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I’m fine, just busy with research advocacy

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Sorry I haven’t posted much in the past few years. It’s not because I’m sick — I still have no evidence of disease on scans after 10 years on the same targeted therapy for my ROS1+ cancer. It’s because I’ve been busy with living and with research advocacy projects.

Research advocacy brings the patient voice to research. By sharing the patient perspective with those engaged in cancer research, research advocates help keep research focused on what matters to patients with the goal of improving outcomes for patients.

For those interested in what research advocacy looks like, here’s an example.

I’m pleased to share that I will be presenting at the International Society for Biological and Environmental Repositories (ISBER) 2023 Annual Meeting on May 4, 2023, in Seattle. I’m one of the speakers in a session titled “Prioritizing Diversity, Equity, and Inclusion in Biobanking.”

I’ll be sharing my views on biobanking to enable research based on my advocacy experiences. These include serving on the External Scientific Panel for the NCI Cancer Moonshot Biobank; collaborating with The Broad Institute’s Rare Cancer Dependency Map Initiative; establishing the ROS1 Cancer Model Project; and learning about human research protection regulations and ethics during a term on The Secretary’s Advisory Committee on Human Research Protections (SACHRP).

If you’re an established lung cancer patient advocate and are interested in learning more about research advocacy, please consider applying for the IASLC STARS program.

Applying the rule of law to pregnancy

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The rule of law should be equally applied to all, don’t you think? So, if the only reason to have sex is to create babies and carry them to term so they can have life, liberty, and the pursuit of happiness, and any pregnant person MUST carry the pregnancy to term no matter the impact on the mother’s life,

then …

We must ensure all potential parents are at least as prepared for parenting as adoptive parents are required to be.

These guidelines should help.

1. All males must be sterilized at puberty. No pregnancy can occur without male input.

2. A male can have sterilization reversed ONLY when they prove they:

  • want to raise children,
  • have acceptable parenting skills, and
  • are able to support children in an acceptable home environment.

3. A male may only engage in sex with a person who:

  • explicitly states in writing that they are willing and able to bear and raise a child with that specific male, and
  • can prove that they are able to support a child should something happen to the male.

4. Any male who violates these rules will be:

  • immediately and permanently sterilized,
  • jailed for 9 months while wearing a pregnancy suit,
  • required to work in the jail’s diaper service for another 4 years,
  • for the next 30 years after release from jail, required to work in a minimum-wage job while paying a monthly “standardized offspring support fee” calculated to equal 50% of food, housing, education, daycare, and medical bills for a child with a disabling condition.

I wonder how many men that would leave to run the country?

#jokingnotjoking

#Cancer patient vs unmasked worker in the era of #COVID19

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This morning (Saturday) I had to ship scan CDs overnight from Washington state to my cancer doc in Colorado for my virtual appointment on Tuesday. Don’t fret, it’s routine follow-up–I’m not attending in person because I do not want to fly during a pandemic.

When I entered the UPS store, neither employee behind the counter was wearing a mask. Masks are required in Washington State as of yesterday, due to increasing cases of COVID-19.

When I politley asked the clerk serving me to put on a mask, he emphatically stated, “No, I’m not going to do it.” And stared at me.

Wow.

I needed to send the package ASAP, so I proceeded anyway.

I told the clerk I was sending medical records to my cancer doctor in another state because I don’t feel safe flying during this pandemic. I said needed them to arrive on Monday for my virtual medical appointment on Tuesday. He processed my package efficiently, but told me he couldn’t guarantee on time delivery due to COVID-19. Fingers crossed that it arrives on time.

I debated whether to say anything more about the mask. Despite being a somewhat outspoken patient advocate, I usually won’t make waves over customer service snafus that cost me a minimal amount of money–I have other ways to spend my time that will make more of a difference in the world. In this case, however, I decided the possibility of helping someone come to realize how masks help prevent the spread of COVID-19 was worth the effort.

When our business was done, I thanked the clerk, and (to acknowledge his viewpoint) said I understood he had a right not to wear a mask, that it can be inconvenient or uncomfortable. I then said if he wore a mask, he would help protect people like me, who are in the high-risk group for severe COVID-19. He looked at me and said simply OK. Then he called for the next customer.

I thought that’s all one can do in real time.

I posted about this incident on Facebook, and learned a number of my friends (many of them also in the high-risk group for COVID-19 due to age, health conditions, or both) had encountered hostility from unmasked workers in places of business. The suggestions my friends offered got me thinking about additional actions to address the issue of the unmasked during a pandemic.

I believe the science and data shows wearing a mask DOES help protect others and reduce the spread of the virus. I want more people to accept that they should wear a mask, even though it may be inconvenient or uncomfortable.  Pressure from employers may change minds when compassion can’t.

However, I think confronting and/or intimidating the unmasked is not particularly safe–some people feel quite strongly about this topic, and will aggressively defend their “right” not to wear one. Besides potential verbal unpleasantness and bodily harm, confrontation may also generate shouting, which will only spread virus droplets further. If the individual does not respond to a respectful request, I think leaving the establishment is the safer route.

But I can continue to press after I get home. UPS will be hearing from me. Which leads me to the approach I’ve decided to take.

RESOLVED:
When being served during the COVID-19 pandemic by an unmasked (or improperly masked) person at a place of business, I will do the following:

  1. Calmly tell the person I would appreciate them wearing a mask to protect me (a person at high risk of severe COVID-19). If they are wearing a mask but it’s not properly positioned to cover both the mouth and nose, I will ask them to position the mask properly. If they don’t comply, I won’t press further.
  2. After I’ve left the establishment, I will contact the store’s manager and remind them if they want customers to come in, they must respect customer requests to be protected from infection.  If applicable government regulations require wearing a mask, I will remind the manager of this.
  3. If the store is a franchise, I’ll repeat #2 with corporate headquarters via phone, email and/or Twitter (many businesses scan Twitter to catch posts that could generate bad public relations).
  4. If applicable government regulations require wearing masks, I will contact the appropriate health department to report the health violation.

Applying pressure through employers increases the chances that the unmasked will start wearing masks in public. I encourage you to participate in this!

Please share in the comments what approach worked for you.  Please remember to keep yourself safe — avoid escalation!

Thanks to everyone who responded to my Facebook post on this subject for their great suggestions!

A bad day in research advocacy …

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The eight-hour virtual cancer research conference started at 5:45 AM

AND

The livefeed repeatedly crashed

AND

A researcher mansplained how to handle the survey that you just helped design

AND

A conference presenter says the targeted therapy cancer drug that is keeping you alive is too costly, and chemo (which didn’t work for you) is just as effective

AND

Someone in your international lung cancer patient support group dies for lack of access to drug that is standard of care in your country

AND

A local friend gets diagnosed with metastatic lung cancer

AND

A friend of another friend gets diagnosed with stage 4 breast cancer.

 

I hate cancer. I need chocolate.

On #COVID19, ventilators and triage

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This Photo by Unknown Author is licensed under CC BY-SA-NC

In the age of COVID-19, patients may find themselves in a hospital or emergency department that does not have enough resources to give ICU beds or ventilators to all patients who need them. In an attempt to prepare for such a situation, some hospitals drafted “triage” policies that state who would be prioritized to receive a ventilator or ICU bed.

I want to share my perspective on triage as a both a science geek and a metastatic lung cancer patient in active treatment.

A not-yet-implemented triage policy from the Henry Ford Healthcare System in Michigan was shared online in late March, and caused an uproar in social media.  The metastatic cancer community learned that if resources were limited and that policy were in force, they would be denied a ventilator, along with those who had severe heart, lung, kidney or liver failure, or severe trauma or burns.  Over the next several days, other triage policies surfaced (some that included dementia or disability as a reason to deny care).  Articles about triage policy appeared in medical journals,  opinion pieces, and general media.

Many of my fellow lung cancer patients are horrified by the impact such triage policies would have on their lives.  I too am worried about the possibility of not receiving treatment simply because I have metastatic lung cancer.

The lung cancer community has been battling treatment nihilism for years. It angers us—and rightly so—whenever we hear that someone did not receive the most effective treatment available simply because a doctor was unaware of changing statistics in lung cancer survival or the terrific response rate to targeted therapy or immune checkpoint inhibitors.

But this triage thing is not a matter of doctors being unaware of changes in lung cancer treatment, or not believing cancer patients deserve to live. This is an issue of resource shortages. Everyone deserves to live, but emotional pleas don’t give doctors a way to make a fair choice about who lives and who dies.

Reality check:  COVID-19 is redesigning hospital services out of necessity. Surgery theaters are being converted to ICUs. Hospital staffing is being reduced in an attempt to keep healthcare workers healthy and sane. Ventilators are in short supply.  When two patients need a ventilator-equipped ICU bed (whether they suffer from severe COVID-19 pneumonia or a heart attack), and only one bed or ventilator is available, someone will have to decide who gets the scarce resource. The patient who gets it will hopefully live. The patient who doesn’t will probably die. It’s a horrible Sophie’s Choice for healthcare providers who took the hippocratic oath.

This is not a human rights violation. It’s a medical ethics problem born of resource shortages. How should the medical world decide who lives and who dies?  Obviously, no one wants to hear that they are the one who will likely die.  But simply saying everyone has an equal right to life does not solve the resource problem.  We need a fair way to make a gut wrenching, impossible decision.

How can we make a fair decision? One possibility is to assess who is most likely to survive if they were given the respirator. The problem is, we don’t have much data to use in making this assessment. We have some data that cancer patients who get really sick with COVID-19 are less likely to survive, but only a few of those had lung cancer, so it’s not a good sample size on which to base a decision. We have some data that shows people who are 80+ years old are unlikely to survive COVID-19 once their disease has progressed to the point of needing a ventilator.  Thus one could say that when having to choose between a 20-year-old and an 80-year-old, all other things being equal, the younger patient has a better chance of survival and so gets the ventilator.  But what if the younger patient has metastatic pancreatic cancer and no cancer treatment is likely to work for them?  Then the choice isn’t so easy.

The US healthcare system—certainly most healthcare providers—have never faced these sorts of decisions before.  They need time to figure it out. Hospitals are attempting to create triage policies so that individual doctors are not continually faced with violating their Hippocratic Oath by deciding who lives and who dies. Our healthcare providers are already under tremendous pressure by long hours, patient overload, watching patients die alone without being able to offer a comforting touch, being repeatedly exposed to COVID-19 due to lack of personal protective equipment, and separation from their families to avoid infecting their loved ones.  They could use some guidelines.

In the March 28 Axiom Zoom webinar on “COVID-19 and the Impact on Thoracic Oncology” (recording available here), I asked the the assembled thoracic oncology experts what they tell their lung cancer patients (especially those with metastatic disease) who are scared that they will be denied treatment simply because of their lung cancer diagnosis. The doctors acknowledged that they too were concerned about this. One surgeon emphasized that doctors must continue advocating for their lung cancer patients to fight the historic nihilism faced by lung cancer patients. Another stated the importance of informing all critical care team members about the improved prognosis for lung cancer patients so that they wouldn’t be automatically left untreated. But no one had a solution that would solve the problem as a whole.

In the follow-up Axiom webinar on April 4 titled “COVID-19 and The Impact on Cancer Patients” (recording available soon), the doctors addressed the topic again. One doctor said she wrote a clinic note for each cancer patient, which the patient could download online and print to keep with them. She didn’t elaborate on the contents of the note, but presumably, the note listed the patient’s diagnosis, treatment and prognosis.

This raises another ethics issue.  What if that patient has a poor prognosis?  What if that patient doesn’t WANT to know their prognosis?  What if the patient is in a clinical trial and the doctor doesn’t know their prognosis?

While some lung cancer patients (such as myself) have had long runs with no evidence of disease on targeted therapy or immunotherapy, there are still many for whom prognosis is not so rosy: Patients who have extensive small cell lung cancer that has progressed after chemo. Patients who have oncogene-driven lung cancers and have blown through all their treatment options. Patients whose cancer is progressing rapidly despite immunotherapy. Patients, advocates, and advocacy organizations won’t have any credibility if we claim that all lung cancer patients have the same likelihood of surviving a severe case of COVID-19 as a healthy person.

Lung cancer patients are not the only group facing discrimination via triage.  This also affects people with disabilities, elders with dementia, children with heart issues, diabetics on insulin, and many others.  I don’t feel right saying lung cancer patients deserve a chance to live, but these other people don’t.  I support the statement published by the Disability Rights Education & Defense Fund (DREDF), The ARC of the United States, and many other disease and disability advocacy organizations (including the GO2 Foundation for Lung Cancer and LUNGevity Foundation) titled “Applying HHS’S Guidance For States and Health Care Providers on Avoiding Disability-Based Discrimination in Treatment Rationing.” This is the sort of reasoned ethics discussion needed to help the medical community develop guidance on this tough topic.

Speaking as a member of a special interest group (metastatic lung cancer patients), this is a time to search for solutions that are right for EVERYONE, not just for one special interest group. I don’t think my right to live outweighs anyone else’s right to live. Ethically, when resources are limited, decisions on who gets care should be based on who has the better chance of survival based on available facts.  This is a very sensitive issue that could have a significant impact on how patients AND the medical community view lung cancer advocacy organizations.

I prefer to seek solutions to problems that work for the community as a whole. News flash: we are ALL going to die someday–and none of us know when. Patients living with advanced and metastatic lung cancer have become experts on living well despite uncertainty. You can take some steps to make the uncertainty easier for you and those you love.

  1. Identify which events or activities make your life worth living. Is it walking in the woods every day? Visiting distant family? Watching your youngest child graduate from kindergarten? Having lunch with a good friend? Indulging a good book? Petting the cat? Write all of them down, and then make plans to help them happen.
  2. Have an honest discussion with your doctor about your health status, goals of care (see #1), and prognosis. Ask if you are immunocompromised, have scarred lungs or limited breathing capacity, or are at risk of complications if put on a ventilator. Be honest about your fears and your health challenges.
  3. Ask your doctor to provide you with a BRIEF letter (2-3 sentences at most) on letterhead, signed and dated, stating your diagnosis and prognosis. Carry a copy with you in case you must go to the hospital. (It must be brief, or no ED doc will read it).
  4. Think about how you would prefer the end of life to look. Talk with your family NOW about your preferences–if disaster strikes, you might not have another chance. If you need help getting started, visit The Conversation Project.
  5. Prepare legal estate documents, especially a Durable Power of Attorney and Advanced Healthcare Directive. Learn more from the National Institute on Aging.  There are ways to do this even if you are Sheltering at Home during the pandemic–check out “Estate Planning Goes Digital as Many Families Explore Options.”

We can’t control the COVID-19 pandemic, lung cancer, or medical resource shortages. However, we CAN control how we react to them.  Prepare. Stay home. Practice social distancing. Wash your hands. And stay as healthy as you can.

The challenge of providing financial assistance for expensive cancer drugs

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Drug companies must be especially cautious when interacting with patients and nonprofits. Such interactions must navigate a policy minefield designed to protect patients as well as ensure fair market conpetition.

One example of such policy is regulation that prohibit drug companies from enticing patients to take one drug instead of another. This is important from a medical ethics perspective. However, such policies complicate the process of assisting patients with affording expensive newer drugs like cancer targeted therapies and immunotherapy.

Most patients could not afford to take the expensive ($17K+ per month) FDA-approved drug — like crizotinib, the one that keeps me going as a ROS1 cancer patient — without insurance and copay assistance. This is especially problematic for Medicare patients, who must pay out of pocket to get through the prescription drug coverage “donut hole” every year. I’ll be there soon.

To be fair, and to comply with regulations, patient assistance programs should help all patients access any approved targeted therapy. But who should pay for that? If one drug maker supports such a program, must all makers of competing drugs do so? If only one or two drugmakers participate in the program, does that make it unethical? Does such a program support higher drug prices, or fuel innovation by allowing patients rapid access to new, more effective drugs?

I don’t have the brainpower to answer those questions. I just know that cancer targeted therapy has made a huge difference in my life for nearly seven years, and I want every patient to have the same opportunity to access an appropriate new therapy that matches their biomarker.

The article below explores some of the pitfalls awaiting those who try to help patients pay for expensive new drugs. Sorry it’s behind a paywalll.

Two patient charities settle allegations of helping drug makers pay Medicare kickbacks (STAT News)

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?