How Nearly Dying Helped Me Discover My Own Cure (and Many More) | David Fajgenbaum | TED

Name: How Nearly Dying Helped Me Discover My Own Cure (and Many More) | David Fajgenbaum | TED
Duration: 14 min 1 s
Description: Physician-scientist David Fajgenbaum was dying from a rare disease that didn't have a cure — until he discovered a lifesaving drug that wasn't originally int...

14:01Added Aug 30, 2026

Physician-scientist David Fajgenbaum was dying from a rare disease that didn't have a cure — until he discovered a lifesaving drug that wasn't originally int...

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Contributed by 刘嘉琪

Transcript

00:04Hi, I'm David Fajgenbaum and this is me in 2010,
00:09when all of my organs were shutting down
00:11and I was dying for the first time.
00:13My doctors came in the room and told me, "David, we've tried everything.
00:18There's nothing more we can do."
00:20But I was so sick, I didn't really know what my doctors meant,
00:23until my family came in the room and started hugging me goodbye,
00:26and a priest read me my last rites.
00:29I was 25 years old, a former college quarterback and a medical student
00:33who had dedicated my life to becoming a doctor
00:35after my mom died from cancer.
00:37And yet here I was, literally dying from a disease
00:39that I'd never even heard about during medical school,
00:42called Castleman disease,
00:43where your immune system attacks and shuts down your vital organs
00:46for an unknown cause.
00:48There were no approved treatments and no cures.
00:51But in a last-ditch effort to save me,
00:53my doctors gave me a combination of seven chemotherapies
00:55that weren't meant for my disease.
00:58Amazingly, they worked, I survived, I returned to medical school,
01:02and I got what I think might be the worst before-and-after picture of all time.
01:06(Laughter)
01:08But then, I relapsed,
01:10again, and again.
01:13Five times in three years, I almost died from my disease.
01:17I'll never forget, during my third relapse,
01:19when I was laying in my hospital bed,
01:21with my girlfriend Caitlin and my family around me,
01:24my gown was drenched in tears.
01:27Not just because I was dying,
01:28but because of all the things that I would miss out on --
01:31the family that I’d never have with Caitlin,
01:33the patients that I'd never treat,
01:35the cures I'd never discover in memory of my mom.
01:37See, until then, I'd been waiting and hoping
01:40that some researcher somewhere would discover a treatment
01:43that could save my life.
01:45But in that moment, I realized that hope alone is not enough.
01:48If I wanted any chance of survival,
01:50I would need to turn my hope into action,
01:52to try to find a treatment to save my life.
01:55There was just one really big problem.
01:57I didn't have 15 years and a billion dollars
02:00to develop a new drug from scratch.
02:03The good news is that those seven chemotherapies that had saved my life,
02:07they weren't made for my disease.
02:09So I thought to myself,
02:10"Maybe there's another drug, made for another disease
02:13that could also be repurposed for me."
02:16This concept of repurposing isn't new.
02:18You've probably all heard of Viagra before, right?
02:22Well, you may know that Viagra was repurposed from heart disease
02:25to its well-known use.
02:27But did you know it's also now utilized for a rare pediatric lung disease?
02:32And thalidomide, which is known for causing horrible birth defects,
02:36is now utilized for leprosy
02:38and the cancer multiple myeloma.
02:40Now repurposing works because,
02:42though diseases like leprosy and myeloma may appear very different,
02:45they can actually share the same underlying problems
02:48or mechanisms in the body,
02:49and can therefore be treated with the same drug.
02:52And amazingly, doctors can prescribe any FDA-approved drug
02:56for any disease where they believe the benefit outweighs the risk,
02:59through something called off-label prescribing,
03:01and off-label prescribing is actually very common.
03:03In fact, one in four prescriptions written every single day in the US is off-label.
03:08So I began to study my own blood in the lab
03:10to try to find a repurposed drug for me.
03:13I discovered that a communication line in my immune system
03:16was turned into overdrive,
03:18and that a decades-old transplant drug might be able to turn it off.
03:21It had never been used before for my disease,
03:24but I was out of options.
03:25So I began to test it on myself.
03:28In the three years before I started sirolimus, I nearly died five times.
03:32But since starting it, I've been in remission for over 11 years.
03:36(Cheers and applause)
03:37Oh, thank you.
03:38(Cheers and applause)
03:39Thank you.
03:40(Applause)
03:42During this remission, I married Caitlin, who's here with us today.
03:46We --
03:47(Cheers and applause)
03:52We had two amazing children.
03:54I wrote a book about my journey, "Chasing My Cure,"
03:57which is being turned into a film,
03:59and I joined the faculty at the University of Pennsylvania
04:02to continue to chase cures for rare inflammatory diseases and cancers.
04:05And then in 2022, I cofounded Every Cure,
04:08a nonprofit organization that's on a mission to unlock
04:11the full potential of each and every drug
04:13to treat each and every disease that it possibly can.
04:16Over these years, we've advanced 14 repurposed treatments
04:20for multiple diseases, saving thousands of lives.
04:24Like Kylo, who began her freshman year of nursing school
04:27after we repurposed a bone-marrow cancer drug to save her life,
04:31which is now being studied in clinical trials.
04:34And Michael, who walked his son down the aisle on his wedding day,
04:38after we repurposed a melanoma drug to treat his rare cancer,
04:41which is now being used all over the world for that rare cancer.
04:45With every one of these discoveries,
04:47all I can think about is how many more life-saving drugs
04:50are sitting at our local pharmacies
04:52that could be life-saving for patients with diseases today.
04:56Because see, us humans, we've developed 4,000 drugs for about 4,000 diseases,
05:02but there are over 14,000 diseases that don't have a single approved therapy.
05:08That means that one in 10 of us and our kids
05:10will develop a rare disease without any approved treatments,
05:13and many more of us will develop diseases with limited treatment options.
05:18We know that many of these FDA-approved drugs
05:21could treat many more of these diseases,
05:24and for less than one percent of the cost of new drug development,
05:27and way faster.
05:29So why aren't we repurposing drugs?
05:33Well, the short answer is that it's just not profitable to pursue a new use
05:37for an existing medicine,
05:38especially for a rare disease,
05:40and the 80 percent of drugs that are already generic,
05:43it just costs too much to do the clinical trials,
05:45and companies can't expect to make back the costs in sales.
05:49Instead, we focus on new drugs for profitable diseases,
05:54and no one, not the NIH, not the FDA, not pharma,
05:57no one has taken responsibility
05:59for systematically unlocking these hidden cures ... until now.
06:04We're utilizing artificial intelligence to scan across the world's knowledge
06:08of all 4,000 drugs and all 18,000 diseases
06:12to find the most promising opportunities to save and improve lives.
06:15You can think about it a bit like Netflix,
06:17which uses data on the actors, the directors
06:20and the movies that you watch,
06:21and the interconnectedness between them,
06:23to predict which movies you might like to watch in the future.
06:26Well, we do something similar,
06:27but instead, we use the world's knowledge of all approved drugs and all diseases
06:31and the connectedness between them
06:33to predict which drugs might be useful in new ways,
06:36much faster than any team of humans ever could.
06:39And then, we use artificial intelligence
06:41to look across the millions of drug-disease matches
06:44to identify the best opportunities to reduce suffering
06:47and have the greatest impact possible.
06:49Then, we take those specific programs forward.
06:52We study them in the laboratory, in clinical trials,
06:54and sometimes, we go right to spotlighting them,
06:57because the work has already been done to prove that they're effective.
07:01Now, when we first were dreaming about creating Every Cure,
07:05my cofounders Grant Mitchell, Tracey Sikora and I,
07:08we knew all of this was possible in theory,
07:11but we didn't really know how we were going to turn it into reality,
07:14or how we were going to fund it.
07:16Clinical trials are not cheap.
07:18But then, I got an email --
07:19actually, from a member of the TED community --
07:22telling me about something called The Audacious Project,
07:24which selects ten nonprofits every year, solving the world's biggest challenges.
07:29And just knowing that Audacious existed,
07:31and knowing that this community here was supporting this kind of work,
07:34it gave us the courage to really take this leap and to start this organization.
07:39We got started, and then we applied for funding,
07:43and we were so hopeful we would get it,
07:45and then, we weren't selected.
07:47(Laughter)
07:48But then, we applied again.
07:49And just a few months ago,
07:51we received this really transformative funding.
07:53Thank you all so much. Truly, thank you.
07:55(Cheers and applause)
08:01Between this funding from The Audacious Project,
08:04and also from a federal agency in the US called ARPA-H,
08:07we are building an AI-powered engine to repurpose 15 to 25 treatments by 2030,
08:13and with additional funding,
08:14to be able to repurpose dozens and even hundreds more treatments.
08:18Now we've only been running our full pipeline for a few months,
08:21but we're already helping patients.
08:23The very first time we used a high-scoring drug from our algorithm
08:26was for a patient with Castleman disease, the disease that I have.
08:29But unfortunately, the treatments we discovered for me
08:32weren't working for this patient.
08:33He was getting ready to say goodbye to his wife and daughter,
08:36because he was getting ready to be transferred to hospice care.
08:39But we recommended this number-one drug from our platform,
08:42and amazingly, it saved his life.
08:44He's been in remission now for over two years.
08:46(Applause)
08:47Thank you.
08:48(Applause)
08:52Now this is an example
08:53where we discovered a repurposed treatment,
08:55but sometimes, we actually uncover matches that already exist,
08:58they're just not being utilized.
08:59For example, one day, I was reviewing through the results of our platform,
09:03and I came across leucovorin,
09:05this cheap vitamin derivative,
09:06where there was data to suggest that it could help to improve speech
09:09in a subgroup of patients
09:11who have antibodies against the folate receptor,
09:13so they don’t get folate into their brain.
09:15I was so amazed to learn about the work being done by Richard Frye.
09:19He had done the first of three randomized controlled trials
09:22that showed a benefit for this medicine in this subgroup of patients.
09:25And I learned about Mason, photographed here,
09:28who was nonverbal for three years,
09:31and within three days of starting leucovorin began to say his first words.
09:36(Applause)
09:37And then -- yes, this is incredible.
09:39(Applause)
09:41And then Ryan, photographed here on the right,
09:44was basically nonverbal for five years,
09:47and had never shared a complete thought or feeling with his parents,
09:50and was told by doctors that he probably would never share a feeling with them.
09:55Within two weeks of starting leucovorin,
09:57he turned to his dad when he was leaving for work and said, "Daddy, I love you."
10:01It's just incredible.
10:04(Applause)
10:05It's just incredible.
10:06(Applause)
10:10What's also incredible is that there's a blood test
10:13that can help to identify kids like Mason and Ryan
10:16that is available to help to find these patients,
10:18and it's still barely being utilized.
10:21This is why we started Every Cure, to unlock these hidden treatments
10:25and make sure they reach every patient they can possibly benefit,
10:28like we did for Joseph, who was dying from POEMS syndrome,
10:31which is a rare cancer,
10:33and on his 30th birthday was saying goodbye to his girlfriend Tara,
10:36because his doctor had tried everything that he thought was possible.
10:40We recommended three drugs
10:41that are commonly used for multiple myeloma,
10:43which is similar to POEMS syndrome,
10:45in a last-ditch effort to save him.
10:47And amazingly, they worked.
10:48Instead of planning Joseph's funeral service,
10:51Joseph and Tara are planning their wedding day.
10:53And Joseph's here with us today, from Seattle.
10:55Joseph, I'm so glad you're here.
10:58Woo-hoo.
10:59(Cheers and applause)
11:08I'm so glad you're here, Joseph, in so many ways.
11:12How many of us have sat with someone we loved,
11:15like Caitlin did and like Tara did,
11:18and like Mason's parents did,
11:20and heard the words "We've tried everything.
11:23There's nothing more we can do."
11:25What if we haven't tried everything?
11:28What if there's a solution out there for them,
11:30and thousands, maybe even millions more, with their disease?
11:33And what if we all came together to find these solutions?
11:36Because we can't do it alone.
11:38And we need your help.
11:39Please join us to unlock every cure so that no patient suffers
11:44when there's a life-saving cure sitting on the pharmacy shelf.
11:47And instead of hearing "we've tried everything,"
11:49they can hear "we have something."
11:51Thank you all so, so much.
11:53(Cheers and applause)
11:55Thank you.
11:57(Cheers and applause)
12:06Latif Nasser: David, this feels miraculous.
12:09Like, you're telling me that there are dying people
12:13waiting for a drug to be discovered,
12:16but actually, they can just go down to their corner pharmacy,
12:19and there might be a cure for them at an affordable price?
12:24David Fajgenbaum: That's right.
12:25LN: It's, like, too good to be true.
12:27DF: Well, it is, except for the fact that it's just not profitable to do this.
12:31So that's why it exists.
12:32These opportunities are there, we can help a lot of people.
12:35But in the current system, there's just no incentives to do it.
12:38LN: One of the other interesting things to me,
12:40I studied the history of medicine, and what's so interesting is,
12:43for a lot of history, medicines were cure-alls, right?
12:47Like, the 19th-century patent medicine that was, like, for your indigestion
12:52and your infertility, and your da da da.
12:54And then, so much of modern medicine was evidence-based,
12:58targeted therapy, like, laser-focused therapies.
13:00And it's almost like you're saying,
13:02"No, we need to broaden it out again."
13:05DF: That's exactly right.
13:06And in fact, companies will oftentimes consider
13:0915, 20 or even 30 diseases for a given drug,
13:12but they have to pick the one or two to focus on.
13:14And oftentimes, those dozens of opportunities just sort of get lost.
13:18And so we're trying to uncover them, try to find, you know,
13:21what's really been falling through the cracks.
13:23LN: What can ordinary people do to help?
13:26DF: Well, the first thing
13:27is that we really want you guys to all be a part of the solution.
13:30So if you've ever received a drug that was repurposed for your disease,
13:34received a drug off-label, tell us about it.
13:36Go to everycure.org/ideas.
13:38Also, as I mentioned earlier, these trials are very expensive,
13:42so donating to us at everycure.org/donate, and of course raising awareness.
13:46Part of this is running campaigns
13:48to get the word out about these treatments.
13:50So if you see us sharing about treatments that can help patients,
13:53please, please help to amplify that.
13:56LN: Thank you so much, David Fajgenbaum.
13:58(Cheers and applause)