Since being diagnosed with cancer a few months ago, I have been in an unwanted crash course on the patient perspective of everything I’ve been writing about biopharma for the past several years. It’s an eye-opener.

Genetic testing, lack of research, unmet medical need, off-label use, drug shortages, adverse events, informed consent, clinical trial data that don’t represent real-world practice, drug-drug interactions, co-morbidities, labeling precautions, reimbursement, data-sharing vs. privacy issues. ... Up until now, these were all topics I wrote about or discussed with my colleagues during our news meetings. Now, they’re personal. They impact my daily life and could determine my future.

Suddenly, I am far more invested in these issues than a drug company shareholder who only has money on the line. Unlike most National Institutes of Health-funded researchers or FDA reviewers, I have real skin in the game. And yet my voice, and that of other patients, is at best a faint whisper when it comes to addressing the challenges of drug development, regulation and reimbursement.

Yes, there’s been a lot of talk lately about patient-centered medicine. While regulators are still trying to get their heads around what that means, the FDA points to its track record of including patient representatives on advisory committees and giving patients opportunities to be heard. But too often, the patient reps sit mutely throughout the adcom meetings – unless they have a medical background from which to speak. And the patient voices raised in the adcom public hearings tend to be ignored by the statisticians and experts on the panel or outshouted by self-appointed watchdog groups intent on protecting patients from themselves and the “overreach of a too-industry-friendly” FDA.

Meanwhile, several biopharma companies are making strides on their own, working with focus groups and patient organizations to design meaningful trial endpoints and respond to significant patient issues. But their efforts are sometimes hampered by FDA constraints on what a drugmaker can say about an experimental product.

What do I want as a patient?

Like others, I want – no, I expect – my voice to be heard. Not just in the approval process, but also in the research, development and reimbursement discussions. And I want to be able to question researchers, drugmakers, regulators and my doctors.

I want to know that research money is being spent to accelerate cures that are desperately needed – not just to make treatments more convenient, to satisfy curiosity or to serve a political or researcher’s personal agenda. And when research funds are awarded, I expect them to be used with integrity and for the intended purpose.

I also want to know that the investment, and the investment framework, is there to turn promising concepts into treatments that will offer not only hope but also life.

I want to know that clinical trials tested a drug in people like me. And I want to know if the trial results actually play out in the real world. That means I expect to hear about ongoing efficacy – not just adverse events or anecdotal evidence – once a drug has been approved. More specifically, I want to know what a drug will do to MY body and if it’s the best course of treatment for ME.

And I expect the drugs that I take to be sterile, properly dosed and untampered with. I also want them to be fairly priced so they’re affordable and yet the drug companies have the funds to continue to innovate. When I’m at my weakest, the last thing I need is to be given a substandard drug or have treatments denied because they’re too costly, in short supply or don’t exist.

In the past, patients have been seen as the passive end users of a drug. Today, we are rightly demanding more. We are the center, the heart and soul, the raison d’etre of this industry. It is time to listen to our voice.