March 23, 2020 Update to the Joint Statement on #Coronavirus #COVID19 From #LungCancer Advocacy Groups

The post below is shared with permission.

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From Lung Cancer Advocacy Groups

As cases of the virus surge in countries around the world, with Italy being particularly hard hit, many nations are taking extreme steps to mitigate the outbreak, including whole country lockdowns. Here in the United States, the President declared a national emergency on March 13, 2020. Several states have declared shelter-in-place to minimize non-essential activities and mitigate transmission. President Trump has declared California, New York State, and Washington State to be major disaster areas.

In this week’s update, we discuss the following topics related to COVID-19:

 

Origin of SARS-CoV-2

SARS-CoV-2 is the seventh coronavirus known to infect humans. SARS-CoV, MERS-CoV, and SARS-CoV-2 can cause severe disease, whereas HKU1, NL63, OC43 and 229E are associated with mild symptoms. There has been a lot of speculation on the origin of SARS-CoV-2. Scientists have now sequenced the genetic material of the virus isolated from different patients. These sequencing results clearly establish that SARS-CoV-2 is not a genetically engineered virus, meaning it is not manmade.1

The researchers provide two scenarios for the origin of SARS-CoV-2. In one scenario, the virus evolved to its current pathogenic (disease-causing) state through natural selection in a non-human host and then jumped to humans. This is how previous coronavirus outbreaks have emerged, with humans contracting the virus after direct exposure to civets (SARS) and camels (MERS). The researchers proposed bats as the most likely reservoir for SARS-CoV-2 as it is very similar to a bat coronavirus. In the other proposed scenario, a non-pathogenic version of the virus jumped from an animal host into humans and then evolved to its current pathogenic state within the human population. For instance, some coronaviruses from pangolins, armadillo-like mammals found in Asia and Africa, have similarities to SARS-CoV-2. A coronavirus from a pangolin could possibly have been transmitted to a human, either directly or through an intermediary host such as civets or ferrets.

 

Which age groups have severe responses to COVID-19?

Initial data on COVID-19 suggested that when stratified by age, the elderly were the most likely to develop a more severe form of COVID-19. Recent data released by the CDC demonstrated that this is not the case anymore.  As shown in the figure below, almost all age groups are susceptible to a serious form of COVID-19 that requires hospitalization.2

This is especially important to keep in mind given that younger people have been more resistant to social distancing.

 

How long does SARS-CoV-2 survive outside the body?

The researchers were able to detect viable viral particles for at least 72 hours on the four surfaces studied. This suggests that transmission of SARS-Cov-2 is possible through aerosols and fomites (solid objects and surfaces that are able to carry pathogens and transmit infections).

We recommend that after you bring articles into your home, you do the following:

  • Wash your hands after carrying delivered items into your home.
  • After accepting a package that’s in a cardboard container, put it aside or in the garage and let it sit for a day or two before opening (if possible).
  • After opening a package, wipe down all articles that have solid surfaces with chlorine wipes or disinfect with an alcohol-based solution.
  • At this time, there is no guidance on how to disinfect edible items such as fruits and vegetables.
  • Follow cleaning and disinfecting procedures listed on the gov website

 

Community transmission of SARS-CoV-2 by asymptomatic individuals

Data from initial cases of COVID-19 suggested that most transmissions were occurring through individuals who showed signs and symptoms of COVID-19. This is however not the case. It is now estimated that as many as 31% of new COVID-19 infections are being caused as a result of transmission through asymptomatic individuals – those who have been infected with SARS-CoV-2 but don’t shown signs and symptoms of the disease.4 This is an especially important aspect of SARS-CoV-2 transmission and reinforces why we need to practice stringent social distancing to flatten the curve.

 

COVID-19 patients may present with non-respiratory symptoms even before they have respiratory symptoms

Individuals infected with SARS-CoV-2 may present with gastrointestinal symptoms such as anorexia (83.8%), diarrhea (29.3%), vomiting (0.8%), and abdominal pain (0.4%).5 These gastrointestinal symptoms may show up even before respiratory symptoms of COVID-19. Furthermore, a small sample of patients presented with only gastrointestinal symptoms. If you have unexplained gastrointestinal issues, we suggest that you talk to your doctor promptly.  Also, conjunctivitis may be present in a small subset of patients as well. 6

 

Prepare your legal documents

Given the uncertainty over availability of medical care during the COVID-19 emergency, we suggest everyone review their legal documents and ensure they have a current Durable Power of Attorney and Advance Directive. This virus can progress very rapidly and seriously interfere with breathing, which means you cannot be certain that you will be able to make your wishes known verbally if you get severely ill. Discuss your wishes with your family and ensure everyone knows where to find these important documents.

If you haven’t completed these legal documents, some estate planning attorneys may be willing to help prepare and witness them via video conferencing so that you do not have to leave your home.

If you are not sure how to get started, please review the resources available at https://theconversationproject.org/

 

Can I take ibuprofen when I have COVID-19?

Short answer, yes.  Long answer: we’re not sure.

On March 18, the World Health Organization (WHO) posted an article suggesting that patients who have COVID-19 avoid taking ibuprofen, based on observations of patients in France.7 However, later the same day, WHO changed their stance and said patients who have COVID-19 should not avoid taking ibuprofen.8

This is a good example of how quickly information is evolving during this pandemic. It’s difficult for doctors to know whether to act on information that is based on the experience of only a few (or even one) patient.

Resources and websites:

  1. The National Cancer Institute has a special website for COVID-19 and emergency preparedness. Coronavirus: What People with Cancer Should Know – https://www.cancer.gov/contact/emergency-preparedness/coronavirus
  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 Coronavirus Resource Center is one of the best places to get current updates. https://coronavirus.jhu.edu/
  2. Interactive map of US COVID-19 cases by statehttps://www.politico.com/interactives/2020/coronavirus-testing-by-state-chart-of-new-cases/
  3. The One-Two Punch: Cancer And Coronavirus (an important perspective for cancer patients) – https://www.forbes.com/sites/miriamknoll/2020/03/20/the-one-two-punch-cancer-and-coronavirus/#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-coronavirus-resource-center-physicians
  1. If you cannot avoid air travel, check out this handy article on “Dirtiest Places on Airplanes: How to Avoid Germshttps://time.com/4877041/dirtiest-places-on-airplanes/

 

References:

  1. Anderson K, Rambaut A, Lipkin W, Holmes E, Garry R. The proximal origin of SARS-CoV-2. Nature Medicine. 2020.
  2. CDC. Severe Outcomes Among Patients with Coronavirus Disease 2019 (COVID-19) — United States, February 12–March 16, 2020. MMWR Morb Mortal Wkly Rep. 2020.
  3. van Doremalen N, Bushmaker T, Morris DH, et al. Aerosol and Surface Stability of SARS-CoV-2 as Compared with SARS-CoV-1. N Engl J Med. 2020.
  4. Nishiura H, Kobayashi T, Suzuki A, et al. Estimation of the asymptomatic ratio of novel coronavirus infections (COVID-19). Int J Infect Dis. 2020.
  5. Pan L, et al. Clinical characteristics of COVID-19 patients with digestive symptoms in Hubei, China: a descriptive, cross-sectional, multicenter study. American Journal of Gastroenterology. 2020.
  6. AAO. Alert: Important coronavirus updates for ophthalmologists. https://www.aao.org/headline/alert-important-coronavirus-context. Published 2020. Accessed March 23, 2020.
  7. Fang L, Karakiulakis G, Roth M. Are patients with hypertension and diabetes mellitus at increased risk for COVID-19 infection? Lancet Respir Med. 2020.
  8. ScienceAlert. Updated: WHO Now Doesn’t Recommend Avoiding Ibuprofen For COVID-19 Symptoms. https://www.sciencealert.com/who-recommends-to-avoid-taking-ibuprofen-for-covid-19-symptoms/amp?fbclid=IwAR0f9eZt8u9s_xfiY06bJ0Sei2NasHQj_b_eosKGjBeJiJXi5LXQV3EIj7w. Published 2020. Accessed March 23, 2020.

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)

March 16, 2020 Update to the Joint Statement on #Coronavirus #COVID19 From #LungCancer Advocacy Groups

The post below is shared with permission.

The World Health Organization officially declared the COVID-19 outbreak a pandemic on March 11, 2020. As cases of the virus surge in countries around the world, with Italy being particularly hard hit, many nations are taking extreme steps to mitigate the outbreak, including whole country lockdowns. Here in the United States, the President declared a national emergency on March 13, 2020.

In this week’s update, we discuss four important topics related to COVID-19.

 

  1. Social distancing and why it matters for COVID-19

COVID-19 is caused by the virus, SARS-CoV-2. Individuals infected with SARS-CoV-2 appear to shed the virus from their respiratory tract (e.g., when coughing) even when symptoms may be very minor. Individuals infected with SARS-CoV-2 appear to shed the virus from their respiratory tract during the prodromal period.1 The prodromal period is part of an infectious disease cycle. It is defined as the period during which the symptoms felt by an infected individual may not be very specific or severe. The infected person can still perform usual functions and can therefore continue to be infectious. An infected individual can shed virus with very minor signs and symptoms.2 This explains why we are seeing widespread transmission in the community (this didn’t happen with SARS).

The reproductive number (R0)– the number of secondary infections generated from one infected individual – is estimated to be between 2 and 2.5 for COVID-19 virus.3 This means that a single infected person infects 2.5 people, which is higher than for the influenza virus. Approximately 3 to 5 days after infection, a person starts shedding virus and can infect others. Therefore, within a month, a single case can lead to 244 new cases.

The CDC now recommends social distancing to help decrease transmission of COVID-19 within the community.4 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. 5

In case you are interested, we invite you to take a look at the CDC’s community transmission mitigation strategy document (cdc.gov/coronavirus/2019-ncov/downloads/community-mitigation-strategy.pdf).

 

  1. Appointments with your oncologist: virtual or in-person?

It may be a good idea to consider rescheduling or switching to a virtual appointment if your treating physician or cancer center provides this option. Note that virtual appointments are not appropriate for infusions for chemotherapy or immunotherapy, or potentially critical scans. If you have an oncology visit due in the next couple of months, please contact your treating physician as soon as possible to discuss what’s the right approach for you and whether they anticipate any drug shortages due to supply chain disruption.

Several hospitals are now limiting the number of visitors and/or people accompanying patients to no more than one at a time.  In Seattle, the area hardest hit with cases, some hospitals are implementing the following measures to avoid being overwhelmed6:

  • People with routine appointments are being screened for symptoms. Those who are sick are required to wear a mask or may not be allowed to enter the clinic.
  • Elective surgeries are being postponed.
  • Patients who have flu-like symptoms or other concerns are asked to CALL their doctor rather than going directly to the Emergency Department or Urgent Care.
  • If you are having difficulty breathing, please do go to the Emergency Department.

 

  1. COVID-19 testing: where we are now

We are seeing transmission in the community, so it’s likely the virus is more widespread in the United States than we imagine. However, we don’t have hard data because testing was not implemented in the earlier days of the epidemic in the US.7 Right now, most people need to have symptoms before they can be tested.  As more test kits are distributed, testing will hopefully expand.  Drive-through testing has been made available in a few locations but is not yet widely available. As we have stated previously, the symptoms of COVID-19 infection include fever, dry cough and shortness of breath. If you suspect that you have been infected, you should call your doctor or local health department to determine next steps. The availability of tests varies on where you live.

The CDC is maintaining an updated list of where tests are currently being performed in the US.8

Additionally, state health departments are a valuable resource, providing hotlines and websites with information about what to do if you are concerned that you or a loved one might be infected (links in the references).

 

  1. Voices from the community:

Please check out Janet Freeman-Daily’s article where she describes her experience as a lung cancer survivor with a cough and the difficulties she faced to get tested for COVID-19. Janet lives in the Seattle, WA area — a COVID-19 hotspot.

Fred Hutchinson Cancer Research Center in Seattle published a helpful blog “Coronavirus: what cancer patients need to know”.

 

Resources and websites:

  1. The National Cancer Institute has a special website for COVID-19 and emergency preparedness. Coronavirus: What People with Cancer Should Know – https://www.cancer.gov/contact/emergency-preparedness/coronavirus
  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 Coronavirus Resource Center is one of the best places to get current updates. https://coronavirus.jhu.edu/
  2. 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-coronavirus-resource-center-physicians
  1. 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/

 

References:

  1. Chan JF, Yuan S, Kok KH, et al. A familial cluster of pneumonia associated with the 2019 novel coronavirus indicating person-to-person transmission: a study of a family cluster. Lancet. 2020;395(10223):514-523.
  2. Hoehl S, Berger A, Kortenbusch M, et al. Evidence of SARS-CoV-2 Infection in Returning Travelers from Wuhan, China. N Engl J Med. 2020.
  3. WHO. Coronavirus disease 2019 (COVID-19) Situation Report – 46. 2020.
  4. CDC. Implementation of Mitigation Strategies for Communities with Local COVID-19 Transmission Coronavirus Disease 2019 (COVID-19) Web site. cdc.gov/coronavirus/2019-ncov/downloads/community-mitigation-strategy.pdf. Published 2020. Accessed March 15, 2020.
  5. CDC. IInterim US Guidance for Risk Assessment and Public Health Management of Persons with Potential Coronavirus Disease 2019 (COVID-19) Exposures: Geographic Risk and Contacts of Laboratory-confirmed Cases. Coronavirus Disease 2019 (COVID-19) Web site. https://www.cdc.gov/coronavirus/2019-ncov/php/risk-assessment.html. Published 2020. Accessed March 15, 2020.
  6. UW. COVID-19 (formerly called Novel Coronavirus). https://www.uwmedicine.org/coronavirus. Published 2020. Accessed 2020, March 15.
  7. Lambert J, Saey TH. Social distancing, not travel bans, is crucial to limiting coronavirus’ spread. Science News2020.
  8. CDC. Testing in U.S. Coronavirus Disease 2019 (COVID-19) Web site. https://www.cdc.gov/coronavirus/2019-ncov/php/risk-assessment.html. Published 2020. Accessed March 15, 2020.

 

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)

Joint Statement on #Coronavirus #COVID-19 from #LungCancer Advocacy Groups

The content below was posted by several lung cancer advocacy groups today. Shared with permission.


We understand and appreciate the severity of the new coronavirus epidemic (also known as COVID-19) that’s spreading globally. As advocacy organizations dedicated to serving the needs of lung cancer patients, all of us are closely monitoring the latest developments related to the outbreak caused by the novel coronavirus, SARS-CoV-2, and the resulting disease, COVID-19.

This is a rapidly evolving situation and 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:

 

Facts about SARS-Cov-2/COVID-19

  1. This novel virus presents a unique threat to vulnerable populations, including the elderly and those with weakened immune systems, including cancer patients. Early studies conducted on lung cancer patients undergoing surgery suggest that this virus readily infects the lungs and can potentially cause pneumonia, making lung cancer patients particularly susceptible. 1
  2. Research suggests that the overall clinical consequences of COVID-19 may ultimately be similar to those of a severe seasonal influenza or a pandemic influenza.2

 

What you can do:

  1. First and foremost, we encourage everyone to follow best practices for public health, such as staying home when ill, handwashing with soap and water (or using a hand sanitizer), and respiratory etiquette including covering the mouth and nose during sneezing and coughing.3 Many of the steps you would take to protect yourself from catching the flu also apply for protecting yourself against COVID-19.
  2. Regarding travel within the United States, at this time there are no restrictions on travel. However, the situation may change rapidly. We encourage all people to evaluate the need for non-essential travel and to take appropriate precautions if travel is required. Please check with your doctor before making international travel plans. Again, the CDC is maintaining a page that outlines current travel advisories: https://www.cdc.gov/coronavirus/2019-ncov/travelers/index.html

 

What you should not do:

  1. Do not read or share information about COVID-19 from websites that are not maintained by reputed public health organizations (for example, the CDC). When in doubt, check your facts with what’s posted on the CDC or WHO website.

 

Resources and websites:

  1. 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- coronavirus-resource-center-physicians
  2. If you cannot avoid air travel, check out this handy article on “Dirtiest Places on Airplanes: How to Avoid Germshttps://time.com/4877041/dirtiest-places-on-airplanes/

 

References:

  1. Tian S, Hu W, Niu L, Liu H, Xu H, S. X. Pulmonary pathology of early phase 2019 novel coronavirus (COVID-19) pneumonia in two patients with lung cancer. Journal of Thoracic Oncology. 2020.
  2. Fauci AS, Lane HC, Redfield RR. Covid-19 – Navigating the Uncharted. N Engl J Med. 2020.
  3. Del Rio C, Malani PN. 2019 Novel Coronavirus-Important Information for Clinicians. JAMA. 2020.

GO2 Foundation for Lung Cancer (amoore@go2foundation.org)
LUNGevity Foundation (ubasuroy@lungevity.org)
Lung Cancer Foundation of America (KNorris@lcfamerica.org)
Lung Cancer Research Foundation (jbaranski@lcrf.org)
LungCAN (kimberly@lungcan.org)

March 3, 2020

The challenge of providing financial assistance for expensive cancer drugs

Drug companies must be especially cautious when interacting with patients and nonprofits. Such interactions must navigate a policy minefield designed to protect patients as well as ensure fair market conpetition.

One example of such policy is regulation that prohibit drug companies from enticing patients to take one drug instead of another. This is important from a medical ethics perspective. However, such policies complicate the process of assisting patients with affording expensive newer drugs like cancer targeted therapies and immunotherapy.

Most patients could not afford to take the expensive ($17K+ per month) FDA-approved drug — like crizotinib, the one that keeps me going as a ROS1 cancer patient — without insurance and copay assistance. This is especially problematic for Medicare patients, who must pay out of pocket to get through the prescription drug coverage “donut hole” every year. I’ll be there soon.

To be fair, and to comply with regulations, patient assistance programs should help all patients access any approved targeted therapy. But who should pay for that? If one drug maker supports such a program, must all makers of competing drugs do so? If only one or two drugmakers participate in the program, does that make it unethical? Does such a program support higher drug prices, or fuel innovation by allowing patients rapid access to new, more effective drugs?

I don’t have the brainpower to answer those questions. I just know that cancer targeted therapy has made a huge difference in my life for nearly seven years, and I want every patient to have the same opportunity to access an appropriate new therapy that matches their biomarker.

The article below explores some of the pitfalls awaiting those who try to help patients pay for expensive new drugs. Sorry it’s behind a paywalll.

Two patient charities settle allegations of helping drug makers pay Medicare kickbacks (STAT News)

An Oncologist’s Perspective on Medical Aid in Dying

HuffPost Camidge MAID

Thank you Dr. Camidge for sharing your experience as an oncologist with Medical Aid in Dying (MAID). All terminally ill patients deserve the right to have their wishes honored this way.

Why I Wrote The Rx That Helped My Cancer Patient Die

in HuffPost 26-Jun-2019

 

8 years in the Cancerverse

ROS1der cofounders Lisa Goldman, Janet Freeman-Daily and Tori Tomalia at the C2 Awards Ceremony in New York City May 2, 2019.

Eight years ago today, I first heard the words, “You have lung cancer.”

In 2011, I was diagnosed with stage IIIa non-small cell lung cancer (NSCLC). I had traditional chemo and radiation. Once treatment ended, my cancer immediately spread to a new site. Then I learned about online patient communities, and biomarker testing for genomic alterations, and clinical trials. I had more chemo and radiation. My cancer spread again. Then I tested positive for ROS1+ NSCLC, and entered a clinical trial. Now my  cancer has been undetectable by scans for over 6.5 years thanks to research.

Eight years ago today, I first heard the words, “You have lung cancer.”

In 2011, the majority of lung cancer patients were diagnosed after the cancer had already spread, and half the patients died within a year of diagnosis. Now we have lung cancer screening for those at high-risk of lung cancer, to catch the disease in early stages when it is curable. We have new therapies that are allowing some patients to live well for 4 years or more. In 2011, the standard of care guidelines published by the National Comprehensive Cancer Network for non-small cell lung cancer were updated about once every 5 years.  Now the guidelines are updated about 5 times a year to keep pace with the record number of new treatment approvals that are proving effective for an every-increasing number of patients.

Eight years ago today, I first heard the words, “You have lung cancer.”

In 2011, I had no idea what cancer advocates did. I’d never met any. As I began to feel better, I wondered why I was still alive when so many others had died. Gradually I began supporting others in online forums, telling my lung cancer story, learning about treatment options and research, and sharing my patient perspective with the lung cancer community, medical professionals, and policy makers in hopes of increasing funding, acclerating research, and improving outcomes for other lung cancer patients. Now there are dozens of other lung cancer patients and caregivers advocating as well.

Eight years ago today, I first heard the words, “You have lung cancer.”

From that singular moment of disbelief and panic, I started on a journey that has changed my priorities, and my approach to life in general.  I now focus on living life to the best of my ability (whatever my abilities might be at the moment), on what matters most to those I love, on what will make a difference for other lung cancer patients–especially those who have my rare type of cancer.

I wonder what the next 8 years will bring.

 

Ah, the life of a research advocate …

Life as a lung cancer research advocate can require a lot of travel. This week I’m in Washington DC for two meetings.

Monday I participated as the sole patient advocate in the National Cancer Institute’s Small Cell Lung Cancer (SCLC) working group meeting, along with some of the top US researchers in this disease. The meeting will provide fodder for the NCI’s report to Congress about the Recalcitrant Cancers Act.

Thursday I’ll be one of several patient advocates at the National Institutes of Medicine for a meeting on data sharing, along with medical institutions, pharma, and healthcare payers. Data sharing in the electronic age involves more than just who can see your medical records. We patients and family members have already participated in several phone calls in preparation for this meeting. It will be interesting to hear what the other stakeholder groups think are the main barriers to data sharing, and what we should do about them.

In between, I’m trying to get caught up on expense reports and writing projects while adjusting to a new time zone. I hope my inputs make a enough difference for patients to make the travel worthwhile.