Home » Advocacy (Page 14)
Just realized I have a Speaker Profile Page for the 2014 Stanford Medicine X conference. This is really going to happen! Only 69 days to go–I better start writing my speech. And maybe get a professional headshot.
Edited 7/2/2020 to add screen caps of MedX profile:
(This is a reblog of today’s blog on the #LCSM website)
On Thursday June 26, at 12 noon Eastern Time, the Journal of the American College of Radiology (#JACR) tweetchat will discuss the patient’s perspective of lung cancer screening. It will be hosted jointly by #JACR and #LCSM, using the hashtag #JACR, and will be moderated by Dr. Ruth Carlos (@ruthcarlosmd) of #JACR with guest moderators Ella Kazerooni, MD, and Janet Freeman-Daily (@JFreemanDaily) of #LCSM. #JACR posted about the chat and provided the following information:
—————————————————
“Ruthie, your dad fell down and now he has cancer.”
My dad had tripped down a short flight of steps to the basement. In Urgent Care, he received a chest X-ray for shoulder pain, inadvertently detecting his lung cancer. I was grateful that he accidentally fell, grateful that he received a chest X-ray rather than shoulder X-rays, grateful that I still have my dad, a 70 year old man who smoked two packs a day since he was 18.
The survival rate for early stage lung cancer is nearly 50%. The survival rate for late stage disease is less than 5%. The U.S. Preventive Services Taskforce (USPSTF) recommends a more systematic way to screen individuals like my dad: use low dose computed tomography, also known as low dose CT or LDCT, to find early stage lung cancer. The National Lung Screening Trial enrolled more than 53,000 participants in a study. It showed lung cancer screening with LDCT resulted in 20% fewer deaths from lung cancer compared to screening by chest x-ray. On the strength of these findings, the USPSTF showed strong support and issued a “Grade B recommendation” for lung cancer screening with LDCT, requiring private insurance plans to completely cover this service. Medicare administrators now are weighing the decision to cover lung cancer screening, balancing the benefits with the unintended harms.
Some of the harms associated with lung cancer screening include “false-positives”—detected nodules or tumors that are actually not cancer. Low dose CT can also detect abnormalities outside the lungs, such as thyroid nodules or heart problems. These are called “incidental findings” or “incidentalomas,” most of which are benign. However, because a small percent of incidentalomas turn out to be potentially harmful, additional diagnostic testing may be required. These additional procedures can lead to increased cost to the patient, even if the screening test is free. Both false positives and incidentalomas can potentially increase patient anxiety, test-associated radiation, and out-of-pocket costs.
Understanding patient concerns about lung cancer screening is essential to fully implementing this life-saving medical service of LDCT. Patient-Centered Outcomes Research, or PCOR, focuses on addressing patient questions such as “What can I do to improve the outcomes that are important to me?” and “How can clinicians and the care delivery systems they work in help me make the best decisions about my health?” Per a USPSTF recommendation, the ECOG-ACRIN cancer research group proposes to develop a registry of participants who receive lung cancer screening in order to understand the full patient experience, including what outcomes, benefits and harms are most meaningful to patients, how to consistently communicate these benefits and harms, and how to support patient choice regarding screening. ECOG-ACRIN is one of the National Cancer Trials Network groups launched this year by the National Cancer Institutes. It is implementing PCOR principles in the development phase of the registry to incorporate patient voices and perspectives.
Here are the four questions that will be discussed during the Tweet Chat:
T1: What clinical, psychological and cost outcomes are most important to patients who receive lung cancer screening? #JACR
T2: Some lung nodules detected by lung cancer screening are “false positives” (not cancer). What effect would this have on you? #JACR
T3: Lung screening might detect other conditions (e.g., thyroid and heart) needing more tests. What concerns you about this? #JACR
T4: What aspects of lung screening benefits and harms are difficult to understand? How might understanding be improved? #JACR
If you would like to be considered for a patient advisory panel about lung cancer screening or want to tell us about your experience, email us at lungscreeningregistry@gmail.com.
Moderators for This Chat
@ruthcarlosmd (Ruth Carlos, MD), Deputy Editor for JACR and Co -Chair of the ECOG-ACRIN Patient Centered Outcomes and Survivorship Committee.
@JFreemanDaily (Janet Freeman-Daily) , cofounder and comoderator for Lung Cancer Social Media #LCSM Chat on Twitter.
Special guest: Ella Kazerooni, MD, Cardiothoracic Division Director and Professor of Radiology at the University of Michigan, is the Vice Chair of the National Comprehensive Cancer Network (NCCN) lung-cancer screening panel. She recently testified before the Medicare Evidence Development & Coverage Advisory Committee on the value of lung cancer screening and the need for Medicare coverage of LDCT.
Today the Seattle Times published a guest op-ed piece co-authored by myself and Renée Klein, the President and CEO of the American Lung Association (ALA) of the Mountain Pacific. You can read it here: Medicare should cover low-dose CT screening for lung cancer.
While I hope you’ll read it, that’s not why I’m blogging today. I’m blogging because I want you to know something.
This op-ed piece was made possible by the power of Lung Cancer Social Media (#LCSM).
When I proposed co-authoring this piece to Renée, she enthusiastically agreed. However, we only had two days and 650 words in which to write it. I knew the piece required a lot of facts to support the opinion, but which facts about lung cancer screening with low dose CT would have the most impact? Which facts were the most current? How should we structure the facts to make our point within word count? And where on the web were the sources? The Seattle Times required links to sources before they would accept the piece.
The Lung Association had several necessary facts collected with source citations on one of their webpages. Their researchers found a few more. The rest were scattered all over the web. I didn’t have much time to find them, especially when I didn’t know which sources we needed yet.
As I sat staring at a blank Word document trying to compose my thoughts, a fellow founding member of the #LCSM Chat, Deana Hendrickson (@LungCancerFaces), texted me about another subject. Then it hit me. I had at my literal fingertips a ready-made community of passionate lung cancer patient advocates and healthcare professionals, each of whom had already demonstrated their desire to see Medicare cover lung cancer screening with low dose CT. In fact, the #LCSM community had created a change.org petition on this subject in February.
So I made use of those connections. I sent emails and Twitter direct messages to other #LCSM Chat regulars: thoracic surgeon Dr. David Tom Cooke (@UCD_ChestHealth), radiation oncologist Dr. Matthew Katz (@subatomicdoc), and fellow advocates Deana, Laronica Conway (@louisianagirl91), and Andrea Borondy Kitts (@findlungcancer). Even though they were located thousands of miles from me and were busy with their own jobs and lives, they all responded within an hour. Over the next 24 hours, they helped brainstorm the structure of the piece, provided links to sources they knew, and waded through Google for the additional facts needed to round out the argument. Andrea carried the research one step further by discussing a difficult point with the lead author of a relevant journal article–he just happened to be in a meeting she attended that afternoon– and feeding me answers in real-time texts. All of them also reviewed rough drafts and added insightful comments. It’s as if we were intended to work this project together at that particular time.
Because of the #LCSM community, my co-author, and my writing critique group (who just happened to be meeting the night I completed the first draft), 23 citations were thoroughly researched and four drafts including the final were completed in less than two working days.
I am amazed and humbled by the dedication displayed every day by the #LCSM community in the fight against lung cancer.
Thanks, everyone. It truly takes a village.
This morning I awoke to learn I’d been on the news at 6:15 AM. The local NBC affiliate, King 5, included excerpts from my interview yesterday in their coverage of the Lung Force Turquoise Takeover and art unveiling in Seattle. You can see the clip here. Wonder why I kept looking at the ceiling?
We had a gorgeously clear 80-degree day today in the Pacific Northwest–perfect for a ball game. Fellow lung cancer patient Gwynne Cleveland (@GB2C on Twitter) and I worked the Lung Force table at a Seattle Mariners day game, recruiting walkers for the inaugural Lung Force Walk in Seattle on June 7. Shirt sleeve weather in May is a rare treat around here, although the breeze on the shaded concourse drove us both into sweaters.
Back home, as I hear the birdsong in the fading sunlight and spectacular sunset, two questions pop into my mind:
Why do birds sing at dusk?
Is it the same reason lung cancer patients blog?
Today I celebrate my three-year cancerversary. It was May 10, 2011, when biopsy results confirmed my lung cancer diagnosis.
My life has evolved quite a bit since that day. My first cancerversary in 2012 fell two days after my sixth (and last) dose of second line chemo, and a month before my second series of radiation treatments. I was stage IV, continually felt like I had the flu, and though hopeful, didn’t feel much like celebrating. My second cancerversary in 2013 fell sixth months into my current clinical trial. I had achieved No Evidence of Disease (NED) and focused on enjoying life, but was nearing the timeframe when others who took the same experimental drug typically progressed. I flew to Denver every 4 weeks for trial check-in, juggled side effects of treatments past and present, and felt anxious about the future.
My third cancerversary is different. Life no longer revolves around cancer treatment. I’m 17 months NED in my clinical trial, and the drug’s side effects are minimal. My visits to Denver every other month seem almost routine, with only a hint of scanxiety. I’m exercising most days, rebuilding my fitness level, and starting to lose the 60 pounds gifted to me by various cancer treatments. Physically, I’m less a cancer patient and more an out-of-shape fifty-something.
My life still revolves around lung cancer, but not in the same way. I’m busy most days with lung cancer patient advocacy. In addition to writing this blog for over a year, I moderate Lung Cancer Social Media (#LCSM) chats on Twitter and work with lung cancer nonprofits, healthcare professionals, researchers, and patient advocates to raise awareness and support of lung cancer issues such as benefits of mutation testing, screening with low dose CT, living with metastatic cancer as a chronic illness, and the need for increased research funding.
To celebrate this cancerversary, my husband and I spent a quiet vacation week in Whistler BC. The drive from Vancouver along Howe Sound into the volcanic coastal range (via Sea to Sky Highway) showcased Mother Nature at her finest. I enjoyed exploring Whistler Village and surrounds as well as writing. As I watched the snowboarders walking down from the Blackcomb gondola, I did feel a twinge of regret that I can no longer ski. However, I later reveled in the warm sun as I walked the mile around Lost Lake (2200 feet elevation!) at a moderate pace, with only a few stops–I could not have done that in 2011, 2012, or 2013.
So life has returned to an acceptable state of normality. At this point in time, a headache is just a headache—it doesn’t automatically trigger anxiety about brain mets. I look forward to seeing my son graduate from college next May. I accepted a commitment in fall 2015 without first asking if I’d be alive on that date. I know my targeted therapy cancer pill likley will fail me someday, but I now can go weeks without thinking about that.
As Trillian says in Hitchhiker’s Guide to the Galaxy:
“We have normality. I repeat, we have normality. Anything you still can’t cope with is therefore your own problem.”
Howe Sound, British Columbia
Sea to Sky Highway, British Columbia
Lost Lake Outflow near Whistler BC
The guest post below is written in response to Dr. Scot Aberegg’s blog post. His and other recent blog posts and articles have claimed “overdiagnosis” of breast cancer and lung cancer due to screening. Andrea Borondy Kitts, a former engineer and fellow Lung Cancer Social Media tweeter whose husband died of lung cancer last year, addresses Dr. Aberegg’s claims in her letter.
——————————-
Dr. Aberegg, thank you for your interesting post on overdiagnosis problems with breast and lung cancer screening. I would like to comment on many of your points.
Background:
I am a mechanical engineer. I have a Master’s degree in Management and retired after a 32 year career in aerospace, 10 years as an executive. I am back in school getting a 2nd Masters degree, this time in Public Health. I advocate for lung cancer as a volunteer for the American Lung Association, for the National Lung Cancer Partnership, on twitter as @findlungcancer, and for several Hartford CT area hospitals with their lung cancer screening programs. I lost my husband, Dan, to lung cancer on April 12th, 2013 after an 18 month hard fought battle. Dan had all the risk factors for lung cancer. He was 69 years old at the time of his diagnosis, he had quit smoking 11 years prior to his diagnosis, he had an 80 pack year smoking history, his sister had died of lung cancer at age 62 and Dan had COPD. Unfortunately, at the time of his diagnosis, lung cancer screening was not recommended.
Comments on the BMJ paper about the Canadian National Breast Screening Trial:
We had a 3 hour discussion in my UConn Chronic Disease Control class last week about the recent British Medical Journal (BMJ) paper on the 25 year follow up to the Canadian National Breast Screening Study. In attendance were 2 cancer epidemiologists, one a breast cancer expert, and an oncologist with breast cancer expertise. In conclusion, the consensus among the experts was the study did not provide enough credible evidence to change the recommendation for breast cancer screening in the US.
Key concerns raised with this study:
Other discussion points:
My “take-aways” from the discussion
Comments on lung cancer screening:
The most important point to consider when comparing lung cancer screening to Mammography or PSA screening is that lung cancer screening is different. Screening is limited to the high risk population and the gold standard randomized trial, the National Lung Screening Trial (NLST), showed a 20% mortality reduction with LDCT screening versus chest x-ray.
I don’t understand the derivation of your NNS of 950. The original paper published in the NEJM calculates the NNS as 320 for the NLST study population.
One of your discussion points focused on all-cause mortality being biased lower in the LDCT group, not because of incidental findings, but because of changed behavior in the LDCT group with false positives; for example smoking cessation. I do not think this biases the results. The results are a real, albeit, an unintended benefit for LDCT screening. The public health and medical communities have been continuously searching for ways to influence people to adopt healthy behaviors. It’s wonderful, if in fact, LDCT screening provides a “teachable moment” resulting in healthier behaviors and improved outcomes.
Your discussion about telling folks to quit smoking as a better alternative to lung cancer screening is flawed in that, more than 50% of lung cancer diagnoses are in former smokers. These are people who have already quit smoking. Their only hope for improved survival is for secondary prevention in the form of early diagnosis with LDCT screening.
Your discussion about older people not being screened due to overdiagnosis because of mortality due to other causes is disturbing. You seem to be advocating that when people reach a certain age, we should give up on any type of screening because they will probably die soon anyway. I was particularly shocked with your statement “What if, in essence, we save a lot of people from lung cancer who then die from a heart attack 6 months later?” This would imply we should not treat any disease with a 6 month or less prognosis; let’s just save the money, 6 months is not worth the expense to society. WOW. You criticize the USPSTF final recommendation to screen to age 80 as too old. However, you neglect to mention the USPSTF modifier that “screening should be discontinued once a person has not smoked for 15 years or develops a health problem that substantially limits life expectancy or the ability or willingness to have curative lung surgery”.
And finally you discuss how a physician patient discussion on lung cancer screening might go. I would like to add a few more scenarios to your hypothetical discussion.
The point is that each patient is unique and the discussion with the patient should be tailored to the risk profile for the patient. The discussion you portray would not be appropriate for my hypothetical patient, who yes, happens to fit the profile of my husband who died in April 2013 from lung cancer.
Lung cancer is the leading cause of cancer deaths in men and women in the US and worldwide. It is the second leading cause of all deaths in the US after cardiovascular disease. More people die of lung cancer than breast, colon, and prostate cancer combined. Five year survival at 16% is essentially unchanged since 1975. We finally have a screening test for lung cancer and if everybody would stop trying to discredit the test and just get out of the way we will save lives!
[This is a reblog of a post on the #LCSM blog. Reposted with permission]
The focus for the next #LCSM Chat at 8 PM Eastern (5 PM Pacific) on Thursday, February 27, 2014 will be “What do cancer patients want from their doctors and online support groups?” The moderator will be Dr. Jack West.
Online cancer support groups can provide a wealth of information and understanding for cancer patients, caregivers, and family members. Many in online forums find expertise and credibility among others who have traveled down the same road. “Expert patients” in these forums can provide an understanding and hope that even the best doctor can’t offer, because they’re living proof you can understand your treatment options, and your treatment can work. And online groups are available 24/7, for free.
However, different patients seek out different levels of information, both in these forums and with their doctors. Some want to know all the available facts, including survival data in the tables and figures shared among oncologists. Others prefer to trust their doctors and hope for good results. This leaves doctors wondering if providing a frank discussion of statistics (which might not be encouraging) would inform, confuse, or scare patients.
Also, different patients are comfortable with different levels of self-advocacy. Some express a strong desire for self-determination of their treatments, while others want a clear recommendation from a trusted oncologist about the a best way to proceed.
Given the diversity in cancer patient needs and wants, our upcoming #LCSM tweetchat on will focus on the following questions:
1) Do the shared experiences of patients provide value and credibility that can’t come from medical professionals?
2) Given the growing movement to give patients their data, should doctors share stats like survival numbers with the patients? If so, when?
3) Do engaged, empowered patients want a clear recommendation from their doctor, or a presentation of pros and cons so they can choose among the options?
We hope that those of you who use Twitter as a communication tool will join us by following the hashtag #LCSM on Thursday. Feel free to also comment here, before or after the tweet chat.
Upcoming #LCSM chat: What do patients want and need from online networks and their doctors?
by Dr. Jack West on cancergrace.org
ePatients: Engaging Patients in Their Own Care by Medscape
Society for Participatory Medicine
Are physicians ready for the e-patient movement? on KevinMD.com
This is a reblog of a post I wrote for the #LCSM website. Reposted with permission.
Anyone can get lung cancer. Screening for lung cancer with low dose CT scans (LDCT) can save thousands of lives every year. Many private health insurers already provide coverage for this screening.
Tell the Centers for Medicare and Medicaid Services (CMS) you want them to provide coverage too. On February 10, CMS opened a 30-day comment period to support their national coverage analysis on Lung Cancer Screening with LDCT. This comment period closes on March 12, 2014.
Please sign this petition to tell CMS to provide coverage for LDCT, and ask everyone you know to sign it too. The results of this petition will be submitted to CMS as a comment on March 11, 2014. You can help save thousands of lives!
Petition: http://www.change.org/petitions/centers-for-medicare-medicaid-services-cms-provide-coverage-for-lung-cancer-screening-with-ldct .
People might also want to provide a comment directly to CMS — especially those who are Medicare or Medicaid-eligible and who were either diagnosed with advanced lung cancer or are at high risk for lung cancer.
Comment directly to CMS here:
http://www.cms.gov/medicare-coverage-database/details/submit-public-comment.aspx?DocID=274&DocType=nca&DocName=Lung+Cancer+Screening+with+Low+Dose+Computed+Tomography&NCAId=274&bc=AAAAAAAAAAQAAA%3D%3D&
If you are a health care professional who deals with lung cancer or a medical center offering LDCT, please go to this link to read more about the type of information that would be most helpful to CMS, then provide a comment directly to CMS
http://cancergeek.wordpress.com/2014/02/18/call-to-action-performing-low-dose-ct-lung-cancer-screening-please-comment-to-cms/
.
For more information about why lung cancer screening with LDCT is important, read on:
Lung cancer is the #1 cancer killer in the world, and the #2 killer of all types in the United States (per the CDC). In 2012 more than 226,000 people received a new lung cancer diagnosis, and almost 160,000 died of the disease – that’s like a jumbo jet full of passengers dying every single day of the year.
Lung cancer kills so many in part because the majority of patients are not diagnosed until the cancer has already spread outside of the lung. Patients in the early stage of the disease rarely display symptoms.
Lung cancer screening with LDCT can decrease the high mortality rate of lung cancer by detecting the disease before symptoms appear and enabling patients to pursue a cure with surgery. An article in medical journal The Oncologist states “… a national LDCT screening program would save more than 18,000 lives annually.”
At this point, the guidelines recommend LDCT only for older people with high risk factors for lung cancer. Tobacco smoking is the greatest—but not the only—risk factor for lung cancer. An NIH-funded study of 53,454 current and former heavy smokers ages 55 to 74 showed screening for lung cancer using LDCT could reduce lung cancer deaths in that group by 20%.
LDCT is covered by some private health insurance policies, but it is not currently covered by Medicare or Medicaid. Anyone at any age can get lung cancer, but the risk of getting lung cancer increases with age. Older people (who are at higher risk for lung cancer) may not be able to pay for screening if it is not covered by Medicare and Medicaid.
Lung cancer screening with LDCT is now available in a growing number of medical centers. It is included in National Comprehensive Cancer Network guidelines and recommended by the U.S. Preventive Services Task Force, American College of Chest Physicians, American Cancer Society, American Lung Association, Lung Cancer Alliance, and other organizations focused on lung cancer.
It’s time early detection for lung cancer gets the same attention as other top cancers. Screening for breast and colon cancers increased both awareness and survival for these diseases.
Thank you for supporting the fight against lung cancer!
[This is a reblog of a post on the #LCSM blog. Reposted with permission]
Erasing the stigma of lung cancer is one of the goals of all advocates who fight for more lung cancer awareness and funding. But sometimes it’s hard to know how to go about it.
The focus of the #LCSM Chat on February 13 will be “Brainstorming: How Do We Erase the Stigma of Lung Cancer?” Imagine we have unlimited funds, political influence in all the right places, ready access to every medical professional, and all the trained, eloquent workers we need. What actions would erase the stigma of lung cancer?
Our moderator for this chat, Laronic Conway, will use these topics to get the discussion going:
To prepare for this chat, you might wish to read some of the articles about lung cancer stigma on our new “Lung Cancer in the Media” page.
Guidelines on how to participate in an #LCSM Chat can be found on the “#LCSM Chat” page of the #LCSM website. Hope to see you on Twitter!
On January 29, the launch event for the American Lung Association’s new national LUNG FORCE initiative occurred in Seattle. As stated on the LUNG FORCE website, “LUNG FORCE is a new national movement led by the American Lung Association with a singular mission: to unite women to stand together against lung cancer and for lung health.” ALA chose to focus on women because market research indicated that was the best way to break the stigma of lung cancer and bring it into public awareness. ALA’s aim for LUNG FORCE is to raise money for lung cancer research, education and advocacy. They are extremely responsive to the patients’ voice and are genuinely interested in promoting the concept that ANYONE who has lungs can get lung cancer, and NO ONE deserves to die from it.
Seattle is the launch city for the first LUNG FORCE Walk. I’m on the Patient-Survivor-Family Cabinet of the ALA’s Mountain Pacific chapter in Seattle. This chapter also has a Medical Professionals Cabinet, among them oncologist Dr. Howard (Jack) West, Medical Director of Thoracic Oncology at Swedish Medical Center and Founder of cancerGRACE.org (who was unable to attend the kickoff due to horrendous traffic); Dr. David K. Madtes. Director of the Lung Cancer Early Detection & Prevention Clinic at Seattle Cancer Care Alliance (an NCCN facility); and Dr. Steven Kirtland, Medical Director of the Thoracic Oncology Program at Virginia Mason Medical Center (and, coincidentally, my pulmonologist). We also have a cabinet of women business leaders.
I’m thrilled that an established, large national public health organization has chosen to join the effort to eliminate the stigma of lung cancer, educate people about symptoms, champion early detection, and promote research funding. Although ALA has long had a strong anti-smoking program, they are acutely aware of the need to keep it separate from LUNG FORCE to avoid promoting further stigma. I’m hopeful ALA is the Big Dog that will tip the scales and finally bring lung cancer into the public’s awareness.
And yes, the munchies were yummy!
Thanks to Hello Robin, Cupcake Royale, Trader Joes, and st. clouds restaurant for donating refreshments, and glassbaby for donating the meeting space.
Patients and Doctors Who Spoke at Seattle LUNG FORCE Kickoff 29-Jan-2014. I’m second from the left; my pulmonologist Dr. Steven Kirtland is third from right.
This 17-minute video captures the presentations at the kickoff event. I was the last of three patients who spoke at the event.
Gray Connections 