Key Moments
What to Do When You’re Told There’s Nothing Left to Try | David Fajgenbaum, Kiah Williams | TED
TEDx TalksKey Moments
When told there are no more options, David Fajgenbaum and Kiah Williams found solutions by repurposing drugs and redistributing unused medicine, proving that 'actionable hope' can overcome impossible odds.
Key Insights
David Fajgenbaum discovered that off-label use of drugs, where treatments are approved for diseases other than the one they are being used for, saved his life, leading to the realization that many life-saving drugs are overlooked.
Kiah Williams noted that 30% of people in the US cannot get the medicine they need due to cost, which inspired her to find solutions to address this at a root level.
The concept of 'motivation follows motion' suggests that taking action, even with limited answers, can lead to progress, as highlighted by Sirum's growth from a student project to the largest redistributor of unused medicine.
Sirum's success in launching a home-delivery pharmacy in Georgia began with a single concerned citizen emailing to inquire about implementing the program in their state.
David Fajgenbaum's framework for overcoming challenges involves having a vision, building a strong team, and taking things one step or one breath at a time.
Kiah Williams, despite identifying as a 'realistic, pragmatic pessimist,' finds motivation in the privilege of being able to choose 'hard things' to tackle, rather than facing unavoidable life-or-death struggles.
Discovering hidden cures when options run out
David Fajgenbaum's personal health crisis, during which he was critically ill with Castleman disease and doctors stated they had exhausted all options, became a turning point. Despite receiving seven different chemotherapies not designed for his condition, they saved his life. This experience ignited a powerful question: if existing drugs could help him when they weren't intended for his disease, how many other life-saving drugs were available in pharmacies that could treat other diseases? This realization fueled his mission to find these 'hidden cures' and led him to discover another drug, sirolimus, that ultimately saved his life. This journey transformed him from a patient into a researcher, driven by the understanding that solutions can sometimes be found by repurposing existing medications, even when conventional treatments fail. The impact of seeing patients revived by these unexpected treatments provides profound motivation.
Addressing the prohibitive cost of medicine
Kiah Williams observed firsthand the systemic barriers that prevented patients from accessing necessary medications. Working as a health coach in medical clinics, she saw individuals struggling with chronic conditions because they couldn't afford their prescriptions. This inability to afford treatment meant their blood pressure, cholesterol, and diabetes remained unmanaged, directly impacting their health outcomes. Williams recognized that these external factors were significant obstacles to patient well-being and aimed to address these root causes. She highlighted that a staggering 30% of people in the U.S. face difficulties obtaining needed medicines due to high costs, a problem that demands more than just awareness but immediate action.
The power of action over apathy
Both Fajgenbaum and Williams emphasize the principle that 'motivation follows motion.' Instead of waiting for perfect clarity or complete solutions, they advocate for taking the first step, even with only a fragment of an answer. Williams uses the example of Sirum, which began as a student project and grew into the largest redistributor of unused medicine, to illustrate this point. She describes how a simple email from a concerned citizen in Georgia, inquiring about how to bring their program to their state, led to a meeting with a legislator and eventually the launch of a home-delivery pharmacy. This demonstrates that even a single phone call or email can be a catalyst for significant change. Choosing to act, rather than succumbing to apathy, is crucial for driving progress, regardless of the scale of the challenge.
Transforming personal crises into fuel for change
Life's challenges, whether near-death experiences or economic hardship, can serve as powerful motivators. Fajgenbaum's illness, while debilitating, pushed him to explore unconventional treatments and ultimately dedicate his career to finding cures for rare diseases. Similarly, Williams' early exposure to poverty and family struggles instilled in her a drive to create a better future for herself and others facing similar circumstances. They both argue that rather than allowing these circumstances to contract opportunities, they can be harnessed as creative fuel. By reframing personal adversity, individuals can find the energy and determination to pursue ambitious goals and enact meaningful change.
The cycle of actionable hope: Hope, action, impact
Fajgenbaum introduces the concept of 'actionable hope' as a vital circuit for driving progress. It begins with hope—identifying what one wishes for or prays for. This hope, however, must translate into action, which in turn can lead to impact. The impact then generates more hope, creating a positive feedback loop: hope, action, impact, leading to more hope, action, and impact. This continuous cycle, when sustained, can lead to significant achievements over time, such as the development of organizations like Every Cure, dedicated to saving lives globally. The journey starts with a deep reflection on personal aspirations and translates them into tangible steps.
Leveraging personal networks and grassroots efforts
Both Fajgenbaum and Williams highlight the underestimated power of individual action and community support. Williams' experience with Sirum shows that local legislative change often starts with a single, informed constituent reaching out to their representatives. This decentralized approach, where motivated individuals push for change at the local or state level, can ripple outwards. Fajgenbaum echoes this, suggesting that actions like calling a legislator or posting on social media can raise awareness and contribute to solving problems. Building a strong team, whether for personal well-being or professional endeavors, is also crucial, as support from family, friends, and colleagues can provide the necessary strength to navigate difficult challenges.
Choosing 'hard things' as a privilege
Kiah Williams, who identifies as a pragmatic pessimist, finds purpose not necessarily in optimism, but in the privilege of choosing to tackle difficult problems. Having escaped a situation of scarce resources, she now sees it as a privilege to be able to dedicate her energy to challenging systemic injustices and inequalities. This perspective reframes hardship not as an imposed burden, but as a chosen path for growth and impact. For many, the ability to choose 'hard things' – whether starting a new venture, changing careers, or advocating for a cause – is a luxury not afforded to those struggling for basic survival. Recognizing this privilege empowers individuals to engage more fully with meaningful, albeit difficult, work.
Finding focus in 'overtime'
David Fajgenbaum frames his prolonged recovery from Castleman disease and his subsequent work as living in 'overtime'—a state of heightened focus and urgency, akin to the final moments of a game. He posits that we are all in overtime, regardless of our circumstances, and have the ability to make the most of every moment. This perspective helps cut through distractions and focus on what truly matters. It clarifies priorities, reminding individuals to concentrate on the essential actions needed to achieve their goals. By embracing the concept of overtime, one can reduce the noise of less important concerns and dedicate energy to impactful pursuits, whether personal or professional.
Mentioned in This Episode
●Organizations
●Drugs & Medications
●People Referenced
Common Questions
David Fajgenbaum's experience with Castleman disease shows that even when doctors are out of options, sometimes a life-saving drug exists that wasn't initially made for the specific disease. Kiah Williams emphasizes starting with a small step and moving forward, even with only 5% of the answer.
Topics
Mentioned in this video
Host of the TED discussion, facilitating the conversation between David Fajgenbaum and Kiah Williams.
Co-guest on the TED talk, who nearly died from Castleman disease and became a researcher in his own right, co-founding Every Cure.
Co-guest on the TED talk, who grew up in poverty and founded Sirum, an organization focused on medication access.
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