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Importing Canada’s cheaper prescription drugs instead of lowering US prices?

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President Trump’s proposal to import cheaper drugs from Canada made a lot of Canadians angry.

Canadians are hopping mad about Trump’s drug importation plan. Some of them are trying to stop it. (STAT News, August 12, 2019)

From the article:

“You are coming as Americans to poach our drug supply, and I don’t have any polite words for that,” said Amir Attaran, a professor at the University of Ottawa, who calls the plan “deplorable” and “atrociously unethical.” “Our drugs are not for you, period.”

The Canadian healthcare system negotiates the price of drugs, which is why their drugs are cheaper.  Why can’t the US government do the same?

Farewell, Stephen Hawking, and thanks

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Physicist Stephen Hawking died yesterday at age 76. As a science geek, I was awed by his amazing intellect and ability to explain difficult science clearly. As a metastatic cancer patient, I admired how he made the most of life despite a crippling health condition and grim prognosis.

Below is reprint of a Facebook post (with permission) by feisty science fiction author Pat Cadigan, a friend and ovarian cancer patient. She also knows about making the most of life.

——

I never met Stephen Hawking, exactly. One day, I was in Covent Garden and as I walked along a sidewalk, two carers were getting him out of a specially-equipped van. I felt it would be inappropriate to stop and gush—the carers were in the act and I would have been interrupting. So I kept going—but I gave him a great big I-know-who-you-are-and-I-think-you’re-great smile. I like to think I saw a twinkle in his eye. I smiled at the carers, too, and they smiled back at me.

(Sometimes I think that they smiled at me because I didn’t look like I was pitying Prof. Hawking.)

When Stephen Hawking was diagnosed with motor neurone disease, he was given two years to live. He spun those two years into nearly half a century. This is practically unheard-of for people with motor neurone disease—it is a terrible, merciless condition that, at the time Hawking developed it, was not even as treatable as cancer. 76 is still too young an age to leave the building; I really hoped he would stay longer.

But while he was here, he made it count, even though he was unable to move, and then unable to speak for most of his life. His mind was lively, energetic, indomitable. He defied his circumstances and his prognosis. Hell, he even left his wife for his nurse—probably not his finest hour, but the heart wants what it wants, even when it’s confined to a wheelchair, unable to speak.

Most of us never achieve Hawking’s level of intellectual brilliance. But we can all try to ‘defy our prognosis,’ so to speak. We can confound expectations. We can make every moment count. We don’t have to accept what we’re told to accept. We don’t have to settle.

Maybe we won’t succeed in defying our prognosis, so to speak. But if we don’t try, we’ll never know.

You don’t have to lie down quietly. Even if you’re paralysed, you can go down swinging.

About that conspiracy to hide the cure for cancer …

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Reality check: No one is hiding THE ONE CURE for cancer.

There will not be one treatment to cure all cancers, because each case of cancer is as unique as the person whose cells mutated to create it.

We’ve been curing cancer in groups of mice and lab containers for decades. However, the human body–and therefore each cancer it generates–is more complicated than a mouse or cells isolated in a petri dish.

Each cancer is a unique living organism that can mutate and evolve over time. Just like its host, a cancer’s characteristics and behaviors are influenced by genetics, environment, nutrition (what it consumes to make energy), and exposure to infectious diseases and toxins (and probably other factors we haven’t discovered yet).

If anyone had run a study in humans that proved a single cure worked for every case of cancer, no one could hide it. No one could silence the millions of joyful, grateful patients who had been cured by it.

Enough with the cancer conspiracy theories, people.  Accept that humans–and cancer–are complicated creatures, and get on with the research.  We cancer patients are waiting, and we don’t have the luxury of time.

When your pharmacy plays favorites with cancer

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Last week I refilled my prescription for warfarin, a blood thinner I take for my cancer-related pulmonary embolism (such blood clots that are not uncommon in cancer patients).  The Fred Meyer pharmacy did their usual efficient job and delivered my medication promptly.  It looked like this:

pink ribbon pill bottle

I think it’s wonderful when corporations support cancer research and cancer patients. Kroger (Fred Meyer’s parent company) has a large breast cancer awareness campaign featuring Kroger employees who have or had the disease, and I’m sure some breast cancer patients who received this pill bottle cap felt a surge of hope.

“Hope” is not the emotion I felt when I saw this bottle.

I felt stigmatized. Ignored. Devalued. And these feeling were triggered by an organizaion supposedly aiming to make me feel BETTER.

I have lung cancer, the biggest cancer killer, a disease that kills twice as many women as breast cancer  … READ MORE

 

Image credit:  Creative Commons License
Pink-ribbon pill bottle cap by Janet Freeman-Daily is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.

Please join #LCSM Chat 10/22 at 8PM ET for “Sharing Your Story: Talking Points for #LungCancer Advocates”

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Oct_22_LCSMCHAT

As Lung Cancer Awareness Month (November) grows nearer, patients and advocates become more focused on how to raise awareness of our disease. But what should we say to have the most impact? What “talking points” and tips do successful advocates use in writing, interviews, and public speaking?

The October 22 #LCSM Chat at 8 PM ET (5 PM PT) will discuss the most effective ways to share our patient and caregiver stories as we work to raise awareness of our disease in the media, online, and in person. Although our focus will be on lung cancer, the concepts will be applicable to advocates for any cancer or serious disease. Our moderator will be Janet Freeman-Daily, who has spoken to patient groups, industry, researchers, medical meetings, and the President’s Cancer Panel. Other experienced advocates such as LUNGevity’s Katie Brown (@brownbeansprout), lung cancer blogger Tori Tomalia (@lil_lytnin), and breast cancer survivor Casey Quinlan (@MightyCasey) will also share their knowledge.

These topic questions will guide the conversation:

  1. Which aspects of your #cancer experience do you include when sharing your story? How do you make it an interesting narrative?
  2. What key facts about #lungcancer do you ensure you weave into your story? Does this change over time?
  3. Any tips for tailoring an advocate presentation to different audiences, article/speech length, or types of media?
  4. How do you make contact with potential speaking, online and print publication opportunities?

For a primer on how to join #LCSM chat, check out How to Participate in LCSM Chat.

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This content was reblogged from the LCSM Chat website (with permission).

The President’s Cancer Panel Wants … ME?

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When the Twitter icon indicated I had a new direct message last Tuesday, I took my time opening it. I was down with a bad case of the flu, including a fever and a cough that had stolen my voice, and I wasn’t at the top of my game.  When I finally clicked on the icon, I felt a jolt of adrenaline.

The message was from “@PresCancerPanel” and started “We’d like to invite you to …” …continue reading

 

Edit May 7, 2015:  list of March 2015 workshop participants

EPatients on the Front Lines: Precision Medicine, the FDA, and Me

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On February 19, 2015, I was an invited patient advocate speaker at the 11th Annual Moores Cancer Center Industry/Academia Translational Oncology Symposium. My topic, “EPatients on the Front Lines:  Precision Medicine, the FDA, and Me,” explained how cancer research could move faster and be more successful if researchers, pharmaceutical companies, and the biotech industry would collaborate with patients early in the trial design process.

You can see my slides here:

Edit May 7, 2015:  UCSD posted the video of my speech

Here’s the text of the speech, along with the links on the slides.

# Slide Speech
1 Title Thank you for inviting me to speak to you today.  I’m going to share a view of precision medicine from the patient’s perspective.  If I seem a bit tense, blame it on the PET scan I’ll have 4 days from now.  I’ll post the speech on my blog tomorrow, so you don’t have to take notes.
2 Genome Scarf This is the legacy of an epatient.  It’s a genome scarf. It represents the chromosome 18 base pair sequence of colonrectal cancer patient Jay Lake.  Jay was a prolific science fiction author and my friend. http://maryrobinettekowal.com/journal/jay-lake-genome-scarf/
3 Genome Scarf and Jay pic Jay was example of an epatient:  a patient who is Equipped, Engaged, Empowered, and Enabled, whether or not they’re online. In 2011, after several surgeries and chemo regimens, Jay was running out of options.  Friends told him about genomic sequencing and helped him research clinical trials. The science fiction community crowdsourced the funding to sequence and analyze Jay’s personal and cancer genomes. Jay shared his data with NIH researchers for his immunotherapy trial, and with Harvard’s open-source Personal Genome Project.  http://www.youcaring.com/medical-fundraiser/sequence-a-science-fiction-writer/38705
4 My journey-Diagnosis Like Jay, I’ve pursued cutting-edge scientific research in hopes of living longer with metastatic cancer. I was diagnosed with Stage 3a non-small cell lung cancer in May 2011.  I never smoked anything – except a salmon.
5 My Journey-Progression 1 After a month’s delay to treat pneumonia, I had concurrent chemo and radiation. My primary tumor and lymph nodes all responded. Two months later, a PET scan found a new hotspot on my collarbone. A biopsy confirmed my cancer had progressed.  Since I had severe radiation pneumonitis, my oncologist recommended a break from treatment. In the next three months, I grew a 3-inch mass on my collarbone.
6 My Journey-Progression 2 I had more chemo, followed by more radiation. A new scan showed all the known tumors were gone or dead. BUT … I had two new tumors in my other lung.  I now had metastatic lung cancer. Whenever I stopped treatment, I had a new tumor within two months.  My oncologist told me I would be on chemo for the rest of my life.
7 My journey-Patient as Participant However, I wasn’t just a recipient of care. The information I learned in the Inspire online lung cancer community enabled me to become an interactive participant.  From other epatients, I learned to ask for my data, including radiology and pathology reports.  I also learned more extensive molecular testing was available at other facilities, and arranged to have my slides sent to the University of Colorado Hospital for a 10-oncogene panel. Unfortunately, all tests were negative.
8 My Journey-ROS1 & Trial Here’s where the tone of my story changes.  An online patient told me I fit the profile of patients who had the ROS1 translocation–relatively young, adenocarcinoma, neversmoker, triple negative for the most common mutations.  He sent me the journal article of early trial results.  After my second progression, I contacted University of Colorado again, and learned they had recently developed a ROS1 test.  I gave permission to use my remaining slides.  When I learned my cancer was ROS1 positive, I enrolled in the crizotinib trial in Colorado.
9 My journey-NED Thanks to precision medicine and the online lung cancer community, I’ve had  No Evidence of Disease for over two years. I’m not cured, but life is relatively normal for now–if you ignore the scanxiety every 8 weeks.  I chose to enroll in a trial for treatment in hopes of better option than chemo forever.
10 Smart Patient LC Trials Chart Epatients are very interested in the treatment options available in precision medicine trials, but sometimes we have trouble finding the right ones. New trial finders–like this format created with input from epatients–can help patients find the right treatment at the right time. http://www.smartpatients.com/lung-cancer/trials
11 Purpose of Clinical Trial For clinicians, researchers, pharmaceutical firms, and industry, clinical trials are scientific experiments.  For epatients, clinical trials are treatment. Clinical trials are hope. By collaborating with epatients early in the design process, clinical trials not only can recruit more patients–they also move cancer research forward in ways that are meaningful to patients. Here are some examples.
12 Life Raft Group One of the earliest examples of patient involvement in clinical trial design comes from the Life Raft Group.  In the year 2000, gastrointestinal stromal tumor patients involved in the early Gleevec trials began sharing their experiences online in ACOR. Now Life Raft Group has the largest patient-generated clinical database in the world, and is driving research on GIST genome sequencing and drug screening.  http://liferaftgroup.org/
13 LMS Direct Research Foundation Another example of patient-driven research is the Leiomyosarcoma Direct Research Foundation.  LMS is very rare–only 4 people in 1 million have it.  In 2004, over 800 of those patients were members of an ACOR online support group.  One group member read a journal article about a GIST molecular study, and emailed the researcher to ask “What would you need to study LMS?” The answer was “tissue samples”  Patients recruited 500 donors from the online group, collected  slides from clinics, deidentified them, and gave them to the researcher. The Stanford lab has since identified several molecular subtypes of LMS as well as potential drug targets, and published nine journal articles in its first four years.  Key elements of this successful research collaboration were a motivated online patient network and a researcher who listened to those patients and trusted them as collaborators. http://www.lmsdr.org/stanfordu.php
14 TLS protocol crowdsourcing Technology is providing new ways to incorporate the patient voice.  In December 2012, the FDA cleared an Investigational New Drug Application (IND) for a multiple sclerosis therapy.  What’s remarkable is that the clinical trial protocol was the first ever developed with the aid of global crowdsourcing. That helped define primary and secondary endpoints, inclusion/exclusion criteria, and remote monitoring strategies for tracking patients.  http://dev.transparencyls.com/
15 ALCMI Young Lung Study 1 Patient networks and online technologies are also driving research for the most deadly cancer: lung cancer.   Currently 3-6 thousand newly-diagnosed lung cancer patients in the USA are under the age of 40, typically athletic never smokers.  The patient-founded Addario Lung Cancer Medical Institute designed a study of the somatic and germline mutations that might be driving the cancer in these young patients. The study is unique in that it allows patients to enroll either at a study site or online. It also provides genomic profiling data and treatment recommendations to patients as well as physicians.
16 ALCMI Young Lung Study 2 Because this trial was created in response to patient-identified needs and included the patient voice in all phases of trial development, it accrued 30 patients in the first two weeks.
17 Petition to FDA Patients, clinicians, and researchers can also collaborate on regulatory issues that impact clinical trials.  While working with a laboratory director at the University of Colorado, Dr. Dara Aisner, I realized that patients like me who had a genomic cancer variation might be unable to access essential testing under the FDA’s proposed regulations for laboratory developed tests.  By collaborating with medical professionals, I was able to help lung cancer advocacy groups submit comments to the FDA, and draft an online petition that collected over 700 signatures in less than three days. You can still sign the petition, by the way. https://www.change.org/p/protect-patient-access-to-precision-medicine-tell-fda-to-withdraw-proposed-ldt-regulations
18 CTTI The Clinical Trials Transformation Initiative, which seeks to increase the quality and efficiency of clinical trials, recognizes the patient voice must be included when defining the precision medicine landscape. http://www.ctti-clinicaltrials.org/home
19 Where to Find Epatients If you’re interested in finding epatients for collaboration, there are many places you can look for them.  Here’s where they may be hiding.
20 Obama Quote When President Obama announced the Precision Medicine Initiative, he said:”Patient advocates are not going to be on the sidelines. It’s not going to be an afterthought. They’re going to help us build this initiative from the ground up.”  He recognized the importance of including patient voices early in the design process. To be successful in the age of precision medicine, oncology researchers must collaborate with patients.
21 Thank You I hope I’ve encouraged further collaboration between cancer epatients, researchers, and industry. It will create faster paths to cancer cures.  Thank you for inviting me to share an epatient perspective at this symposium.

Stuart Scott Knows How to Beat Cancer

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This year’s ESPY awards honored ESPN anchor Stuart Scott with the Jimmy V Perseverance Award for his ongoing battle with cancer. The intro by Kiefer Sutherland and tribute video are inspiring, but my favorite part is this line in Scott’s acceptance speech:

“When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live and the manner in which you live.”

He gets it. And he lives it.

20140729-081017-29417567.jpg

#LCSM Chat 27-Feb-14: What do cancer patients want from their doctors and online support groups?

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[This is a reblog of a post on the #LCSM blog.  Reposted with permission]

 

The focus for the next #LCSM Chat at 8 PM Eastern (5 PM Pacific) on Thursday, February 27, 2014 will be “What do cancer patients want from their doctors and online support groups?” The moderator will be Dr. Jack West.

Online cancer support groups can provide a wealth of information and understanding for cancer patients, caregivers, and family members. Many in online forums find expertise and credibility among others who have traveled down the same road. “Expert patients” in these forums can provide an understanding and hope that even the best doctor can’t offer, because they’re living proof you can understand your treatment options, and your treatment can work. And online groups are available 24/7, for free.

However, different patients seek out different levels of information, both in these forums and with their doctors. Some want to know all the available facts, including survival data in the tables and figures shared among oncologists. Others prefer to trust their doctors and hope for good results. This leaves doctors wondering if providing a frank discussion of statistics (which might not be encouraging) would inform, confuse, or scare patients.

Also, different patients are comfortable with different levels of self-advocacy. Some express a strong desire for self-determination of their treatments, while others want a clear recommendation from a trusted oncologist about the a best way to proceed.

Given the diversity in cancer patient needs and wants, our upcoming #LCSM tweetchat on will focus on the following questions:

1) Do the shared experiences of patients provide value and credibility that can’t come from medical professionals?

2) Given the growing movement to give patients their data, should doctors share stats like survival numbers with the patients? If so, when?

3) Do engaged, empowered patients want a clear recommendation from their doctor, or a presentation of pros and cons so they can choose among the options?

We hope that those of you who use Twitter as a communication tool will join us by following the hashtag #LCSM on Thursday. Feel free to also comment here, before or after the tweet chat.

Background

Upcoming #LCSM chat: What do patients want and need from online networks and their doctors?
by Dr. Jack West on cancergrace.org

ePatients: Engaging Patients in Their Own Care by Medscape

Society for Participatory Medicine

Are physicians ready for the e-patient movement? on KevinMD.com

Journalists vs ePatient — and How It Got Ugly

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This is a story of Bill Keller (former executive editor of the New York Times), his wife Emma Keller (a journalist for The Guardian in the UK), and Lisa Adams (a 44-year-old mother of three who lives with metastatic breast cancer and shares her cancer journey in blogs and tweets).  But, in a broader sense, it’s the story of the disconnect between cancer epatients who share their journey online, and journalists more comfortable with traditional approaches to healthcare and media.

On January 8, 2014, The Guardian published Emma Keller’s article about her fascination with Lisa Adams tweets: “Forget funeral selfies. What are the ethics of tweeting a terminal illness?”  Four days later, The New York Times published Bill Keller’s Op-Ed piece titled “Heroic Measures,” which contrasted Lisa Adams’ very public efforts to stay alive with the private death in hospice of Bill Keller’s 79-year-old father-in-law.  From my perspective, and that of many others, both of the articles appeared to blame Lisa Adams for taking her terminal cancer journey public.

Both articles generated some positive response and a LOT of negative comments.  You can read comments on the NY Times page for a sampling of reactions.  Comments on the Guardian article are here, even though the original post “has been removed pending investigation” (Emma Keller revealed she published parts of private communications with her subject, Lisa Adams, without first obtaining Lisa’s permission.)  The Internet and Twitterverse reacted strongly, and major online media are starting to analyze what happened and what it all means (see links at the end of this blog).

My initial reaction to Bill Keller’s Op-Ed piece was to wonder how a former executive editor of the New York Times could have managed to publish a piece with so many errors in it. He hadn’t read Lisa Adams’ online profiles, or he would have known she had three children, not two, and her cancer became metastatic in October of 2012, not seven years ago.  He couldn’t have read many of Lisa’s online posts, or he would have known that she abhors battle metaphors for cancer and honors each patient’s choice to treat or not treat their cancer.  He hadn’t read the article he cited about palliative care and lung cancer, or he would have known the patients in the study received palliative care during active cancer treatment and were not in hospice care. He apparently doesn’t know much about the healthcare system, since he attempted to verify information about Lisa Adams’ treatment with her doctors, who are bound by HIPAA laws not to disclose her information.  I especially did not appreciate how he blurred the distinction between palliative care and hospice (my thoughts about this appear in the comments section of Bill Keller’s op-ed as well as below).

The more I think about it, the more it seems this mess reflects how little major media and the public at large understand the epatient movement and cancer.  The blogs, tweets and forum posts of actual cancer patients are invaluable to those dealing with the life-changing personal crisis that is cancer, and to their families and caregivers.  Epatients like me share our experiences and learn from each other regarding the symptoms, diagnostic process, terminology, second opinions, treatment options, side effects, research, clinical trials, palliative care, hospice, and dying with grace and dignity.  For some of us, it’s been a literal lifesaver.  If I hadn’t read posts from other cancer patients online, I wouldn’t have learned about the ROS1 mutation and I’d be dead now.

Apparently Bill and Emma Keller think we metastatic cancer epatients should just go silently into the night–with emphasis on the SILENT. Maybe if they actually spent some time reading the blogs of Lisa Adams and other metastatic cancer patients, they would understand instead of blame.

My comment to the New York Times article

“Your characterization of ‘palliative care’ and the related lung cancer study does a great disservice to cancer patients. Palliative care is a specialty that provides comfort care to patients and family members from the day of diagnosis — before, during, and after treatment. Cancer patients can be receiving aggressive treatment and still receive palliative care.

“In the lung cancer study you mentioned, patients were assigned ‘to receive either early palliative care integrated with standard oncologic care or standard oncologic care alone.’ This means the patients were receiving active cancer treatment. They were not ‘going gently.’ They were trying to stay alive.

“An article recently published in the Journal of the American Medical Association indicates others suffer from the same lack of understanding as you. It states, ‘Seventy percent of Americans describe themselves as ‘not at all knowledgeable’ about palliative care, and most health care professionals believe it is synonymous with end-of-life care.’ http://www.nejm.org/doi/pdf/10.1056/NEJMsb1305469

“Palliative care may be offered during hospice, but palliative care is NOT the same thing as hospice. Cancer patients in treatment need comfort care too. Misrepresentations such as yours will keep many of them from getting it — they’ll think palliative care means the doctor has given up.”

Commentary in Major Online Media

New York Times Public Editors Journal: Readers Lash Out About Bill Keller’s Column on a Woman With Cancer (Jan 13)

Salon.com: Bill and Emma Keller’s bizarre pieces about cancer patient Lisa Adams (Jan 13)

Wired: Former New York Times Editor, Wife Publicly Tag-Team Criticism of Cancer Patient. Ugh. (Jan 13)

Washington Post: Former NYT editor Bill Keller and his wife under fire for commentary on cancer patient (Jan 13)

The Atlantic: On Live-Tweeting One’s Suffering (Jan 13)

Huffington Post: Bill Keller Criticized For Op-Ed About Cancer Patient Lisa Bonchek Adams (Jan 13)

Slate: There Is No Right Way to Die (Jan 14)

Huffington Post Women: What the Kellers Forgot to Say about Lisa Adams and Cancer (Jan 14)

The Guardian: Why an article on Lisa Bonchek Adams was removed from the Guardian site (Jan 16)