Latest / Making Medicine / Patient Advocacy, FDA Partnerships & Building the Infrastructure of Drug Discovery

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Patient Advocacy, FDA Partnerships & Building the Infrastructure of Drug Discovery · Making Medicine

• 0:00
  Speaker 1: At Making Medicine. We're reporting on the headlines, not making
• 0:03
  Speaker 1: medical recommendations. For personal health questions, always ask your doctor.
• 0:08
  Speaker 1: Nothing in this episode constitutes investment, financial, or legal advice.
• 0:13
  Speaker 1: Consult your own advisors before making decisions.
• 0:18
  Speaker 2: Let's put to bed this misconception that these patient advocacy
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  Speaker 2: groups are either shows for biotech and pharma, which they're not.
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  Speaker 3: And in rare disease particularly, there are fears fears patient
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  Speaker 3: advocates running these organizations because nobody wants to save their
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  Speaker 3: child more than their parent.
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  Speaker 1: Welcome back to the Making Medicine podcast or Science Policy
• 0:49
  Speaker 1: and Innovation meet. Today we have two guests who are
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  Speaker 1: talking about what a cutting edge patient organization looks like.
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  Speaker 1: Lisa bone Break is the executive director of the Alport
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  Speaker 1: Syndrome Foundation. They're a rare kidney disease organization that has
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  Speaker 1: built its own patient registry, funded international research, and just
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  Speaker 1: formalized a public private partnership with the FDA. They'll be
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  Speaker 1: working with the agency to shape the regulatory pathway for
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  Speaker 1: clinical trials in Outport Syndrome. Joining her is Janis Nave.
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  Speaker 1: She's a friend of Making Medicine, an expert on the
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  Speaker 1: kidney space, and a world class VC, so she'll bring
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  Speaker 1: an investors lens to everything Lisa's team has built. It's
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  Speaker 1: a great conversation about just how impactful a patient organization
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  Speaker 1: can and should be. Let's get into the show, Lisa, Janis,
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  Speaker 1: welcome to the show.
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  Speaker 3: Thank you. I appreciate being here.
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  Speaker 2: Great to be here, John.
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  Speaker 1: We're going to start by breaking the fourth wall because
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  Speaker 1: this is going to be an incredible conversation and we
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  Speaker 1: did some planning and I really appreciate Janis in particular
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  Speaker 1: bringing this to our attention. You know, you've been a
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  Speaker 1: friend of Incubate for a long time, and I think
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  Speaker 1: this is such a ripe conversation. But we didn't even
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  Speaker 1: know how timely it is because just before recording there's
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  Speaker 1: some Outport news out there, and I think, Lisa, you
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  Speaker 1: experienced what we hope this episode will do, and it
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  Speaker 1: will open the eyes of people to the real role
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  Speaker 1: patient organizations can play. And I wondered if you might
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  Speaker 1: tease just for a little bit for us. There's some
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  Speaker 1: exciting news about work being done in Outport, and some
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  Speaker 1: folks discovered just how amazing your organization is, So could
• 2:35
  Speaker 1: you tease that a little bit? And then we'll backfill
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  Speaker 1: into some other elements of the conversation, but it's just
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  Speaker 1: so interesting and I thought it'd be a great way to
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  Speaker 1: start the show.
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  Speaker 3: Yeah, thanks for asking. Well, it was fascinating. I was
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  Speaker 3: telling you that just this morning before we're having this conversation,
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  Speaker 3: there's a company that we found just do a simple
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  Speaker 3: Google alert, you know, a Google alert saying Hey, we're
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  Speaker 3: announcing that we're going into outport syndrom. It's now officially
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  Speaker 3: in our pipeline. This was exciting news for us. The
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  Speaker 3: company had not yet reached out to us, so we
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  Speaker 3: reached out to the company, set up a meeting for
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  Speaker 3: this week. They were happy to hear from us, and
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  Speaker 3: we sort of talked through what's going on with their program.
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  Speaker 3: We were excited to see and grateful that they included
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  Speaker 3: us in their pipeline, and when we told them all
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  Speaker 3: the work that we're doing and sort of the translational
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  Speaker 3: tools that we have and the kind of partner we
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  Speaker 3: can be anywhere from data to principal investigators, knowing where
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  Speaker 3: the infrastructure is for sites, how we support patient messaging,
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  Speaker 3: how we have relationships with thought leaders in the space,
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  Speaker 3: as a Scientific and Medical Committee advisors they said, Wow,
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  Speaker 3: I think you're going to shortcut everything we're hoping to do.
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  Speaker 3: We had no idea you had these kinds of extensive
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  Speaker 3: resources available to us, and yeah, let's get started. So
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  Speaker 3: this was really news. This was really wonderful for I
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  Speaker 3: will say my kidneys and my ears, which are both
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  Speaker 3: the fact by onboard syndrome. It's music to mynders and
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  Speaker 3: kidneys that we are doing what I think companies need
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  Speaker 3: us to do in this space to attract drug development.
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  Speaker 1: Well, shortcuts are a magic word. So if that's not
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  Speaker 1: a hook for you to tune into the whole episode,
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  Speaker 1: I don't know what will be. So let's rewind. We
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  Speaker 1: have this great conversation Lisa. For folks who don't know
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  Speaker 1: Alport syndrome, can you tell us a little bit about it?
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  Speaker 3: Yeah, Simply, it's a rare genetic kidney disease. So many
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  Speaker 3: of us have passed us down to our children without
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  Speaker 3: knowing because most of us for many decades have been
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  Speaker 3: misdiagnosed or underdiagnosed. It affects renal disease of course, and
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  Speaker 3: the breakdown of the fibrosis and our kidneys and the
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  Speaker 3: breakdown of our renal function. But because it's a genetic
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  Speaker 3: disease that's also related to collagen proteins that also affect
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  Speaker 3: the basement membranes in our ears, our eyes, our lungs,
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  Speaker 3: our heart. There are other organ systems that are also affected.
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  Speaker 3: So a lot of us with Alport syndrome, are living
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  Speaker 3: with hearing loss, are at risk higher risk for aortic aneurysm,
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  Speaker 3: have eye conditions related to Alport syndrome. So it's a lot.
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  Speaker 3: It's a condition with a lot to live with that
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  Speaker 3: has been underserved and underrecognized for many decades. But here's
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  Speaker 3: the gift of genetic testing, right because now instead of
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  Speaker 3: sitting in a basket of just unknown cause of kidney disease,
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  Speaker 3: now we under we can understand through a simple genetic test,
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  Speaker 3: which is a cheek swab or a blood test or
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  Speaker 3: a saliva test, we can quickly understand the underlying cause
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  Speaker 3: of our kidney disease and then seek treatment and participate
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  Speaker 3: in research towards drug development.
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  Speaker 1: Well, thank you for that. I think that what you've
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  Speaker 1: described that the challenges of being a rare disease and
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  Speaker 1: the challenges and diagnosis, but the opportunit unity that's ahead
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  Speaker 1: of us, but for many decades there hasn't been much,
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  Speaker 1: but you now are out running the foundation, and I
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  Speaker 1: think we all know patient organizations we think of that
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  Speaker 1: they're an information base. They are a community, oftentimes sharing
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  Speaker 1: the burden of a disease between people who have shared experiences.
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  Speaker 1: So they're one part information, one part community, one part inspiration,
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  Speaker 1: and they give hope. And I think people kind of
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  Speaker 1: think it stops there that it's a community group. We
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  Speaker 1: do fundraisers, we run five k's, but that's it. You
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  Speaker 1: have turned that concept on its head and expanded patient
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  Speaker 1: organization definition dramatically. Can you talk about all the things
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  Speaker 1: the foundation does that is beyond what people might traditionally
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  Speaker 1: think of you as your remit.
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  Speaker 3: Sure, I really appreciate that, and I appreciate this credibility,
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  Speaker 3: but I will say I'm not alone in this work,
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  Speaker 3: and you're right, we do all those things that you
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  Speaker 3: talk about in community. Is I know this is a
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  Speaker 3: patient myself and raising a young man with Outport syndrome
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  Speaker 3: who is now four years post kidney transplant with a
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  Speaker 3: gift of life from his brother. So also have a
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  Speaker 3: mama of a living donor as well. He was living
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  Speaker 3: donor at age twenty one, my son, My younger son,
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  Speaker 3: lost his kidneys and his rainow function at nineteen just
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  Speaker 3: as he went off to college. So I'm living this
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  Speaker 3: and I understand the importance of community, and that is
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  Speaker 3: a big part of what we do. But what I
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  Speaker 3: think is really important to understand in this context is
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  Speaker 3: that so many of these patient organizations, including an Outport
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  Speaker 3: Syndrome Foundation, we're not just storytellers anymore. Patient organizations are,
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  Speaker 3: particularly in the rare disease space, We've had to grow up. Basically,
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  Speaker 3: we've become sophisticated out of need, and we're operating at
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  Speaker 3: the front end of drug development in ways that I
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  Speaker 3: just don't think the ecosystem really understands has caught up
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  Speaker 3: to yet. So patient communities have been especially those that
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  Speaker 3: have been overlooked or underserved, like those living with Outbort syndrome.
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  Speaker 3: We're not waiting for science to come along test anymore.
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  Speaker 3: We've come to understand the needs of research and industry,
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  Speaker 3: and we're providing the tools that they need to explore
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  Speaker 3: and study treatments. Industry needs natural history data. Patient registries
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  Speaker 3: they need input from experts in cellular biology and genetics,
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  Speaker 3: access to clinicians that are treating patients, and they need
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  Speaker 3: a way to communicate with patients to recruit them into
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  Speaker 3: clinical trials. Right if these things don't exist, then pharma
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  Speaker 3: and industry have to pay for them themselves, and then
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  Speaker 3: they own the tools and the data that they can't
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  Speaker 3: or won't share. So patient organizations have figured this out.
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  Speaker 3: Like Outports and Room Foundation, we are doing this work
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  Speaker 3: so that we can gain interest from drug developers and
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  Speaker 3: in turn this cuts down on the costs and timing
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  Speaker 3: and getting studies into the clinic fully enrolled. And there
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  Speaker 3: are great organizations in the kidney space doing this work
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  Speaker 3: alongside Outberts and in Foundation, just to name a few,
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  Speaker 3: Hygena Frapathy Foundation, Dent Disease Foundation, Hyperoxiluria Foundation, Kidney Futures
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  Speaker 3: and others. So we're not really alone in this work.
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  Speaker 3: I appreciate you say we're sort of pioneers here, and
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  Speaker 3: I feel a bit like we are, but we are
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  Speaker 3: not alone in this good work that's happening. And we
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  Speaker 3: want folks to understand that patient organizations are really working
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  Speaker 3: on the front end of drug development.
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  Speaker 1: I think that's incredible. And Janis, I want to tag
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  Speaker 1: you in here because your career is spotting opportunity, providing
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  Speaker 1: the resources to change an idea into a promising product
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  Speaker 1: that can change someone's lives. How do you hear this
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  Speaker 1: as investor? And how have you seen patient organizations change
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  Speaker 1: and get into that front end to become part of
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  Speaker 1: the infrastructure we as we're saying, what do you make
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  Speaker 1: of all of this?
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  Speaker 2: I think it's a tremendous asset and heavy lift that
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  Speaker 2: these groups are doing. I mean, I came from the
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  Speaker 2: pharma business earlier and now doing investing, and I'll tell you, you know,
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  Speaker 2: the earlier concept like Lisa covers, it's like, oh, community
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  Speaker 2: and raising money and things like that, and I think
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  Speaker 2: it's really you know, underestimated what they're bringing to the table.
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  Speaker 2: I mean from an investor, when I look to invest
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  Speaker 2: in a rare diseased type of area, having the patient
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  Speaker 2: group there serves multiple purposes. One for sure is no
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  Speaker 2: one knows the disease better than they do and all
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  Speaker 2: the implications and what is needed. And this goes even
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  Speaker 2: just beyond just the you know, really intrinsic data around
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  Speaker 2: genetics and and and labs and course of disease. But
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  Speaker 2: they also and this is I also learned this from Lisa,
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  Speaker 2: just talking to her earlier, is that you know they
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  Speaker 2: are they understand the value around the data, the registries
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  Speaker 2: and pulling all that information together and bringing in the koels.
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  Speaker 2: What they're doing really on the front end of it,
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  Speaker 2: they're doing a lot of the de risking that will
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  Speaker 2: attract more capital into these types of companies.
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  Speaker 1: Well they I mean, we use that de risking word.
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  Speaker 1: And I just hope one of the takeaways from this episode,
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  Speaker 1: which I know is going to be one of the
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  Speaker 1: more popular ones, is use that use the patient organization
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  Speaker 1: to de risk it. And that's not to humanize the
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  Speaker 1: great work patient organizations do, but it will move things faster.
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  Speaker 1: And I love, I love what you talked about, Lisa,
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  Speaker 1: that you are You're speeding things along. It's not just
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  Speaker 1: hope and we're going to sit back and maybe donate.
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  Speaker 1: Maybe you have a philanthropic venture. If you're a larger
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  Speaker 1: patient organization, you're saying no, no, no, we're rolling up our
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  Speaker 1: sleeves and taking matters in our own hands. That industry
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  Speaker 1: has said that they needed good example of this, and
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  Speaker 1: I'm so excited to talk about it. Is in April
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  Speaker 1: you and now this partnership or the FDA announced and
• 12:02
  Speaker 1: you both announced a public private partnership for the ASCENT initiative.
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  Speaker 1: Can you walk us through this and why you think
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  Speaker 1: it's it's so meaningful.
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  Speaker 3: Yeah, thanks for bringing up the ASCENT initiative. And ASSENT
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  Speaker 3: actually is an acronym meaning outport syndrome Surrogate endpoint network.
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  Speaker 3: I know that's a mouthful there, but it's exciting work.
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  Speaker 3: It's designed intentionally to collect and analyze data from patient
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  Speaker 3: registeres around the world to provide evidence to support surrogate
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  Speaker 3: endpoint use. And it's all about surrogate endpoints when you're
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  Speaker 3: trying to build a clear regulatory pathway. It's one of
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  Speaker 3: the problems we've had in our own rare disease, right
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  Speaker 3: Cecil Outport. It'll be next year, it'll be one hundred
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  Speaker 3: years since he wrote an article and published an article about,
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  Speaker 3: you know, hearing loss, all these families that he was
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  Speaker 3: finding with hearing loss and renal disease, right and say
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  Speaker 3: drainal disease. One hundred years. This we've known about this
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  Speaker 3: diagnosis and output Center Fundation has been around for twenty
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  Speaker 3: years and we do not yet have an approved therapy,
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  Speaker 3: and there's so much need in our space and pharma companies,
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  Speaker 3: we understand now they need a clear regulatory pathway and
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  Speaker 3: so the work that we're doing is we're being the convener, right,
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  Speaker 3: we have the relationships, we've built the relationships. In fact,
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  Speaker 3: some of the data set holders around the world are
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  Speaker 3: researchers that originally get into research with the fund of
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  Speaker 3: seed funding from outports INDERM Foundation of Patient Organization, Right,
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  Speaker 3: So we're working with these data set holders around the
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  Speaker 3: world that can be in hospitals or clinics or universities,
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  Speaker 3: and we have these relationships and they're coming together for
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  Speaker 3: the patient community to collect this data because it is
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  Speaker 3: very clear that, particularly in a rare disease we're talking
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  Speaker 3: small sample sizes here, data from one country is not
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  Speaker 3: going to provide the robust evidence that is needed for
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  Speaker 3: the FDA to see, yes, the surrogate endpoint that there's
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  Speaker 3: evidence to support use of this for a clear regulatory pathway,
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  Speaker 3: so we can work across borders as a patient organization
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  Speaker 3: in ways that others just can't. And so we've brought
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  Speaker 3: together these world leading experts in renal endpoints, these biostatisticians,
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  Speaker 3: the world's leading experts who've been studying outward syndrome for
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  Speaker 3: decades with published research that we've built relationships with over time,
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  Speaker 3: and collecting this data, analyzing, harmonizing it, analyzing it with
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  Speaker 3: a data coordinating center. Some countries, for example, like China,
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  Speaker 3: who I'm so grateful they've come on board as a
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  Speaker 3: partner in ASCENT, but they're not in a position to
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  Speaker 3: share their data, so they will do a federated analysis
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  Speaker 3: to confirm what we're finding with the the shared data.
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  Speaker 3: And the idea is the FDA has been I'm so
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  Speaker 3: grateful as with a public partnership public private partnership, it
• 15:09
  Speaker 3: allows them to assign FDA liaisons who serve in our
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  Speaker 3: working groups to help weigh in on the statistical analysis
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  Speaker 3: plan to make sure the FDA understands it approves of,
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  Speaker 3: it understands all the calculations. Can come to our in
• 15:28
  Speaker 3: person meetings to talk and work with our work groups,
• 15:32
  Speaker 3: and that is just really invaluable. So that's the work
• 15:35
  Speaker 3: that we're doing, and then we will plan to publish
• 15:38
  Speaker 3: together as a set of data set holders. All the
• 15:40
  Speaker 3: experts that have been involved and generously providing their expertise,
• 15:44
  Speaker 3: volunteering all of their time for more than a year
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  Speaker 3: now and we'll publish together with the FDA and the
• 15:52
  Speaker 3: ideas that we will float all boats here together. And
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  Speaker 3: I'm grateful that one pharma company isn't doing this themselves
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  Speaker 3: because if they did again, they would own that data,
• 16:02
  Speaker 3: they would own that analysis, and it would only be
• 16:07
  Speaker 3: for one idea. This is the concept, is that we
• 16:10
  Speaker 3: will float all boats. We don't know where the best
• 16:12
  Speaker 3: idea will come from. Perhaps it comes from some fantastic
• 16:15
  Speaker 3: scientist in their garage, perhaps it will come from some
• 16:18
  Speaker 3: big pharma international pharma company. We don't know. But this
• 16:22
  Speaker 3: data will bend, this analysis to show informed use of
• 16:27
  Speaker 3: circuit inpoints will be available to everyone.
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  Speaker 1: Well, and I think to your point is you don't
• 16:32
  Speaker 1: know where it'll come from. And again you're making it easier.
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  Speaker 1: It's one less thing someone has to do, and you're
• 16:39
  Speaker 1: getting it out of the way. Jennie, I'm curious your
• 16:45
  Speaker 1: take in this moment. We talk a lot about FDA uncertainty.
• 16:52
  Speaker 1: What would it mean if you were investing in this space.
• 16:56
  Speaker 2: What would it.
• 16:56
  Speaker 1: Mean to you that the FDA has gone through a
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  Speaker 1: partnership like this. Does it signal, hey, they get this
• 17:05
  Speaker 1: disease base, They're on someone on board with the endpoints.
• 17:08
  Speaker 1: It's not going to surprise them what they're talking about.
• 17:10
  Speaker 1: How much of a validator is a partnership like this.
• 17:14
  Speaker 2: Oh, it's hugely validating. You know, a couple of points
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  Speaker 2: I would like to make is what this is doing
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  Speaker 2: and what Lisa's team and other rare disease groups are doing,
• 17:27
  Speaker 2: is they're building an infrastructure for people to go and
• 17:31
  Speaker 2: do drug discovery and development on. And it's like building
• 17:36
  Speaker 2: a road right where others can use it for different purposes.
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  Speaker 2: So I think we have to really keep that in mind,
• 17:43
  Speaker 2: that they're building infrastructure for others, and Lisa, you know,
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  Speaker 2: alluded to that. I think having the FDA become involved
• 17:51
  Speaker 2: and help basically help them build that road through these
• 17:54
  Speaker 2: public private partnerships is very huge. Right as an investor,
• 18:00
  Speaker 2: look at it and I go, they're not building into it.
• 18:02
  Speaker 2: If we invest in companies that are working with Lisa
• 18:04
  Speaker 2: and our team, they're not building into a black box
• 18:07
  Speaker 2: like you know where it's the regulatory you know, pathways unclear,
• 18:11
  Speaker 2: et cetera, et cetera. It's like, no, they're working in
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  Speaker 2: partnership to do that. And I think it is very
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  Speaker 2: unique that the asf and the FDA are working together
• 18:23
  Speaker 2: to do that. And another little sub point I'd like
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  Speaker 2: to point out is that Lisa kept mentioning surrogate endpoints
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  Speaker 2: right statistical analysis.
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  Speaker 3: And.
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  Speaker 2: That isn't her background. But what's telling us is that
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  Speaker 2: these groups are becoming are they're so sophisticated, right, So,
• 18:44
  Speaker 2: and I'm not sure Hill staffers, and we've be listening
• 18:47
  Speaker 2: to this. You know what a surrogate endpoint is, and
• 18:49
  Speaker 2: so I think it's worth mentioning and framing it is that.
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  Speaker 2: That's why this is really important to do to convene
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  Speaker 2: this to come up with surrogate endpoints is usually you
• 18:58
  Speaker 2: have a clinical endpoint and it's an outcome, and sometimes
• 19:01
  Speaker 2: it can take a long time to reach that outcome
• 19:03
  Speaker 2: in a disease like a heart disease, things like that.
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  Speaker 2: If you think about your statins, right, you know those
• 19:09
  Speaker 2: get approved on surrogate endpoints. You don't have to have
• 19:11
  Speaker 2: your heart attack for the final endpoint. They can look
• 19:14
  Speaker 2: at your LDLs, right. So, but that takes a lot
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  Speaker 2: of research, a lot of analyzes, and that's what this
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  Speaker 2: team is doing, is coming up with these surrogate endpoints
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  Speaker 2: which will actually as an investor and as anyone is
• 19:28
  Speaker 2: developing it, whether it be a small biottach or a
• 19:30
  Speaker 2: large pharma, they can design their trials and get information earlier,
• 19:36
  Speaker 2: which means you will get an approved drug faster to
• 19:40
  Speaker 2: patients and it will compress timelines on lower cost. So
• 19:44
  Speaker 2: that's I really want to take that back to Lisa,
• 19:47
  Speaker 2: as you mentioned surrogate endpoints. You know, just that is
• 19:50
  Speaker 2: a hugely sophisticated and a critical thing that they're doing
• 19:55
  Speaker 2: with this assent.
• 19:56
  Speaker 1: I want to stay there, Jannis, because per usual when
• 19:59
  Speaker 1: you're on the show, make us all smarter, but do
• 20:01
  Speaker 1: it in a way that the layman can come along.
• 20:03
  Speaker 1: Let's stay with surrogate endpoints. Is it right to think
• 20:07
  Speaker 1: of them as sort of these are the proxies? It's not.
• 20:10
  Speaker 1: I think a lot of people think taking a drug
• 20:13
  Speaker 1: is flipping a light switch. It works, it doesn't work,
• 20:16
  Speaker 1: and we're able to measure it did the light come
• 20:18
  Speaker 1: on or did the light stay off? And you know
• 20:22
  Speaker 1: in your experience how much of this medicine guessing game
• 20:25
  Speaker 1: that we call drug development is. We can't actually see
• 20:29
  Speaker 1: if the light comes on quite and so we've got
• 20:32
  Speaker 1: to come up with three or four different proxies to
• 20:34
  Speaker 1: have a sense if the light is coming on. You
• 20:36
  Speaker 1: know before, like you said before, the only light switch
• 20:39
  Speaker 1: is a heart attack? Is that Is that the right
• 20:41
  Speaker 1: way to maybe think about this?
• 20:43
  Speaker 2: Yeah, I think that's a great way to frame it.
• 20:46
  Speaker 2: I don't have better sub analogies for that, and least
• 20:50
  Speaker 2: it probably will. I could throw it back to her,
• 20:52
  Speaker 2: But it's really you know, when you're trying to develop
• 20:56
  Speaker 2: a drug, you know, it's like any making any sort
• 20:59
  Speaker 2: of decision. You don't want to have to wait five, six, ten,
• 21:04
  Speaker 2: twelve years to try and figure that out. You have
• 21:06
  Speaker 2: to enroll a lot more people, et cetera, et cetera.
• 21:08
  Speaker 2: But if you can start looking at things earlier, like
• 21:12
  Speaker 2: you know, do my ldals go up or down? Right?
• 21:14
  Speaker 2: My LPA go up or down? You know, if you
• 21:16
  Speaker 2: can find these things earlier, then you can start tracking
• 21:20
  Speaker 2: it over time and you know, see see if certain
• 21:24
  Speaker 2: things are happening before the light switch goes on and
• 21:27
  Speaker 2: off and there's something devastating happening. But you know, also,
• 21:32
  Speaker 2: as a former scientist in my life, is that you
• 21:35
  Speaker 2: don't do that willy nilly, right, You don't guess at
• 21:38
  Speaker 2: that that is like just years and years and thousands
• 21:43
  Speaker 2: of people, hours and lots of patients and data that
• 21:46
  Speaker 2: goes into that to draw that correlation, and that is
• 21:49
  Speaker 2: exactly what Lisa is putting together, right, and her ability
• 21:56
  Speaker 2: to pull all those pieces together is really I think,
• 22:00
  Speaker 2: correct me if I'm wrong, Lisa what FDA saw and said, hey,
• 22:04
  Speaker 2: we can get behind this right, because you know, think
• 22:07
  Speaker 2: about it, Investors like to de risk things. That's what
• 22:10
  Speaker 2: the FDA does too. Through clinical trials. They're do risking
• 22:13
  Speaker 2: whether or not this drug is really going to work
• 22:15
  Speaker 2: in people. So really at the crux of it, you know,
• 22:19
  Speaker 2: I put Lisa and her efforts and her team and
• 22:22
  Speaker 2: others in the road disease space right there at the
• 22:25
  Speaker 2: crux of it, especially now with their sophistication, their understanding
• 22:29
  Speaker 2: of data collection, of data registries, etc. So I've said enough.
• 22:33
  Speaker 2: I would hand this back to Lisa to correct me.
• 22:36
  Speaker 2: If I'm wrong.
• 22:36
  Speaker 3: You're not wrong, except for I would say thank you
• 22:39
  Speaker 3: for giving me so much credit, but I would say, again,
• 22:42
  Speaker 3: we are the convenor. I am personally not doing this
• 22:45
  Speaker 3: statistical analysis. My background was originally in arts education. I
• 22:48
  Speaker 3: am so far away from where I started. But because
• 22:52
  Speaker 3: I have skin in the game and i'd been an,
• 22:56
  Speaker 3: you know, a nonprofit administrator for many years. I felt
• 22:59
  Speaker 3: like I could bring that kind of perspective and skill
• 23:02
  Speaker 3: to running this organization. But again, we've learned very quickly,
• 23:07
  Speaker 3: and I'm not alone in this. So many patient organizations
• 23:10
  Speaker 3: are doing this good work. Being the convenor because we
• 23:14
  Speaker 3: have skin in the game. We've built these relationships right
• 23:16
  Speaker 3: with the world's leading experts. We know who the vetted
• 23:19
  Speaker 3: experts are, not just who says they're an expert, but
• 23:24
  Speaker 3: patients know who the experts really are. Patient organizations, we've
• 23:27
  Speaker 3: been following them a long time and we've been funding
• 23:29
  Speaker 3: them right. So being able to be the convener and
• 23:34
  Speaker 3: bring these relationships together, and I will say part of
• 23:39
  Speaker 3: this is, yes, these relationships are built on trust for
• 23:45
  Speaker 3: the patient organization. They know where patients ourselves. We're living
• 23:49
  Speaker 3: this ourselves. We speak to patients across the world every
• 23:53
  Speaker 3: single day in our work. They know who we are
• 23:57
  Speaker 3: and how we are working, and that the integrity is there.
• 24:01
  Speaker 3: We want to float all boats, and they are volunteering
• 24:06
  Speaker 3: for us at a really high level. These biostatisticians and
• 24:10
  Speaker 3: these clinicians and so many of the clinicians and researchers
• 24:14
  Speaker 3: say to us, have said to me directly, they're volunteering
• 24:18
  Speaker 3: because they are sick and tired of decades of seeing
• 24:22
  Speaker 3: their patients, particular in outfts and don't where Wow, these
• 24:26
  Speaker 3: young people, it changes their lives to experience dialysis and
• 24:30
  Speaker 3: end stage we don't failure in their teens. They're so
• 24:33
  Speaker 3: sick of seeing this and having their patients have to
• 24:36
  Speaker 3: have two and three transporcintey transplants in their lifetime. They
• 24:42
  Speaker 3: want change, and so that's why they're willing to work
• 24:45
  Speaker 3: with us. And so I'm so grateful for that. And again,
• 24:49
  Speaker 3: this is why we can be on the front end
• 24:52
  Speaker 3: of drug development because we've developed these relationships with real
• 24:56
  Speaker 3: experts and funded their work in the past. So thank
• 25:00
  Speaker 3: you for the credit. I would say the credit really
• 25:02
  Speaker 3: goes to the volunteers who are doing this research, who
• 25:07
  Speaker 3: are so committed, and we are the convenor.
• 25:10
  Speaker 1: And yet we don't see this in every patient organization
• 25:18
  Speaker 1: or disease area. And so I appreciate recognizing all the
• 25:25
  Speaker 1: people who have been helpful along the way.
• 25:28
  Speaker 2: But take us, take us a little bit.
• 25:30
  Speaker 1: More on the journey and what you've done, because I
• 25:33
  Speaker 1: think from my perspective, and Janie, I think you'd agree
• 25:38
  Speaker 1: something special has happened here and it could be precedent setting.
• 25:44
  Speaker 1: If you don't mind, just take us a little bit
• 25:45
  Speaker 1: more of how do you do it? Is it one
• 25:49
  Speaker 1: hundred hour work weeks? And it's the cult of personality?
• 25:53
  Speaker 1: I mean, is the key here that every disease state
• 25:56
  Speaker 1: needs a Lisa or is it that you followed the
• 26:02
  Speaker 1: right people? And it's a big force. I think people
• 26:05
  Speaker 1: want to know more what does my disease state or
• 26:08
  Speaker 1: my kid's disease state need to follow in the footsteps
• 26:13
  Speaker 1: of Alport syndrome.
• 26:14
  Speaker 3: Thank you, I appreciate that. I think what I often
• 26:17
  Speaker 3: find in the work that I do and the others
• 26:21
  Speaker 3: that I meet, is that in rare disease particularly, there
• 26:26
  Speaker 3: are fierce, fierce patient advocates running these organizations because nobody
• 26:32
  Speaker 3: wants to save their child more than their parent. And
• 26:36
  Speaker 3: so I guess I'm just following that category of I
• 26:41
  Speaker 3: was not a brave person, but when my son was
• 26:45
  Speaker 3: diagnosed with this rare disease and I couldn't understand the language,
• 26:49
  Speaker 3: I went to a first meeting about it, and I
• 26:51
  Speaker 3: did not know all the acronyms and all the new
• 26:56
  Speaker 3: dialogue and vocabulary. At first went home and cried for
• 27:01
  Speaker 3: twelve hours, and then I got out of it and said, Okay,
• 27:05
  Speaker 3: nobody is going to care about more than this than me,
• 27:10
  Speaker 3: and so nobody's gonna teach me. I'm going to have
• 27:12
  Speaker 3: to learn myself. And I find that's the story of
• 27:15
  Speaker 3: many rare disease parents in communities like ours that had
• 27:19
  Speaker 3: been underserved, with people misdiagnosed undiagnosed for decades. You know,
• 27:24
  Speaker 3: I had children not knowing that I could pass down
• 27:27
  Speaker 3: this and there was no reason. I mean, there are
• 27:29
  Speaker 3: definitely easy ways to diagnose outboard syndrome. So I really
• 27:34
  Speaker 3: think it's all about that of becoming fearless and not minding,
• 27:39
  Speaker 3: and you get to a point where you don't care
• 27:40
  Speaker 3: that you're the only patient in the room at these
• 27:42
  Speaker 3: big scientific meetings because you realize pretty quickly sometimes you
• 27:48
  Speaker 3: know things that the scientists themselves don't know because they
• 27:51
  Speaker 3: have not been talking to patients. And I will say
• 27:55
  Speaker 3: the powerful moment for us when we went to our
• 27:57
  Speaker 3: first family meeting organized by Alport Syndrome Foundation. A lot
• 28:02
  Speaker 3: of patient organizations do this, say family meetings, which is
• 28:05
  Speaker 3: so so incredibly important. We didn't know exactly what to expect.
• 28:09
  Speaker 3: And before that meeting, our young son living with Alport syndrome,
• 28:13
  Speaker 3: who was twelve years old, had just been diagnosed, who
• 28:18
  Speaker 3: had begged our family, please don't talk about this rare
• 28:21
  Speaker 3: disease that I have. This days in the family, we
• 28:23
  Speaker 3: don't want to talk about this. When we went to
• 28:25
  Speaker 3: our first family meeting with outports ANDERN Foundation, and we
• 28:27
  Speaker 3: went part of that meeting what scientists were there, and
• 28:30
  Speaker 3: we went to a lab near the UCLA, and the
• 28:35
  Speaker 3: researcher had been involved with output research for a long time,
• 28:38
  Speaker 3: was the first ever researcher to get secure funds from
• 28:43
  Speaker 3: Outport Syndrome Foundation through our grant program, and patients were
• 28:47
  Speaker 3: meeting researchers and researchers were meeting patients for the very
• 28:50
  Speaker 3: first time, and that was so powerful for both of them.
• 28:55
  Speaker 3: And we walked away from that meeting that before we
• 28:58
  Speaker 3: were getting in the car that afternoon, before we left
• 29:00
  Speaker 3: for the first day, our young son said to us, Okay,
• 29:03
  Speaker 3: that changed everything. I finally feel not alone and I
• 29:06
  Speaker 3: finally realize if we don't come forward and let ourselves
• 29:11
  Speaker 3: be studied, how will researchers ever find a cure for us,
• 29:15
  Speaker 3: and then he became this extraordinary pasion advocate. We started
• 29:18
  Speaker 3: going at his request on the Hill twice a year.
• 29:21
  Speaker 3: We would go and talk to our legislators and set
• 29:23
  Speaker 3: up meetings, and he would talk about passing the Living
• 29:25
  Speaker 3: Donor Protection Act and ih funds for kidney disease. I
• 29:30
  Speaker 3: think all of this we became brave as a family,
• 29:34
  Speaker 3: and I see this in other organizations as well. And
• 29:37
  Speaker 3: I always encourage others now working in rare disease not
• 29:42
  Speaker 3: to dismiss their own credibility as an expert in their
• 29:45
  Speaker 3: own disease, because they're living it and they know much
• 29:49
  Speaker 3: more about the disease and things that researchers do not understand.
• 29:54
  Speaker 3: And so by having a patient voice and the table
• 29:57
  Speaker 3: and all of the work that we do, it's really
• 30:00
  Speaker 3: informed the work so much. And we do have research
• 30:03
  Speaker 3: theres say to us, wow, I never knew that, and
• 30:08
  Speaker 3: that is really powerful. So I think it's really all
• 30:11
  Speaker 3: about that.
• 30:12
  Speaker 1: It is powerful. And you mentioned at the end there
• 30:15
  Speaker 1: the role of advocacy and what an impressive I guess
• 30:18
  Speaker 1: pair of suns you have. But the role of advocacy
• 30:23
  Speaker 1: one of the things we see in advocacy around patient
• 30:29
  Speaker 1: organizations and industry is a concern about their proximity, and
• 30:38
  Speaker 1: we're trying to do a better job of explaining that
• 30:41
  Speaker 1: it's actually vital that industry stays close to the people
• 30:46
  Speaker 1: they're trying to serve. And I'm just wondering if you
• 30:49
  Speaker 1: had any thoughts on that, because a lot of times
• 30:51
  Speaker 1: on both sides of the aisle, i'll hear from a policymaker.
• 30:54
  Speaker 1: You know, I don't think industry should be showing up
• 30:56
  Speaker 1: at the patient dinner and they shouldn't be sponsoring that
• 30:59
  Speaker 1: table because ultimately they want to sell a product. And
• 31:03
  Speaker 1: you know, how important is it that our patient groups
• 31:07
  Speaker 1: and industry do talk to each other and be close knitted.
• 31:10
  Speaker 1: I think you just gave a compelling story about why
• 31:13
  Speaker 1: that's so important.
• 31:15
  Speaker 2: Thank you.
• 31:15
  Speaker 3: I think this is just such a great question, and
• 31:19
  Speaker 3: I did not understand this relationship when I first started
• 31:21
  Speaker 3: the work. But I will say most patient organizations, I
• 31:25
  Speaker 3: can give you our example outports and in Foundation, the
• 31:28
  Speaker 3: great vast majority our funding comes directly from patients and
• 31:32
  Speaker 3: families themselves affected by output syndrome and those who love them,
• 31:35
  Speaker 3: friends and family. Right the vast majority, A small percentage
• 31:40
  Speaker 3: of our actual operating comes from pharmaceutical funds, but we
• 31:44
  Speaker 3: do ask them, for example, to help us. We want
• 31:46
  Speaker 3: to have these patient meetings. It's impossible to throw those
• 31:49
  Speaker 3: without industry support, and I feel like they should be
• 31:53
  Speaker 3: supporting us because then we can help develop a more
• 31:57
  Speaker 3: engaged and educated patient population to help support research and
• 32:03
  Speaker 3: clinical development. And we want them there. For example, our
• 32:07
  Speaker 3: patient meetings. People from pharma don't speak, they're not given
• 32:11
  Speaker 3: the opportunity to speak or present, but we want them
• 32:14
  Speaker 3: there because they will learn a lot from listening to
• 32:17
  Speaker 3: patient panels and so forth. One of the company now
• 32:21
  Speaker 3: that has a trial going on in out word syndrome,
• 32:25
  Speaker 3: I'm so grateful that they came to us right away
• 32:27
  Speaker 3: from day one. I met with them from day one
• 32:30
  Speaker 3: when they were thinking about a clinical trial, and I
• 32:32
  Speaker 3: encouraged them to come to our patient meeting and they did,
• 32:35
  Speaker 3: and they said, Wow. We just went to it back
• 32:37
  Speaker 3: to the drawing board and completely redesigned our entire protocol
• 32:42
  Speaker 3: because now we heard from patients and we understand that
• 32:44
  Speaker 3: what we designed before was not patient friendly at all.
• 32:48
  Speaker 3: And they also increase they changed the criteria to be
• 32:53
  Speaker 3: more inclusive because they realized, Oh, there's a lot of
• 32:55
  Speaker 3: motivation here that we didn't know about. So I think,
• 32:59
  Speaker 3: you know, we do not accept sponsored messaging at all.
• 33:03
  Speaker 3: We have our own template to share with patients about
• 33:07
  Speaker 3: their opportunity. Well, we want to make sure they know
• 33:09
  Speaker 3: about clinical trials because often their doctors are not telling them.
• 33:12
  Speaker 3: So you want to make sure that they are aware
• 33:14
  Speaker 3: of their opportunities to participate in research and clinical trials.
• 33:18
  Speaker 3: So we have our own template and we ask the
• 33:20
  Speaker 3: pharmaceutical company to, yeah, can you please make sure this
• 33:23
  Speaker 3: passes compliance by your company? Do we have the right
• 33:26
  Speaker 3: criteria here for enrollment? But other than that, they have
• 33:29
  Speaker 3: no say in the messaging, and we send it out
• 33:32
  Speaker 3: to patients and patients know that we're a credible messenger
• 33:35
  Speaker 3: again because the patients know that our staff at Outports
• 33:38
  Speaker 3: and our foundation and our board we're living it too.
• 33:41
  Speaker 3: We have feer intentions. So I think there's a trust
• 33:44
  Speaker 3: factor here and pharma yes should be working with us
• 33:48
  Speaker 3: because we want to help them invest their funds wisely
• 33:52
  Speaker 3: by working with the right people, by using the right tools,
• 33:55
  Speaker 3: having the best advisors, and by us helping them so
• 34:01
  Speaker 3: that we understand the protocol. We do patient listening sessions
• 34:04
  Speaker 3: so that they can when they're shaping their protocol for
• 34:08
  Speaker 3: free and no charge, they can meet with up to
• 34:10
  Speaker 3: twenty patients. We do this virtually or in person, and
• 34:13
  Speaker 3: they can talk about their protocol and ask the patients exactly,
• 34:17
  Speaker 3: with this work for you, with this work for your lifestyle?
• 34:20
  Speaker 3: What motivates you to participate in a clinical trial? What
• 34:23
  Speaker 3: are your concerns or fears? What are your obstacles to participating.
• 34:27
  Speaker 3: We've had folks say, yeah, no, I can't do for
• 34:31
  Speaker 3: seven months. Every month, I can't do a twenty four
• 34:34
  Speaker 3: hour urine specimen because I need to get on a
• 34:37
  Speaker 3: bus and go to work and I have no way
• 34:38
  Speaker 3: to carry a huge jug of urine. I mean, this
• 34:41
  Speaker 3: is just These are the kinds of very simple things
• 34:43
  Speaker 3: we talk about and it helps them shape patient friendly studies.
• 34:48
  Speaker 3: And that happened with the company that I told you
• 34:51
  Speaker 3: that came to us right away, and so we designed
• 34:53
  Speaker 3: to study with them through patient listening sessions and them
• 34:56
  Speaker 3: coming to our meeting, and it turned out that they
• 34:59
  Speaker 3: were able to fill that clinical trial so much more
• 35:02
  Speaker 3: quickly than ever anticipated, in about half the time they
• 35:05
  Speaker 3: had anticipated, and five of the sites they didn't even
• 35:08
  Speaker 3: need to open because they already had filled in a
• 35:11
  Speaker 3: rare disease clinical trial, had filled enrollment, and had also
• 35:16
  Speaker 3: had a wait list. So I think this is really
• 35:19
  Speaker 3: powerful to folks to understand that we should be working
• 35:22
  Speaker 3: with Vharma, but we are working with them in really
• 35:24
  Speaker 3: responsible ways.
• 35:25
  Speaker 1: Lisa, I'm blown away by all the things that you
• 35:28
  Speaker 1: are doing. My patient adacy friends are going to be
• 35:33
  Speaker 1: jealous that I got to sit down with you, and
• 35:36
  Speaker 1: I think they're all going to be taking notes because
• 35:38
  Speaker 1: your humility is wonderful. But I've got to say, you're
• 35:42
  Speaker 1: setting a high bar for others to meet, and I
• 35:44
  Speaker 1: hope they will meet it because you're doing things that
• 35:47
  Speaker 1: I don't think a lot of organizations are doing, even
• 35:50
  Speaker 1: ones that are greatly resourced.
• 35:52
  Speaker 3: I appreciate that so much, I really really do. But
• 35:56
  Speaker 3: you know, there are others that I know that are
• 35:57
  Speaker 3: doing this great work. Similarly, I have my touched own
• 36:01
  Speaker 3: people we share and we try to learn from each other.
• 36:05
  Speaker 3: But this is really a great opportunity because I hadn't
• 36:09
  Speaker 3: really thought of it this way. I'm so glad that
• 36:10
  Speaker 3: Jenna's brought this to my attention, that that maybe Hill
• 36:14
  Speaker 3: staffers see us in a certain way, and you know,
• 36:19
  Speaker 3: I really appreciate this opportunity. I was just at this
• 36:22
  Speaker 3: Kenney Health Initiative meeting at American Society Neuprology Kiney Health Initiative.
• 36:26
  Speaker 3: I'm on their Patient and Family Partnership Council. So I
• 36:29
  Speaker 3: helped run a three hour workshop about patient kidney friendly
• 36:35
  Speaker 3: studies in for the first day, and then on the
• 36:39
  Speaker 3: second day when I was sort of talking about this
• 36:43
  Speaker 3: for the rest of the group the audience to talk
• 36:45
  Speaker 3: about what the work, what happened in the workshop, I
• 36:48
  Speaker 3: actually used this sort of you know, real time it slide. Oh,
• 36:52
  Speaker 3: I don't know, real time opportunity to have surveys in advance.
• 36:55
  Speaker 3: So I asked everybody in the audience or I don't know,
• 36:57
  Speaker 3: a couple hundred people there, maybe two fifty and they
• 37:01
  Speaker 3: represent all stakeholders, you know, patient organizations, researchers, mostly biotech
• 37:06
  Speaker 3: and pharma there. And I asked, what are your obstacles
• 37:09
  Speaker 3: to including the patient voice in the drug development process?
• 37:13
  Speaker 3: And I named all these different things, and I said,
• 37:15
  Speaker 3: so choose one of them. How what's the problem, And
• 37:21
  Speaker 3: by far about seventy percent of the responses the answer was,
• 37:25
  Speaker 3: we do not know how to include patient organizations, our
• 37:28
  Speaker 3: patients and our drug development process. So part of what
• 37:32
  Speaker 3: we're trying to do here is educate farm and biotech.
• 37:35
  Speaker 3: Here's how you can do it. It's pretty simple. We
• 37:37
  Speaker 3: do all this work at no cost for you. You know.
• 37:41
  Speaker 2: I think what you're asking John was like, how do
• 37:42
  Speaker 2: you scale what Lisa's doing and what that group is doing?
• 37:46
  Speaker 2: And one is she's doing it by example, right, so
• 37:50
  Speaker 2: you know, the more she gets to do this, the
• 37:51
  Speaker 2: more others can see, Oh, this is how you do it.
• 37:53
  Speaker 2: She's laying the groundwork. But the other thing is that's
• 37:56
  Speaker 2: why the FDA is so important here is because the
• 38:00
  Speaker 2: FDA now knows and they're learning to this is how.
• 38:03
  Speaker 2: This is how we could work with this group because
• 38:07
  Speaker 2: it benefits both everyone to design better clinical trials that
• 38:12
  Speaker 2: are faster and more likely to give you, you know,
• 38:15
  Speaker 2: an outcome. Right, So I think I keep leaning into
• 38:19
  Speaker 2: the policy the FDA. Let's not talk about CMS at
• 38:22
  Speaker 2: this point, but that you know, really make sure that
• 38:25
  Speaker 2: that comes through as to you know, what they can contribute,
• 38:29
  Speaker 2: and this is the way you scale it right this,
• 38:33
  Speaker 2: you know, try and do more of these public private
• 38:36
  Speaker 2: partnerships with the FDA, and that efficiency will increase because
• 38:43
  Speaker 2: the other thing is like, when you think about these diseases,
• 38:46
  Speaker 2: and this is the scientist in me, it's like they're
• 38:50
  Speaker 2: multi factorial, right. It's a genetically based disease, right, And
• 38:55
  Speaker 2: Lisa can speak to this. It's like if you've got
• 38:58
  Speaker 2: certain genetic you know, mutations, it can influence other diseases too.
• 39:03
  Speaker 2: So you know, rare diseases don't don't stand alone on
• 39:06
  Speaker 2: their own. Once you put together enough rare diseases, it's
• 39:10
  Speaker 2: not so rare, right, So what's the other piece is like,
• 39:16
  Speaker 2: you know, me constantly banging the drum on, you know,
• 39:19
  Speaker 2: making sure we get this data. It's available, it's in.
• 39:22
  Speaker 2: You know, the patients own it, you know, they can
• 39:25
  Speaker 2: determine how it's used. But then also policymakers need to
• 39:29
  Speaker 2: step up and say how do we enable these groups more? Right,
• 39:33
  Speaker 2: not less?
• 39:34
  Speaker 1: You've both have been incredibly generous with your time. Jennings.
• 39:36
  Speaker 1: I want to come to you first with a closing
• 39:38
  Speaker 1: question of what do you want people to take away
• 39:41
  Speaker 1: from this episode from your perspective, world class investor, expert
• 39:45
  Speaker 1: in the kidney space, what what do you want to
• 39:48
  Speaker 1: take And then least someone bring the same question to you,
• 39:50
  Speaker 1: so you're on notice that it's coming your way.
• 39:53
  Speaker 2: If I were to be speaking to the Hill staffers,
• 39:56
  Speaker 2: policy makers, and those that advise the policy makers. Two things.
• 40:01
  Speaker 2: One is that let's put to bed this misconception that
• 40:07
  Speaker 2: these patient advocacy groups are either shields for biotech and pharma,
• 40:13
  Speaker 2: which they're not at least have pointed that out, and
• 40:16
  Speaker 2: that they're one dimensional. They are building through data and
• 40:23
  Speaker 2: you know how I feel about data as infrastructure. They
• 40:26
  Speaker 2: are building an infrastructure highway in these areas, and they're
• 40:33
  Speaker 2: extremely sophisticated. They've got the trust factor and that if anything,
• 40:39
  Speaker 2: you know, listen to them when they come and think
• 40:43
  Speaker 2: that this is a really good opportunity to devise policies
• 40:47
  Speaker 2: that will benefit them and help them build that infrastructure.
• 40:52
  Speaker 1: Well, you're totally right on both points, but especially the
• 40:56
  Speaker 1: data infrastructure piece. That is the future and they're doing.
• 41:00
  Speaker 1: They are far more dimensional as Lisa is laid out. So, Lisa,
• 41:04
  Speaker 1: what should people take away from this episode?
• 41:06
  Speaker 3: I hope that they'll take away that many patient organizations
• 41:10
  Speaker 3: are doing this front end work of drug development and
• 41:13
  Speaker 3: really valuable and important ways. So please see us as
• 41:18
  Speaker 3: more than storytellers. Come to us when you're shaping policy,
• 41:22
  Speaker 3: when you're working with the FDA, you know, when you're
• 41:26
  Speaker 3: when you're thinking about drug development work. Please come to
• 41:30
  Speaker 3: us early, and we are on the front end of this,
• 41:35
  Speaker 3: so please come to us early and treat us as such.
• 41:38
  Speaker 1: More than storytellers, and get there early. Lisa Janis, thank you.
• 41:42
  Speaker 1: This has been an incredible conversation. I'm so glad you
• 41:44
  Speaker 1: were able to join.
• 41:45
  Speaker 3: Many thanks to you for this opportunity. I really appreciate it.
• 41:49
  Speaker 2: Yes, thanks, thanks John, I'm the team, and thank you Lisa.
• 41:52
  Speaker 1: That wraps up this episode of the Making Medicine Podcast.
• 41:56
  Speaker 1: A huge thank you to Lisa and Janis for joining
• 41:58
  Speaker 1: us today. Be sure tobscribe on YouTube and follow us
• 42:01
  Speaker 1: on our other channels so you don't miss upcoming conversations.
• 42:04
  Speaker 1: Do you have thoughts on anything we discussed today, Let
• 42:07
  Speaker 1: us know and we might feature your comment in next
• 42:09
  Speaker 1: week's episode. Thanks for listening and as always, keep innovating.