Welcome, Kapila, thank you for being here. I really appreciate your making the time.

Thank you to you and the Takeda Oncology team for making time for us to hear about the MPN Research Foundation and the patient community that we support.

What is it that you think would be important for folks to know around polycythemia vera?

PV specifically is characterized by an increase and an overproduction of red blood cells that we call erythrocytosis. And so, you can imagine if your body is producing too many red blood cells, a lot of things can feel off, right?

I think the number one takeaway that I would love for people to know about living with PV is just how unique each patient’s experience is.

So, Kapila, talk to me about the symptoms.

I think the number one symptom that PV patients report experiencing is fatigue. Hands down, it is the most widely reported, and it can vary from patient to patient. But what it really means is that it’s impacting their quality of life and what they’re able to do on a day-to-day basis.

It’s almost an unfortunate nomenclature because it is clear to me that this is very different. This is sort of like an exhaustion level that even precludes them from getting out of bed sometimes.

Yeah, another one that is probably unique to polycythemia vera is called pruritus, or itching. What happens with PV patients is they experience this tingling sensation and itching sensation all over their body.

Another characteristic of polycythemia vera is this notion of “you don’t look sick.” You can really live what, seemingly on the surface, is a relatively normal life and have these symptoms that could be anything. But people around you—even your loved ones, coworkers, colleagues, and friends—may not realize or even see any indication that you have a blood cancer.

I mean, I know hematocrit—getting it below this 45%—is sort of the hallmark of the treatment goal. What is special about that level that’s so important?

When your blood is thicker, you can imagine that you have systemic issues like thrombotic events. You could have cardiovascular events, deep vein thrombosis, or blood clots. If we have too much moving through, we need to solve for extracting it in some way.

There are so many things about PV in particular where you get this cancer diagnosis, and then what is at the disposal of the patient and the care team is really quite frustrating.

The first thing a physician says is, “Well, you have this cancer, and one of the answers is phlebotomy.”

We hear our clinicians talk about it all the time, like it’s such a primitive, brute-force way of doing it. For PV patients in particular, the frequency with which they’re doing it means they’re removing iron from their body as well. That can be really disruptive just in how they’re feeling.

And then there are the logistics, right? You take time off from work. If you’re not feeling great afterward, you’ve got to take a little bit more time away from your family or your kids.

So, there are just a lot of things—from the psychological aspect of phlebotomy all the way to the practical—that just don’t sit well, and it can be really frustrating across the board.

Options matter to patients, and options matter to clinicians. So, the more options we have, the better we can monitor and manage over the full course of their life.

There is so much learning to be had from listening to patients, and it’s never a one-and-done thing. It is a continuum. At different points in time, the insights are different.

That’s where I think partnerships between industry and organizations like the MPN Research Foundation can really come to bear: How do we go out into the community now that we have more treatments, more options, and more meaningful options, and actually educate people on when and how to utilize them and how they can really benefit the patient?

Why is it so important to you to continue development in hematology?

We have a long history in hematologic malignancies and in treating them, with very deep relationships across the physicians who are some of the leading scientists there.

We also have a real focus on myeloid cancers, and as you have very eloquently described, it’s a really high unmet need.

As I’m listening to you, some of the urgency we feel when you look at this disease—the length of it, the chronic nature of it, and the potential for it to further morph into something else—gives us a sense of urgency in doing it.

Kapila, thank you so much for taking the time today. Your insights are very meaningful in terms of how much you’ve been able to make an impact in the whole MPN community and the work that you’re doing on the research. I applaud you for your efforts.

We all want to be part of the solution, and I think we squarely fall in that camp where you all are part of the solution. Keep it up. You’re a wonderful catalyst, so thank you.