Acadia CEO on the Fight Against Rare Diseases

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1:32Bloomberg Audio Studios. Podcasts. Radio. News. You're listening to Bloomberg Businessweek with Carol Masser and Tim Stenevek on Bloomberg Radio. And shifting policy, affordability pressures and innovation and 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 this space is$4.5 billion Acadia Pharmaceuticals, which 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 J.P.

2:13Morkin 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? Yeah, great. Thanks for having me. I'm really delighted to be with you here today. What makes neuroscience and rare investable? I think primarily it's the huge unmet medical need that still remains for these populations. As we know in neuroscience, it's a big load of disease areas, Alzheimer's, Lewy body disease, dementia, all huge areas of unmet need.

2:55And 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. Catherine, one thing that we're trying to understand is the effect of some of the cuts that the U.S. government has made when it comes to research at universities across the United States. Oftentimes, 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.

3:35It'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 U.S. government? 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 being 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.

4:16So I think for now, no, but longer term, I do definitely worry about that. When you think about the recent policy changes in Washington, does it affect at all what drugs or treatments that Acadia pursues going forward? 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. Do you have a line to Washington, D.C.?

4:56Do you have communication with either the secretary of Health and Human Services or the FDA chief? Do you have that line of communication? 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 midsize 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. today, we're actively engaging to ensure that they hear our voice.

5:37When some of these policies move from 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. 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? 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 healthcare and costs are pressuring all governments around the world. But that small biotech is the lifeblood of future innovation for patients.

6:18And 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 trade-offs that those large pharma companies can make. As a small biotech, our 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.

6:58And so we're really trying to get our voices heard so that that can be taken into account as the legislation is developed. 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 something else? 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.

7:49So we really do a lot to ensure that our patient services are 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 commercial teams, into our R &D teams. And that's how we've developed our new formulation for DEBU. 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. Catherine Owen Adams, thanks for joining us this afternoon.

8:23Appreciate it. Catherine, CEO of Acadia Pharmaceuticals.

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