sending more than good vibes
how Vibe Bio uses infra design to pave a different path to finding rare disease cures
Nearly 1 in 10 Americans is fighting a rare disease, which the NIH defines as a condition affecting fewer than 200,000 people in the US. There are over 7,000 such diseases out there, each of which affect less than 0.0625% of the population. Because the total addressable market of a cure for each disease is so small, big pharma has historically deprioritized drug development targeting rare and orphan diseases in favor of finding treatments for more widespread conditions.
This leaves the 10% of Americans with rare diseases—about half of whom are children—and their loved ones to struggle with the physical and emotional toll of debilitating prognoses. For some conditions like Castleman Disease, which physician-scientist David Fajgenbaum himself was diagnosed with and has since dedicated his life to finding a cure for, there’s hope. But the patient populations for a majority of these conditions don’t have any deeply invested experts in their corner to drive progress.
The feeling of helplessness that plagues these patient populations has unsettled me ever since I read Fajgenbaum’s memoir, Chasing My Cure, back in college (highly recommend). Recently, it’s been more top of mind since Vibe Bio, a startup focused on transforming the pursuit of cures for orphan diseases, announced its launch. After learning about them on this pod (and then this one and this one), I reached out to the team and ended up having a conversation with co-founder and Chief Product Officer, Joshua Forman. This post will cover:
The fight for rare disease treatments
How Vibe Bio flips the script
Infra decisions are design decisions
UX still matters
the fight for rare disease treatments
The stats listed earlier show that while the patient population for each rare disease is small, the total sum of people affected by a lack of R&D for life-saving treatments is pretty big. Looking at the struggles—beyond their disease symptoms—affecting these rare disease patients in aggregate, they all boil down to misallocated power.
The process for bringing new therapeutics to market involves a complex web of stakeholders. At a high level, these stakeholders can be categorized under:
Patient communities - patients, their loved ones, and advocacy organizations
Drug development experts - people with expertise and resources spanning R&D, clinical trials, manufacturing, etc. (often all represented in big pharma teams)
Shareholders - parties invested in the companies driving drug development
Regulators - the FDA (in the US) and the EMA (in Europe)
Looking at just patient communities and drug development experts to start, there’s strong alignment. Patients need life-saving treatment, and pharma companies are on a mission to deliver it to them. But the process these companies need to take to deliver this treatment is highly time- and money-intensive, in large part due to the regulations put in place by the FDA. Since these companies need to answer to the shareholders who help finance their investigations, their time and money investments are ultimately shaped by ROI instead of just patient needs.
By the time all stakeholders are factored in, control is stripped from patients’ hands unless they have a common condition to give their patient population some buyer power. This loss of control is what creates a sense of helplessness in the mainstream drug development process, and is what drives patient communities today to seek progress through advocacy, generous benefactors, and academic expertise.
In the existing model, giving power back to patients with rare diseases would require 1) reducing regulations to reduce time and money costs or 2) reducing traditional outside financing. But strict regulations and investor money are necessary to fund and deliver safe/effective treatments, so cutting corners in either area isn’t feasible. This means that giving patients decision-making power calls for an entirely new model.
how Vibe Bio flips the script
So the new model requires reallocating control to the community, and finding nontraditional sources of money to fund projects chosen by the community. Funnily enough, these just so happen to be the core capabilities of decentralized autonomous organizations (DAOs) within web3. The Mad Libs version of a DAO’s value prop would look something like this:
Filling it in for the rare diseases use case, we get:
Josh and the Vibe Bio team are running with that value prop to build Vibe Bio DAO, which will be governed by the community of $VIBE token holders. Tokens are issued primarily to patient communities and drug development experts (and secondarily sold to investment partners), who go about project selection in the following order:
Any token holder can propose drug development programs, as long as they’re sponsored by a patient advocacy organization.
Drug development experts go through a diligence process to score each proposed program based on projected risk and impact.
Voting power is passed back to the broader community to make a final decision on which programs to fund.
This structure puts patient communities in control of which programs even get considered, and gives a dominant voice to them and drug development experts when greenlighting projects.
infra decisions are design decisions
I don’t know how much overlap there is between rare disease patient communities and web3 natives/early adopters, but I’d bet it’s not big. So, my one question for Josh when he described Vibe Bio’s model was why this all needs a DAO, instead of a simpler centralized approach controlled by his team. Josh highlighted three main benefits that keep patients top of mind:
Vibes: “One is that we're very aligned with the community. What we're trying to do is bend the incentives of a market to something that is more human centered. That is very aligned with the web3 community ethos.”
Vibe Bio’s mission does fit the ~vibe~ of web3 projects as a whole, and using web3-based infra folds the company into the larger ethos. For patient communities, as well as potential non-traditional investors, this association instantly adds some familiarity and credibility to the company’s mission.
Reliability: “One of the most important aspects of blockchain is that it’s a set of computers that can make commitments. We're designing a governance process that is going to be on-chain and is going to have within it the inability to ‘rug a project,’ which generally means changing the rules out from under the project unexpectedly to the community. We're baking in safeguards to make sure that we can't do that.”
Beyond just bolstering how the mission is perceived, blockchain tech does enable a key feature set for Vibe Bio that other implementations do not. The ability to codify community decisions like where funding gets allocated is unique to DAOs, and builds a level of trust with patients that is unattainable with centralized systems that have historically failed them. Given that the value Vibe Bio adds is in redistributing power to patients, it’s important that patients believe in this power and actually exercise it to make progress towards rare disease cures.
Scalability: “The composability of the core code at the center of the DAO means that it's relatively easy to be able to create that constellation of interrelated DAOs. It is probably an order of magnitude easier and cheaper than using a large interrelated set of C. Corp's or whatever kind of structure that you would need a whole host of very expensive lawyers to constantly construct for you.”
The company’s main focus is on rare disease patient communities right now, and the first two benefits have direct value for them today. This last benefit Josh that calls out is more future-looking, and sets Vibe Bio up to help a variety of underserved groups in medicine. For example, pulling from a blog post I just read, a DAO could be used to empower patients with women’s health conditions to direct more funding towards relevant research (an incredibly important cause due to the gender health gap). Vibe Bio’s decision-making model is highly applicable to such use cases, and the web3 infra they have chosen will reduce the necessary dev time and costs associated with addressing the needs of related patient communities.
UX still matters
Web3 UX tends to be pretty bad, which normally wouldn’t be a problem given how emerging the technology is. However, the constant media coverage, TV ads, and boom in offerings meant for non-web3 native audiences makes poor UX a pressing issue (you can read my full take on the matter in this post). I see Vibe Bio among those offerings and while I understand why a DAO is the right approach, I’m still concerned about what usability will look like for the audiences they’re targeting.
The team has only just started to think about what stakeholder-facing experiences will look like, but Josh has a guiding principle in mind to shape their design decisions: “One of our core product philosophies is that technology should serve humans, rather than the other way around.”
For Vibe Bio, this means that blockchain tech should power the infra layer of their product, but users should never have to learn how to interact with it. The team envisions a traditional web2 user experience built on top of this infra, giving the “normal people who are trying to achieve normal goals,” as Josh puts it, a familiar way to participate in the DAO. And for anyone who is excited by the tech of it all, they can still interact with the application stack directly using regular web3 tools.
The team is currently focused on getting the web3 infra decisions right, so it will be a while before patient communities and drug development experts can access this more intuitive UI. Once it is available, I expect that it will make all the core functionality of the DAO (proposing/reviewing new programs, voting on funding and operational decisions, tracking progress over time) as easy as a few clicks on a web platform. But unless they take the platform even further to emulate something like Coinbase’s managed experience, users will need to have some fluency with basic web3 concepts like wallets and seed phrases so they can connect to the dapp that the team plans to build. This means the Vibe Bio experience will have a standing dependency on the crypto wallet experience, which has a lot of room for improvement.
That kind of dependency makes me skeptical of whether Vibe Bio can completely stick to Josh’s product philosophy, but the power of the DAO to change how things are done in drug development may be well worth the UX tradeoff.
Thanks to Josh and Alok for the chat, the edits, and responding to a cold DM!
Also, a quick note: I’ll be traveling a lot for the next few months (it’s Indian wedding season) so I’m slowing the cadence of these posts to once every few weeks. There’s still a lot of exciting content planned (I just can’t write it all as fast), so stay tuned!