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Pondering Resources for Affordable Healthcare

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I’ve been thinking about the US healthcare system thanks to a fascinating Facebook discussion with other Stanford Medicine X epatients.  Each of us are too familiar with the strengths and weaknesses of the US healthcare system and its mix of insurers: Medicare, employers, and private insurance companies.

My focus is this:  whatever healthcare system we decide to have in the US, we need to be able to pay for it.  The reality is that healthcare resources are not unlimited.

Whether or not a healthcare system is government run and/or devoted to serving the good of all people, the resources required to operate the healthcare system are driven by a free market.  Governments and nonprofits fund only a small percentage of healthcare research and development.  Healthcare providers still choose what type of work they want to do and where they want to live in order to enjoy life and perhaps support a family.  For-profit companies still choose when and how to develop and manufacture drugs and technology, which are required to provide treatment and services. The government can’t afford to fund and/or control all these resources completely (even if some think it should).

Even if healthcare were universally acknowledged (and it isn’t) to be a basic human right, any comprehensive healthcare system will still have to ration healthcare services such as time with providers, technology, and treatments.  As a metastatic cancer patient, I am acutely aware of the rising cost of cancer care.  The drug keeping me alive would cost about $10,000 per month if I weren’t getting it free in a clinical trial.  Even if we acknowledge that everyone deserves to receive the treatments they need, we simply can’t afford to treat everyone with leading edge medical care at those prices.

A good example of this quandary is the new drug Sovaldi, which offers a breakthrough and long-awaited cure for Hepatitis C.    More than 3.2 million people are chronically infected with hepatitis C virus in the US.  A cure with Sovaldi currently costs about $84,000 per person.  A little math shows curing all the US patients would cost around $270 billion–and the cure is not permanent (people can get reinfected with the virus). Having health insurance cover that $270 billion could break the healthcare system and put premiums out of reach for many, no matter whether the system is structured as private pay, single payer (government health system), or a mixture of the two. So who gets the treatment?

Other countries with single payer, government-funded health plans solve this problem by limiting services they cover.  For instance, the National Health Service in the UK will not pay for the lung cancer drug, crizotinib (approximately $10k/mo), even though the drug can give a small population of lung cancer patients years of quality time.  When the government must consider how to use its resources to provide the best care for the nation as a whole, they decided the cost to keep that small group of cancer patients alive for only a year or two is too high.  So people who can afford crizotinib in the UK pay privately, creating a two-tiered health system.

You can’t duck the issue by simply saying, “Get rid of the gatekeeper insurance companies.”  Because healthcare resources are limited, and provided by a market economy, SOMEONE or SOMETHING is going to be the gatekeeper.  Who should it be?  Insurance companies? Government?  Healthcare providers?  Medical societies? Pharmaceutical companies?  Companies that manufacture generic drugs?  Research institutions?  Individuals?

To me, the most important questions are these:

1. What guidelines should our healthcare system use to determine who gets healthcare, so that everyone is treated in the same fair and ethical manner?

2. Who gets to make and enforce those decisions?

You might want to learn more about these questions.  The next person who declares bankruptcy due to a health crisis such as a heart attack or metastatic cancer may be you.  Or your child.

My Worst Speech EVER

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Last night I gave the worst speech of my life.  Everything that could go wrong, did.

I misunderstood the start time, and arrived late to the venue. Many of the seats in the once-filled room were now empty. People were partying audibly in the hallway.  I walked out onto the empty stage and discovered the fly of my pants was open.  I turned around to zip it, and when I turned back, a large potted plant blocked me.  I stepped around the plant to start speaking, and immediately began stammering nonsense.  An audience member in the front row imitated me and laughed. I finally found my words, but they were somewhere in the middle of my talk– everything was out of sequence.  I couldn’t find my place in my notes. Another audience member began lecturing about what I was doing wrong, and I had to ask him to be quiet so I could continue.  As I spoke, people stood up and walked out.  When I finished, none of the few remaining attendees clapped or looked at me.  I walked out of the building to find people on the street commenting to each other about how bad my speech had been.

I completely failed to deliver an effective speech.  And …

The world did not end. Life continued.

Living with metastatic cancer gives one a different perspective about small things like failure.  I don’t want to waste precious time fretting over what hasn’t gone right in my life.

Failure won’t kill me. It just teaches me what to do better the next time.

Like not having spicy barbeque sauce on a snack before bed.  It gives me weird dreams.  I’d rather not have that dream again.*
*Added that last sentence about 5 hours after the original post — evidently people didn’t catch my hint that this was a dream.  Sorry I was too subtle.  I don’t often hear that adjective applied to me!

Third Time’s a Charm

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Today I celebrate my three-year cancerversary. It was May 10, 2011, when biopsy results confirmed my lung cancer diagnosis.

My life has evolved quite a bit since that day. My first cancerversary in 2012 fell two days after my sixth (and last) dose of second line chemo, and a month before my second series of radiation treatments. I was stage IV, continually felt like I had the flu, and though hopeful, didn’t feel much like celebrating. My second cancerversary in 2013 fell sixth months into my current clinical trial. I had achieved No Evidence of Disease (NED) and focused on enjoying life, but was nearing the timeframe when others who took the same experimental drug typically progressed. I flew to Denver every 4 weeks for trial check-in, juggled side effects of treatments past and present, and felt anxious about the future.

My third cancerversary is different. Life no longer revolves around cancer treatment. I’m 17 months NED in my clinical trial, and the drug’s side effects are minimal. My visits to Denver every other month seem almost routine, with only a hint of scanxiety. I’m exercising most days, rebuilding my fitness level, and starting to lose the 60 pounds gifted to me by various cancer treatments. Physically, I’m less a cancer patient and more an out-of-shape fifty-something.

My life still revolves around lung cancer, but not in the same way. I’m busy most days with lung cancer patient advocacy. In addition to writing this blog for over a year, I moderate Lung Cancer Social Media (#LCSM) chats on Twitter and work with lung cancer nonprofits, healthcare professionals, researchers, and patient advocates to raise awareness and support of lung cancer issues such as benefits of mutation testing, screening with low dose CT, living with metastatic cancer as a chronic illness, and the need for increased research funding.

To celebrate this cancerversary, my husband and I spent a quiet vacation week in Whistler BC. The drive from Vancouver along Howe Sound into the volcanic coastal range (via Sea to Sky Highway) showcased Mother Nature at her finest. I enjoyed exploring Whistler Village and surrounds as well as writing. As I watched the snowboarders walking down from the Blackcomb gondola, I did feel a twinge of regret that I can no longer ski. However, I later reveled in the warm sun as I walked the mile around Lost Lake (2200 feet elevation!) at a moderate pace, with only a few stops–I could not have done that in 2011, 2012, or 2013.

So life has returned to an acceptable state of normality. At this point in time, a headache is just a headache—it doesn’t automatically trigger anxiety about brain mets. I look forward to seeing my son graduate from college next May. I accepted a commitment in fall 2015 without first asking if I’d be alive on that date. I know my targeted therapy cancer pill likley will fail me someday, but I now can go weeks without thinking about that.

As Trillian says in Hitchhiker’s Guide to the Galaxy:
“We have normality. I repeat, we have normality. Anything you still can’t cope with is therefore your own problem.”


Howe Sound, British Columbia


Sea to Sky Highway, British Columbia

Lost Lake Outflow near Whistler BC

Sharing End-of-Life Preferences

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Occasionally in my online lung cancer support group, a family member or caregiver wonders if they made the right treatment choices for their loved one. I can’t imagine the anguish felt by a spouse or partner wondering if they should have agreed to a radiation treatment or that last round of chemo, especially when it made the patient miserable without preventing their death.

Such personal stories emphasize to me the importance of open communication about illness and dying. Too often we are so busy fearing and avoiding death that we forget to ask each other what we’re really thinking and feeling.

I think both lung cancer patients and their family members need to let each other know it’s OK to talk about the possibility of dying sooner rather than later. After all, we are ALL going to die sometime. We need to let each other know under what conditions we would want our lives prolonged by cancer treatment, antibiotics, machines, or CPR. Most of us will face such choices towards the end of our lives, even if we simply grow old.

Preferably we would have such conversations when life is bright and happy, before an accident or illness makes the conversation urgent. However, we tend to avoid the subject, so the conversation is forced by circumstances, or ignored entirely until the opportunity is no longer available. We lung cancer patients and caregivers need to look for ways to encourage such discussions.

“The Conversation Project” aims to promote such conversations about death and our end-of-life preferences. Their statistics: “60% of people say that making sure their family is not burdened by tough decisions is ‘extremely important,'” yet “56% have not communicated their end-of-life wishes.” The site offers videos, a starter kit and suggestions to get the discussion going.

Please let your spouse/partner and older children know you’re open to talking about death, and have thoughts you want to share. Don’t leave your family members wondering if they followed your wishes.

Tangled Thoughts from a Restless Mind (a reblog)

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Joining an online community of lung cancer patients and caregivers is wonderfully supportive, informative, even lifesaving.  But members must  pay dues by weathering frequent losses of friends.

Saturday night, March 29,  2014, another young stage 4 lung cancer patient died of her disease.  Jessica Rice, age 33, who tweeted as @stage4blog and blogged at stage iv.wordpress.com, gave hope and inspiration to many lung cancer survivors before succumbing to multiple brain metastases.

Sometimes it’s too much.  Tori Tomalia (@lil_lytnin, who blogs at A Lil Lytnin’ Around the World) reflected on this in her blog yesterday.  She voiced what many of us feel when we learn of another death in the lung cancer community.  She said it so well, I asked to reblog her post from Sunday, March 30. Here is her blog entry, reposted with permission.

 

Tangled Thoughts from a Restless Mind

by Tori Tomalia

“Enjoy yourself, it’s later than you think.”

I’m tired of being reminded of the fleeting nature of our time on Earth.
I’m tired of being aware that this can all end so quickly.
I’m tired of knowing how important it is to stop and smell the roses, that the frost is coming soon.
I’m tired of happy moments carrying the pang of realization that this can be gone in the blink of an eye.

Understanding the importance of living for today is a terribly heavy weight to carry.

“when Time and Life shook hands and said goodbye.”

I’m so tired of people in my community dying.

Perspective Check

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Signs of spring continue to accumulate in Western Washington. Fruit trees bloom. Rain falls — this March is our wettest month EVER in Washington. And, as occasionally happens after heavy rains, landslides occur.

A week ago, three million dump truck loads of liquified mountain descended onto the small community of Oso, Washington. In some parts of the one-square-mile slide zone, mud is ten to twelve feet deep.

While at times it’s tough for me to live from scan to scan, I imagine it’s much harder to have one’s home, family, and community wiped out in mere seconds. Recovery efforts continue, but the odds of finding people alive at this point are slim. One young woman lost both her mother and her 4-month-old daughter in the disaster. Others are uncertain if their loved ones were in the slide zone, perhaps on the now-buried highway that passed through the town.

Yet survivors still struggle toward the light, much as blades of grass in our so-called lawn fight to emerge from under a smothering expanse of moss each spring.

There are worse things than cancer. Even so, life goes on.

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)

About the Manner of My Death

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[In case you’re worried, I’m feeling fine, still have No Evidence of Disease and am not in danger of dying soon. My clinical trial oncologist thinks I have a 75-80% chance of making it to 2016 given the current lung cancer treatment options – longer if new treatments are developed in the next couple of years.]

I have lost friends recently to lung cancer, and fellow patients have been discussing hospice and the dying process in the Inspire.com Lung Cancer Support Community. This got me thinking.

I do not fear death, but I must admit I do fear parts of the dying process: stuck in bed, unable to express my wishes, being totally dependent on others to take care of my basic needs. I watched both parents die of dementia, and I know they did not want to go that way. I don’t either.

I’m trying to do my thinking about the manner of my death now when I’m relatively clearheaded and comfortable, because I want to explain my wishes to my family in advance. The problem is that none of us can know for certain what the manner of our death will look like. My lung cancer might return only in my lungs and gradually steal my breath; that can be controlled by pain meds. However, I might experience substantial brain mets or oxygen deprivation that could impair my thinking and gradually take away who I am. That second scenario is the one I fear most. I fear its impact on my family, who would have to watch my cognitive decline as well as care for my physical needs. Losing my parents by inches was hard on me and my siblings, and I don’t want to be the source of that pain for others.

While part of me would like to stay at home as long as possible, surrounded by familiar things and people and pets, another part of me thinks the burden on my family would be too great. I’ve seen the physical toll home hospice can take on the caregiver. Perhaps being placed in a hospice facility when the time comes would be a better approach.

I’m lucky to have a third option. I’ve recently been reviewing my state’s Death with Dignity Act. Under this law, terminally ill patients have the right to self administer meds that will end their lives. Maybe I’ll throw a party to say my goodbyes, then go home and decide the time and manner of my death myself. Yet … are there existential consequences for messing with the Fates timelines?

The angst continues. At least I have choices.

Sunny with a Tinge of Dark

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This morning, after I checked a few posts and messages in an online cancer forum, hubby Gerry and I made a Costco run.  Our conversation en route was pleasant enough, but I found myself feeling increasingly grouchy.  Today was a crispy, brilliantly sunny day in Western Washington. Why was I leaning towards dark?

When I started talking to Gerry about conversations on the cancer forum, I realized why. A friend in my ROS1 lung cancer trial who has been on Xalkori for a year longer than me and whose cancer is slower growing than mine, told me his last scan showed a possible progression.

He was calm and composed about this.  Both he and I had been told the effectiveness of Xalkori against our ROS1 cancers won’t last forever, that we’ll eventually develop resistance to the drug.  We both were given contingency plans for treatment once progression showed up.  This wasn’t an earth-shaking, end-of-life event.

But yet, it was a noteworthy event for me.  Those hypothetical discussions had just become real.

I’ve had clean scans for ten months.  I usually feel good (I’m used to overlooking both the temporary and permanent side effects of treatment). I’m exercising and gradually regaining some of the muscle mass I lost in cancer treatment.  I’m writing again.  I’m going out with friends.  I’m even planning some vacation travel for next year.  Most days, I don’t think of myself as a cancer patient.  I can sometimes even blog about my cancer without the gut-wrenching realization “I have CANCER” sneaking into my awareness.  Life is … NORMAL (for unusual definitions of “normal”).

But normal will not last. Cancer survivor reality raised its ugly head. Someone among the thirty-some members of my ROS1 clinical trial — someone I know personally — probably has progressed.  We ROS1ers are NOT invincible.  Xalkori will NOT last forever.  This time next year, I might be dealing once again with radiation, chemo, or a new trial drug. My grouchiness was similar to that caused by scanxiety: I had to face the reality that my cancer will likely come back.

Once I identified the source of my fears, the momentary darkness passed, and life went on.

We bought a nice bottle of Bailey’s Irish Cream at Costco.

Thinking ahead — step 7

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It’s only taken me fifteen years, but I’m finally tackling that last piece of my estate plan: the “cheat sheet” for my family/personal representative that tells where to find assets, who to contact, what online accounts to shut down, passwords, etc (and a note about my end-of-life and memorial service preferences). No matter how long I plan to be around, it’s good to know I’m making things a bit easier for whoever may be left behind.