Category Archives: Advocacy

Patients talk about Clinical Trials

Couple of my friends/fellow panelists shared this video on facebook and I felt I probably ought to do the same. This is from last spring–thank you Bonnie Addario for inviting us to participate and share our experiences and viewpoints. Together we are moving that needle.

Salty blog

From the Harvard Medical School online journal, what might be my favorite descriptor ever. Best served hot.

Patient Perspective: Linnea Olson, Cancer Activist.

Clinical Trials Transformation Initiative

Every once in a blue moon I have the opportunity to participate in a project that feels truly substantive. Transformational, even. Last week I was in Silver Springs, Maryland serving on a panel at a workshop that was a collaboration between CTTI (Clinical Trials Transformation Initiative) and the FDA (Food and Drug Administration).

The last supper? Hopefully one of many.

It was a full day of intelligent dialogue about the actual patient experience per clinical trials. Barriers, burdens, successes, failures. With a clear focus on ways of doing better.

Cary Medosch, Bray Patrick-Lake, Linnea Olson 🙂

I am grateful to Duke, CTTI and the FDA for the opportunity to have this conversation. I left feeling very hopeful. For those of you who are curious as to what transpired, the workshop was recorded and you can view the video by following this link. My session was the third; but all of them well worth watching.

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.

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

I don’t have to tell you how I feel about this…

Now this is compensation. Not mine, his.

But I will. Ludicrous and, frankly, almost criminal. First of all, no one needs an annual salary of $27.9 million. What on earth would you even spend that much money on? Purchase your own country?

Secondly, I take this over the top salary personally. I can’t help but feel that my individual contribution (over seven years of my life spent as an early participant in two phase one clinical trials for Pfizer) helped feather this fellow’s fine nest. 

It is as if I am the serf and this is my lord. Clinical trials as a feudal system? Not so far off the mark, yet oddly out of place and time in this modern day democracy in which we now (co)exist. 

However, I have an idea. Ian C. Read could decide to share some of that massive salary, just as I have so generously shared the fruits of my labor (not to mention a whole lot of plasma). 

And he could start by taking care of my parking fees.

Every breath we take

November is national lung cancer awareness month, thirty days devoted to increasing public perception of our shitty disease. And for those who are counting, breast cancer, in October, gets thirty-one.

But then, seriously, WTF with these days and these months? Does anybody really believe that white ribboned apparel is flying off the shelves? And even if it is, that it truly makes a difference to anybody but the t-shirt vendor?

I guess 160,000 people dying annually isn’t attention grabbing enough.

You know how many lung cancer months I have personally observed? 163, the number of Jan/Feb/Mar etc… since my own diagnosis with lung cancer. I, like most people, never gave lung cancer a thought until it smacked me hard upside the head.

Therein lies the problem. How do we entice others to care about something that seemingly has no impact on their own lives?

I understand that a day and a month devoted to lung cancer awareness is well intended. But to me, an increasingly cranky iconoclast, it actually trivializes my experience.

What I want (and no, I don’t believe it is too much to ask) is for people to be aware of lung cancer every single day and month. To understand that not only is it important to care about those who have already been diagnosed, it is also critical that we all start thinking about the air we breathe. Because that, my friends, is the one thing that all of us with lung cancer share. We inhaled–exposing the tissue in our lungs to harmful particulates and carcinogens in the atmosphere surrounding us. 960 times an hour, with the average person taking between 17,280 and 23,040 breaths daily.

So yes, awareness of lung cancer should be as secondary to daily living as breathing in and out. Because baby, that’s risky business. If you’ve got lungs, you can get lung cancer.

And that’s enough to make a person care.