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.

Whew!

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.

Join the Life & Breath Rally for Lung Cancer in DC on Nov 2

Please register for your free ticket(s) here:
https://LABRally.eventbrite.com/  

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.

Email: lablifeandbreath@gmail.com
Facebook: https://facebook.com/lablifeandbreath/
Instagram: lifeandbreathrally
Twitter: @LABLifeBreath

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 Capitolhttps://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!

And they said streaming was easy …

I feel so 21st century. I’m streaming my first Amazon Prime movie on our home TV.  Not a bad bit of tech work for a 60-something.

It’s amazing how many choices, purchases, technologies, services, and connections this effort required:

  • research and buy a digital TV (years ago)
  • research and buy a Blu-Ray player (many months later)
  • research and contract with a high-speed Internet service provider
  • upgrade Comcast service to faster Internet
  • order upgraded cable modem from Comcast
  • activate new cable modem and upgrade its software
  • buy new Wi-Fi router with range and bandwidth to reach the TV
  • ensure I have all necessary cables (whoops, another trip to the tech store)
  • set up router
  • wire modem to router and confirm connection
  • set up home Wi-Fi network
  • wire TV to Blu-Ray player and confirm connection
  • connect Blu-Ray player to home Wi-Fi network
  • update Blu-Ray player software (from version 2007 to 2021)
  • use networked PC to subscribe to Amazon Prime
  • install Amazon app on Blu-Ray
  • find Amazon app amidst other apps on Blu-Ray player
  • login to Amazon app
  • use Blu-Ray player find and select a movie
  • start streaming …

… and discover that so many neighbors are streaming movies at the same time on Comcast that your movie won’t play.

Who knew home entertainment could be so complicated?

Good thing fixing healthcare only takes some quick legislation.

The start of something big …

I’m excited to be one of the handful of patients speaking in a public forum tomorrow evening at The Broad Institute in Boston, Massachusetts (well, technically, Cambridge). We’ll be sharing our “Lessons for Creating Patient­‐Researcher Partnerships to Accelerate Biomedical Progress.” I get to talk about the founding of the ROS1ders and the Global ROS1 Initiative.

A host of engaged patients, cancer researchers, and other healthcare types, among them the American Society for Clinical Oncology and the Biden Cancer Initiative (which grew out of the Cancer Moonshot) will be there. This could be the start of something BIG. At a minimum, it will spontaneously generate a HUGE group hug with advocate friends old and new.

Coincidentally, we’ll be staying at a hotel just a few blocks from my old MIT dorm during MIT Reunion Weekend.  I’ll be too late for reunion festivities–attending the ASCO Annual Meeting last week took priority.  Still, I’ll wander over on my knee scooter (still healing after foot surgery) in the 90º-plus heat.  I ought to be able to reflect on my crazy undergrad days on Third East in the East Campus dormitory for at least five minutes before seeking refuge inside an air-conditioned building.  Next year I plan to indulge in my 40th MIT Reunion–I didn’t expect to live long enough to see it, and I’m going to take full advantage of the the opportunity!

Happy Silver Anniversary, Gerry!

‪Thanks to cancer clinical trials,  engaged patients, and a devoted spouse, I have lived to see my silver wedding anniversary.

I don’t know which is more amazing – that I’ve lived six years beyond a diagnosis of advanced lung cancer (and currently have no evidence disease), or that two strong-willed, opinionated engineers have shared a house for 25 years without killing each other.  I think the second might be a rarer occurrence.

My cancer diagnosis definitely put a strain on our marriage, and I know Gerry struggled at times as he watched me experience the discomforts, losses, dashed hopes, and side effects of living with lung cancer as a chronic illness. Oddly, cancer has also strengthened our marriage.  It has caused both of us to focus more on what’s really important, to be more tolerant of each other’s idiosyncrasies (we got a lot), and to find more ways to spend time together.

My husband has gradually become more involved in supporting my patient advocacy work. He’s met people that I have helped, and he can see the purpose and meaning it gives me. He said he wanted to help me have that in my life. (sniff sniff) Appropriately, hubby and I going to celebrate our 25th anniversary at the ASCO Annual Meeting in Chicago this weekend. He’ll be escorting me to events since I’ll still using a knee scooter after foot surgery (isn’t he sweet?). We’re hoping he’ll be able to watch me give my first-ever ASCO presentation, despite having only a guest badge.

So, happy anniversary, Gerry.  Thanks for sticking with me for better or worse. Love you!

Gerry and Janet blowing off steam in Yellowstone, 2013.


P.S. I’m not a TOTAL nerd. We will also be celebrating our anniversary with a Mediterranean cruise in the fall.  See, there are really cool historical sites in Rome, Athens, and Israel …

NCI Features the ROS1ders on its CCG Blog

Today the National Cancer Institute published this blog about the ROS1ders on the Center for Cancer Genomics “Insights and Innovations” blog.  The Global ROS1 Initiative is underway!  I’m glad I was able to help share our story.
———————————————-

ROS1+ Cancer Patients Partner to Increase Research

May 23, 2017, by Janet Freeman-Daily, MS, Eng

In May 2015, I met four friends in a bar near Washington, D.C., to talk about not dying of cancer.

This conversation planted a seed that has grown into The Global ROS1 Initiative, a patient-researcher partnership that is redefining research into ROS1-positive (ROS1+) cancer. The Initiative includes a group of over 150 patients in 19 countries; two patient-focused foundations, Bonnie J. Addario Lung Cancer Foundation (ALCF) and Addario Lung Cancer Medical Institute (ALCMI); academic cancer researchers; and industry. The Initiative includes more than twice the number of patients enrolled in any ROS1 clinical trial thus far.

How did this happen? Let’s return to the bar. Read More …

Six years with lung cancer: finding the meaning

I was eating a typical breakfast this morning, at our typical time, in the typical place, when I realized today was not typical.  Today is my six-year cancerversary.

Took me a moment to digest that thought.

Considering how shocked I was to hear my diagnosis of advanced lung cancer on May 10, 2011, I’m surprised this day seems typical.  Perhaps I shouldn’t be.  I’ve been living with No Evidence of Disease for 52 months and counting (thanks to a clinical trial, medical research, and other patients), and my scans only happen twice a year.  I might almost ignore the fact that I’m still a cancer patient in active treatment if not for the persistent side effects of previous treatment, daily medication ritual (seven different meds for cancer and side effects), and occasional bouts of pneumonia and coughing.

My time with lung cancer has been eased by the wonderful friends I’ve made along the way in the lung cancer community.  Some of my favorite experiences are watching them discover how to combine their passion for changing lung cancer outcomes with their unique skills and interests to meet a need.  Whatever skills they may value and enjoy, they can use them to find a purpose that gives meaning beyond a lung cancer diagnosis. Maybe it’s making memories with family and friends, creating a blog or piece of art, supporting newly-diagnosed patients and their caregivers in person or online, telling their lung cancer story in public, volunteering for a lung cancer advocacy organization, writing to lawmakers, conducting a fundraiser, or serving as a research patient advocate.  The needs in the lung cancer community are huge, and there are many ways to make a difference.  A caring act need not be global to be great. And the funny thing is, when you’re caring for others, one’s own issues seem smaller and more manageable.

Since my diagnosis, I’ve gone through this discovery process.  I found a way to combine skills I enjoy using (for me, it’s learning and communicating about science) with my passion to improve lung cancer outcomes for myself and others.  I’m making a difference in the world doing something that I love.

My evolution happened in phases, punctuated by seemingly random events that invited me into the next phase:

  1. Cancer Patient (May 2011)– I did what the doctor told me.
    (I moved to the next phase when my cancer became metastatic and I realized no one knew how to cure me. I had to be my own advocate.)
  2. Engaged Patient (October 2011)– I learned about my disease from online forums and other patients, actively discussed treatment options with my medical team, and shared my experience with other patients.
    (I moved to the next phase as I realized that sharing my lung cancer experiences was useful to others, and that perhaps I could do more.)
  3. Patient Advocate (April 2012)– I shared my story and patient perspective in increasingly more public venues, and began to work with advocacy groups.
    (I moved to the next phase as I realized I had accumulated more knowledge about treating lung cancer than some doctors I encountered.)
  4. Expert Patient (June 2013?)– I read new lung cancer research, discussed it with knowledgeable medical experts, and shared what I’d learned with other patients and carers.
    (I moved to the next phase as I discovered opportunities for sharing my story, knowledge and skills with healthcare, legislative, and policy making professionals through conferences, advocacy organizations, and online portals.)
  5. Patient Activist (October 2013)– I began actively pushing for changes in funding, public policy, and the healthcare system regarding lung cancer.
    (I moved to the next phase as I made contacts within the broader lung cancer community and saw opportunities for collaborations.)
  6. Research Partner and Activist (September 2015)–I now work with patients, caregivers, clinicians, researchers, pharma, advocacy groups and policy makers to improve lung cancer outcomes, and help other patients and caregivers in their explorations of advocacy.

As I’ve evolved, I’ve found purpose.  This purpose gives me focus, and helps me think myself as something more than just a lung cancer patient.  I get up most days knowing I have something useful to do, no matter how I feel physically.

I would not say cancer gifted me with this purpose.  The challenges of cancer only forced me to reassess what matters most by confronting me with a foreshortened lifespan and loss of abilities.  We all must deal with some level of adversity in life.  It’s how we handle that adversity that defines us.  I truly believe the Native American proverb:  “The soul would have no rainbow if the eyes had no tears.”

I’m not just surviving with cancer, I’m living.  I’m fulfilling a purpose, for as long as I can, however long I may have.

Here’s to finding the meaning.