Getting it right about research

Medical Research (capital M, capital R) is often the star when cancer patients talk about their continuing survival.

I’ve sung the praises of research again and again. Without it, I’d be dead.

However, the part of the story that often gets glossed over is that medical research requires human subjects. And that particularly in phase I trials (designed to assess safety not efficacy), these human subjects are taking on quite a lot.

MTD, or maximum tolerable dose, is determined in phase I trials. You know how? Someone experiences side effects that are not tolerable. Tolerable is a word with a lot of latitude. As I begin my fourth phase I clinical trial, I can tell you that it takes both courage and an ability to navigate uncertainty and discomfort that frankly, many don’t possess.

Clinical trial participants are the unpaid labor force that moves experimental therapeutics to market. We take on enormous risk as well as additional expense. Our skin in the game is the real deal, from blood draws (thirty teaspoons at cycle one this time) and biopsies, we provide the necessary specimens. We agree to take drugs that no humans have taken before. In exchange, if we are lucky, our lives might be extended—maybe even long enough to enter yet another trial.

Because frankly, if trials are not a one and done, then they become a literal way of life. I have now spent a decade, or one sixth of my life, as a clinical trial participant. That’s a lot of heavy duty community service.

However, it wasn’t altruism but rather a desire to stay alive that led me to my participation. That in no way lessens the contribution though. Veterans of combat are honored for their service, not their motivations.

If we want to have clinical trial participants recognized as partners rather than merely participants, we need to change the way we talk about trials. Don’t just thank medical research, acknowledge as well the contribution of those individuals who ‘volunteer’ their time, tissue and finances. Recognize that medical research simply could not happen without these sacrifices.

Next time you express your gratitude to medical research, try saying this instead: “I would like to thank medical research and all those brave individuals who participated in the clinical trials that brought this drug to market.” It’s a mouthful. But frankly, it’s the least we can all do. Remind the world that without trial participants, research isn’t going any further than the lab. And I’m not just talking tissue, this is all about teamwork.

Honor that.

8 responses to “Getting it right about research

  1. I do hon our it – And am very grateful Linnea – Might need those drugs one day

  2. I work in the Cancer Research department in an Illinois hospital. i am sharing this with everyone. You are to be thanked and honored, as are all our brave patients. Hope your words can support our team in continuing to care and have gratitude for our patients. It is because of their (your) sacrifices that many of yesterday’s clinical trials have led to today’s standard of care.I thank you.

  3. Linnea, You know how I feel about your amazing participation in these trials and your important advocacy for your self and fellow participants in these trials. I would edit your suggestion this way:.” I would like to thank all those brave individuals who participated in the clinical trials of this Medical Research that brought this drug to market.”✊🏼❤️

  4. As a ten year survivor of NSCLC, I applaud you and all clinical trial participants. I may be one myself in the not so distant future. 💗💗

  5. You got it right. It is a haven burden sometimes. I am in a drug trial since August last year and at first it was all still new but now the panic slowly sets in. I have to have CT scans every 6 weeks which by itself is totally unnerving not the scan but the results. Anyways I do feel extremely well and am very lucky not to have any side effects. So thumbs up to all of us research participants and may we be around for a long time.

  6. Indeed and well said.

  7. Linnea, you are staunch and valiant and so very eloquent. Thank you for your advocacy, especially during a trial, which is a time of trial.

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