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
- 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
- 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:
- 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.
- 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:
- 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:
- You can find information specific to your state or city or town on your health department’s website.
- 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
- 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/
- 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.
- Fauci AS, Lane HC, Redfield RR. Covid-19 – Navigating the Uncharted. N Engl J Med. 2020.
- Del Rio C, Malani PN. 2019 Novel Coronavirus-Important Information for Clinicians. JAMA. 2020.
GO2 Foundation for Lung Cancer (firstname.lastname@example.org)
LUNGevity Foundation (email@example.com)
Lung Cancer Foundation of America (KNorris@lcfamerica.org)
Lung Cancer Research Foundation (firstname.lastname@example.org)
March 3, 2020
This Photo by Unknown Author is licensed under CC BY-SA-NC
Fellow travelers (especially those with cancer or other health issues):
Given the worldwide spread of measles, please be sure you have immunity to measles. You might need an MMR (Measles Mumps Rubella) booster vaccine.
The global measles outbreaks have demonstrated the measles virus can be spread by travelers. You, as a traveler, can be exposed to the disease. However, if you do not have immunity, you can also expose others to the disease. A single traveler carrying the measles virus can expose a local population even before the traveler has symptoms of the disease. It doesn’t have to be international travel — any travel to another location risks spreading the disease to a new population.
The CDC claims “If you and your travel companions have received two doses of a measles-containing vaccine (and can document both of them), you have sufficient protection against the disease. You do not need any additional measles vaccines or lab work. You are also protected against measles if you have laboratory evidence of immunity, laboratory confirmation of measles disease, or if you were born before 1957.”
In the case of Baby Boomers or those dealing with chronic or serious health conditions, I would go further.
I was born before 1956, so the assumption would be that I’m immune to measles. However, since I have compromised lungs due to lung cancer treatment and Washington State had a measles outbreak last year, I asked my PCP about my immunity. She recommeded I have a titer to test whether I still have immunity to measles, mumps and rubella. The tests only required a blood draw, followed by a separate analysis of immunity for each disease.
My titers showed I still had immunity to measles and rubella, diseases which I had as a kid. However, I’ve never had mumps. Even though I had the MMR vaccine when I was 17, the titer showed I had lost my immunity to mumps. Because of my level of immunity and my previous MMR, my doctor prescribed a single MMR booster shot. The cost of all three titers and the MMR booster were completely covered by my insurance (a BCBS company).
My son is in his 30’s, and had the MMR vaccine as an infant. He never had any of these diseases, although he did get chicken pox. His titers showed he was immune to two diseases, but had lost immunity to the third. His doctor recommended a single MMR booster. His insurance (Kaiser) covered the titers and MMR booster for him as well.
Please, if you plan to travel, make sure you have immunity to measles. More information is available here:
The value of vaccines is established by scientific evidence. Please don’t debate this fact in the comments.
Have you or a family member been diagnosed with lung cancer?
Are you already active in providing lung cancer support and/or education to others?
Do you want to ramp up your advocacy work and learn more about the science of lung cancer research?
Apply for the brand-new STARS (Supportive Training for Advocate in Research and Science) program! STARS was developed by the IASLC (International Association for the Study of Lung Cancer) in collaboration with international lung cancer patient research advocates and advocacy nonprofits.
Those accepted in the program will be assigned a mentor from their own country, meet and learn lung cancer science from researchers, develop science communication skills, and attend the World Conference on Lung Cancer (WCLC) in Barcelona, Spain in September 2019.
To learn more and to find the online application, click here:
The application period is open from March 8 to May 1, 2019. Hope you’ll apply!
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.
If you’re a cancer patient looking for assistance with paying for targeted therapies, transportation to appointments, lodging near cancer centers, or other issues, check out Nancy’s List of financial assistance resources!
Chemist Jean Cui at #ASCO17 posters with #ALK & #ROS1 NSCLC patients who thrive on drugs she helped develop
As cancer patients and caregivers transform into active cancer advocates, they may think about attending medical conferences. On March 8, at 8 pm Eastern Time (5 pm PST), #LCSM Chat will discuss various aspects of cancer advocate participation in medical conferences.
Some reasons for cancer advocates to attend medical conferences are to:
- Learn more about cancer and treatment options for cancer
- Get details about new research
- Meet the top doctors who treat their type of cancer
- Support an advocacy organization’s outreach booth
- Network with other advocates, as well as clinicians and researchers
- Share an advocate’s perspective on a specific topic, sometimes as an invited speaker
As more advocates participate in conferences, the conference organizers, professional societies, and medical practitioners are coming to understand the benefits of including advocate voices in their programs. #LCSM Chat member Janet Freeman-Daily was recently interviewed by the International Association for the Study of Lung Cancer about her participation in conferences–read the resulting article here: Why Should Advocates Attend Academic Lung Cancer Conferences?
Tools exist to help advocates navigate cancer conferences and understand the content they will see:
If you know of other resources, please share them in the comments on this page or in the chat.
Some professional societies and cancer nonprofits sponsor programs that enable cancer advocates to attend conferences and learn more about medical research:
- AACR’s Scientist↔Survivor Program
Participants receive travel grants and participate in special educational programs at cancer research meetings.
- ASCO’s Conquer Cancer Foundation Patient Advocate Scholarship Program
Provides need-based grants to cover travel and registration for a variety of ASCO meetings, including the huge Annual Meeting in Chicago each June. Applications for the Annual Meeting are usually accepted during a window in early March.
- RAN’s Focus on Research Scholar Program
Scholars participate in preparatory conference calls, virtual classroom (webinars), learning materials and mentoring for research advocates to improve skills and understanding of biomedical research, and attend the ASCO Annual Meeting.
- International Association for the Study of Lung Cancer (IASLC) Travel Awards for World Conference on Lung Cancer (WCLC)
Provides travel grants to WCLC, which is held in a different international city each year—it will be in Toronto Canada September 2018.
Our moderator Janet Freeman-Daily (@JFreemanDaily) will lead our discussion using the following prompts:
- T1: When a cancer patient/caregiver attends a medical conference, what are benefits to the patient/caregiver? Benefits to medical professionals? To the conference?
- T2: If you have attended a medical conference in which patients/caregivers participated, what did you like most about that conference? (Pls state whether you attended as patient, caregiver, or med professional)
- T3: If a cancer patient or caregiver wanted to attend a medical conference, which would you recommend for their first conference, and why?
- T4: What tips would you give a cancer patient or caregiver for making the most of their conference experience?
- T5: What programs help cancer patients and caregivers attend and/or afford conferences? Do you have experience with any of them?
We hope you’ll join our #LCSM Chat on Thursday 3/8 at 8 pm Eastern Time (5 pm Pacific). If you’re new to tweet chats, please read our primer “To Participate in #LCSM Chat.”
Wonder why I’ve been relatively quiet online recently? I just returned from a 15-day “Cities of Antiquity” cruise in the Mediterranean aboard the Viking Star. This trip gave me a much-needed mental health break–I actually spent two whole weeks on something other than lung cancer (though I did sneak online for 10-20 minutes several days).
Since I was still rehabbing my foot, I used trekking poles on walking tours and my knee roller on the ship to avoid overdoing. My left foot did not swell or turn blue even on days when my fitbit clocked over 10,000 steps. The tours gave me the most exercise I’ve had in six months, which is probably why I didn’t gain any weight on the trip despite the abundance of food, tempting desserts, and wide variety of gelato flavors.
Lots of perspective and leasons learned to be found in other cultures’ 3000+ years of history. We visited Athens, some Greek islands (among them Mikonos and Rhodes), Cyprus, Israel (Jerusalem, Nazareth, and the Sea of Galilee), Naples, Pompeii, and Rome. It was well worth yesterday’s 29-hour travel day (Rome to Seattle) and the upper respiratory infection that followed me home.
More pictures to come.