You know, I get it. I understand that, when you attend a session to talk about drug shortages and the speakers are a congressman, directors of this, and senior researchers of that, the conversation is going to be at a certain level. That is, aimed at all stakeholders except for us. You know, the ones who could die if the problem isn’t fixed.
This week, I sat in on one such session. (When I wrote about drug shortages a couple of weeks ago, I wasn’t aware that there would be an event that corresponded so well.)
The information communicated was great. Congress is working on it, and the differences between party priorities are minor because, as we know, disease does not discriminate, and everyone’s constituents are in danger. The Senate has a bill that would help them assess criticality (how deadly the inability to get the drug would be), reach (how many people are affected), supply chain vulnerabilities, and the access and efficiency of the possible solutions.
Executive agencies are working on it, too. The FDA has programs. They are looking for and mapping supply chain vulnerabilities. They are looking at solutions that address resiliency and redundancy and are considering going to other countries for help.
Great! Lots of people are working on it. They are taking it seriously.
But what they are working on is future solutions.
That doesn’t help us now.
Now, today, we have a situation that threatens our lives. Since this is the landscape we have, this is the one we need to work with. Patients and clinicians have the right to discuss options, no matter how grim, and decide together what to do in a situation where your life-critical drug becomes unavailable.
The speakers in this session were primarily policy professionals, plus representatives from the supply chain and distributors industry associations representatives. Why wasn’t there at least one physician to talk about the impact to their practices and on their patients, and maybe even talk about what those discussions would look like.
Or even someone from a manufacturer who could talk about the practicalities: How do shortages come about? How long do they tend to last? What are the factors that contribute to both the problem and the solutions?
You know, all the things patients and clinicians need to know in order to brace for what’s coming.
At the very end, they entertained one question about what impact the drug shortages are having on patients which is impossible to answer because it depends on the drug. Going without an ADHD medication would be horrible, but it’s not the same as going without chemo meds.
And everything was laid out in terms of monetary cost. One panelist stated that a value of life impact from the shortage of one drug was $7 billion.
That’s a lot! But when you are losing ground with your condition every day and the threat of a shorter or more limited life looms over you, a figure like that sure makes you feel like you are a statistic instead of a human being.
I think you can hear my disappointment with this session. Its title mentioned finding solutions to drug shortages, which is why I attended. I had never attended anything put on by this organization, but it is a Capitol Hill-centric publication, and a good one, so the policy angle was to be expected. But with patient-centricity rising as a consideration, I thought they would be talking about what we could do now, as opposed to what they were planning to do sometime in the future after we have already lost lives to the shortages.
My dad always accused me of being Pollyannish. Guess I should have paid better attention to the agenda.
Post script: Shoutout to the panelist who mentioned 77 minutes into the session, “And ultimately, patients, because they’re a part of this, too.”
Thank you, Michael Kleinrock, Director of Research Development at IQVIA Institute for Human Data Science, for being the only one to acknowledge patients as more than just a vague puzzle piece, but as an actual stakeholder in this mess.