Our Story

The big problem is funding

After speaking with many scientific researchers, clinicians and advocates, we came to the view that the reason for the slow pace of scientific advances to treat disease is often not because science is difficult, but because science is not funded. And in the cases where research does get funded, money is often given to the wrong projects. Even worse, research often suffers from a lack of vision, coordination, collaboration and effective project management, meaning that important opportunities are lost.

The cause of funding shortfalls: institutional dysfunction

Long Covid is a solvable problem, and with the right approach one that we believe could be addressed in short order. HIV was a death sentence in the early 1980s, but today patients can live normal lives. The story with Hep C is similar. The world today has incredible technology and brilliant, motivated research teams capable of quickly figuring out exactly what Long Covid is, and what to do about it. We should be able to address Long Covid substantially more quickly than we did HIV and Hep C.

There is also an overwhelming economic and humanitarian case for treating this as a global public health emergency. But Long Covid science is moving far too slowly. The main reason for the failure to address the crisis of Long Covid is large scale institutional dysfunction. The large organizations that we need to act to deal with Long Covid - specifically to fund and drive research - are failing to do so, and do not have the incentives or organizational structures to do better. Governments typically move slowly on matters like this, and need to be pushed by advocacy groups (which are themselves scarcely funded); pharma has limited interest in acting until research is more advanced; philanthropic organizations have pre-allocated research buckets that don’t yet include Long Covid. So science remains starved of funding and Long Covid patients remain indefinitely sick.

Learning from the playbook

The good news is that Long Covid patients are not the first to face this challenge. We can learn from the efforts of patients of other diseases, like HIV, who wrote the playbook on how to mobilize research funding, how to support the scientific community, and how to engage with pharma and regulators to get effective treatments to patients. We can also learn from the work of pioneers like Michael J. Fox, whose foundation has rasied over $1 billion for Parkinsons research.

Looking at what others have done before, we came to the view that Long Covid patients need a research organization singularly dedicated to understanding and treating Long Covid. This organization needs to focus singlemindedly on removing the road blocks to progress with Long Covid science and treatments. That means we need to build the institutional capacity to:

1. Mobilize large amounts of research funding quickly;

2. Develop visionary, fully joined up research agendas encompassing Long Covid science and therapeutics; and

3. Execute those research agendas at speed while delivering high quality science.

So that is what we set out to do.

Read more below about how we’re going about that.