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.

April 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.

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As of April 24, 2020, the Centers for Disease Control and Prevention (CDC) reports 895,766 cases of COVID-19 and 50,439 COVID-19-associated deaths. As the number of cases continue to rise, the importance of maintaining social distancing and following shelter in place/quarantine orders is central to flattening the COVID-19 curve.

In this week’s update, we address how different professional societies/organizations are addressing lung cancer screening and treatment during the COVID-19 pandemic. As described in the National Academy Press, the mission of the professional societies is primarily educational and informational. Their influence flows from their continuing and highly visible functions: to publish professional journals, to develop professional excellence, to raise public awareness, and to make awards. Through their work, they help to define and set standards for their professional fields and to promote high standards of quality through awards and other forms of recognition.

In this week’s update, we provide you with a brief summary of what different professional societies are saying about COVID-19 and lung cancer treatment. These consensus statements are a testament to the way the global oncology community is working together to ensure that lung cancer patients continue to get the best care possible. The following have been included in today’s update based on availability of information.

CHEST – American College of Chest Physicians
ASCO – American Society of Clinical Oncology
ESMO – European Society for Medical Oncology
ATS – American Thoracic Society
NCCN -National Comprehensive Cancer Network
ASTRO – American Society for Radiation Oncology
ESTRO – European Society for Radiotherapy & Oncology

 

Question 1: How are doctors managing lung cancer screening during COVID-19?

The recent consensus statement from CHEST states that it is appropriate to defer enrollment in lung cancer screening and modify the evaluation of lung nodules due to the added risks from potential exposure to SARS-CoV-2 and the need for resource reallocation.

This means that for individuals who have not yet initiated screening, they should wait to be screened.

In those individuals where nodules are detected through a low-dose CT (LDCT) scan, the consensus statement suggests follow-up and nodule management should depend on the size of the nodule, availability of local facilities, prevalence of COVID-19 in the region, and patient-specific factors (presence of other serious health issues such as diabetes and heart disease.

 

Question 2: What factors are organizations/societies taking into account when deciding how to treat lung cancer patients?

According to Schrag and colleagues, oncology care generally falls into four categories.

  1. Care that is not time sensitive, can be delivered remotely, or both.
    This includes survivorship and surveillance visits for patients who have completed cancer treatment (for example, a patient who has completed treatment and has no evidence of disease).
  2. Care that cannot be delivered remotely but for which treatment omission or delay has a marginal effect on quality or quantity of life.
    The big question here is: does the risk of COVID-19 exposure outweigh the benefit of the treatment? Examples that fall into this category include:
    • Delaying systemic chemotherapy or reducing the number of cycles of chemotherapy for patients with advanced non-small cell lung cancer
    • Delaying surgery by providing neoadjuvant chemotherapy
    • Reducing the number of radiation therapy visits
  1. Treatment delay will have a moderate but clinically important adverse influence on quality of life or survival.
    This includes using treatments that are less harsh than the original treatments, to minimize hospitalization or manage side effects during the time of COVID-19.
  1. Treatment that has the potential to cure and/or cannot safely be delayed. This includes treatment of small cell lung cancer.

It is important to note that recommendations should be adapted to reflect the status of the patient and available facilities.

 

Question 3: What are the consensus recommendations for lung cancer surgery?

ATS has proposed the use of a three-phase framework to decide how to proceed with lung surgery. It defines three phases of hospital status based on:

  • the prevalence of COVID-19 patients within the hospital
  • availability of hospital resources, and
  • the rate of change (in terms of increasing prevalence of infections and resource depletion)

Each phase has a compass statement that is meant to give additional direction on how to manage number of lung surgeries, based on perceived risk to patients and hospital staff.

Phase 1 Phase 2 Phase 3
Hospital resources intact (e.g. ICU beds, ventilators, clinicians, Personal Protective Equipment available for all doctors)

COVID-19 trajectory not in rapid escalation phase

Many COVID-19 patients

Resources limited (e.g. ICU beds, ventilators, clinicians, PPE),

COVID trajectory within hospital in rapidly escalating phase

Hospital resources are predominately routed to COVID-19 patients

Resources critically limited/exhausted

Compass statement: Surgery restricted to patients whose survivorship likely to be compromised by surgical delay of 3 months Compass statement: Surgery restricted to patients likely to have survivorship compromised if surgery not performed within next few days Compass statement: Surgery restricted to patients likely to have survivorship compromised if surgery not performed within next few hours

Specific treatment decisions should be made by the patient and their treating physician, keeping in mind the framework discussed in question 2.

 

Question 4: What are the consensus recommendations for the use of radiation for lung cancer treatment?

The ASTRO-ESTRO consensus statement follows a similar approach to the ATS statement and takes into account the local and regional scenario of the COVID-19 pandemic.

In a risk-mitigation pandemic scenario where radiotherapy resources remain available, efforts should be made not to compromise the prognosis of lung cancer patients and guideline-recommended radiation therapy should be practiced. Postponement or interruption of radiation therapy of COVID-19 positive patients should be considered to avoid exposure of cancer patients and staff to an increased risk of COVID-19 infection.

In a severe pandemic scenario characterized by reduced resources, if patients must be triaged, important factors included potential for cure, relative benefit of radiation, life expectancy, and performance status.

Specific treatment decisions should be made by the patient and their treating physician, keeping in mind the framework discussed in question 2.

 

Question 5: What are the consensus recommendations from medical oncology associations and professional societies?

The three professional societies/organizations (ASCO, ESMO and NCCN) are aligned in their recommendations for lung cancer patients. All societies note that the risk of COVID-19 must be balanced against the risk to the patient of lung cancer progression, which in most cases still represents the highest risk of mortality in lung cancer patients. Individual clinical judgment is necessary. The recommendations provided by these societies cannot provide absolutes for alternate strategies during the COVID-19 outbreak. Specific treatment decisions should be made by the patient and their treating physician, keeping in mind the framework discussed in question 2. It is important to note that most of these recommendations would not normally be considered standard of care or optimal but are reasonable under these unusual circumstances in which minimizing visits and potential exposure has become a priority.

NCCN further suggests that entry points to the health care system should feature screening of patients and providers (i.e., questionnaire, temperature-based screening, standard and rapid COVID-19 testing). If resources are sufficient, screening of visitors who can accompany patients is reasonable, although many institutions have visitation restrictions to facilitate social distancing.

 

Question 6: How do these changes in lung cancer care impact shared decision-making?

Shared decision-making is a process in which patients and doctors work together to make decisions and select tests, treatments, and care plans based on clinical evidence that balances risks and expected outcomes with what individual patient value. The consensus statements from all the professional societies urge doctors to have candid discussions with their patients and to take into account patient preferences and values when making decisions for screening and treatment.

 

Question 7: Should lung cancer treatment be modified if patients also have COVID-19?

 Physicians don’t have much data to help guide treatment decisions for lung cancer patients who also have COVID-19. To gather this data, the global lung cancer community has come together to develop the TERAVOLT registry. The registry is collecting information on patients with thoracic cancer infected with COVID-19 regardless of therapies administered. More than 100 physicians worldwide are participating, and the number is growing. Currently, patients cannot deposit their data into the registry themselves. If you have or had a confirmed case of COVID-19 and would like your data included in the registry, talk to your doctor about joining the TERAVOLT registry.

 

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.


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 (Jan Baranski, PhD jbaranski@lcrf.org)
LungCAN (Kimberly Lester kimberly@lungcan.org)

April 20, 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 April 18, 2020, the Centers for Disease Control and Prevention (CDC) reports 661,712 cases of COVID-19 and 33,049 COVID-19-associated deaths. A recent study conducted by researchers at Stanford University suggests that this number is an underrepresentation of the total number of infected individuals. We must urge caution with interpretation of this study, which is still undergoing peer-review. Some are interpreting the findings to mean we should accelerate loosening of social distancing policies across the country. However, researchers still do not know if the presence of antibodies confers protection or how long such immunity might last. Further, in the absence of any effective therapeutics or a vaccine, local flare-ups are still a risk, as has been witnessed in other countries. Social distancing is working and should be maintained for now.

In this week’s update, we address the following important topics:

Role of telehealth in the era of COVID-19

    1. What is telehealth?
    2. How is the use of telehealth changing during the COVID-19 pandemic?
    3. What are some of the barriers to broad uptake of telehealth during the current crisis?
    4. How do I know if I am eligible to obtain telehealth services?

Impact of COVID-19 on lung cancer clinical trials

    1. How is the FDA allowing the use of telehealth for lung cancer clinical trials?
    2. If a patient is receiving their drug through a pharmacy at the clinical trial site, can they now receive the drug through home delivery without having to change the protocol?
    3. If a patient is receiving a drug given through infusion, can they now receive the clinical trial treatment through home infusion?

 

ROLE OF TELEHEALTH IN THE ERA OF COVID-19

  1. What is telehealth?

 The terms “telehealth” and “telemedicine” are used interchangeably to describe using telecommunications technologies to deliver health care. It includes a variety of services that deliver health care, public health, and health education, and ranges from methods as simple as telephone calls and email to live video, mobile apps, remote patient monitoring and uploading scan images. The Center for Connected Health Policy (CCHP) provides an excellent overview of telehealth here.

  1. How is the use of telehealth changing during the COVID-19 pandemic?

 In light of the COVID-19 pandemic, federal and state policies are rapidly adapting to allow for greater utilization of telehealth services. The Centers for Medicare & Medicaid Services (CMS) have created some useful fact sheets highlighting various policy changes, including this one summarizing Medicare telemedicine services and this one addressing sweeping regulatory changes to meet patients’ needs during this time. Private health insurance companies are also modifying their policies to enable greater use of telehealth.

CCHP is maintaining an updated list of COVID-19 telehealth coverage policies.

  1. What are some of the barriers to broad uptake of telehealth during the current crisis?

 The challenge with adapting telehealth policies in real-time to address an unfolding and unprecedented public health crisis is that, in a pre-COVID-19 world, federal and state policies varied widely in how telehealth services were provided and covered.

Most of the current challenges relate to regulatory and reimbursement issues, including licensure requirements. Even as the popularity of telehealth among patients grows, private healthcare payers have been slow to embrace the technology. The Federation of State Medical Boards is maintaining an updated list of states currently waiving telehealth licensure requirements.

The “digital divide” is also a barrier to accessing telehealth. Patients who are elderly, in areas with poor Internet or cellular coverage, or economically disadvantaged, may not be able to access the technology necessary to telehealth.

  1. How do I know if I am eligible to obtain telehealth services? What can I do to ensure broader access?

 Again, laws vary by state regarding how telehealth is being implemented and what health insurance companies and providers can do. Review your health insurance plan benefits and policies frequently to learn how they may be changing. This CCHP list of COVID-19 state actions may also be helpful.

CCHP also monitors state and federal telehealth legislation to provide a clear overview of policy across the nation. As a citizen, you can monitor legislation that has been introduced in your state and testify to show your support or opposition. You can call your legislators to ensure your needs are being heard.

For a great overview and more in-depth discussion on all of these points on telehealth, please check out GO2 Foundation for Lung Cancer’s Rapid Response Living Room from April 14, 2020, featuring Dr. Joelle Fathi.

 

IMPACT OF COVID-19 ON LUNG CANCER CLINICAL TRIALS

The United States Food and Drug Administration(FDA) has issued guidance to clinical trial sponsors (pharmaceutical companies and government agencies), institutional review boards (IRBs), and researchers on how to adapt lung cancer clinical trials in the era of COVID-19. The FDA emphasizes that patients’ safety should be at the forefront of considerations at all times. Below, we answer three important questions for patients (and their caregivers).

  1. How is the FDA allowing the use of telehealth for lung cancer clinical trials?

The FDA allows for changes to be made to the clinical trial protocol without prior FDA review or approval if the change is intended to protect the life and well-being of the patient. Therefore, changes in protocol conduct necessary to immediately assure patient safety, such as use of telehealth for safety monitoring instead of on-site visits, can be immediately implemented once the new protocol has been approved by an IRB. The FDA can then be subsequently notified. It is important to note that the consult is just one part of patient safety monitoring. The patient’s clinical trial team and the clinical trial sponsor will also need to have a clear plan in place to ensure that patient safety is prioritized in case routine monitoring such as blood tests and heart function exams are unable to be conducted.

  1. If a patient is receiving their drug through a pharmacy at the clinical trial site, can they now receive the drug through home delivery?

 The FDA understands that there may be a risk of exposure to SARS-CoV-2 when a patient visits a clinical trial site. In case a patient is receiving their drug (such as a targeted therapy pill) through their clinical trial site pharmacy, the clinical trial sponsor now has the option of directly mailing the drug to the patient’s home as long as the following conditions are met:

    • The patient already takes the pill at home as part of the trial protocol
    • The shipment of the drug to the patient’s home does not affect the chemical nature of the drug
    • The sponsor keeps a clear track of number of pills shipped to the patient’s home and is able to share this information with the FDA when asked
  1. If a patient is receiving a drug given through infusion, can they now receive the clinical trial treatment through home infusion?

This is an extremely important question for the lung cancer community — where clinical trials often require an infusion of a chemotherapy, an immunotherapy, an angiogenesis inhibitor, or a combination of the above.

The FDA understands and appreciates that a patient may be exposed to SARS-CoV-2 when they travel to their routine clinical trial infusion center. Therefore, the FDA is open to alternative sites for administration (e.g., home nursing or alternative sites closer to a patient’s home where the infusion is given by trained medical personnel who are not part of the study team). The ultimate decision to allow this switch to home infusion or local infusion is based on the following criteria:

    • The shipment of the drug to the local infusion center or to the patient’s home does not affect the chemical nature of the drug
    • The sponsor keeps a clear track of the amount of shipped to the patient’s home and is able to share this information with the FDA when asked

Another option is delaying or discontinuing infusion for a period of time while the patient continues to be on the study. This decision needs to be made jointly by the clinical trial team and the patient.

Note: The ultimate decision on whether to allow a home infusion or local infusion is highly dependent on the drug being tested. Some infusions cannot be given at a local infusion center or through home infusion. Examples include drugs that require ability to manage potential infusion reactions with specific medication, or treatments such as gene therapy or cell therapy that require exacting handling procedures and patient monitoring.

LUNGevity Foundation recently conducted an Oncology Center of Excellence (OCE) listening session with FDA leadership and lung cancer patients. Stay tuned for the recorded webinar that can be accessed here.

 

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.
  2. If you cannot avoid air travel, check out “Dirtiest Places on Airplanes: How to Avoid Germs

 


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 (Jan Baranski, PhD jbaranski@lcrf.org)
LungCAN (Kimberly Lester kimberly@lungcan.org)

April 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.

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As of April 11, 2020, the Centers for Disease Control and Prevention (CDC) reports 492,416 cases of COVID-19 and 18,559 COVID-19-associated deaths. The United States now has the highest number of confirmed COVID-19 cases in the world.  These numbers may be an underestimation of the true burden of the disease due to lack of testing and a high proportion of asymptomatic yet infectious individuals.

We urge everyone to continue to social distance: it is working!

Washington and California quickly imposed state-wide social distancing through stringent shelter-in-place or Stay at Home policies once deaths occurred within their borders.  The graph below shows that COVID-19 deaths are still increasing in these two states, but not as fast as in other states. Deaths in New York State are now doubling every 3 days (when last week it was every 2 days), and in Washington State and some California counties deaths are doubling only every week.

The most up-to-date version of the graph below can be accessed from the New York Times website here.

 

In this week’s update, we answer the following important questions:

  1. What types of treatments are available for COVID-19?
  2. If I suspect I have COVID-19, what should I do?
  3. If I had COVID-19 and have now recovered, will I become immune to SARS-CoV-2?
  4. Can I find out if I was naturally infected with SARS-CoV-2, the virus that causes COVID-19, and have developed immunity?
  5. How can I tell if information I read about COVID-19 is reliable?

 

  1. What types of treatments or vaccines are available for COVID-19?

 If you or your loved one (caregiver) has a confirmed diagnosis of COVID-19, your/their healthcare provider will be the right person to decide what type of treatment is useful. Please do not treat COVID-19-related symptoms without consulting your healthcare provider. Do not try to procure or hoard medications such as hydroxychloroquine that are approved for use in other conditions, as this is creating a shortage of these medications for patients with conditions for which the drugs are already approved.

Currently, no specific treatment or vaccine is available for COVID-19. This continues to be an area of intense investigation. Some of the drugs described below may be available to COVID-19 through compassionate access. This does not mean a drug is approved for the treatment of COVID-19. It is important to keep in mind that properly controlled clinical trials take a long time to conduct.

Treatment: Various compounds such as remdesivir and hydroxychloroquine are being studied for the treatment of COVID-19.

Remdesivir is an anti-viral drug. It has been shown to be active against a broad group of viruses such as filoviruses (cause of Ebola) and coronaviruses (e.g., SARS-CoV and MERS-CoV). SARS-CoV is the cause of SARS and MERS-CoV is the cause of Middle East Respiratory Syndrome. These two viruses are related to SARS-CoV-2, the cause of COVID-19.  Remdesivir has shown to protect against infection and treat infection caused by these coronaviruses in pre-clinical models (experiments involving animal models of virus infection). A recent publication in the New England Journal of Medicine shows that remdesivir given to hospitalized COVID-19 patients helped improve symptoms. Though promising, it is important to note that this study included a small sample of patients. Randomized clinical studies with appropriate controls are necessary before remdesivir becomes approved for use with all COVID-19 patients.

Hydroxychloroquine is a drug used to treat malaria and auto-immune disorders such as rheumatoid arthritis. It is known by the name Plaquenil in the US. Currently, evidence suggesting the successful use of hydroxychloroquine in COVID-19 patients is limited, and mostly anecdotal. Clinical trials studying the effect of hydroxychloroquine in the treatment of COVID-19 are ongoing. Despite the President’s ongoing endorsement of hydroxychloroquine as an effective treatment for COVID-19, concerns about its cardiac toxicities are growing, especially for people with underlying cardiovascular disease. Recent guidance issued by leading heart disease organizations recommends caution when treating COVID-19 with the combination of hydroxychloroquine and the antibiotic azithromycin in certain patients.

Vaccines: Historically, vaccines against viruses have been very effective in eradication of common viral diseases such as smallpox and polio.  From an individual perspective, vaccination prevents or modifies the severity of a disease. From a public health perspective, a vaccine eliminates or eradicates a disease from the population (for example, smallpox). Since the SARS epidemic in 2003, several companies and institutions have already developed platforms for vaccine development against coronaviruses, which is a family of viruses that includes SARS-CoV-2, the causative agent of COVID-19. On January 23, 2020, the Coalition for Epidemic Preparedness Innovations (CEPI) was the first to announce funding of $12.5 million to develop vaccines against SARS-CoV-2 by three companies. Since then, both philanthropic and industry efforts have been mobilized for the development of a vaccine against SARS-CoV-2.  As of April 9, 2020, there are close to 80 vaccine development efforts. It is important to keep in mind that vaccine development is a lengthy process and best-case estimates suggest that it will take a minimum of 18 months to deliver an effective vaccine against SARS-CoV-2. Even once a candidate vaccine is identified, it must be manufactured at scale for a global population. To speed these efforts, the Gates Foundation has announced that it is supporting construction of factories to pursue development of seven vaccine candidates.

Other treatments: Recently, the Bill & Melinda Gates Foundation also announced a $125 million partnership with Wellcome and Mastercard to accelerate the development of new drugs to treat SARS-CoV-2 infection. To track treatments that are being investigated for COVID-19, please check out the Milken Institute COVID-19 treatment and vaccine tracker. Here, you will also find information on clinical trials testing potential COVID-19 drugs/vaccines.

  1. If I suspect I have COVID-19, what should I do?

If you (as a patient) or a loved one (a caregiver) exhibits the symptoms of COVID-19 (including but not limited to fever, dry cough, shortness of breath), immediately follow self-quarantine procedures.  Immediately contact your healthcare provider (could be your primary care physician) about whether you need to get tested. Your healthcare provider will be able to guide you on next steps. The CDC and the Association of Public Health Laboratories maintain a list of laboratories that are currently conducting COVID-19 tests.

Please remember that you may not have symptoms even if you are infected with SARS-CoV-2. Social distancing is the only way to avoid getting infected with the virus. As a caregiver, please take extra precautions when you need to leave your house or apartment.

 

  1. If I had COVID-19 and have now recovered, will I become immune to SARS-CoV-2?

 The answer is – we do not know. When an individual is infected with a pathogen, such as bacteria or a virus, typically the body mounts an immune response. This is true even in individuals who remain asymptomatic. The immediate immune response ensures that the pathogen is eliminated from the body, and immunological memory (the basis of vaccination) ensures that if the body encounters the pathogen in the future, the immune system is ready to fight it off.

In the case of SARS-CoV-2, based on experience with other coronaviruses such as SARS-CoV and MERS-CoV, we believe that development of immunity will be highly individual-specific. Some individuals may develop high amounts of antibodies against SARS-CoV-2 while others may not. Furthermore, it is not currently clear whether a one-time infection with SARS-CoV-2 confers lifetime immunity against the virus. Scientists are still evaluating what level of immunity is needed to confer protection against future infections with SARS-CoV-2.

 

  1. Can I find out if I was naturally infected with COVID-19 and have developed immunity?

The answer as of April 13, 2020 is – we do not know. In order to check if an individual has been infected with a pathogen, healthcare providers can conduct blood tests (also known as serological tests) to check for indicators of immunity. For example, if you received the MMR vaccine, the doctor can check if you have immunity against measles, mumps, and rubella by looking at antibody titers in your blood.

In the case of SARS-CoV-2, the goal is to develop such a blood test that will help identify:

  • Which individuals have been naturally infected with SARS-CoV-2 and have recovered from the infection (even those individuals who were asymptomatic)
  • Which individuals have developed immunity against SARS-CoV-2 after they received a vaccine when the vaccine becomes available

Currently, scientists are studying which antigens of the SARS-CoV-2 will be the most effective in generating immunity. Several groups are developing blood tests, and one test has been FDA approved (but is not yet publicly available). There is hope that such tests will become available within the next few months (and probably sooner in some places), and will be useful in guiding how quickly normal activities can resume.

 

  1. How can I tell if information I read about COVID-19 is reliable?

In the era of COVID-19 when information is evolving rapidly — with new information being available daily — it is important to depend on trusted and reputable sources of information. You will encounter several sources of information such as:

  • Print (newspapers such as New York Times which also have online versions)
  • Online-only platforms such as Slate and Buzzfeed
  • Journal article websites
  • Personal blogs and stories

It is incredibly important to verify sources of your information to ensure that we are not spreading false information which can not only cause unnecessary panic but can be downright harmful (such as misinformation regarding drugs). A good resource that provides guidelines to evaluate health information can be found here.

 

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.
  2. If you cannot avoid air travel, check out “Dirtiest Places on Airplanes: How to Avoid Germs


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 (Jan Baranski, PhD jbaranski@lcrf.org)
LungCAN (Kimberly Lester kimberly@lungcan.org)

On #COVID19, ventilators and triage

This Photo by Unknown Author is licensed under CC BY-SA-NC

In the age of COVID-19, patients may find themselves in a hospital or emergency department that does not have enough resources to give ICU beds or ventilators to all patients who need them. In an attempt to prepare for such a situation, some hospitals drafted “triage” policies that state who would be prioritized to receive a ventilator or ICU bed.

I want to share my perspective on triage as a both a science geek and a metastatic lung cancer patient in active treatment.

A not-yet-implemented triage policy from the Henry Ford Healthcare System in Michigan was shared online in late March, and caused an uproar in social media.  The metastatic cancer community learned that if resources were limited and that policy were in force, they would be denied a ventilator, along with those who had severe heart, lung, kidney or liver failure, or severe trauma or burns.  Over the next several days, other triage policies surfaced (some that included dementia or disability as a reason to deny care).  Articles about triage policy appeared in medical journalsopinion pieces, and general media.

Many of my fellow lung cancer patients are horrified by the impact such triage policies would have on their lives.  I too am worried about the possibility of not receiving treatment simply because I have metastatic lung cancer.

The lung cancer community has been battling treatment nihilism for years. It angers us—and rightly so—whenever we hear that someone did not receive the most effective treatment available simply because a doctor was unaware of changing statistics in lung cancer survival or the terrific response rate to targeted therapy or immune checkpoint inhibitors.

But this triage thing is not a matter of doctors being unaware of changes in lung cancer treatment, or not believing cancer patients deserve to live. This is an issue of resource shortages. Everyone deserves to live, but emotional pleas don’t give doctors a way to make a fair choice about who lives and who dies.

Reality check:  COVID-19 is redesigning hospital services out of necessity. Surgery theaters are being converted to ICUs. Hospital staffing is being reduced in an attempt to keep healthcare workers healthy and sane. Ventilators are in short supply.  When two patients need a ventilator-equipped ICU bed (whether they suffer from severe COVID-19 pneumonia or a heart attack), and only one bed or ventilator is available, someone will have to decide who gets the scarce resource. The patient who gets it will hopefully live. The patient who doesn’t will probably die. It’s a horrible Sophie’s Choice for healthcare providers who took the hippocratic oath.

This is not a human rights violation. It’s a medical ethics problem born of resource shortages. How should the medical world decide who lives and who dies?  Obviously, no one wants to hear that they are the one who will likely die.  But simply saying everyone has an equal right to life does not solve the resource problem.  We need a fair way to make a gut wrenching, impossible decision.

How can we make a fair decision? One possibility is to assess who is most likely to survive if they were given the respirator. The problem is, we don’t have much data to use in making this assessment. We have some data that cancer patients who get really sick with COVID-19 are less likely to survive, but only a few of those had lung cancer, so it’s not a good sample size on which to base a decision. We have some data that shows people who are 80+ years old are unlikely to survive COVID-19 once their disease has progressed to the point of needing a ventilator.  Thus one could say that when having to choose between a 20-year-old and an 80-year-old, all other things being equal, the younger patient has a better chance of survival and so gets the ventilator.  But what if the younger patient has metastatic pancreatic cancer and no cancer treatment is likely to work for them?  Then the choice isn’t so easy.

The US healthcare system—certainly most healthcare providers—have never faced these sorts of decisions before.  They need time to figure it out. Hospitals are attempting to create triage policies so that individual doctors are not continually faced with violating their Hippocratic Oath by deciding who lives and who dies. Our healthcare providers are already under tremendous pressure by long hours, patient overload, watching patients die alone without being able to offer a comforting touch, being repeatedly exposed to COVID-19 due to lack of personal protective equipment, and separation from their families to avoid infecting their loved ones.  They could use some guidelines.

In the March 28 Axiom Zoom webinar on “COVID-19 and the Impact on Thoracic Oncology” (recording available here), I asked the the assembled thoracic oncology experts what they tell their lung cancer patients (especially those with metastatic disease) who are scared that they will be denied treatment simply because of their lung cancer diagnosis. The doctors acknowledged that they too were concerned about this. One surgeon emphasized that doctors must continue advocating for their lung cancer patients to fight the historic nihilism faced by lung cancer patients. Another stated the importance of informing all critical care team members about the improved prognosis for lung cancer patients so that they wouldn’t be automatically left untreated. But no one had a solution that would solve the problem as a whole.

In the follow-up Axiom webinar on April 4 titled “COVID-19 and The Impact on Cancer Patients” (recording available soon), the doctors addressed the topic again. One doctor said she wrote a clinic note for each cancer patient, which the patient could download online and print to keep with them. She didn’t elaborate on the contents of the note, but presumably, the note listed the patient’s diagnosis, treatment and prognosis.

This raises another ethics issue.  What if that patient has a poor prognosis?  What if that patient doesn’t WANT to know their prognosis?  What if the patient is in a clinical trial and the doctor doesn’t know their prognosis?

While some lung cancer patients (such as myself) have had long runs with no evidence of disease on targeted therapy or immunotherapy, there are still many for whom prognosis is not so rosy: Patients who have extensive small cell lung cancer that has progressed after chemo. Patients who have oncogene-driven lung cancers and have blown through all their treatment options. Patients whose cancer is progressing rapidly despite immunotherapy. Patients, advocates, and advocacy organizations won’t have any credibility if we claim that all lung cancer patients have the same likelihood of surviving a severe case of COVID-19 as a healthy person.

Lung cancer patients are not the only group facing discrimination via triage.  This also affects people with disabilities, elders with dementia, children with heart issues, diabetics on insulin, and many others.  I don’t feel right saying lung cancer patients deserve a chance to live, but these other people don’t.  I support the statement published by the Disability Rights Education & Defense Fund (DREDF), The ARC of the United States, and many other disease and disability advocacy organizations (including the GO2 Foundation for Lung Cancer and LUNGevity Foundation) titled “Applying HHS’S Guidance For States and Health Care Providers on Avoiding Disability-Based Discrimination in Treatment Rationing.” This is the sort of reasoned ethics discussion needed to help the medical community develop guidance on this tough topic.

Speaking as a member of a special interest group (metastatic lung cancer patients), this is a time to search for solutions that are right for EVERYONE, not just for one special interest group. I don’t think my right to live outweighs anyone else’s right to live. Ethically, when resources are limited, decisions on who gets care should be based on who has the better chance of survival based on available facts.  This is a very sensitive issue that could have a significant impact on how patients AND the medical community view lung cancer advocacy organizations.

I prefer to seek solutions to problems that work for the community as a whole. News flash: we are ALL going to die someday–and none of us know when. Patients living with advanced and metastatic lung cancer have become experts on living well despite uncertainty. You can take some steps to make the uncertainty easier for you and those you love.

  1. Identify which events or activities make your life worth living. Is it walking in the woods every day? Visiting distant family? Watching your youngest child graduate from kindergarten? Having lunch with a good friend? Indulging a good book? Petting the cat? Write all of them down, and then make plans to help them happen.
  2. Have an honest discussion with your doctor about your health status, goals of care (see #1), and prognosis. Ask if you are immunocompromised, have scarred lungs or limited breathing capacity, or are at risk of complications if put on a ventilator. Be honest about your fears and your health challenges.
  3. Ask your doctor to provide you with a BRIEF letter (2-3 sentences at most) on letterhead, signed and dated, stating your diagnosis and prognosis. Carry a copy with you in case you must go to the hospital. (It must be brief, or no ED doc will read it).
  4. Think about how you would prefer the end of life to look. Talk with your family NOW about your preferences–if disaster strikes, you might not have another chance. If you need help getting started, visit The Conversation Project.
  5. Prepare legal estate documents, especially a Durable Power of Attorney and Advanced Healthcare Directive. Learn more from the National Institute on Aging.  There are ways to do this even if you are Sheltering at Home during the pandemic–check out “Estate Planning Goes Digital as Many Families Explore Options.”

We can’t control the COVID-19 pandemic, lung cancer, or medical resource shortages. However, we CAN control how we react to them.  Prepare. Stay home. Practice social distancing. Wash your hands. And stay as healthy as you can.

April 6, 2020 Update to the Joint Statement on #Coronavirus #COVID19 From #LungCancer Advocacy Groups

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

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The number of confirmed cases of COVID-19 continues to grow in the US. As of April 5, 2020, there are 312,089 confirmed cases of COVID-19 in the US. These numbers may be an underestimation of the true burden of the disease due to lack of testing and a high proportion of asymptomatic yet infectious individuals.

To get a real-time understanding of the cases in the US, you can access the map through The New York Times.

In this week’s update, we answer the following important questions:

  1. Is social distancing working?
  2. Do I continue to social distance?
  3. Do I leave my city to go to someplace safe — such as a rural area?
  4. Should I use homemade masks to protect myself?
  5. Can I travel within the United States?

 

  1. Is social distancing working?

 YES, IT IS!  Washington and California quickly imposed state-wide social distancing through stringent shelter-in-place or Stay at Home policies once deaths occurred within their borders.  The graph below shows that COVID-19 deaths are still increasing in these two states, but not as fast as in other states. Deaths in New York State are doubling every 2 days, but in Washington State deaths are doubling only every 7 days.

The most up-to-date version of the graph below can be accessed from the New York Times website here.

 The CDC continues to recommend social distancing to help decrease transmission of COVID-19 within the community.  Social distancing measures, such as cancelling public gatherings and avoiding crowds, can slow the spread of the virus and spread cases out over a longer period of time, which can help hospitals provide care while avoiding being overwhelmed by patients. Social distancing helps “flatten the curve” in the spread of an infectious disease.

This is especially critical because hospitals and health systems are working at full capacity. Flattening the curve ensures that systems are functional and people who require care the most can get the attention they need. The CDC recommends a distance of 6 feet or 2 meters as the minimum distance between individuals as part of COVID-19 mitigation strategy.

We encourage you to check out CDC’s COVID-19 community mitigation strategies here.

 

  1. Do I continue to social distance?

YES, social distancing is currently the only known public health measure that can protect us from SARS-CoV-2. Social distancing minimizes risk of exposure to the virus. It is important to keep in mind that social distancing is NOT the same as social isolation. We encourage you to keep in touch with all your family, friends, and loved ones through phone and video conversations. Just because we are social distancing doesn’t mean we have to be socially isolated.

Social distancing is different from self-quarantine. Self-quarantine should be practiced by people who have been exposed to SARS-CoV-2 and who are at risk for coming down with COVID-19. It involves:

  • Using standard hygiene such as frequently washing your hands and not touching your face
  • Not sharing things like towels and utensils with other people who share the same household
  • Staying at home and not having any visitors
  • Staying at least 6 feet away from other people in your household

You do not need to have symptoms of COVID-19 to self-quarantine. Caregivers who have travelled or are leaving their homes frequently to run errands may choose to self-quarantine especially in COVID-19 hot zones.

 

  1. Do I leave my city to go to someplace safe — such as a rural area?

NO! You should not be leaving your urban apartment or home and move to a rural area for the following reasons:

  • You do not know if you or a loved one has been infected with SARS-CoV-2. An infected individual might not have any symptoms but still can continue to infect others
  • You may not have access to your regular doctors and healthcare in a rural setting
  • Small rural areas are not equipped to handle an influx of people. They may not have adequate number of grocery and produce stores. More importantly, they may not have adequate medical care facilities should there be an emergency

Do not indulge in “disaster gentrification” for your own safety, the safety of your loved ones, and that of other community members. It is our duty to keep rural communities insulated from this disease as much as possible.

 

  1. Should I use homemade masks to protect myself?

YES! The CDC reports that a significant portion of individuals with COVID-19 lack symptoms (“asymptomatic”) and that even those who eventually develop symptoms (“pre-symptomatic”) can transmit the virus to others before showing symptoms.  This means that the virus can spread between people interacting in close proximity—for example, speaking, coughing, or sneezing—even if those people are not exhibiting symptoms.  In light of this new evidence, CDC recommends wearing cloth face coverings in public settings where other social distancing measures are difficult to maintain (e.g., grocery stores and pharmacies) especially in areas of significant community-based transmission.

Masks should be worn in conjunction with maintaining adequate social distancing. It is also important to keep in mind that these face masks are not surgical masks or N95 masks (to be used primarily by healthcare works as part of personal protective equipment).

Please watch this handy video to make your own homemade masks:

 

  1. Should I travel within the US?

Though the CDC does not typically make suggestions about domestic travel, they highly recommend avoiding all non-essential travel within the US. Several cities and states already have a shelter-in-place order. Points to keep in mind should you need to consider domestic travel (from the CDC):

  • Is COVID-19 present in your home community? If so, avoid traveling to avoid spreading the virus. You might be required to enter quarantine at your destination.
  • Is COVID-19 spreading in the area where I am travelling to?
  • Will you or your travel companion(s) be in close contact with others during your trip?
  • Are you or your travel companion(s) more likely to get severe illness if you get COVID-19?
  • Do you have a plan for taking time off from work in case you are told to stay home for 14 days for self-monitoring or if you get sick with COVID-19?
  • Do you live with someone who is older or has a serious, chronic medical condition (especially important for caregivers)?

 

Resources and websites:

  1. IASLC’s Guide to COVID-19 and Lung Cancer
    https://www.lungcancernews.org/iaslcs-guide-to-covid-19-and-lung-cancer/
  1. The National Cancer Institute has a special website for COVID-19 and emergency preparedness. COVID-19: What People with Cancer Should Know – https://www.cancer.gov/contact/emergency-preparedness/COVID-19
  2. We are following updates provided by the World Health Organization (WHO) and the US Centers for Disease Control and Prevention (CDC), which can be found here:
  1. Johns Hopkins COVID-19 Resource Center is one of the best places to get current updates. https://COVID-19.jhu.edu/
  2. Interactive map of US COVID-19 cases by statehttps://www.politico.com/interactives/2020/COVID-19-testing-by-state-chart-of-new-cases/
  3. The One-Two Punch: Cancer And COVID-19 (an important perspective for cancer patients) – https://www.forbes.com/sites/miriamknoll/2020/03/20/the-one-two-punch-cancer-and-COVID-19/#73744a4358e6
  4. You can find information specific to your state or city or town on your health department’s website.
  1. The American Medical Association is also maintaining a resource website for healthcare providers. You can find more information here:
    https://www.ama-assn.org/delivering-care/public-health/covid-19-2019-novel-COVID-19-resource-center-physicians
  2. If you cannot avoid air travel, check out this handy article on “Dirtiest Places on Airplanes: How to Avoid Germs
    https://time.com/4877041/dirtiest-places-on-airplanes/


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 (Jan Baranski, PhD jbaranski@lcrf.org)
LungCAN (Kimberly Lester kimberly@lungcan.org)

#COVID19 and #lungcancer #Surgery: A Q&A with @BrendonStilesMD

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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COVID-19 and surgery: How long can I wait? – April 2, 2020 Update

This update has been written in collaboration with Dr. Brendon Stiles. He is a thoracic surgeon at New York-Presbyterian Hospital and an Associate Professor of Cardiothoracic Surgery at Weill Cornell Medicine.

That question must be on the mind of many lung cancer patients as they consider treatment during the COVID-19 pandemic.  We are currently in the middle of an unprecedented crisis that has left hospitals short on resources and personnel.  That has led to shutting down “elective” surgical cases (surgeries that are not considered to be of medical emergency) at many hospitals, particularly in places such as New York City that are COVID-19 hotzones.

Are cancer cases truly “elective”?  And how long can patients and their surgeons actually wait? 

We don’t have a lot of data making a strong case for waiting or not waiting.  Some lung cancer-specific data suggests that the decision should be made based on how “quickly” the lung cancer grows. It takes on average 13.2 years for a lung adenocarcinoma to get to 1 cm in size and 14.4 years to get to 3 cm.  While other subtypes of lung cancer and other cancers may move much more quickly, this would obviously suggest that there is some time allowable prior to treatment for many cancers.  In that context, postponing surgery a few weeks or months may outweigh the risks of exposure to COVID-19. It is however unclear what is the appropriate waiting time for each individual patient.   Most studies have suggested that for early stage lung cancer, there is some risk of tumor progression that comes with delayed treatment.  That said, the risk appears to be small and not particularly predictable.  At this time for hospitals which still have resources, the American College of Surgery recommends surgical resection as soon as feasible for patients with solid or predominantly solid cancer over 2 cm in size, while it recommends deferring lung cancer resection even in these hospitals for tumors less than 2 cm or for those that are predominantly ground glass.

In the current situation, patients with early stage lung cancer should also consider alternatives to surgical resection.  This is particularly true in areas that are the most affected by COVID-19, where surgery may not be an option for an extended time period.  Outpatient centers likely have less exposures than inpatient where we know there are many COVID patients.  Also, patients spend less time in radiation treatment facilities.  Finally, radiation (at least early on) preserves lung function and doesn’t risk immediate decrease in lung capacity which may put patients at risk for more complications should they become infected. Good data is available on the efficacy of stereotactic ablative radiotherapy (SABR or SBRT) for the treatment of early stage lung cancer.  It is also worth noting that radiation, particularly stereotactic, doesn’t preclude surgery down the road.

It is not clear how data on treatment delay can be applied to patients with later stage disease.  Certainly patients with clear cut stage II or III lung cancer could be started on outpatient chemotherapy or chemoradiation with surgery pushed down the road several months if needed

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 (Jan Baranski, PhD jbaranski@lcrf.org)
LungCAN (Kimberly Lester kimberly@lungcan.org)