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.

Editing in the age of precision medicine

I want a plug-in for Siri on my iPhone that recognizes the names of all cancer drugs. I’m getting really tired of correcting “and tractor new” (entrectinib), “croissant live” (crizotinib), and “a lot of them” (lorlatinib). You should see what Siri gives me when my chemobrain is too tired pronounce the longer ones correctly! I still can’t wrap my tongue around the generic name for Tecentriq. 

Feel free to share your Siri/Cortana/Dragon medical transcription snafus in the comments.

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!

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.
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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 …

#LCSM Chat Topic 5/4 — The PDQ on MTBs: Why are multidisciplinary tumor boards important in #lungcancer?

This is a reblog of a post I wrote on lcsmchat.com.

Lung cancer is a complicated disease.  Diagnosing and treating complex cases can require skills that cross a variety of medical specialties. Larger medical centers and hospitals may decide to discuss complex cases in tumor boards that include physicians that represent a variety of medical specialties.

Our May 4, 2017, #LCSM Chat (at 8pm Eastern, 5pm Pacific) will focus on defining what a multidisciplinary tumor board (MTB) does, who is involved, and why MTB are important in the treatment of lung cancer.

The National Cancer Institute defines a tumor board review as:

A treatment planning approach in which a number of doctors who are experts in different specialties (disciplines) review and discuss the medical condition and treatment options of a patient. In cancer treatment, a tumor board review may include that of a medical oncologist (who provides cancer treatment with drugs), a surgical oncologist (who provides cancer treatment with surgery), and a radiation oncologist (who provides cancer treatment with radiation). Also called multidisciplinary opinion.

Some of the medical doctors with specialized training that might participate in an MTB are:

  • Medical Oncologist: specializes in diagnosing cancer and treating it with medicines
  • Pathologist: specializes in identifying diseases and conditions by studying abnormal cells and tissues.
  • Pulmonologist: specializes in the diagnosis and treatment of pulmonary (lung) conditions and diseases.
  • Radiation Oncologist: specializes in treating cancer with ionizing radiation
  • Radiologist: specializes in diagnosing and treating diseases and injuries using medical imaging techniques, such as x-rays, computed tomography (CT), magnetic resonance imaging (MRI), nuclear medicine, and positron emission tomography (PET)
  • Thoracic surgeon:  specializes in the surgical diagnosis, staging and treatment of cancer in the thorax (chest)

Moderator @JFreemanDaily will lead our discussion using the following questions:

  • T1: What does a multidisciplinary tumor board (MTB) do? Why is it important in #lungcancer treatment?
  • T2: What types of #lungcancer cases can benefit by MTB review?
  • T3: Who should be involved in an MTB? What medical specialties are usually represented?
  • T4: How often does an MTB reach a consensus about diagnosis and treatment recommendations in #lungcancer?
  • T5: What can patients do if their hospital does not have an MTB? What is the role of telemedicine?

Please join us for this valuable discussion. If you’re new to tweet chats, this primer will help.

Did Lung Cancer Claim Your Loved One? Invest 20 Minutes to Help Researchers Find New Treatments!

If your loved one was treated for lung cancer at a community hospital, and has since died, you can help find new lung cancer treatments that might spare other families the anguish you’re feeling.

Lung cancer is the biggest cancer killer. Fortunately, researchers have discovered several new therapies that are helping to turn metastatic lung cancer into a chronic illness instead of an automatic death sentence.  Some of these therapies are effective for 70-80% of patients whose tumors have certain biomarkers .

Unfortunately, not all types of lung cancer have such effective treatments — yet.  Researchers need to find more lung cancer biomarkers and develop more drugs to target them. Discovering these biomarkers and new therapies requires studying LOTS of lung cancer tumor tissue.  If more tumor tissue from different patients were available for researchers to study, we might find new biomarkers and effective targeted therapies faster.

How can I help?

If your loved one was treated for lung cancer at a community hospital, and has since died, you can help by donating your loved one’s archived tumor tissue. 

Researchers usually obtain tumor tissue from lung cancer biopsies and surgeries performed at their academic cancer centers.  However, most lung cancer patients (about 80%) are treated at community and clinics, not academic cancer centers.  Those hospitals generally just archive any tumor tissue that is not needed for guiding patient care, and destroy those tissues five to ten years after the patient has died.  This means a lot of tumor tissue that could be used for finding new lung cancer therapies never gets to researchers.

The National Cancer Institute’s Lung Cancer SPORE at the University of Colorado (I’ll call it CU Lung SPORE for short) aims to help lung cancer researchers find cures faster.  Like other NCI SPOREs, CU has a biorepository (some people may call it a biobank) where they store patient specimens and medical records.  The biobank provides the tissues along with the important clinical background to scientists studying new ways to treat lung cancer, not only from the University of Colorado, but to institutions all around the country. Researchers can search for available specimens and request them for research projects.

The CU Lung SPORE created a pilot study to collect archived tumor tissue and medical records of deceased lung cancer patients, and place these in their biobank so that researchers can use them.  This study focuses on deceased patients because they have no further need of the tissues (living patients may need their specimens for tumor testing later).  The study needs five to ten more family members to submit signed release forms so we can complete the pilot study and assess whether this a feasible way to gather more lung cancer tumor tissue for research.

HIPAA laws forbid a research center from asking patients or family members about donating tissues and medical records if the patient wasn’t treated at their facility. But advocates (like me) CAN ask.

What do I have to do?

To participate, all you need do is:

  • Download the release form (by clicking on this link Family member Release Form (revised 2016-06-23) and fill in some information about you, your loved one, and where your loved one was treated,
  • Sign the release form, and
  • Mail the completed, signed release form to:
    • Mary K. Jackson
    • Team Manager – Specialized Program of Research Excellence [SPORE]
    • University of Colorado Cancer Center
    • 13001 E 17th Place MS B-189
    • Aurora, CO 80045

Filling in the release form only takes about 20 minutes (assuming you have to look up the contact information for the hospital).  Pretty easy, isn’t it?

What happens next?

The SPORE will contact the hospital where your loved one was treated and request your loved one’s archived tissue and medical records. Once these documents are received at CU, they will be reviewed by the study team, de-identified (which means personally identifying information is removed), and placed in the CU Lung SPORE’s biobank.

THAT’S IT!

PLEASE consider donating your deceased loved one’s archived lung cancer tissue and medical records for research through this project. You can learn more by contacting me (the patient advocate for the CU Lung SPORE) at jfreeman.wa@gmail.com, or the CU Lung SPORE at the address above.

Do it to honor your loved one.  Do it for the next family stricken by lung cancer. Whatever your reason, please do it.  We’ve lost too many to this disease.

 

Note: This research study’s official project title is “Patient-Initiated Biobanking of Deceased Lung Cancer Patient Tissues” and its study number is COMIRB# 15-1294.  It is not a clinical trial dealing with live patients, so you will not find it listed on clinicaltrials.gov.  

Life Between Scans: Call for Submissions

book-image-with-text

We are happy to announce a new upcoming anthology tentatively titled “Life Between Scans: How to Live with Lung Cancer as a Chronic Illness.”  Its personal essays will show how metastatic lung cancer patients and their loved ones cope with the emotions and situations that arise when you’re taking new precision medicine treatments and know your lung cancer could become terminal at any time.

A group of award-winning lung cancer bloggers is developing this book to share honest personal experiences, offer hope for those dealing with metastatic lung cancer, raise awareness and positive impressions of our disease, and encourage investment and participation in lung cancer research and supports.  These stories will highlight lung cancer patients on precision medicine approved drugs and clinical trials who are living well for months or years longer than those on traditional chemotherapy.

All submissions will be reviewed by the group, with assistance from editor Ann Vandermeer, who has extensive anthology publishing experience both for New York publishers and as a freelancer. Ann has graciously donated her time to this project in support of cancer patients.

Example Essay Topics (not a complete list)

  • The shock of diagnosis or cancer progression
  • Handling stigma and guilt
  • Taking care of yourself (as patient, or as caregiver)
  • Telling (or not telling) others about the cancer
  • “Why me?”
  • Making the choice to live despite the downsides
  • What matters most now? How has that changed after cancer?
  • Making major treatment and care decisions
  • Finding the next step for treatment
  • Why you did (or didn’t) join a clinical trial
  • How manage emotions: anxiety, fear, uncertainty, depression, need for control
  • Becoming an engaged patient or advocate
  • Dealing with symptoms or side effects (pain, cognitive issues, losses, etc)
  • Having “The Conversation” with family about end of life
  • Being the first on a new treatment
  • When your doctor doesn’t have much experience with your treatment or cancer
  • Finding supports or dealing with loss of supports (e.g; loss of friends)
  • Use of complementary therapies (massage, acupuncture, meditation, etc.)
  • Transitioning to hospice
  • Navigating the healthcare system (e.g., coordinating specialists)
  • Effective communication with healthcare providers
  • Value of patient communities
  • How to stay on top of science and research without getting overwhelmed
  • How do you forget about cancer and enjoy life in the moment?
  • Role of the care partner in chronic disease management
  • Financial toxicity
  • How can caretakers and patients both speak honestly about how they feel?
  • Humor as a diversionary/coping mechanism

Submission Deadline

July 1, 2017

Submission Guidelines

  • Essays should be between 750 to 2,500 words. Accepted file types are MS Word, .rtf, and .txt. Please use 12 point Times New Roman font, double spaced, and ensure your legal name is included at the beginning of the file.
  • Essays must be written in first person, and should reflect actual personal experience of either a metastatic lung cancer patient or a primary caregiver of a metastatic lung cancer patient.
  • Essay can be either original work not previously published, or material you personally published on your online blog or in an online support group.
  • Essays from deceased patients may be submitted if the patient meets the criteria above AND the person who is submitting can demonstrate they have the legal right to submit the essay.
  • If a metastatic lung cancer patient/caregiver blog post has touched or inspired you, please submit a link via email so we can review it and contact the author.
  • Each submission will receive an email acknowledging its receipt

Rights and Payments

  • Acceptance decisions will be made by late summer 2017. If your submission is accepted, you will be notified by email along with a contract for consideration.  If you do not receive a notification by the end of September 2017, your work was not accepted for publication.
  • We will pay $0.10/word on final edited word count for nonexclusive worldwide right to print, republish, or reprint the complete anthology in any language or format. Payment will be made upon final edit.
  • Contributors will receive two copies of the book.
  • If authors have other questions about rights or payments, please contact us before submission. We want to make sure all concerns are addressed.

How to Submit

Send an email to lifebetweenscans@gmail.com and include the following:

  1. Your personal essay (as an attachment)
  2. A BRIEF biography (no more than 100 words) for inclusion in the book. At a minimum, this must include:
    • your name (a pen name is OK, but a real name will have more impact for readers)
    • date of diagnosis
    • type of lung cancer (as specific as possible)
    • where you live (state & country, with city if possible)
    • link to your blog or website (if you have one)

    You might also want to include your age at diagnosis, relationship status (married, single, committed partnership, etc.), ages of children at diagnosis, and clinic(s) where you were treated. This information can help inspire readers.

  3. For payment purposes, please provide the following in the body of the email:
    • your legal name
    • mailing address
    • preferred contact email
    • contact phone

Please be sure the contact email and/or phone will be answered even if you are unavailable.

Where will the book be published?

We are negotiating with a small press to get the book published.  We expect the book will be available in hardcopy and in electronic format from online sellers.

What will happen to the income from book sales?

One of our bloggers is funding this project personally. After the payments to authors and production costs are covered, proceeds from the sale of the book will be designated in perpetuity to support lung cancer research at the University of Colorado, one of the premier targeted therapy lung cancer research centers in the world.

Who is on the editorial board?

In alphabetical order:

Last update: 6-Mar-2017 16:00 Pacific Time