Working it

Last week I spent two days at pharmaceutical companies in Cambridge MA (a mecca for pharma) describing my personal experience with cancer and clinical trials.

As an advocate/activist for lung cancer, I continue to represent the viewpoint that those of us in clinical trials should be treated with deference and respect. That words such as compliant and noncompliant should just go away. That we be compensated for our time just as healthy volunteers are. Perhaps most importantly, that no one lose track of the fact that we are human beings, who are enrolling in medical research not because we want an advanced degree in community service, but rather because we are hoping that these experimental therapies will extend our lives. As people, it is our right to assume that we will not be subjected to a plethora of non clinically indicated testing–we are more than our tissue. That we are pleased that our contribution will help others but that it is not and should not be our primary onus. We, like everyone else, wish to live. And we want to do so with dignity and respect. The current model of more blood, more sweat, more tears, more money has got to be realigned. If it is, recalcitrant issues like accrual and disparity will be addressed as well. Win win.

Blue in the face I am, repeating this message for so long now. However, and this is important, I am beginning to feel heard. The emphasis on partnering with patients—more an aspiration than a reality—means there is far greater interest in learning from patient experiences. ‘We are sentient beings’, I remind my audience. Unlike the white mice who are our direct mammalian predecessors when research moves from in vitro to in vivo, we can communicate. ‘Talk to us’, I say. Listen. Learn. Stop making it so damn complicated. Make us true members of the team and treat us like the astronauts we are.

In September I will have the opportunity to travel to Barcelona as faculty for the annual meeting of the IASLC. I will once again be discussing my experience in clinical trials. Patient as partner; and faculty. It has taken a long time and we have far to travel yet, but progress is being made.

Keep talking.

10 responses to “Working it

  1. Good going, Linnea!!!

  2. This is so true. When my sister was in a clinical trial at NIH, I felt like they treated her as a lab rat. First, the room she was given had two beds. There was a patient in the next bed but they moved her out soon after my sisters arrival. After my sister contracted C-diff, we found out that was the reason the other patient was moved. Did they move my sister? No. But a day later another patient showed up and NIH had not disinfected the room. WTF. The nurses could have been nicer and the head researcher was indifferent. As you said, people enroll in clinical trials to save their own lives, not to help researchers publish journal articles or advance medical science. The patient should not be treated like a lab rat but with respect and dignity and the knowledge that they enrolled in the first place because it could be their last hope for survival. Researchers need to come down off their pedestals and be more aware that their patients have not given up and that they didn’t come there to die.

  3. “Treat us like the astronauts we are.” Love it!

  4. Thank you for all you do to advocate on behalf of all of us! Awesome job!
    Sharon

  5. You’re a rockstar! Thank you for everything you do!

  6. Linnea, You never fail to impress me in so many ways. It’s awesome that your hard, persistent work is finally starting to pay off, because you are such an effective communicator and such a bad-ass! These changes to the way trial participants are treated will improve the conditions for not just lung cancer patients, but will certainly create policies that will be adopted for all trials. Thank you for that!!
    You are right, that no one is in these trials out of the goodness of their hearts. When Peter had to segue to trials as his only option, he did it to stay alive. But we did have the discussion about “paying it forward”. We knew that his additional 3-4 years of life, was because of the sacrifice of hundreds or thousands of people that came before him.
    But I am grateful for one other significant blessing; you and Peter have/had the good fortune, comfort, and belief of knowing that when there was an unexpected side effect or emergent situation; nights or weekends, (which is when this shit always happens!) that Dr. Shaw or Dr. Lin are/were ALWAYS available! And did whatever they needed to; phone in a script, by-pass the ER, or push for a thoracentesis on a Friday afternoon. And for Peter, they did it from 300 miles away in Rochester. I am certain, that so many who are going through the discomfort and fear of a trial, aren’t nearly as fortunate.

  7. Bravo! Well said! Also, thanks for all you do on behalf of lung cancer patients, and the bigger picture of life. You have given all a voice 💕

  8. Judy Kasey-Houlette

    Keep rocking our world, Linnea! Good on you!!

  9. That is eloquently expressed. Yes, astronauts. That is a powerful metaphor. Thank you for sharing this.

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