Oh yeah

I think my kids likely know me better than anyone else. And last night my youngest sent me this message:

It’s such an accurate and succinct summary of who I am. Complacency equals complicity is one of my guiding principles. Speaking up and out is integral to everything I believe in.

But I also like to keep a low profile; not make a fuss until it’s really necessary. Confrontation isn’t something I enjoy, but at times it is unavoidable.

To this end I am fearless. Not that it was always so–first I had to get to a place where I no longer felt constrained by what other’s thought of me. Now that’s a super power–not giving a fuck. But (and this is a big but) only if it is combined with integrity and a lack of ego/personal agenda. I mean, you don’t want to be obnoxious or oblivious to the comfort of others. Or, at least, I don’t.

I also (ahem) don’t have much respect for authority. Never did. Ask my parents or all the school administrators that I was on a first name basis with. In fact, I don’t really recognize authority. Expertise and wisdom, yes. But rules? Again, I have no desire to make life tougher than it needs to be, for me or for you. But I shall always question the status quo. Anything that is a human construct will be taken only so seriously. I’m pretty certain why was my first first word. And then not. As in, why not?

Truth. Equity. Veracity. Courage. These are my go-to words now. And if that means trouble, well, I can deal.

On being heard

In the comments following the previous blog my sweet friend Nancy expressed concern that perhaps the conference I just attended had been a waste of my precious time.

Nancy is correct about one thing–my time is very precious.

As for the conference, I was a panelist. However, my panel was the very last on the schedule. Those of you who attend conferences know that by the final slot, 30-50% of the attendees have slipped out the door, as most of them have flights to catch.

Somebody has to go last and I suppose it may as well be me. And there were patients scattered throughout other presentations. However, most of those patients had scant experience in clinical trials. You wouldn’t ask a podiatrist to serve on a panel specifically about cardiology, so why the more lax approach toward patient experts?

Sadly, I think this is because our position at these conferences is yet relatively token; that we are not actually recognized as experts.

I agreed to attend this conference as I viewed it as an opportunity to listen and learn. And I made absolutely sure that my (our) voice was heard, as there were ample opportunities to comment or ask questions.

Generally my viewpoint was rather contentious. The first time I went to the mic it was because a presenter was describing clinical trial participants as ‘heroes.’ I let him know how distasteful I found that word. Patronizing. Over the top in a ‘let’s just put ten gold stars at the top of the page’ sort of way. Trite, cheap, inaccurate. A wink, if you will. Even if it is well intended.

I didn’t choose this path, it chose me. And calling me a hero isn’t the sort of recognition I want. Give me something solid, like supportive services.

Another time a panel was addressing the issue of enrolling underrepresented populations in clinical trials. This is all good, I said. But make darn sure (see above) that you understand that clinical trials are time consuming, often require travel, and are more costly. That it’s important to make certain participation is sustainable. I was stopped by a gentleman later who asked if it was true that only drug was paid for in a clinical trial. In my case, yes.

And of course I expressed my frustration with the whole more is better data thing. I view the emphasis on returning data to patients as a bit of a smoke screen. ‘I am a data cow’ I said–my outlandish number of scans evidence.

I am undoubtedly the square peg at these meetings—but then again, I have been places that most will never go and I feel it is vitally important to share this experience. Gratifyingly, a number of people took me aside to thank me for speaking up and out. It felt good to have my viewpoint acknowledged.

Tomorrow I will be participating in another meeting, this one with the FDA. I think it could be interesting ๐Ÿ˜‰

Here we go again

Last week I traveled to Philadelphia to participate in the Patients as Partners US 2019 conference.

It was an honor and a privilege to be invited. But also, at times, incredibly frustrating. And that is because I am highly skeptical when it comes to the rhetoric surrounding Patients as Partners.

Like most events of this ilk, there were lots of people from industry, regulators, a few clinicians and perhaps a researcher or two along with a tiny handful of patients. Self described as ‘the only conference in the US that demonstrates how to involve patients throughout the entire medicines development life cycle to drive greater efficiencies in clinical research‘, the sessions had titles like ‘What does a patient-focused clinical trial really look like?’ Patient centricity, patient engagement and the ‘democratization of patient data ownership’; all were topics of discussion.

Per usual, though patients were the purported focus, there was far more talking about us than speaking with us.

This confounds me. I mean, with three phase I clinical trials under my belt, I am a bit like an astronaut who’s made multiple moon shots. And, rather than asking me, the astronaut, what space is like, the non-astronauts are up there on stage describing my experience. Talk about out of body.

It reminds me of the time someone asked my (then) husband and I about how the labor for our son had gone. My husband, the person who hadn’t given birth, responded ‘easy.’ I, who had struggled mightily to birth a ten pound four ounce baby vaginally, demurred. I was the authority on my own experience, not a by-stander.

When it comes to clinical trials, I have an equally hard time listening to the non-experts opine.

The fact that I and other patients were even invited to this conference (and in some cases to take the mic) remains groundbreaking. However, patient engagement and patient centricity and patient involvement from the ground up would seem to imply that patients should play a far greater role. Put patients on your planning committee. Take us out of the audience and put more of us up on the stage. Involving us every step of the way–‘the entire life cycle’–might just result in ‘greater efficiencies.’ Because some of the most useful data is anecdotal–data you will only capture if you give patients an opportunity to speak and–you listen.

LOVE

I feel it. Coming in from all sides. Cradling me, like a nest around an egg. Buoying me, like the waves beneath a boat. Holding me tight, like one big group hug.

There’s something flipping wonderful about having a personal motto that is ‘all people are my people’. I love me some people. By FAR my favorite animal, and that’s saying something, as the animal kingdom is rife with coolness.

The thing is, when you love other people, they tend to love you back. Magic, that. I mean, really, truly, some special sauce. And the best thing is, you can spread that shit around.

So here goes.

I LOVE YOU I LOVE YOU I LOVE YOU.

xo

Personal skinny

I had my every six week oncology appointment yesterday. Echocardiogram, labs, and a consult with Dr. Shaw’s nurse practitioner Jen Logan followed by a visit to my social worker.

It was an opportunity to double back and clarify whether or not the way I perceive my current situation is accurate. And, it would seem, I hold no illusions.

In a nutshell. My cancer is yet ALK+, and therefore partially responsive to inhibition with lorlatinib. However, the two newly acquired secondary mutations are preventing the lorlatinib molecule from binding as completely as before. Hence, the resistance. And–unfortunately–these acquired mutations are not actionable; there is no effective inhibitor for either of them.

Fortunately, my cancer is not aggressive. Nor is it indolent–but after fourteen years, we have a pretty clear understanding of how fast it grows.

Simply put, barring any new developments, I figure two years.

That can feel like a little or a lot, depending on your perspective. And as I have already wrapped my head around a much shorter time frame (3-5 months) I can do this.

However, it is also important to remember that although I am talking about a probability, possibility is not out of the question.

To this end, Jen assured me that Dr. Shaw is reaching out to both chemists and researchers urging them to come up with a magic molecule. It could just happen.

If it doesn’t, we can try a combination therapy. However, unless there is some not yet identified synergistic effect, it is unlikely this approach would be successful for my increasingly resistant cancer.

Worse comes to worse, I could return to chemotherapy (this would be the third time) in an effort to abate symptoms and possibly stabilize the cancer.

As we finished talking about possible scenarios, Jen asked me if there was anything I was particularly scared of or worried about.

I told her that I was sad but not afraid. And still hopeful. As for worries, two things. I’m not crazy about the way I’m going to die. I’d like to remain calm and I understand that not being able to breathe is going to make me feel panicky no matter how much self control I exercise. But my biggest worry is my three kids. They are all grown-ups now (something I am so grateful I got to experience) and I know they’ll be fine but we’d all prefer to have their mom hang around.

It was hard but also good, to speak of the future and the potential lack thereof. Jen asked me how I keep my cool and I told her it was time and practice. This is not my first death rehearsal.

xo

Medicine should not be a luxury good

First, for those of you who are starting to shift in your seats, I have not lost my mind. Rather, I have come to a place of clarity. Truly.

I have done my due diligence. Put in the hours. Decided that just being polite (ie: expressing gratitude and playing along nicely like a well mannered advocate) is not going to cut it.

Nope. People are dying out here and I am one of them. Raising awareness? I haven’t got time for that. And, frankly, I question the actual value. It’s simply not enough to make people aware, we need to make them care.

Care not just about lung cancer, but also about core values. I mean, how did we come to a place where the primary incentive for developing drugs is financial?

Think about it. A pill is not a diamond—it’s just some powder encased in gelatin. And yet, because this system is so incredibly screwed up, the pharmaceutical industry is able to justify charging thousands and thousands of dollars for a months supply. Why? It goes back to something referred to as intellectual property. Essentially, justification for recouping investment. And, of course, reaping profit.

Well, I have to tell you that as a working artist, I don’t base the prices of my artwork on a concept as nebulous as intellectual property. If I did, my paintings would be priceless.

The incentive for developing new drugs should be, simply put, to ease human suffering. In fact, let’s drop incentive and instead call it moral imperative. And once developed no drug should be so dear, so ridiculously expensive, that those who truly need it cannot afford it.

Illness should not be viewed as an opportunity; healthcare as an industry. Which is not to say that researchers, providers, insurers, or those in the pharmaceutical business should work for free.

Appropriate compensation is justified. Over the top salaries such as those paid to these pharmaceutical CEO’s are not.

The Great Dictator was a satire made by Charlie Chaplin In 1940 and I am going to close today’s diatribe with this. A political vehicle, it condemned both fascism and antisemitism. The movie concludes with a speech that remains transcendent, and which is pertinent to far more than politics. Please take a few minutes to watch. And then think. Really think. About reason.

Let us fight for a world of reason. A world where science and progress will lead to all men’s happiness.

Mr Chaplin

No shit

Read this article from the NYT’s about the booming industry behind fecal transplants and weep.

“At the heart of the controversy is a question of classification: Are the fecal microbiota that cure C. diff a drug, or are they more akin to organs, tissues and blood products that are transferred from the healthy to treat the sick? The answer will determine how the Food and Drug Administration regulates the procedure, how much it costs and who gets to profit.”

Well, I could answer that question rather quickly. But as someone who has lost exclusive ownership of my own organs, tissue and blood products, I understand it’s a lot more complicated. What’s mine is not really mine.

โ€œAn obscene amount of money is being thrown around by companies trying to profit off of what nature made,โ€ said Dr. Khoruts. โ€œI donโ€™t think there are clear villains here, but I worry that the regulators are not caught up on the latest science and that the interests of investors may be exceeding those of patients.โ€

Ok, I know I’m becoming rather shrill but tell me this is not a refrain.

Much like the fight over prescription drug prices, the โ€œpoop wars,โ€ as one doctor described it, mirrors long-running tensions in American health care between pharmaceutical companies and patients.”

Yes yes yes yes yes yes yes.

What if the pharmaceutical industry had a different model? Charging as much as the market will bear–the old supply and demand of capitalism– views illness as an opportunity. That is an inherently ugly concept. Imagine that rather than striving to deliver obscene profits to investors, pharmaceutical companies sought to develop the highest number of therapies at the lowest cost to consumers?

Medicine should not be a luxury good, but rather something that is accessible to all who need it. Think public education. And although I am not a market analyst and so can’t specifically address the feasibility of my proposal, I have to think that it is doable. But it will require a seismic shift in values.

As someone with skin (and plasma) in the game, I want to tell you that it sickens me that my contribution to science has been sullied by what I view as greed. Disease is a hardship, not a business opportunity. I have volunteered my time (right? I’m referred to as a volunteer in those protocols I sign) and I expect those of you who have continuously profited off of the misfortune of myself and others to reevaluate your motives. Consider this. At the end of the day would you rather see more drugs developed and marketed at costs that are affordable, thereby helping many, many people, or a higher profit margin, benefitting a few?

The answer to that question should be easy as well.