

Single-institution data provide convenient samples to understand the natural history of a specific disease. At the conference, data from Memorial Sloan Kettering Cancer Center in New York City showed that prior immunotherapy for lung cancer did not impact outcomes of SARS-CoV-2 positive lung cancer patients. This data seems to contradict other registry-based efforts which have suggested that immunotherapy may predict worse outcomes. At the height of the pandemic in NYC, 20% of MSKCC’s lung cancer patients with COVID-19 died but many, including those with late-stage cancer, recovered. This study suggests patient-specific factors (such as type of treatment and patient characteristics) may determine overall risk and susceptibility to worse outcomes. It is important to keep in mind that standard of care and patient characteristics may be unique in a specific institution and therefore the results may not be generalizable.

One study presented at the conference that looked at electronic health records of patients in the US showed that an active cancer diagnosis coupled with co-morbidities such as diabetes and hypertension predicted worse outcomes for COVID-19.

Some common themes emerged for lung cancer patients:

  • Patient-specific factors such as older age, presence of lung comorbidities such as COPD, and a poor performance status (higher than 1) are associated with a risk of developing a more severe form of COVID-19.
  • Certain treatments such as chemotherapy (either alone or in combination) may increase the risk of developing a severe form of COVID-19 due to the immunosuppressive effects of chemotherapy.

We are still learning about how patient-specific factors and treatment-specific factors related to lung cancer can influence the severity of COVID-19. It is best to discuss how an individual patient’s situation will be impacted with the treating physician.

What is abundantly clear at this point is that multiple studies point to increased risk and worse outcomes in lung cancer patients with COVID-19. As the pandemic continues to spread throughout the US, it is imperative that lung cancer patients continue to take the threat seriously and take appropriate steps to protect themselves and those around them:

  • limit unnecessary travel (particularly to areas where COVID-19 is prevalent),
  • practice social distancing,
  • wash hands frequently (or use hand sanitizers when handwashing is unavailable), and
  • WEAR A MASK when out in public.

 

  1. How has the COVID-19 pandemic impacted oncologists and the cancer healthcare community?

The impact of the COVID-19 pandemic on the mental health of oncologists cannot be underestimated. Several studies suggest that oncologists will likely suffer from “burn-out” syndrome and post-traumatic stress disorder (PTSD). Two studies documenting the effect of the pandemic on mental health of oncology professionals were presented at the conference.

  • One study looked at 300 oncologists in Western Europe and the United States during the first phase of the pandemic. Two biggest fears reported by the oncologists (almost 75% of participants) were “fear that their patients would get sick” and “fear that their family members would get sick.” Several oncologists opted to live away from their families during their oncology service to protect their families (Symposium 7, Dr. Gabriella Pravettoni).
  • In the second study reported at the Keynote Symposium, which included 1570 oncologists from 102 countries, more than 75% of the oncologists reported that they feared contracting COVID-19 (July 21 Keynote, Dr. Solange Peters).

Both these studies highlight the importance of developing adequate mental health support services for healthcare professionals as the effects of the pandemic emerge.

As patients and advocates who work regularly and intimately with oncology healthcare professionals, we must not forget to express our gratitude to all members of the patient care team.

 

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)

 

July 13, 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.

—————————

As of July 1, 2020, more than 10 million people worldwide have been infected with SARS-CoV-2, the virus that causes COVID-19. In the United States alone, more than 3 million people have tested positive, as of July 10, 2020. Our knowledge about how the virus affects our immune systems and other organs is continuously evolving. Along with this knowledge, doctors are becoming better at managing patients with a confirmed diagnosis of COVID-19. However, it is important to keep in mind that the virus is still infectious.

In this update, we answer some key questions about the current need for public health measures, testing in light of the recent rise in COVID-19 cases, what the test results means, some recent press on “new strains” of SARS-CoV-2, and finally what this means for herd (community) immunity.

 

What public health measures can help stop the spread of the virus?

 Current data still suggest the virus is most commonly spread person-to-person, via droplets expelled by talking, coughing, or sneezing while in close face-to-face contact. The virus may also spread via aerosols (smaller droplets that remain suspended in air) but at this point, this has not been clearly established. People can have an active case of the virus and show no symptoms (asymptomatic spread). Until a vaccine is available, we need to take action to prevent transmission of SARS-CoV-2 through these strategies:

  • Personal hygiene (e.g., hand washing)
  • Testing people to identify cases of active infection
  • Using distance or physical barriers to reduce the spread of infectious droplets (e.g., staying home, social distancing, wearing masks, isolating people who are infected)
  • Contact tracing (e.g., notifying people when they have been in contact with someone who has active infection)
  • Government-level actions (e.g., governmental limits on sizes of gatherings or business capacity; school or workplace closures; stay-at-home orders)
  • Travel restrictions (e.g., border closure, enforced quarantine on visitors from infected areas) if required

 

Should I get tested for COVID-19? Which test is right for me? What do the test results mean?

If you or your loved one suspects that they have been exposed to SARS-CoV-2, and/or have developed the three most common COVID-19 symptoms (fever, cough, and shortness of breath), we recommend you get tested.

Currently, three tests are available for COVID-19. The choice of test depends on whether you suspect that you have an active (existing) infection, or you were infected in the past and want to confirm infection.

Stage of infection

Current infection Past Infection
Type of Test PCR test Antigen test Antibody test
How is a sample collected? A nasal or throat swab A nasal or throat swab A blood sample
What does a positive test result mean? You have an active SARS-CoV-2 infection. Even if you do not have symptoms, a positive result may suggest you can infect others. You have an active SARS-CoV-2 infection-. Even if you do not have symptoms, a positive result may suggest you can infect others. You were possibly exposed to SARS-CoV-2 in the past, even if you did not have major symptoms.
HOWEVER, this does NOT necessarily mean you have immunity to the virus (we are still learning how long immunity might last).
What does a negative test result mean? You might not be currently infected with SARS-CoV-2.
HOWEVER, this does NOT necessarily mean you don’t have a current infection — especially if you display symptoms. Your doctor will take into account the entire clinical picture and not just test results.
You might not be currently infected with SARS-CoV-2.
HOWEVER, this does NOT necessarily mean you don’t have a current infection — especially if you display symptoms. Your doctor will take into account the entire clinical picture and not just test results.
You might not have been exposed to SARS-CoV-2.
HOWEVER, this does NOT necessarily mean you were not exposed in the past. It is becoming increasingly clear that antibodies against SARS-CoV-2 do not last for a very long time. Therefore, timing of test matters.

More testing will help us to identify more people who have an active case of COVID-19 and may be able to spread the disease, whether or not they have active symptoms. An accurate count of active cases tells us where the virus is currently spreading and hopefully helps us to implement prevention measures in time to limit spread of the disease in that area.

 

Has the SAR-CoV-2 virus mutated? Is this new mutation more infectious? What does this mean for prevention, vaccines, and treatment?

A preliminary manuscript (which has not yet undergone peer review) describes the emergence of a new mutation seen in a specific gene of the SARS-CoV-2 virus. This mutation, which was first discovered in Europe, is called D614G. It causes an increase in the number of spike proteins in the virus. Since the spike protein is how the virus attaches to human cells, the authors concluded that this mutation makes the virus more infectious. However, it does not appear to make the resulting disease more severe or deadly.  Currently, the real-world implications of this mutation and its impact on the development of vaccines and treatments are still unclear.

 

Are blood tests detecting coronavirus antibodies more frequently? 

Many countries are using blood tests to look for SARS-CoV-2 antibodies in their populations. Testing of blood serum is called serology. The percentage of individuals in a population that have these antibodies in their blood serum is called seroprevalence. As COVID-19 spreads across the globe, different areas will have different levels of seroprevalence.

The CDC is now conducting large-scale geographic seroprevalence surveys at a number of sites across the country. Initial results from the first six sites showed rates of people who tested positive for SARS-CoV-2 antibodies varied from about 1% (in WA state) to about 7% (in greater NYC area).

Several global seroprevalence studies have been published recently. In Spain, which was hit hard by COVID-19 in the spring of 2020, approximately 5% of people in the 36,000 households tested had antibodies against SARS-CoV-2 (they are “seropositive”—their serum tested positive for antibodies). The seropositive rate is closer to 10% near Madrid but only 3% along the coast. Given that 95% of Spaniards do not have antibodies (seronegative), the authors conclude that it is important to maintain the public health measures described above.

A second study from Brazil also found regional variability in seroprevalence, with an overall seropositive rate of 1.4%. However, surprisingly, some cities along the Amazon had some of the highest rates reported so far, approaching 25%. This finding further counters the argument that SARS-CoV-2 is susceptible to heat, since Brazil maintains a hot, tropical climate.

 

What about herd immunity?

Herd immunity (or community immunity) occurs when a high percentage of the community is immune to a disease through vaccination and/or prior illness. We currently face several challenges to achieving herd immunity. First, seropositivity rates remain significantly below the ~70% required to achieve herd immunity, even in hotspot areas such as NYC. Second, a growing number of reports suggest that antibody levels fall off significantly as early as 8 weeks after infection (though other features of the immune system may provide some protection).

Some have suggested that public health efforts to reduce transmission are only delaying the acquisition of herd immunity. Sweden has been held up as a model for keeping a country open to develop herd immunity.  However, Sweden serves more as a cautionary tale— it experienced much higher death rates than its Scandinavian neighbors yet was not spared the economic impact of the pandemic.  Various models have suggested that efforts to achieve herd immunity by natural infection (ie, letting the virus run its course without vaccines) would result in over 30 million deaths globally

Letting the virus run its course comes at extraordinary cost in terms of human lives. Further, given the low rates of seropositivity among areas hard-hit by the virus and the rapidly declining antibody levels in individuals, it seems unlikely that we will achieve herd immunity WITHOUT a vaccine.

How risky is returning to “normal” activities?

 These updates are intended to give you the latest evidence on what we know and to provide a framework for you to make your own decisions as we all learn how to navigate this new “normal.” In that spirit, we share this recent graphic that helps assess the relative risk of various daily activities:

 

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)

 

Think your Internet passwords are well-managed? Think again!

A malicious hacker recently took control of the ROS1cancer.com website (which I help to manage). WordPress suspects the hacker accessed the site by guessing a password of an authorized author on the site.

Over the past two days, WordPress worked with me to restore most of our content. During the process, the site automatically emailed a LOT of old blog posts to our subscribers (I apologize for all the emails you may have received.) Dozens of blog posts about living with ROS1 cancer that had been shared by patients around the world were corrupted when the hacker deleted the site’s list of authors and editors. WordPress is still trying to help me recover those posts without having to reconstruct every single one. I also had to request a new credit card number, since the hacker could see my card data that was used to pay the annual upgrade fees (more time lost updating my card info for autopays). At least the hacker hadn’t used my credit card yet.

It’s a cautionary tale that reminds us to practice good password management, especially on sites that contain vital information (like banking or personal info) that could cause significant problems if it were compromised.  EVERYONE should:

  • Use STRONG passwords (more info below)
  • Create a unique password for each site
  • Change passwords regularly
  • Avoid reusing passwords

Alas, hackers use sophisticated tools to help them guess passwords. It is no longer sufficient to generate an eight-character password with one uppercase letter, one lowercase letter, and one number. But we all use a lot of passwords–I use over 400!–and generating a unique, strong password for each of them can be a real pain. What to do?

Use a password manager!

Password managers are software products that help you generate and store complex passwords, eliminate duplicate passwords, update your passwords regularly, and access your passwords on different devices and browsers. They will also allow you to autofill your password when visiting a site, if you wish.  The best part is that you only have to remember ONE password to access ANY of your passwords.

I have used a password manager for years on all the PCs in our household, as well as on my tablet and phone. I love that I only have to change a password in the password manager software on ONE device to make the new password available on ALL devices. True, the apps can be glitchy at times, but I’ve seen a big improvement in features and performance in the past few years. For me, it’s been far easier and more accurate than maintaining all my passwords in a written notebook.  I’ve never had one of my passwords compromised while using a password manager, although I know it could still happen–hacker tech is evolving rapidly.

Each password manager has a different combination of features and strengths. Which one is right for you depends on how you use your devices ( family? business? high-tech projects?) and how often you’ll use it on which platforms (Windows PC, Mac desktop, iPad, Chromebook, iPhone, Android, etc). Comparisons and rankings of products are published every year by reliable and impartial sources like PC Magazine, CNET, Wired Magazine, WireCutter, and Consumers Reports.

No one can guarantee a password can’t be hacked, but you can at least make your passwords harder for hackers to guess.  When did you last update YOUR passwords?

June 29, 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.

—————————

As of June 28, 2020, the United States has reported more than 2.5 million cases of COVID-19 and 125,484 deaths. We are now seeing a rapid escalation in cases in states across the US. Some would argue that these increases simply reflect more testing but that only tells part of the story. Perhaps a more meaningful metric is the rate of new hospitalizations and ICU bed capacity. Seven states (AZ, AR, CA, NC, SC, TN, TX) are now reporting their highest hospitalization rates since the pandemic started. In hard-hit Houston, TX, ICU bed occupancy stands at 97% at Texas Medical Center. Though only a quarter of that number is currently due to COVID-19 cases, there is once again growing concern about the ability of our hospitals to handle the rapidly increasing number of patients, especially once a second wave of infections strikes.

There are also some changing demographics with this most recent uptick in cases, including growing numbers among young adults ages 20-30. While that may seem to be good news at first, since younger people for the most part have a less severe form of the disease than the elderly or those with underlying comorbidities, this also creates a potential reservoir of the virus that could rapidly extend to more vulnerable populations in the surrounding community.

In the absence of a vaccine or an effective treatment, our best modes of protection remain continued social distancing, frequent handwashing, and wearing masks or facial coverings. This paper from The Lancet supports the use of face masks in reducing transmission in both the healthcare and community setting. The lack of a spike in cases related to recent national protests also suggests that masks played a large role in preventing transmission of the virus. As cases continue to rise across the country, more and more states are beginning to mandate the use of masks or facial coverings, as shown below:  

 

Additional studies on outcomes, antibody response, and radiological findings: 

  1. In our June 15, 2020 update, we presented findings from the TERAVOLT study, which has reported an increased mortality rate (33%) in lung cancer patients with COVID-19. Some have questioned this study’s findings and how translatable they are to the situation here in the US. New data from Memorial Sloan Kettering Cancer Center (MSKCC) in NYC were reported for a cohort of 102 patients with both lung cancer and COVID-19. Of these patients, 62% were hospitalized and 25% died. Of the patients who required ICU level care (21%), 72% died. However, COVID-19 severity appeared to correlate more with patient-specific factors rather than tumor-specific characteristics or treatments. Thus, while this is a small study, it does reinforce the vulnerability of lung cancer patients to COVID-19. Another study from Memorial Sloan Kettering Cancer Center looked at a cohort of 423 cancer patients with COVID-19 (8% of which were lung cancer patients) and found that 20% developed severe respiratory illness (including 9% who required mechanical ventilation) and 12% died within 30 days. In addition, the authors found that administration of immunotherapy was associated with a higher risk of complications. Despite small sample size of patients from single institutions and from different countries, all these studies reinforce two points: cancer patients may be at a higher risk of developing complications from COVID-19 and various patient- (such as lung damage from radiation therapy) and treatment-specific (immunosuppressive treatments such as chemotherapy) factors determine the extent of severity.
  1. New research out of China suggests that the antibody response (a measure of immunity) to SARS-CoV-2 infection may not last as long as for other respiratory viruses, particularly among asymptomatic patients. The study, published in Nature Medicine, suggests that antibody levels fall off by over by 70% in both asymptomatic and symptomatic patients by 8 weeks following infection. Though the sample size is small, if true, these results have important implications for establishing “herd immunity” (also sometimes referred to as community immunity) through natural infection as well as vaccination efforts.
  1. Additionally, the paper above described radiological imaging findings in the lungs of asymptomatic patients, including ground-glass opacities as shown below. Coupled with prior reports of extreme lung damage in some patients (including a healthy 20 year old woman who required a double-lung transplant), these data, though from a small cohort of patients, affirm that there is still much we do not know yet about COVID-19’s impacts and if infection has a lasting impact on lung function in patients who recover. In the case of lung cancer, the overlap between radiological findings in COVID-19 and lung cancer complicates diagnosis, treatment and management of patients.

In light of these studies and others which suggest an increased risk for patients with lung cancer, researchers from the fields of lung cancer, virology, immunology and epidemiology are rapidly mobilizing to create large-scale programs to address questions such as:

  • What is the relative risk of COVID-19 for lung cancer patients?
  • How many lung cancer patients have been infected with SARS-CoV-2 and have antibodies against the virus?
  • What are the features of the immune response to SARS-CoV-2?
  • What are the long-term implications for lung cancer patients who recover from COVID-19?

In summary, we continue to advise our community to maintain public health precautions as they go about their daily activities such as household chores and groceries. In a recent New York Times article, former director of CDC (under the Obama administration), Dr. Tom Frieden says, “Start with the three Ws: wear a mask, wash your hands, and watch your distance.” Now more than three months into the pandemic, hospitals and clinics have excellent procedures in place to ensure that patients are kept safe during clinic appointments. We strongly advise lung cancer patients to check with their doctors on what these precautions are, in case they are concerned about getting exposed to SARS-CoV-2 while seeking healthcare. It is not advisable to miss clinic appointments without consulting your healthcare team.

 

AACR Virtual Conferences

Lung cancer patient advocates attended AACR’s Virtual Annual Meeting II on June 22-24. As expected, many presentations focused on the intersection of COVID-19 and cancer as well as our current national dialog on racial issues. Dr. Lisa Newman presented work on the double hit minority cancer patients are facing as a result of the ongoing pandemic. Dr. Ned Sharpless, Director of the National Cancer Institute (NCI), reported data predicting an additional 10K cancer deaths over the next decade as a result of missed screenings, delays in diagnosis and reductions in cancer care. Though these models were for breast and colorectal cancer, there is equal concern about the potential impacts on lung cancer. The lung cancer advocacy groups must continue to push forward policies that protect minority communities and ensure access to continued screening and care during the current crisis.

Thank you to everyone who participated in our recent survey to collect data on the value of these updates and patient concerns that have emerged as a result. We are pleased to report that we have had two abstracts accepted for presentation at the upcoming AACR Virtual Meeting: COVID-19 and Cancer being held July 22-24. Our community will be well-represented as we learn even more about the intersection of these two diseases and the implications for lung cancer in particular.

 

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
  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)

 

#Cancer patient vs unmasked worker in the era of #COVID19

This morning (Saturday) I had to ship scan CDs overnight from Washington state to my cancer doc in Colorado for my virtual appointment on Tuesday. Don’t fret, it’s routine follow-up–I’m not attending in person because I do not want to fly during a pandemic.

When I entered the UPS store, neither employee behind the counter was wearing a mask. Masks are required in Washington State as of yesterday, due to increasing cases of COVID-19.

When I politley asked the clerk serving me to put on a mask, he emphatically stated, “No, I’m not going to do it.” And stared at me.

Wow.

I needed to send the package ASAP, so I proceeded anyway.

I told the clerk I was sending medical records to my cancer doctor in another state because I don’t feel safe flying during this pandemic. I said needed them to arrive on Monday for my virtual medical appointment on Tuesday. He processed my package efficiently, but told me he couldn’t guarantee on time delivery due to COVID-19. Fingers crossed that it arrives on time.

I debated whether to say anything more about the mask. Despite being a somewhat outspoken patient advocate, I usually won’t make waves over customer service snafus that cost me a minimal amount of money–I have other ways to spend my time that will make more of a difference in the world. In this case, however, I decided the possibility of helping someone come to realize how masks help prevent the spread of COVID-19 was worth the effort.

When our business was done, I thanked the clerk, and (to acknowledge his viewpoint) said I understood he had a right not to wear a mask, that it can be inconvenient or uncomfortable. I then said if he wore a mask, he would help protect people like me, who are in the high-risk group for severe COVID-19. He looked at me and said simply OK. Then he called for the next customer.

I thought that’s all one can do in real time.

I posted about this incident on Facebook, and learned a number of my friends (many of them also in the high-risk group for COVID-19 due to age, health conditions, or both) had encountered hostility from unmasked workers in places of business. The suggestions my friends offered got me thinking about additional actions to address the issue of the unmasked during a pandemic.

I believe the science and data shows wearing a mask DOES help protect others and reduce the spread of the virus. I want more people to accept that they should wear a mask, even though it may be inconvenient or uncomfortable.  Pressure from employers may change minds when compassion can’t.

However, I think confronting and/or intimidating the unmasked is not particularly safe–some people feel quite strongly about this topic, and will aggressively defend their “right” not to wear one. Besides potential verbal unpleasantness and bodily harm, confrontation may also generate shouting, which will only spread virus droplets further. If the individual does not respond to a respectful request, I think leaving the establishment is the safer route.

But I can continue to press after I get home. UPS will be hearing from me. Which leads me to the approach I’ve decided to take.

RESOLVED:
When being served during the COVID-19 pandemic by an unmasked (or improperly masked) person at a place of business, I will do the following:

  1. Calmly tell the person I would appreciate them wearing a mask to protect me (a person at high risk of severe COVID-19). If they are wearing a mask but it’s not properly positioned to cover both the mouth and nose, I will ask them to position the mask properly. If they don’t comply, I won’t press further.
  2. After I’ve left the establishment, I will contact the store’s manager and remind them if they want customers to come in, they must respect customer requests to be protected from infection.  If applicable government regulations require wearing a mask, I will remind the manager of this.
  3. If the store is a franchise, I’ll repeat #2 with corporate headquarters via phone, email and/or Twitter (many businesses scan Twitter to catch posts that could generate bad public relations).
  4. If applicable government regulations require wearing masks, I will contact the appropriate health department to report the health violation.

Applying pressure through employers increases the chances that the unmasked will start wearing masks in public. I encourage you to participate in this!

Please share in the comments what approach worked for you.  Please remember to keep yourself safe — avoid escalation!

Thanks to everyone who responded to my Facebook post on this subject for their great suggestions!

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 15, 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.

—————————

As of June 12, 2020, the United States has reported more than 2 million cases of COVID-19 and 113,914 have died from this disease. States are in different phases of reopening and shelter-in-place restrictions and lockdown have been eased in almost every state in the USA. With restrictions being lifted despite the upsurge in new cases, a big question remains.

Is it safe to return to routine activities? The short answer to this question is NO – we are not yet ready to return to routine activities.

In this week’s update, we provide evidence on why the lung cancer community needs to be vigilant about the risk of exposure to SARS-CoV-2, the virus that causes COVID-19. We also describe the impact of easing shelter-in-place restrictions in different states in the US and conclude by providing expert guidance from epidemiologists on what to expect over the next year.

  1. Lung cancer patients are at higher risk of developing complications from COVID-19: The Thoracic cancERs international coVid 19 cOLlaboraTion (TERAVOLT) registry study is specifically tracking outcomes for lung cancer patients infected with COVID-19. Recently published data from this study suggests that stage IV non-small cell lung cancer (NSCLC) patients are at higher risk of complications and mortality if they get infected with SARS-CoV-2. Of the patients included in the study, 33% succumbed to complications from COVID-19. Though the data generated for this study is primarily from European countries, it is highly probable the findings will hold true in other high-income countries such as the United States. Though the study does not provide information on the outcomes of small cell lung cancer (SCLC) patients, we anticipate that the findings will hold true for SCLC as well, given the high symptom burden of SCLC. Also, the TERAVOLT study has identified smoking history as an important predictor of developing complications from COVID-19. This suggests that SCLC patients may be at higher risk of a severe form of COVID-19, given the association of SCLC with active tobacco exposure. It is important to keep in mind that the CDC considers patients with lung co-morbidities (such as lung cancer) to be at a higher risk of developing complications from COVID-19.
  1. Easing shelter-in-place restrictions has led to an escalation in new COVID-19 cases in the United States: It is now proven that public health measures such as home isolation, business closures, and other large-scale social distancing measures have had large and measurable health benefits in containing the spread of COVID-19 and “flattening the curve”, as described by a recent research study in the journal Nature. Therefore, before lifting or removing these restrictions, there needs to be careful deliberation taking into account the local case load of COVID-19 and availability of critical hospital resources, should there be a spike in cases when restrictions are lifted. In order to assist states in reopening, the CDC has suggested a phased-approach to easing shelter-in-place restrictions. However, it is becoming increasingly apparent that we will need to monitor reopening with caution and continue to maintain public health precautions.
    • The state of Florida reported a spike in COVID-19 cases since the state entered phase 2 reopening on June 5th. The 64 counties that moved into the second phase of reopening saw a near 42% increase in new cases the week before that could not be explained by increased testing alone.
    • The state of Arizona has seen a huge spike in the number of COVID-19 cases since the state eased restrictions at the end of May. Arizona’s Department of Health Services has reported that the state has already reached 80% of its ICU bed capacity.

If you are curious to see how your state is performing in light of the recent lifting of shelter-in-place restrictions, please check out this article.

  1. We should continue to maintain public health measures to minimize exposure to SARS-CoV-2: Easing shelter-in-place restrictions does not mean we should stop maintaining public health precautions. We highly recommend that everyone:
    • Wear masks in public. A recent publication in the Proceedings of the National Academy of Sciences shows wearing masks is protective, given that transmission of the virus through air is one of the primary means of infection.
    • Continue to maintain six feet distance from others in public
    • Continue to practice social distancing
    • Self-quarantine in case you suspect you may have been exposed to the virus
    • Wash your hands regularly with soap and water
    • Avoid touching your face
    • Avoid large gatherings of people
    • Minimize all non-essential travel

As a lung cancer patient or caregiver, if you have any questions on how to maintain public health measures as you run errands and go to work, please check out the CDC resources here. We are also learning about the long-term effects of an infection. Impact of COVID-19 on the body can last for several months. In some extreme cases, damage to the lungs is severe enough to require a double-lung transplant. We therefore firmly believe that it’s better to be safe than sorry!

  1. Epidemiologists suggest that the timeline for resuming different activities will be determined by the availability of a vaccine against SARS-CoV-2: In a recent article in the New York Times, 511 epidemiologists were asked to rate how soon they would resume different activities. Below are the results of this opinion Though this data is not meant to serve as guidelines for the general public, it gives us a picture of where expert opinion lies with regard to when to resume normal activities.

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
  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)

 

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.

What Mt. St Helens Taught Me About Life After a Disaster

 

Forty years ago today, Mt. St Helens exploded.  I heard and felt the blast at my home 150 miles away in Tacoma. I could see the 15-mile-high cloud of ash from my front yard. I saw the lahar in real time on the evening news as a house rammed into a bridge over the I-5 freeway. I spoke to a friend in Pullman, Washington, as her day turned to night at Washington State University, just days before she graduated.

The true impact of the eruption and the losses were discovered in the following weeks. A vulcanologist tending instruments near the crater had died shortly after warning, “Vancouver, Vancouver, this is it.” Half-buried vehicles were found on the mountainside.  Forests had been flattened, with sturdy fir trees snapped off like toothpicks six feet above the ground. Spirit Lake on the side of the mountain, as well as Spirit Lake Lodge and its caretaker 80-year-old Harry Truman, had vanished. A total of 57 people died. The Toutle River, which flows from glaciers on the mountain, was clogged with mud and logs all the way to the Columbia River, obstructing boats and barges. The I-5 between Seattle and Portland was closed for weeks for cleanup and safety inspections. The entire area looked more barren than a moonscape. The devastation was unimaginable.

Yet, even a few years later, life returned to the mountain. Flowers bloomed.  Animals roamed through the ash. A new Spirit Lake began to form, and frogs that had been buried alive under scalding ash re-emerged, alive and kicking. Communities that had been desolated by the eruption and its aftermath came together, supported each other, and received assistance from neighbors outside the blast zone.

That was my first major disaster. It taught me that life goes on, nature finds a way, and silver linings can be found. I have some beautiful pieces of art created from Mt St Helens ash–they are unique reminders that the world does not end because major change occurs. The poster above hangs on my wall to commemorate.

Since then, I have coped with various disasters–parents stricken by dementia, a metastatic lung cancer diagnosis, and now COVID-19. Each of these rocked my world. But life goes on, and even in disaster, beauty can be found. We must be willing to adapt, to care for one another, to find a way.

When life kicks your ash, make beauty.

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.