Swimming in federal alphabet soup (SACHRP version)

I’m pleased to share that I’m now officially a federal employee–I’m a newly minted member of HHS OHRP SACHRP.

Say what? Let’s spell out the acronyms.

HHS = US Department of Health and Human Services (HHS) is an agency of the Executive Branch of the US Government. The Secretary of HHS is a member of the President’s Cabinet. The HHS mission is “to enhance and protect the health and well-being of all Americans.”

OHRP = Office for Human Research Protections (OHRP) is part of the Office of the Assistant Secretary for Health in the Office of the Secretary of HHS. OHRP “provides leadership in the protection of the rights, welfare, and wellbeing of human subjects involved in research conducted or supported by the U.S. Department of Health and Human Services (HHS).”

SACHRP = Secretary’s Advisory Committee on Human Research Protections (SACHRP) “provides expert advice and recommendations to the Secretary of HHS on issues pertaining to the protection of human subjects in research.”

So why does this matter?

I’ll know more about my role after I attend my first meeting in Washington DC at the end of July. I hope to provide a patient perspective on (and hopefully help influence) the conduct and ethics of cancer research and clinical trials. Three potential areas of clinical trials I’d like to see clarified are (1) reimbursement of patient expenses for cancer trial participation, (2) the use of social media during a clinical trial, such as communication between patients in the same trial, and (3) reasonable guidelines to increase patient access to test results generated by their samples and data sharing between research projects.

Below is the official announcement posted this morning on the OHRP listserv. I am one of seven new SACHRP members just appointed to a three-year term. I’m in a pretty accomplished group!

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OHRP wishes to express our sincere appreciation to all nominees who requested consideration for membership on the Secretary’s Advisory Committee on Human Research Protection (SACHRP).

We are pleased to announce the appointment of the following new members:

  1. Mary Ellen Allen, J.D.

Mary Ellen Allen is Assistant General Counsel, Specialist, Healthcare Law Group, at Genentech, Inc. She has extensive experience and expertise in human subject protections and clinical research, including FDA regulations and guidelines, privacy, GCP, compliance, diagnostics and innovation. As Associate General Counsel, Specialist at Genentech she supports the company’s global clinical development programs and provides legal support regarding General Data Protection Regulation (GDPR) Readiness and implementation, data sharing, and personalized healthcare matters. She is Legal Lead for Roche’s Human Genetics initiatives, including Individual Return of Genomic Results to Study Participants program, and supports the Roche Bioethics organization, including pre-approval and post-trial access to investigational drugs, and am a member of Roche Bioethics Network, Roche Scientific and Ethics Advisory Group Operating Committee, and Roche global Pharma Biorepository Governance Committee.

  1. Jyoti Angal, D.S., MPH

Dr. Angal is the Director of the Regulatory Knowledge Core within the Collaborative Research Center for American Indian Health, funded by NIMHD that provides a platform to bring together tribal communities and health researchers from multiple disciplines to work together in the development of cutting-edge transdisciplinary research that will address the significant health disparities experienced by American Indians in South Dakota, North Dakota and Minnesota. In her role, she provides leadership to tribal partners to establish independent, systematic research review processes, including setting up a tribal research review board. Her interests include building capacity for ensuring the highest standards for human subjects protections. In addition to her position, she provides regulatory oversight for several NIH funded longitudinal research studies. Dr. Angal is also the Director of Clinical Research at Avera Research Institute Center for Pediatric & Community Research, Avera McKennan Hospital and University Health Center, Sioux Falls, SD.

  1. Linda Coleman, JD, CIP, CHC, CHRC, CCEP-I

As the Director of the Yale University Human Research Protection Program, Ms. Coleman serves as the Human Research Protection Administrator for the University and is responsible for the oversight and administration of Yale’s comprehensive Human Research Protection Program, which includes providing administrative and regulatory support for the Yale IRBs, RDRC, and RIDC. In her role, she is responsible for a number of functional duties including, serving as the lead for inquiries regarding audits and inquiries from regulatory agencies and accreditation bodies; assessing HRPP policies and practices for operational efficiency and compliance with applicable laws, guidelines, accreditation standards, and local context requirements; and collaborating with University stakeholders on operational initiatives related to research. Ms. Coleman also serves on several Yale University committees including the Institutional Conflict of Interest Committee, Investigator Conflict of Interest Committee, Institutional Biosafety Committee, Institutional Research Compliance Committee, Data Safety Monitoring Committee, and other committees focused on research policy matters.

  1. Janet Freeman-Daily, MSc, ENG

Janet Freeman-Daily is a stage IV Lung Cancer Survivor and Patient Advocate. In her previous career, Janet was an aerospace systems engineer where, among other things, she learned to be a technical translator.  She now brings that same experience and science to lung cancer via writing, blogging, public speaking, as well as collaborating with other patients, care partners, advocates, healthcare providers and researchers.  Janet is active on social media with her own blogspot, Gray Connections, and is a moderator of #LCSM Chat, promoting ePatient self-advocacy.  When asked what her goal is, Janet says, “I intend to keep advocating for lung cancer patients until I’m out of treatment options and energy.” She is co-founder, The ROS1ders at ros1cancer.com (05/2015-present) and Global ROS1 Initiative, and co-developer and Project Director, Hope with Answers video conversations, in collaboration with Lung Cancer Foundation of America (LCFA) and International Association for the Study of Lung Cancer (IASLC).

  1. Robert “Skip” Nelson, M.D., M.Div. Ph.D.

Dr. Nelson is currently Senior Director, Pediatric Drug Development in the Child Health Innovation Leadership Department (CHILD) at Johnson & Johnson. Before joining Johnson & Johnson in January 2018, Dr. Nelson was the Deputy Director and Senior Pediatric Ethicist in the Office of Pediatric Therapeutics at the U.S. Food and Drug Administration, providing consultation throughout FDA on clinical and ethical issues arising in the development of FDA-regulated products for children, and serving as a standing member of the internal FDA Pediatric Review Committee. Dr. Nelson was a member and then Chair of the FDA Pediatric Advisory Committee prior to joining FDA in 2006.

  1. Walter L. Straus, M.D., MPH, FACP, FCPP

Dr. Walter Straus is Associate Vice-President and Therapeutic Area Head for Infectious Disease Therapeutics and Vaccines in Global Clinical Safety and Pharmacovigilance at Merck and Co., Inc. In this capacity his team serves as the company’s patient safety steward, and is responsible for overseeing aggregate clinical safety assessment of late stage products in development as well as post-licensure safety monitoring and assessment for all Merck vaccines and infectious disease therapeutics.  During his tenure at Merck, he has been a co-author on corporate policies pertaining to human research protection and corporate responsibility. He is a member of the Board of Directors of Public Responsibility in Medicine and Research, a member of the Executive Committee of the Harvard Multi-Regional Clinical Trials Network, and a Fellow of the American College of Physicians and of the College of Physicians of Philadelphia.

  1. Consuelo H. Wilkins, MD, MSCI

Consuelo H. Wilkins, MD, MSCI, is the Executive Director of the Meharry-Vanderbilt Alliance and Associate Professor of Medicine at both Vanderbilt University Medical Center and Meharry Medical College. Dr. Wilkins is a clinical investigator and engagement researcher who is an Associate Director of the Vanderbilt Institute for Clinical and Translational Science, where she oversees programs in community engagement and team science. Dr. Wilkins is currently a Principal Investigator of the Vanderbilt-Miami-Meharry Center of Excellence in Precision Medicine and Population Health, which focuses on decreasing disparities among African Americans and Latinos using precision medicine; and the Vanderbilt Recruitment Innovation Center, a national center dedicated to enhancing recruitment and retention in clinical trials. She is widely recognized for her innovative work developing and testing methods and tools to engage patients and communities in research and was recently named director of the Engagement Core of the All of Us Research Program, a national precision medicine project which will enroll a million or more participants.

8 years in the Cancerverse

ROS1der cofounders Lisa Goldman, Janet Freeman-Daily and Tori Tomalia at the C2 Awards Ceremony in New York City May 2, 2019.

Eight years ago today, I first heard the words, “You have lung cancer.”

In 2011, I was diagnosed with stage IIIa non-small cell lung cancer (NSCLC). I had traditional chemo and radiation. Once treatment ended, my cancer immediately spread to a new site. Then I learned about online patient communities, and biomarker testing for genomic alterations, and clinical trials. I had more chemo and radiation. My cancer spread again. Then I tested positive for ROS1+ NSCLC, and entered a clinical trial. Now my  cancer has been undetectable by scans for over 6.5 years thanks to research.

Eight years ago today, I first heard the words, “You have lung cancer.”

In 2011, the majority of lung cancer patients were diagnosed after the cancer had already spread, and half the patients died within a year of diagnosis. Now we have lung cancer screening for those at high-risk of lung cancer, to catch the disease in early stages when it is curable. We have new therapies that are allowing some patients to live well for 4 years or more. In 2011, the standard of care guidelines published by the National Comprehensive Cancer Network for non-small cell lung cancer were updated about once every 5 years.  Now the guidelines are updated about 5 times a year to keep pace with the record number of new treatment approvals that are proving effective for an every-increasing number of patients.

Eight years ago today, I first heard the words, “You have lung cancer.”

In 2011, I had no idea what cancer advocates did. I’d never met any. As I began to feel better, I wondered why I was still alive when so many others had died. Gradually I began supporting others in online forums, telling my lung cancer story, learning about treatment options and research, and sharing my patient perspective with the lung cancer community, medical professionals, and policy makers in hopes of increasing funding, acclerating research, and improving outcomes for other lung cancer patients. Now there are dozens of other lung cancer patients and caregivers advocating as well.

Eight years ago today, I first heard the words, “You have lung cancer.”

From that singular moment of disbelief and panic, I started on a journey that has changed my priorities, and my approach to life in general.  I now focus on living life to the best of my ability (whatever my abilities might be at the moment), on what matters most to those I love, on what will make a difference for other lung cancer patients–especially those who have my rare type of cancer.

I wonder what the next 8 years will bring.

 

Join me for @TheALCF Lung Cancer Living Room 1/15 5:30 PM Pacific

Please join lung cancer patients/survivors Teri Kennedy, Jeff Julian, Don Stranathan, Andy Trahan, and me, along with Dr. Amy Moore (Director of Science and Research, Bonnie J. Addario Lung Cancer Foundation, also know as ALCF) Tuesday January 15, 2019 5:30-7:30 pm Pacific Time for a discussion on “Navigating the Latest Advances in Lung Cancer Treatment.” I’ll have an opportunity to talk about The ROS1ders and the research project we created  in partnership with ALCF.

Join us in person in San Carlos, California, watch live on Facebook, or watch later on YouTube or in the Living Room Library.

 

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.

Lung Cancer Updates from 2017 ASCO Annual Meeting

Chemist Jean Cui with some lung cancer patient/advocates who have been treated with drugs she designed

Each year in early June the American Society for Clinical Oncology holds its Annual Meeting (called simply “ASCO”) in Chicago. The theme for the 2017 meeting was “Making a Difference in Cancer Care WITH YOU.” Over 39,000 cancer researchers, clinicians, patient advocates, and industry representatives from around the world gathered to discuss the latest scientific advances in cancer care, such as clinical trial results, new technologies, and best care practices.

WHAT HAPPENS AT ASCO?

ASCO takes place in McCormick Center on Lake Michigan in Chicago—few other conference centers are large enough to host it. My Fitbit claims I average five miles a day walking between sessions!  ASCO fills the hotel rooms throughout the city, some of them nearly 6 miles away, and runs a fleet of a more than a dozen shuttle buses to ferry attendees between their hotels and the conference center.

A typical day for researchers starts around 7 AM and finishes around 10 PM. Many sessions are happening simultaneously, and it’s literally impossible to attend all sessions that mention lung cancer. The poster sessions alone have hundreds of posters to view, and you likely run into people you know either presenting their poster or talking about someone else’s poster. Fortunately, those who register have online access to the videos, slides, and posters so they can catch the sessions they missed.

In addition to conference sessions, attendees can wander a HUGE exhibit hall filled with pharmaceutical firms, biotech companies, publishers, cancer advocacy groups, and vendors of support services.  Many attendees also schedule meetings with current or potential collaborators, funders, and trial sponsors, or are expected to attend one of the many cancer-related committee or steering group meetings that are held at a nearby hotel. Some patient advocates are so busy meeting with their grant recipients, researchers, and scientific advisory board members that they never get to attend a conference session! In the evening, attendees might attend a Continuing Medical Education meeting (complete with a free dinner), a reception hosted by an exhibitor or medical society, enjoy the many activities and entertainments Chicago has to offer, or meet with colleagues they only get to see at ASCO.

Below are highlights selected from over 2400 presentations relevant to non-small cell lung cancer (NSCLC), small cell lung cancer (SCLC), and mesothelioma. For more news from ASCO 2017, check out these resources:

Immunotherapy clinical trials

Lung cancer already has approved immunotherapy drugs, and new drugs are in development.  These drugs are relatively new, and we still have much to learn. Researchers are studying how to detect which patients will be most likely to benefit from them, when they should be used in the treatment sequence, how they might best be combined with other drugs and with each other, how to detect and manage potentially severe side effects, and when to continue or discontinue treatment. Experts are still debating about the value of immunotherapy for patients who have driving mutations.

TARGETED THERAPY CLINICAL TRIALS

Targeted therapy drugs bind to specific mutated proteins in cancer cells and inhibit the cell’s cancer-like behavior, instead poisoning both healthy and cancer cells as chemo does. Those that treat cancer for lung cancer are usually in a group called tyrosine kinase inhibitors (TKIs), and each drug targets genomic alterations in specific genes. In lung cancer, approved TKIs exist for alterations in EGFR, ALK, ROS1, and BRAF genes.  However, many more drugs are in clinical trials to target alterations in other genes such as HER2, MET, TRK, and RET, and research is being conducted on other genomic alterations as well.

Other Treatments

Cancer research involves more than just developing new drugs.  Clinical trials are also used to improve existing treatments.

Diagnostic Testing

Precision medicine means personalizing cancer treatment to a specific patient’s situation as well as their cancer’s characteristics.  In addition to presentations about treatments, ASCO has an increasing number of presentations about ways to identify the best cancer treatment for each patient, and to ensure patients get accurate and affordable diagnostic testing.

  • Biomarkers for immunotherapy: Several presentations explored “tumor mutational burden” (a measure of the number of mutation present in a cancer tumor) as a biomarker to indicate which patients might benefit from immunotherapy.  Other presentations sought to define how PD-L1 should be used to identify patients for immunotherapy. Some blood tests that look for certain proteins may be useful in identifying whether an immunotherapy is working before evidence is detectable on a scan.
  • Biomarkers for targeted therapy: Genomic testing of cancer tumors can identify patients who may benefit from targeted therapy. New technologies and methods are being evaluated to determine the most accurate and cost-effective testing methods. A French study of 1,944 patients (http://www.ascopost.com/News/55703) found widespread genomic profiling was feasible, but not all patients tested positive for a treatable mutation.
  • Liquid Biopsies: Several studies explored the value of ctDNA blood tests (one type of liquid biopsy) for early detection, monitoring patients for progression or recurrence, and identifying tumor characteristics that might be used to guide treatment. Several academic cancer centers are now using liquid biopsies to identify potential targeted therapies for a patient, with the understanding that such tests are have not yet achieved high accuracy. If the liquid biopsy results find an actionable mutation, they will prescribe the associated targeted therapy; if the tests are negative, many experts say they will pursue a tissue biopsy to validate the results. One study that used blood and urine tests to detect the T790M mutation found drug response to a positive tissue biopsy was similar to the response to a positive blood or urine biopsy (http://www.cancernetwork.com/asco-lung-cancer/plasma-urine-tests-can-help-detect-egfr-t790m-mutations-nsclc ).

Patient Care

Treating a cancer patient involves more than just prescribing a treatment that hopefully will shrink a tumor.  ASCO sessions also address ways to make patients more comfortable, deal with psychological needs, and improve communication between patients and healthcare providers. Patient reported outcomes (pat

  • Cost or financial toxicity of cancer care were topics in 174 sessions, some of which included patient advocates as presenters and/or panel members.
  • Goals of care discussions and shared decision making (both of which involve the patient as a member of their own care team) were topics in 21 sessions.
  • Patient reported outcomes (quality of life measures reported by patients to their healthcare providers) were the topic of 112 sessions.
  • Results from a clinical trial of 766 people with advanced cancer showed that a simple web-based tool can help patients live longer. The tool allows patients to report their symptoms in real time and then alerts their health care team if severe or worsening symptoms are reported.
    https://www.asco.org/about-asco/press-center/news-releases/web-based-system-self-reporting-symptoms-helps-patients-live
  • “Conquer Fear” face-to-face therapy program lowered fear of cancer recurrence more than relaxation training provided over the same 10-week period.
    http://abstracts.asco.org/199/AbstView_199_186249.html
  • An 8-week, web-based stress management program called STREAM lowered distress and improved quality of life for people newly diagnosed with cancer.
    http://abstracts.asco.org/199/AbstView_199_187932.html
  • Advanced cancer patients in a talk therapy program called CALM had fewer symptoms of depression and improved psychological well-being than those who received only screening for distress and basic psychosocial care.
    http://abstracts.asco.org/199/AbstView_199_193726.html

This document was distributed at the July 18, 2017 Bonnie J. Addario Lung Cancer Foundation’s Lung Cancer Living Room.

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