Preserving Medical Hope: The Role of Intellectual Property on World IP Day

Intellectual property (IP) protection is vital for continued incentives to produce groundbreaking technology. While intellectual property protection has resulted in some of the most significant inventions across the board, it is especially relevant to patients and the medical community. With World Intellectual Property Day on April 26, we want to call attention to the policies that are threatening American innovation, that until now, has been a thriving ecosystem for medical discovery thanks to IP protections.

Medical research and discovery ventures are costly, lengthy, and, therefore, risky efforts for innovators. For a company, knowing there will be some return on investment is necessary to make the decision on whether to pursue the development of novel treatments. Reward matters and unfortunately, some policymakers do not see that value given their proposal to allow the government to activate “march-in” rights and confiscate patents that protect the fruits of the public-private partnerships’ labor.  

This public-private collaboration was spawned by the bipartisan Bayh Dole Act that allowed universities, businesses, and non-profit organizations that receive federal funding to retain ownership of their inventions. The ensuing boom in innovation has resulted in more than 200 new drugs and vaccines since 1980 – a significant number of drugs for an even more significant amount of patients. However, the abuse of “march-in” rights is a gross misinterpretation of the Bayh Dole Act and will ultimately discourage the public-private R&D ventures that have the potential to bring breakthrough treatments in the desperate hope of a cure.

For Judy Stecker and her family, protecting the incentives to produce lifesaving drugs could not be more important. At just four weeks old, her son Wheeler was diagnosed with CLN3 juvenile Batten disease, a rare and ultimately fatal disease. When initially diagnosed, there was hope with multiple therapies in the pipeline. However, because of the challenges of researching these rare diseases coupled with the anti-innovation sentiment within Washington, these promising therapies have either ended or stalled as increased regulatory burdens and bureaucratic hurdles drained funding and resources. With the IRA’s price control policies and the theft of patents potentially becoming a reality, investors are pulling back on funding as these policies decimate opportunities for returns on investment. For Wheeler, however, this is a life-changing policy failure. The scientists on the verge of discovering the next big treatment for Wheeler, as well as any other patient, are unable to accelerate or even realize their efforts because of lawmakers who lack the understanding of the impact their policies will have on American patients. The science is hard enough; policies that doom innovation before it can even be realized have real consequences. It doesn’t matter if these undiscovered treatments would have saved one patient or millions; just one victim of these policies should be enough to stop them in their tracks.

Wheeler’s story is just one of many that rely on the protection of patents. For politicians on the Hill, these policies that cross their desks might not even illicit a second thought. But for Wheeler, SFS Founder CZ, and any other American patient, these bills are the difference between life and death. April 26th is a day to celebrate the great inventions and lives saved through the protection of intellectual property. However, we encourage policymakers to consider the lives of patients and others who will be directly impacted in the future if patents continue to be undermined, either through the activation of "march-in" rights or any other forthcoming policy.