Today the Centers for Medicare and Medicaid announced they will cover Next Generation Sequencing (NGS) for cancer! This is a major victory for all cancer patients.
Physicist Stephen Hawking died yesterday at age 76. As a science geek, I was awed by his amazing intellect and ability to explain difficult science clearly. As a metastatic cancer patient, I admired how he made the most of life despite a crippling health condition and grim prognosis.
Below is reprint of a Facebook post (with permission) by feisty science fiction author Pat Cadigan, a friend and ovarian cancer patient. She also knows about making the most of life.
I never met Stephen Hawking, exactly. One day, I was in Covent Garden and as I walked along a sidewalk, two carers were getting him out of a specially-equipped van. I felt it would be inappropriate to stop and gush—the carers were in the act and I would have been interrupting. So I kept going—but I gave him a great big I-know-who-you-are-and-I-think-you’re-great smile. I like to think I saw a twinkle in his eye. I smiled at the carers, too, and they smiled back at me.
(Sometimes I think that they smiled at me because I didn’t look like I was pitying Prof. Hawking.)
When Stephen Hawking was diagnosed with motor neurone disease, he was given two years to live. He spun those two years into nearly half a century. This is practically unheard-of for people with motor neurone disease—it is a terrible, merciless condition that, at the time Hawking developed it, was not even as treatable as cancer. 76 is still too young an age to leave the building; I really hoped he would stay longer.
But while he was here, he made it count, even though he was unable to move, and then unable to speak for most of his life. His mind was lively, energetic, indomitable. He defied his circumstances and his prognosis. Hell, he even left his wife for his nurse—probably not his finest hour, but the heart wants what it wants, even when it’s confined to a wheelchair, unable to speak.
Most of us never achieve Hawking’s level of intellectual brilliance. But we can all try to ‘defy our prognosis,’ so to speak. We can confound expectations. We can make every moment count. We don’t have to accept what we’re told to accept. We don’t have to settle.
Maybe we won’t succeed in defying our prognosis, so to speak. But if we don’t try, we’ll never know.
You don’t have to lie down quietly. Even if you’re paralysed, you can go down swinging.
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:
- How to Navigate a Scientific Meeting by American Association for Cancer Research (AACR)
- Advocate Resources by Research Advocacy Network (RAN)
- Being a Cancer Advocate by American Society for Clinical Oncology (ASCO)
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.”
I hope you’ll support me and the Global ROS1 Initiative as we strive to accelerate research, find better treatments and hopefully cure ROS1 positive (ROS1+) cancer — which I have. Here’s a National Cancer Institute blog about the Initiative. This project is very dear to me.
If you’ve been meaning to contribute, or you have friends or family you’ve been meaning to ask to donate, do it today, or sometime before the end of the year! The recently-signed US tax law revisions may affect whether you can claim a tax deduction for your charitable contributions after January 1, 2018.
GO TO MY FUNDRAISER BY CLICKING HERE:
Janet Freeman-Daily’s ROS1 Research Fundraiser
Thanks for supporting ROS1+ cancer research—you could help save someone’s life someday. For those who want more detail about the project and fundraiser, read on!
Why research ROS1 Cancer?
My type of cancer is driven by an alteration in the ROS1 gene. Medical research has made it possible for me to live well with aggressive, metastatic ROS1+ lung cancer since 2011. However, ROS1+ cancer is uncommon (only 1%-2% of lung and other cancers) and not well understood. Only one approved ROS1-targeted drug exists, and patients eventually develop resistance to it. Little is known about how this disease begins, progresses and develops resistance to treatment.
Is my donation tax-deductible?
This fundraiser directs funds to the Bonnie J. Addario Lung Cancer Foundation (ALCF), a 501(c)(3) nonprofit (view their Guidestar page); monies are placed in an ALCF account designated for our ROS1 project. Donations are tax deductible under US tax laws.
What is the Global ROS1 Initiative?
I helped to create the Global ROS1 Initiative, a unique collaboration between ROS1+ patients, caregivers, researchers, clinicians, and industry. This is the first-ever effort initiated by patients to focus on cancer driven by a single genomic alteration anywhere in the body. We are initially funding projects in the US (takes time to learn about international research collaboration), but our patient group is global, with patients in 19 countries to date.
How did the Global ROS1 Initiative get started?
Who are the Global ROS1 Initiative partners?
- The ROS1ders (patients and caregivers dealing with ROS1+ cancers)
- Bonnie J. Addario Lung Cancer Foundation
- Addario Lung Cancer Medical Institute (ALCMI)
- Dr. Robert Doebele and Dr. Ross Camidge, University of Colorado Comprehensive Cancer Center
- Dr. Christine Lovly, Vanderbilt-Ingram Cancer Center
- Dr. Ignatious Ou, University of Colorado, Irvine Chao Family Comprehensive Cancer Center
- Dr. Manali Patel, Stanford University
- Dr. Alice Shaw, Massachusetts General Hospital
- Champions Oncology (specialists in making cancer models)
What research will the Global ROS1 Initiative fund?
Funds in the ROS1-designated account will be distributed by a panel of Global ROS1 Initiative representatives (including patients) to our projects. We are funding two projects at present:
- A survey conducted through Stanford University, which collects personal and health history data on ROS1ders. Researchers will study the data to look for possible causes of ROS1+ cancer, and evaluate effectiveness and sequence of treatment options.
- The ROS1 Cancer Model project, which is creating new models of ROS1+ cancer for drug development and research into our disease. In early 2017, only a few ROS1+ models existed, and they did not represent all the dozens of variations of ROS1+ cancer. In this project, we ROS1ders agree to donate our cancer tumor cells collected in the normal course of care to create cell lines and mouse models that researchers can use to study our disease.
How will the Global ROS1 Initiative accelerate research?
As part of our patient-driven approach, we aim to make our data and models widely available to the cancer research community instead of holding it in silos at individual institutions. We will be creating a biorepository of our specimens with annotated patient data, including making use of patient registries (like the Lung Cancer Registry) that share de-identified data will validated researchers. The cancer models we create will be distributed at minimal cost to researchers.
The ROS1ders also help spread vetted information about ROS1+ cancers to patients, caregivers, and the public. We donate our time to maintain and write content for the ros1cancer.com website which shares up-to-date information about ROS1+ cancer, names of ROS1+ experts, known treatments and their approval status globally, and available clinical trials focused on ROS1+ cancers. We also administer a private Facebook group in which ROS1+ patients and caregivers share their experiences, news about our cancer, and tips for living with our disease (more info on joining this group is here).
My blood pressure and sleep cycle took a serious hit last night, and it wasn’t my cancer acting up.
I was online researching the details of my 2018 health plan. I had already made my selection during Open Enrollment–only one plan met my needs. I was digging deeper into my 2018 coverage for more major changes–like my copay for medical visits jumping from $15 to 10%. I had to search for a link, that wasn’t at all obvious; finally I found “Annual Enrollment has Closed. View your future coverage” and clicked.
Much to my surprise, Boeing’s benefits website said I had chosen a new 2018 health plan. A quick review of terms showed it didn’t cover my Colorado clinical trial!
My heart rate shot up. My throat got tight. My breathing accelerated. That trial has kept me alive for five years and counting, and provided my expensive targeted therapy drug for FREE. Another clinical trial is my best hope for staying alive when this cancer drug fails me (as it is likely to do); both ROS1 trials and ROS1 expert oncologists are virtually non-existent in my home state of Washington. My Colorado oncologist is among the handful of world experts in my type of cancer and has access to all the ROS1 clinical trials. If I didn’t have access to out-of-state experts at academic cancer centers, my hopes of long-term survival were greatly diminished. It would be bigly expensive to pay for out-of-state medical care personally–about $10K for each clinic visit that included a scan.
Hubby wasn’t home and not available by phone, so I texted a couple of fellow patient advocates and snuggled kitties to calm myself until I could think things through.
Could it be a glitch in Boeing’s benefits website? I had a message on file from Boeing saying I would have the same health plan unless I directed them to change my plan. Yet when I clicked on that link ‘view your future coverage” link I was in a different health plan that only had access to selected clinics near Seattle, not the Blue Cross Blue Shield (BCBSIL) national network I’d been in for years.
Did I click on the wrong button during open enrollment? My brain doesn’t remember things as well as it did BC (before cancer), but I was pretty sure I hadn’t seen a screen that said anything like “confirm your change in healthcare plan.”
Might Boeing take pity on a metastatic cancer patient with chemobrain and allow me to change my plan, if indeed I’d chosen the wrong plan? A fellow metastatic lung cancer patient said her plan allowed her to make a change after open enrollment closed when she realized she’d missed the deadline. I certainly hoped Boeing would be equally understanding if I’d made a mistake.
Alas, I couldn’t take any action last night, as Boeing Benefits was closed for the day. My only option was to call first thing in the morning.
I had a bad night.
Fortunately, this morning Boeing Benefits confirmed they had misleading info on their website. I still have my excellent BCBSIL coverage for 2018. I can continue in my clinical trial and have most of my medical expenses covered.
However, I suspect this is not the last such panic I will experience. I suspect we chronically and seriously ill patients in the USA will be facing more insurance-related shocks over the next several years.
Last year, several friends who are self-employed cancer patient/advocates on Affordable Care Act plans discovered their longtime oncologists at academic cancer centers were no longer covered by any plan on the ACA. This year, another cancer patient discovered their health plan’s 2018 formulary dropped their expensive, life-saving targeted therapy cancer drug (which costs upwards of $10,000 per month in the US). Uncertainty in the insurance market and proposed changes in subsidies and and the tax code threaten to drive up insurance costs even faster. As insurers leave the market, some patients can no longer find plans in their geographic area that cover their needs.
And, when I turn 65 in a few years and become eligible for Medicare, Boeing will no longer provide health coverage for me (that’s another long story). I’ll have to change to a far more expensive and less comprehensive Medicare plan–assuming Medicare is still around.
“Who knew healthcare was so complicated?” Ask any patient with serious health conditions.
As more patients lose healthcare coverage options, the healthcare system may have to add a new code: Death from health insurance changes.
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.
Please register for your free ticket(s) here:
Life & Breath (LAB) is a grassroots effort comprised of lung cancer survivors, caregivers, and advocates. We volunteer with various lung cancer organizations but have decided to come together as individuals for a common cause:
The Life & Breath Rally
Thursday, November 2, 2017, 11 a.m. – 1 p.m.
U.S. Capitol Building, Washington, D.C.
Lung Cancer is a National Emergency and must be declared as such. This step will allow an increase in desperately needed research funding. We represent the 433 Americans who die every day because of this disease, the deadliest of all cancers. Our goal is to have enough participants to stage a die-in of 433 people. We need Congress to see what this disease actually looks like.
The Rally will be held in Area 1 on the Capitol grounds from 11 a.m. until 1 p.m. (see this linked map): https://www.uscp.gov/sites/uscapitolpolice.house.gov/files/wysiwyg_uploaded/U.S.%20Capitol%20Grounds%20Demonstration%20Area%20Map.pdf
Participants are encouraged to bring their own signs, posters, etc., to the Rally, with the understanding that these items may not be brought into or near the Capitol Building. Members of the media will be invited.
Speakers will include members of the Congressional Lung Cancer Caucus (Rick Nolan, Debbie Dingell, Jamie Raskin as of 10/18) with cooperation from the office of Congressman Nolan, founder and co-chair. Congressman Nolan’s daughter, Katherine Bensen, a Stage IV lung cancer survivor, will also be in attendance, as well as former NFL player and noted lung cancer advocate Chris Draft, who lost his young wife to the disease, and Greta Kreutz, former D.C. news personality and lung cancer survivor.
As this is an unbranded, grassroots event, participants are free to wear clothing representing their favorite lung cancer organizations, if desired. All organizations and their volunteers are welcome. There will be no fundraising as we are not a nonprofit nor do we represent one. Our goal is to provide a unified presence for the purpose of Lung Cancer advocacy.
Participants are encouraged to make appointments on their own to see their elected U.S. Representative and Senators to occur after 1 p.m. when the Rally is scheduled to conclude. We can provide an informational packet, or participants are free hand out their own organizations’ literature when these visits are made.
You can find your elected officials here: http://act.commoncause.org/site/PageServer?pagename=sunlight_advocacy_list_page
Getting to the Capitol: https://www.visitthecapitol.gov/plan-visit/getting-capitol
Please contact us directly if you are interested in room and/or ride sharing. We will do our best to accommodate you.
Please register for your free ticket(s) here so we can get an idea of attendance numbers before the Rally: https://LABRally.eventbrite.com/
This page will be updated on a regular basis, so check back often.
Please join us for this important event!