Acadia CEO on the Fight Against Rare Diseases

Summary

Bloomberg Businessweek Podcast Summary

Episode: Acadia CEO on the Fight Against Rare Diseases
Date: January 14, 2026
Hosts: Carol Massar & Tim Stenovec
Guest: Catherine Owen Adams, CEO of Acadia Pharmaceuticals

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Overview

This episode features an in-depth interview with Catherine Owen Adams, CEO of Acadia Pharmaceuticals, focusing on the company’s pioneering efforts in neuroscience and rare disease therapeutics. The discussion explores the investability of rare diseases, the impact of policy and federal funding cuts on innovation, pricing and affordability of treatments, and how small biotech firms engage with policymakers to ensure continued innovation for unserved patient communities.

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Key Discussion Points & Insights

1. The Rationale for Investing in Neuroscience and Rare Diseases

• Unmet Medical Need: Catherine highlights the vast number of conditions with no effective therapies, especially in neuroscience (e.g., Alzheimer's, dementia, Lewy body disease) and rare diseases.

  • Quote:

    "95% of rare diseases don't have any therapies associated with them. And so for us putting those two things together, it's a great place to be in terms of bringing innovation to patients."
    — Catherine Owen Adams (01:31)

• Acadia’s Position: With FDA-approved treatments for Parkinson's disease psychosis and Rett syndrome, Acadia exemplifies the innovation possible in these fields.

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2. Impact of NIH Cuts and Policy Changes (02:08–03:52)

• Short-term vs. Long-term Effects: While Acadia’s operations haven’t been directly affected by federal funding cuts, Catherine foresees negative ramifications for smaller biotechs and academic partnerships.

  • Quote:

    "I do worry longer term that that knock on effect will be felt especially by smaller biotechs who rely on academia for a lot of our initial innovation."
    — Catherine Owen Adams (02:45)

• Focus Amid Policy Fluctuations: Acadia’s commitment to neurological and rare diseases remains unchanged by short-term policy changes.

  • Quote:

    "Our focus is on the patients and those communities where they don't have options. And the changes in the administration, they come and go and we deal with them. But ultimately our focus is on that patient need."
    — Catherine Owen Adams (03:32)

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3. Engaging with Policymakers (03:52–06:02)

• Active Advocacy: Catherine details her leadership roles in industry groups actively dialoguing with policymakers in Washington, D.C.

  • Quote:

    "As a CEO in biotech, I think it's important to be out there developing those lines of communication... we're actively engaging to ensure that they hear our voice."
    — Catherine Owen Adams (04:04)

• Protecting Innovation: Emphasizes the unique challenges faced by small biotechs and advocates for nuanced policy ('not a peanut butter approach'), specifically urging for carve-outs or appropriate measures for rare disease innovation.

  • Quote:

    "Small biotech is the lifeblood of future innovation for patients. And the policies and legislation...trying to apply to large pharma businesses...as a small biotech, our opportunity to trade off is very limited...so we're making sure that they're hearing our voice...it's really thought through."
    — Catherine Owen Adams (04:56)

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4. Affordability and Patient Support (06:02–07:19)

• Affordability Challenges: Therapies for rare diseases can be expensive, but Acadia prioritizes ensuring access isn’t more burdensome for patients compared to more common conditions.
• Comprehensive Patient Support: The company provides financial and navigational support, and maintains open channels with patient advocacy groups to improve therapies—inclusive of recent development in drug formulations based directly on patient-community feedback.
  • Quote:

    "We have a strong focus on patient support and patient support services, not only financially but also people that they can call on to help them...that two way communication is huge in terms of rare disease."
    — Catherine Owen Adams (06:25)

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Notable Quotes & Memorable Moments

• On the stakes of rare disease innovation:

  “95% of rare diseases don't have any therapies associated with them.”
  (01:31)

• On policy effects:

  "Sometimes these things have knock on effects that aren't thought through initially. And so we're really trying to get our voices heard..."
  (05:35)

• On patient-focused development:

  "We heard from our community that they needed something different and we got that approved in December."
  (07:01)

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Timestamps for Important Segments

• Investing in Rare Disease & Neuroscience: 01:31–02:08
• Effect of NIH Cuts: 02:08–02:45
• Acadia’s Commitment Despite Policy Changes: 03:20–03:52
• Role in Policy Advocacy & Industry Leadership: 04:04–04:48
• Biotech vs. Big Pharma Policy Needs: 04:56–06:02
• Patient Affordability & Support Innovations: 06:02–07:19

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Tone & Style

The conversation is earnest, pragmatic, and empathetic, emphasizing both the business and human dimensions of biotech innovation. Catherine Owen Adams conveys both urgency and hope, advocating passionately for patients, small biotech innovation, and smart, patient-centric policymaking.

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Transcript

[A]

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[B]

You're listening to Bloomberg businessweek with Carol Massar and Tim Stanvak on Bloomberg Radio.

[C]

And Shifting policy affordability pressures and innovation in therapeutics are just some of the key themes shaping the global health care industry right now. One publicly traded company emerging as a key player in the space is $4.5 billion Acadia Pharmaceuticals, which sponsored specializes in neuroscience and rare disease and has the first and only FDA approved treatments for Parkinson's disease, psychosis and Rett syndrome. We're going back right now to the JP Morgan Healthcare Conference in San Francisco to speak with Catherine Owen Adams, CEO of Acadia Pharmaceuticals. Catherine, thanks for joining us. Let's start by talking about kind of investing in neuroscience and rare disease. What makes this category an investable one?

[D]

Yeah, great. Thanks for having me. I'm really delighted to be with you here today. What makes neuroscience and rare and festival? I think primarily it's a huge unmet medical need that still remains for these populations. As we know in neuroscience, it's, it's a big load of disease areas, Alzheimer's, Lewy body disease, dementia, all huge unmet areas of unmet need and rare disease. I think it goes without saying 95% of rare diseases don't have any therapies associated with them. And so for us putting those two things together, it's a great place to be in terms of bringing innovation to patients.

[B]

Catherine, One thing that we're trying to understand is the effect of some of the cuts that the US Government has made when it comes to research at universities across the United States. Oftentimes the, you know, the research takes years to actually then go into some sort of medication or treatment that then has to get approved by the fda and then that has to get to patients. It's a very, very long process. Any investors in biotech are very familiar with this. Has the pipeline been disrupted, though, because of cutting off of funding by the US Government?

[D]

You know, from an Acadia perspective, it has not. We continue to work with partners who are in preclinical and clinical stages, as well as our own internal groups. But what I have heard from some of our earlier stage discussions is that those NIH cuts are, are being fe felt. And I do worry longer term that that knock on effect will be felt especially by smaller biotechs who rely on academia for a lot of our initial innovation. So I think for now, no. But longer term I do definitely worry about that.

[C]

When you think about the recent policy changes in Washington, does it affect at all what drugs or treatments that Acadia pursues going forward?

[D]

I mean, I think the short answer is no. We have a strong focus on neurological and rare disease. We continue to believe that's the right place for us to focus. Our focus is on the patients and those communities where they don't have options. And the changes in the administration, they come and go and we deal with them. But ultimately our focus is on that patient need.

[B]

Do you have a line to Washington D.C. do you have communication with either the Secretary of Health and Human Services or the FDA chief? Do you, do you have that line of communication?

[D]

You know, as a CEO in biotech, I think it's important to be out there developing those lines of communication, which is why I've been so involved in bio. I'm on their executive committee and I lead their emerging company section with a fellow CEO. I'm also part of the mid size Biotech Group of America. And both of those groups are having active discussions with all types of policymakers. Whether it's on the Hill or at the fda. We're actively engaging to ensure that they hear our voice. When some of these policies move from, you know, voluntary to actual legislation, it's important that those voices are heard. As that legislation is being drawn up and I'm actively out there making my voice heard.

[B]

What is your voice saying right now? What are you telling them? What are you telling the group? What are you saying as a group? What do they need to hear?

[D]

Yeah, I think what we're trying to encourage thought around is that we appreciate that there needs to be changes in how we are innovating globally around health care and costs are pressuring all governments around the world. But that small biotech is the lifeblood of future innovation for patients. And the policies and legislation that they're trying to apply to large pharma businesses, where I've been for the last 30 years, and appreciate that there are many more tradeoffs that those large pharma companies can make as a small biotech, our opportunity, opportunity to trade off is very limited. And so we're making sure that they're hearing our voice around ensuring that there are appropriate carve outs maybe for rare disease or smaller biotech so that the legislation isn't a peanut butter approach, but it's really thought through. I don't think anybody's out there to try and shut down innovation in biotech, but sometimes these things have knock on effects that aren't thought through initially. And so we're really trying to get our voices heard so that that can be taken into account as the legislation is developed.

[C]

Talk to us a little bit about affordability because some of these rare diseases and like we said in the beginning, you have the first and only FDA approved treatments for Parkinson's disease, psychosis and Rett syndrome. How do you think about affordability for rare disease therapies? Is it more expensive for the patient than some something else?

[D]

You know, we really try and work hard to ensure that it's not. We have a strong focus on patient support and patient support services, not only financially but also people that they can call on to help them through the various stages of insurance and whether those processes are going smoothly after they start therapy, whether they've got people to call to ensure that they are understanding maybe side effects that they didn't know about. So we really do a lot to ensure that our patient services are focused on thorough, especially in the rare disease space. And we work a lot with the patient advocacy organizations. Their voice is so important in our rare disease community. We have a big team who's out there getting those voices into our, into our commercial teams, into our R and D teams. And that's how we've developed our new formulation for debut. We heard from our community that they needed something different and we got that approved in December. So that two way communication is huge in terms of rare disease.

[B]

Catherine Owen Adams, thanks for joining us this afternoon. Appreciate it, Catherine. CEO of Acadia Pharmaceuticals.

[E]

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