Why don’t people trust medical science?

I’ve been thinking about why some people don’t trust medical science and doctors in the US (and, increasingly, globally).

I’m not talking about issues with the medical system like ethical lapses, insurance snafus, cost, poor communications, malpractice, politicization, etc. I want to talk about issues with science.

I think a major source of distrust in medical science lies in the fact that no two human bodies are exactly alike–not even two identical twins. Stay with me on this one–it takes a while to explain.

For some medical procedures, like setting a broken bone, results are pretty predictable for the vast majority of people. However, when it comes to more complicated health issues like cancer and viruses, it’s less certain that medical science can generate specific results due to variations in the human body, nuances in the disease, and the fact that we don’t know everything about how the body or the disease works. (I’ve got 13 years as a cancer patient to support me on this).

The scientific process of discovery is the same in all areas of science, but the level of evidence available and predictability of results can vary depending on what’s being studied. In the engineering world where I was trained, once a physical law (e.g., the behavior of gravity on earth) has been confirmed by many observers, one can rely on it to remain true–at least until new data suggests the law may need to be revised.

The same is not true in medical science.

In medical science (particularly in drug development), a response to treatment in one person does not guarantee the same response will occur in another person who has the same condition. A person’s response can vary due to differences in the body, the environment, other health issues, or even the treatment process. This is why anecdotal evidence is not considered reliable evidence in medical science (although an individual response might indicate something is worth studying). A treatment must produce a similar response in many people to be considered effective–and even then, it may be effective only in people with certain characteristics. Based on decades of cancer research and treatment, claims of “This cancer treatment is guaranteed to work for EVERYBODY!” should generate significant skepticism.

If a hundred studies in engineering produce the same result, we trust the result will be true for all future studies. However, if a medical treatment is effective for 100 people, it still might not be effective for the 101st person. In the case of viruses (which mutate and may have as yet unknown effects on the body), medical evidence can tell you whether a vaccine can reduce your risk of getting infected/sick/dying from the virus, but it’s rare to get exactly the same results for all people.

People want science to be absolutely true, like engineering. When you turn on your stove, you trust it will generate heat for cooking. If it doesn’t work, it’s the machine’s fault, not the science.

But in medicine, the thinking is different. “The doctor said this treatment could keep me from getting sick. I still got sick. The treatment didn’t work, the doctor doesn’t know what they are talking about, the science is bad.”

Perhaps the lack of certainty makes medical science untrustworthy to some. And therefore “science” itself is bad.

How to fix this? Still thinking on that.

I’m a panelist for an FDA “Conversations on Cancer “!

Tomorrow (January 10, 2024) I will speak on an FDA panel as one of the patient advocates, along with clinical investigators and oncologists. The discussion will highlight transformative oncology drug approvals in 2023 including one for ROS1+ cancer (my type of cancer).

Topics we will discuss include patient and investigator perspectives on their experiences with these drugs, impact on patient’s prognosis and quality of life, how these drugs will change the treatment landscape, and barriers to access.

Hope you will tune in! You can register at: https://www.surveymonkey.com/r/FTYFN3H

FDA plans to post archived webcast of this Conversations on Cancer program at: https://www.fda.gov/about-fda/project-community/conversations-cancer

Edit to add 13-Jan-2024: The video is now available at https://www.youtube.com/watch?v=LSySqh2z-_A

Help The ROS1ders fund more research into ROS1+ Cancer!

Help me celebrate ELEVEN years of effective ROS1+ cancer targeted therapy by donating to The ROS1ders nonprofit through the Paypal Giving Fund ( NO ADDED FEES):
https://www.paypal.com/donate/?hosted_button_id=DH4CD2W3QQUKC

The backstory:

In May 2011 I was diagnosed with advanced lung cancer. At that time, surgery, chemo and radiation were the only treatments available. However, a small clinical trial had already begun for a targeted therapy pill called crizotinib. This pill that sounded like an alien seemed to inhibit ROS1+ cancer in about 80% of people in the trial. That was amazingly effective for a cancer drug!

I joined that trial, and as of yesterday, I’ve been on crizotinib for 11 years. Yes, I’m an outlier. While this drug has worked well for me, current targeted therapies don’t work well for everyone, and most people eventually develop resistance. We need more research and treatment options.

The ROS1ders (a nonprofit I cofounded) is funding research into ROS1+ cancers so all patients can one day have great treatment outcomes. This year we funded two $75,000 ROS1+ Cancer Innovation Awards. We are aiming to raise $225,000 so next year we can fund three awards.

I’m in Boston today, where I spoke to a pharmaceutical company that has new ROS1 drug in clinical trials, and met with a researcher who will be starting a new study about my type of cancer. Please help me fund more research to find better treatments for my rare type of lung cancer. Thanks for your support!

Register for an IASLC STARS Webinar on October 30!

The IASLC STARS (Supportive Training for Advocates on Research and Science) webinar will include a sampling of patient advocate research abstracts presented at the 2023 IASLC World Conference on Lung Cancer (WCLC23) in Singapore. A live Q&A session will follow, moderated by lung cancer patient and research advocate Janet Freeman-Daily. The speakers are Mentors for the 2023 IASLC STARS program:

• Upal Basu Roy, PhD, MPH, Executive Director of Research at LUNGevity Foundation
• Andrew Ciupek, PhD, Associate Director of Clinical Research at GO2 for Lung Cancer
• Jill Feldman, MS, lung cancer patient and research advocate
• Anne-Marie Baird, PhD, president of Lung Cancer Europe (LuCE)
• Lillian Leigh, JD, lung cancer patient and policy advocate

Educational Objectives:

  1. Highlight range of research conducted by lung cancer research advocates and advocacy organizations. 
  2. Demonstrate effective communication of research topics to a broad audience. 
  3. Increase patient research advocates’ understanding of research abstract format and content presented at conferences.
  4. Raise awareness of research advocates contributions to improving patient care and outcomes. 

Live interpretation will be offered in these languages:

  • Chinese (Mandarin)
  • French
  • German
  • Greek
  • Japanese
  • Spanish (Latin America/neutral)

The webinar will be recorded and available for viewing afterwards in each offered language.

Please reach out to advocacy@iaslc.org with any questions.

REGISTER HERE!
https://www.iaslc.org/meetings-webinars/wclc23-you-presented-lung-cancer-research-advocates

A lung cancer care conundrum

I’ve just personally encountered a new-to-me health disparity in the lung cancer space. I’m not aware of tools in the healthcare system that can deal with it.

Lung cancer care was confusing and overwhelming for me when I was diagnosed at age 55–and I was willing and able to access my digital medical records, Google standards of care, and connect with online patient groups. Dealing with my medical appointments and side effects took over my family’s life during my first-line treatment. At least I had an available driver who could accommodate clinic visits that ran long, or could reschedule transport on short notice when radiation therapy was cancelled due to equipment glitches.

The average age for a lung cancer diagnosis is around 70. This means many people are more than 80 years old when diagnosed. How does someone who is legally blind from macular degeneration, hard of hearing, and in an assisted living facility navigate lung cancer care when they can’t read information in online portals, or readily follow verbal conversations with healthcare providers? How can they decide which treatment option will best meet their quality of life goals without reviewing accurate information?

If they don’t have a driver at their beck and call and can’t see to use smartphone or computer apps, how do they get to the array of medical appointments with different providers when they must rely on transportation systems for people with disabilities, which require users to schedule pickups at specific times, days in advance?

Asking for a friend.

Register Now for July 15, 2023 GRACE Targeted Therapies in Lung Cancer Patient Forum

This year’s Targeted Therapies in Lung Cancer Patient Forum is happening online Saturday June 15, and it’s FREE! Great way to learn about current treatment options for those eligible for targeted therapy.

This signature, live, virtual, interactive patient education event includes presentations and panel discussions covering general subjects relevant to all targets as well as breakout sessions on specific mutations of lung cancer. Save your spot here: [https://give.cancergrace.org/…/targeted…/e490332](https://t.co/8TDXsdjyp5)

My Cancer Research Advocacy Activities (May 2023)

Cancer research advocacy encompasses several types of activities and a broad range of skills. The needs of the lung cancer patient population alone are HUGE, and no one person or organization has the time, skills, or bandwidth to address them all. The featured image on this post is a range of tall mountains for a reason.

I believe that the only way to stay engaged in cancer research advocacy over the long haul is to employ skills you enjoy using on projects that have personal meaning for you. I try to focus on activities that allow me to use my unique skills and (hopefully) improve outcomes for the greatest number of patients.

Some activities require multiple hours every week–these are my primary projects. Some have intense demands of several hours over a few days or weeks; examples are advisory boards, preparing a talk, grant reviews, or journal articles. Others may only require an hour or two each month, such as a serving as a patient advocate for a research committee.

To give you a sense of what one cancer research advocate’s activities might be, I’ve listed below those in which I’m currently involved. If this looks like a lot, please keep in mind that each advocate has a unique set of health and personal circumstances that influence how much of their energy and other resources they are able to give to advocacy. In my case:

  1. I am retired, no longer have children at home, and have the luxury of choosing what I want to do with my time.
  2. I’m on a cancer therapy that has tolerable side effects and leaves me with energy to do more than focus only on my own healthcare.
  3. I get to use skills I enjoy (e.g., writing, speaking, analyzing), work with smart people who are dedicated and compassionate, and learn about subjects I love (science and technology).
  4. The connections and reputation I’ve developed over ten+ years of lung cancer patient advocacy have brought me opportunities about which I wasn’t even aware when I first began advocacy work.

Primary Projects (several hours every week)

  • The ROS1ders nonprofit (co-founder, president, and board chair)
    A global group of patients and caregivers living with ROS1+ cancer that seeks to improve outcomes for all ROS1+ cancers through community, education, and research.
  • IASLC STARS program (co-developer and consulting staff)*
    STARS aims to increase the number of patient research advocates (PRAs) equipped to provide accurate scientific translation and patient perspective for lung cancer research and policy.

Advisory Panels

  • Fred Hutch/UW/Seattle Children’s Cancer Consortium External Advisory Board*
  • National Cancer Institute (NCI) PE-CGS Network External Advisory Panel
  • NCI Cancer Moonshot Biobank External Scientific Panel
  • HICOR Value in Cancer Care Initiative (VCCI) Steering Committee
  • Patient advisory boards for industry*

Patient Research Advocate

  • University of Colorado Cancer Center Thoracic Oncology Research Initiative (TORI)
  • NCI Small Cell Lung Cancer Consortium
  • Fred Hutch Lung Specialized Project of Research Excellence (Lung SPORE)
  • NCI Technology Research Advocacy Partnership (NTRAP)
  • The BMJ (also known as British Medical Journal) patient reviewer
  • Guideline development with professional oncology organizations
  • Co-author on journal articles and other writing projects
  • Invited speaker/panelist for conference presentations*
  • Participation in PCORI and other patient-centered research projects

Advocacy Organizations

Professional Organizations

  • International Association for the Study of Lung Cancer (IASLC), Patient/Survivor member
  • American Society of Clinical Oncology (ASCO), Patient Advocate member
  • American Association for Cancer Research (AACR), Affiliate member

——————————-

Disclosures

When advocates provide value to projects, I believe they should be paid for their time, just as any other professional would be. I receive compensation for some activities (such as an honorarium for speaking); these are marked with an *. If an organization requires me to travel for a meeting, I receive compensation for travel expenses and often free conference registration.

Submit Your 2023 Cancer Care Team Award Nomination Today!

The IASLC Cancer Care Team Award honors multidisciplinary teams, as nominated by the patients they serve. Exceptional care teams offer the patient seamless and informed communication, as well as an individualized treatment plan based on not just the patient’s needs, but the patient’s wishes. The Cancer Care Team Award aims to highlight this kind of worldwide, outstanding care.

The IASLC Cancer Care Team Award was established in memory of Marilyn Holman, who passed away from lung cancer in 2016. By recognizing Cancer Care Teams across the globe, we hope to spread awareness and speak to the outstanding care that is possible for all lung cancer patients, from the time of diagnosis through treatment.

The IASLC invites and encourages individual patients with lung cancer and/or their caregivers to nominate a multidisciplinary care team who they feel provided exceptional care. Only IASLC Members are eligible to submit nominations for the Cancer Care Team Award. If you are not yet a member, CLICK HERE for information on how to join. IASLC Membership is complimentary for patients and their family members and caregivers. The deadline to submit nominations is April 26, 2023. An international panel will choose one winning team from each of the four regions – North America, Latin America, Europe, and Asia/ROW. Winning teams will be announced during the 2023 World Conference on Lung Cancer in Singapore (September 9-12, 2023).

Submit your nomination here.

I’m fine, just busy with research advocacy

Sorry I haven’t posted much in the past few years. It’s not because I’m sick — I still have no evidence of disease on scans after 10 years on the same targeted therapy for my ROS1+ cancer. It’s because I’ve been busy with living and with research advocacy projects.

Research advocacy brings the patient voice to research. By sharing the patient perspective with those engaged in cancer research, research advocates help keep research focused on what matters to patients with the goal of improving outcomes for patients.

For those interested in what research advocacy looks like, here’s an example.

I’m pleased to share that I will be presenting at the International Society for Biological and Environmental Repositories (ISBER) 2023 Annual Meeting on May 4, 2023, in Seattle. I’m one of the speakers in a session titled “Prioritizing Diversity, Equity, and Inclusion in Biobanking.”

I’ll be sharing my views on biobanking to enable research based on my advocacy experiences. These include serving on the External Scientific Panel for the NCI Cancer Moonshot Biobank; collaborating with The Broad Institute’s Rare Cancer Dependency Map Initiative; establishing the ROS1 Cancer Model Project; and learning about human research protection regulations and ethics during a term on The Secretary’s Advisory Committee on Human Research Protections (SACHRP).

If you’re an established lung cancer patient advocate and are interested in learning more about research advocacy, please consider applying for the IASLC STARS program.

Metastatic #lungcancer — effective targeted therapy for 10 years and counting!

Lung cancer research gives patients hope, time with loved ones, and better quality of life. Ten years ago today, I entered a targeted therapy clinical trial for my ROS1+ lung cancer, taking an oral drug called crizotinib (trade name Xalkori). I’m still taking it (it’s now approved by the FDA and in many other countries) and have had no evidence of disease since I started it. Pretty amazing, since I had been given an expiration date of 2 years at the outside for my metastatic non-small cell lung cancer.

In honor of Lung Cancer Awareness Month, please donate to lung cancer research. The ROS1ders will be offering research grants next year! Any amount will help. https://ros1ders-inc.networkforgood.com/projects/111398-fund-ros1-cancer-research

#LCAM #LCSM