An opportunity to support patient-driven ROS1 cancer research

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.

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?

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 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).

Health risks of open enrollment

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.