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Health is core to our quality of life, yet millions worldwide lack treatments to diseases that threaten their lives or quality of life. For example, an estimated 400 million people worldwide live with a rare disease, 95% of which do not have a single treatment. Half of those individuals are children. Alzheimer’s disease and other dementias will likely affect over 100 million people by 2050, and antibiotic resistance could cause ten million deaths per year by that time. While lower than ten years previously, there were still 1.62 billion people suffering from neglected tropical diseases in 2022.
Everyone deserves to have someone at least attempt to find a treatment for their illnesses. Unfortunately, the current way we decide what drugs to develop leaves too many people behind. This happens for three main reasons:
- Market size: Some diseases affect too few people to make it profitable for companies to invest in cures.
- Affordability: Many patients – and the governments in their countries – can’t afford treatments, making these diseases less attractive for investors to fund.
- Uncertainty: Some health crises, like pandemics or antibiotic-resistant infections, are unpredictable, and companies hesitate to take on the financial risks of preparing for them. If we are going to be ready for a health crisis that is just over the horizon, we have to think differently.
At Conscience, we believe that teamwork and curiosity are the keys to developing novel treatments. By sharing data, sharing approaches, and sharing promising molecules, we aim to accelerate the path to developing the missing treatments. We therefore fund projects that seek to deliver new treatments through collaboration and commitment to open science.
Open science is a strategy focused on sharing ideas, data, and resources, built on the understanding that collaboration leads to better outcomes. This strategy forms the backbone of the software that powers much of the Internet as well as initiatives like Wikipedia and Creative Commons. Open science harnesses the curiosity of researchers, the contributions of patient organizations that provide samples and coordinate patients to participate in clinical trials, and the backing of philanthropies and governments trying to put a dent in global health inequality.
Conscience’s open science strategy has three components: 1) Public data sharing once quality and privacy are ensured; 2) Broad, fair distribution of research materials and end-products; and 3) Open access to the tools and methods that power discoveries.
To ensure sharing, we only fund projects where the treatments being developed can be freely used and improved by others, with the goal of accelerating the pace of innovation. This approach means we don’t fund projects that involve patenting the treatment itself, as patents can create barriers to accessibility and collaboration. In traditional drug development, patents are how companies generate the profits they need to fund their work; with rare diseases, those profits are never going to come, so patents get in the way.
Glybera, a gene therapy developed at the University of British Columbia in the early 2000s, was highly effective against an ultra-rare disease, but was patented and sold to a company that set its price at $1 million per dose. Consequently, only one dose was ever sold because no one could afford it. Eventually, the patent was passed to another company that failed to act, leaving the treatment unavailable to those who needed it. Meanwhile, the National Research Council has to spend millions redeveloping a similar treatment and putting it through clinical trials, wasting millions on a treatment that the Canadian public had already paid for.
Similarly, the development of new antibiotics illustrates how patents fail to deliver innovation in critical areas. The best use of new antibiotics is to reserve them as last-line defenses against resistant infections, but this makes them commercially unattractive. Essentially, we’re developing a treatment we hope we don’t need to use for a long time; that’s a tough case to make to an investor who needs to see a return, but an easy one to make to communities who primarily care about public health. Without the promise of significant sales, investors hesitate to fund antibiotic development, and firms with promising drugs often face bankruptcy before their treatments reach patients.
Our approach aims to avoid such pitfalls by supporting other forms of intellectual property such as regulatory exclusivities, requiring multiple sources of funding, and harnessing the curiosity of university researchers. We avoid patents because they push firms to work in secret and in siloes when sharing and teamwork are needed. We allow patents on other innovations, including novel platform technologies like AI, treatments outside our funding scope (such as for cancer or heart disease), and specialized equipment.
Based on this foundation of open science, we are building networks of funders, governments, companies, and researchers who are committed to finding solutions. Our open science policy is designed to empower small and medium-sized enterprises (SMEs) to turn ideas into impactful innovations.
We help SMEs meet potential investors interested in a return based on helping patients rather than one centered on maximizing profit, and link them with leading scientists eager to make a difference. We promote our SMEs so that they can attract talented researchers who, while wanting a good salary, also hope to do good in the world – an advantage for both recruitment and retention.
Beyond connections, we support SMEs in developing and implementing open science strategies that balance sharing with sustainability, including guidance on intellectual property and regulatory portfolios, so they can succeed in delivering life-saving treatments to those who need them most.
At Conscience, we’re transforming drug development in areas where markets fail by fostering collaboration, openness, and shared purpose. By aligning the efforts of scientists, SMEs, funders, and patient advocates, our open science policy aims to ensure that lifesaving treatments are not locked away but made accessible to those who need them most. Together, we can tackle the challenges of neglected diseases and pave the way for a future where no illness is overlooked, and no patient is told ‘there’s nothing we can do.’
Together, we think there’s something science can do.
