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.

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!

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.

IASLC STARS offers webinar for advocates on drug development process

The IASLC STARS program invites STARS alumni and anyone interested in cancer research advocacy to join us for a webinar about cancer drug development. 

When:               Monday August 29, 2022, at 11:00AM Eastern Time

Title:                Advocacy Opportunities in Cancer Drug Development and Regulatory Approval

Speakers:          Upal Basu Roy, PhD, MPH,
Executive Director of Research, LUNGevity Foundation
Janet Freeman-Daily, MS, Eng
cancer research advocate and STARS staff (moderator)

Languages:        English, with transcript translated into Spanish after the event

Learning objectives:

  • Acquire a high-level understanding of the drug development process and timeline
  • Identify differences in global regulatory approval pathways and how they impact drug access
  • Identify advocacy opportunities throughout the drug development process

Register (it’s FREE) at https://us06web.zoom.us/webinar/register/WN_EmO7XBH6SdqDgHfDA0DLQQ
After registering, you will receive a confirmation email containing information about joining the webinar.
Reach out to advocacy@iaslc.org for more information.

The International Association for the Study of Lung Cancer (IASLC) offers webinars, training and networking opportunities to lung cancer research advocates through its Supportive Training for Advocates in Research and Science (STARS) program.  Thank you to our STARS partner Research Advocacy Network and our 2022 STARS sponsors Lilly, Bayer, BMS, and Genentech for supporting this event!

ACTION ALERT! Please help increase federal research funding for lung cancer. #LCSM

GO2 Foundation for Lung Cancer (with the support of the entire lung cancer community) has submitted an appropriations request of $60M in the FY23 Defense Appropriations Bill with a goal to increase funding for the Department of Defense Lung Cancer Research Program (DOD LCRP) to $60M from its current $20M. The entire lung cancer community is joining forces to make it happen!

It takes only a couple of minutes to make your voice heard. But when all our voices join together, it becomes a ROAR.

Please click the link below and follow the instructions to tell your US Senator & Representatives to support $60 million for federal lung cancer research in 2023. Tell your friends & family. Please share widely on all your social media platforms.

HURRY! The House letter deadline is April 26 and Senate letter deadline is May 12, so don’t wait. 

Click here: Act NOW to request $60 million for #lungcancer research

When you see someone masked, please be kind

Today Washington’s state-wide mask mandate is gone (though masks are still required in some settings). When you see people still wearing masks, please don’t give us a hard time. You don’t know the health conditions we or people we love may have.

The mask mandate is gone, but the COVID-19 virus is not. Medical research has collected data that shows certain populations are at higher risk of severe or fatal COVID-19 if exposed to it. Older people, especially those over age 80, have less effective immune systems.

Sometimes people are at greater risk because of physical issues. My lungs have been damaged by radiation treatment for lung cancer, and are unable to clear nasties as effectively as they once did. I’ve had pneumonia several times since my cancer diagnosis nearly 11 years ago. Hospital data shows people with some chronic conditions like heart disease and diabetes are more likely to get severely ill if they get the virus.

Some people are at greater risk due to compromised immune systems. Medical treatments like chemotherapy or high-dose steroids impair the immune system. Very young children have immature immune systems.

It’s not a given we’ll get severely sick, but the odds are not in our favor. We’re into risk reduction. Medical data show KN95 and N95 masks reduce the likelihood of catching COVID-19. Our doctors suggest we should wear masks when in public. The CDC recommends we continue to wear masks. More data is needed for those of us at increased risk before we take off our masks.

When you encounter someone wearing a mask, or resistant to indoor dining in restaurants, or unwilling to attend a event with a large group, please be kind.

All good things … The Sunset of #LCSM Chat

“All good things must come to an end.” Please join us for our last-ever #LCSM Chat on Thursday December 2, 2021 at 5 pm Pacific. Take time to check in, reminisce & come together as a community one last time.

I’ve been a co-moderator for #LCSM Chat since shortly after it started in 2013. I must admit, it’s hard to see it end. I created its website. I wrote/posted most of its blogs. I worked with guests to create patient-friendly content. I’ve made many friends and connections. But it’s time for this to happen. It just represents a change in priorities–I have more than enough advocacy, writing, and personal projects to keep me busy.

So, on to what’s next.

Please read more at the #LCSM Chat blog to understand why this is a good time to “sunset”:
https://lcsmchat.com/2021/11/19/all-good-things-the-sunset-of-lcsm-chat/

Help me celebrate nine years of effective targeted ROS1+ cancer therapy! 

In May 2011—over 10 years ago–I was diagnosed with advanced lung cancer.  At that time, chemo and radiation were the only approved first line treatments for advanced or metastatic lung cancer. Despite undergoing chemo and radiation (twice), my cancer spread to my other lung and became metastatic. I was not inspired by the five-year survival rate for metastatic lung cancer patients back then—it was around 2%.

However, in early 2011 a small clinical trial for a targeted therapy pill called crizotinib (trade name Xalkori) had begun for ROS1 positive (ROS1+) lung cancer. This cancer is driven by an acquired alteration in the ROS1 gene. 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!

In the fall of 2012, I arranged to have my tumor tissue tested and discovered my cancer was ROS1+.  I mentioned the clinical trial option to my oncologist, and he recommended I join the trial (even though it required travel) because the preliminary trial results looked promising. All he could offer me otherwise was a lifetime on a chemo that didn’t make me feel much like living.

I enrolled in the trial in Denver, Colorado—over 1000 away from home—on November 6, 2012, and hoped for the best.

I’m still here thanks to research. Today marks 9 years since I took my first crizotinib pill. I have had No Evidence of Disease (meaning no cancer shows up on any scans) ever since.  Although I’m incredibly grateful to be alive and have a relatively normal life with tolerable side effects, I’m always looking over my shoulder.  No one can tell me if I’m cured, because few others have been on the drug this long.  Most patients find their cancer eventually becomes resistant to crizotinib and their cancer resumes growing.  The population of ROS1+ patients is relatively small (only 1-2% of lung cancer patients have ROS1+ cancer), so research on our type of cancer is sparse. We have some clinical trials in process, but no second line targeted therapy has yet been shown effective enough to obtain any government approval.

That’s why Lisa Goldman, Tori Tomalia (may she rest in peace) and I–all people who had ROS1+ lung cancer–decided to do something about it.  In the spring of 2015 we created a Facebook group for patients and caregivers dealing with ROS1+ cancer, and eventually formed a nonprofit known as The ROS1ders.  Our mission is to improve outcomes for all ROS1+ cancers through community, education, and research.  We have almost 800 members spanning 30+ countries, and are considered experts in our disease by some of the top oncologists in the world.  We’ve already helped create new models of ROS1 cancer that researchers have used in published research.

We’re now planning a research roundtable in December to explore ways to collect real-world data on ROS1+ cancers, and will be hosting a ROS1 Shark Tank event next spring that will award two $50,000 seed grants for new ROS1 projects. We’re aiming to raise $100,000 this year to fund our work.

Cancer research advocacy is my passion. I’m able to use my skills and time to help make a difference for hundreds of other people living with ROS1+ cancers. It’s a purpose that keeps me going despite the ever-present specter of potential recurrence.

Won’t you help me celebrate my 9th anniversary on my targeted therapy pill by donating to The ROS1ders?  It’s easy—just click this link and donate on my Network for Good page. It’s tax deductible. (Here’s the link again: https://ros1ders-inc.networkforgood.com/projects/131093-janet-freeman-daily-s-fundraiser )

I know there are many worthy charities asking for money this time of year. Any small amount you can give will help accelerate research for hundreds of ROS1ders worldwide who, like me, are dying for more treatment options.

Thank you for your support! 

Nominate a CURE #LungCancer Hero by June 30, 2021

Show your appreciation for an individual who goes above and beyond to make a difference in the lives of those affected by lung cancer. If you know a hero who has inspired change, exemplified compassion or brought newfound hope to you or someone you care for, share their story by submitting an essay nomination for the 2021 Lung Cancer Heroes® awards. This is only the second year this award has been offered.

Submit your nomination by June 30, 2021 here: https://event.curetoday.com/event/d49340bf-0224-4cb0-974c-9ad4633de436/

Have expensive cancer meds that you can no longer use?

Many of my friends who have lung cancer take targeted therapy pills. Mine costs $17K per month when not covered by insurance. Some drugs cost even more.

Unfortunately, most all patients who take targeted therapy pills see their cancer eventually start to grow again. These patients often must change to a different anti-cancer therapy. When a patient has to change therapies, they may be left with unused medications.

Patients on expensive medications HATE to throw out their cancer drugs when those same drugs might help someone else live longer or more comfortably.

Some US states will allow “prescription reuse” — unopened cancer drugs can be donated for use by a different patient. As the map shows, state laws on this subject vary significantly, and not all states that have enacted prescription reuse laws have operational programs that enable reuse.

Why isn’t this easier? Why can’t I just drop off my unused pills at a pharmacy and know they’ll get to someone who really needs them but can’t afford them?

If you wish to donate unneeded cancer drugs, check with a local pharmacy or prescriber for practical advice on what may work in your situation, in your state. If your state has no operating program, contact your state legislators.

What a great opportunity for patient advocacy to make a difference!