IP Blocks Medical Treatments

Siqi Chen believes the medical research system is fundamentally broken, particularly for rare diseases, due to misaligned incentives around intellectual property and profit motives. His personal experience researching treatments for his daughter's rare brain tumor has revealed significant gaps between standard care and frontier treatments, especially for rare conditions.

Key Points:

• Personal Motivation Driving Research:

  • His daughter was diagnosed with a rare brain tumor in September
  • This motivated him to deeply research potential treatments beyond standard care
  • "There's no one more motivated than a dad with a sick kid"

• Gap Between Standard Care and Frontier Treatments:

  • Huge disparity exists between what's available at hospitals and what's known at research frontiers
  • For rare diseases, the research gap is even wider due to lack of critical mass
  • He became more knowledgeable about his daughter's specific condition than specialists who "have to study 50 different cancers"

• IP Issues Block Promising Treatments:

  • Existing drugs with potential cancer applications aren't being clinically tested because they can't be patented
  • Example: A pinworm drug from the 1970s shows promise for cancer treatment but has no clinical trials
  • "You can't patent a pinworm drug and so all the money, hundreds of millions, billions of dollars are going to new molecules that are patentable"

• Research Access Problems:

  • Academic research is locked behind expensive paywalls
  • Publishers like Elsevier charge "an arm and a leg" while researchers and peer reviewers get paid nothing
  • He asked Sam Altman to create a version of Deep Research that could access paywalled articles using credentials

• Motivated Individuals Can Find Solutions:

  • He's not the first founder to face this situation - cites Clubhouse co-founder Rohan who manufactures his own drugs
  • Successfully proposed an alternative treatment path that his daughter's medical team eventually agreed was better
  • "If you're sufficiently motivated... you can go so much further than what is available as standard of care"