Name: 瀕臨死亡如何幫助我發現自己的療法（以及更多療法） | David Fajgenbaum | TED (How Nearly Dying Helped Me Discover My Own Cure (and Many More) | David Fajgenbaum | TED)
Uploaded: 2025-09-27T11:43:24.000Z
Duration: 14 min 1 s

Hi, I'm David Fagenbaum, and this is me in 2010 when all of my organs were shutting down and I was dying for the first time.

大家好，我是戴維-法根鮑姆，這是我 2010 年的照片，當時我的所有器官都在衰竭，我第一次瀕臨死亡。

My doctors came in the room and told me, David, we've tried everything, there's nothing more we can do.

我的醫生走進病房告訴我，戴維，我們什麼辦法都試過了，已經無能為力了。

程度副詞

But I was so sick, I didn't really know what my doctors meant until my family came in the room and started hugging me goodbye, and a priest read me my last rites.

但我當時病得很重，根本不知道醫生的意思，直到我的家人走進病房，開始和我擁抱道別，一位牧師為我宣讀了最後的儀式。

I was 25 years old, a former college quarterback, and a medical student who had dedicated my life to becoming a doctor after my mom died from cancer.

我當時 25 歲，曾是大學四分衛，還是一名醫科學生，在我母親死於癌症後，我就立志成為一名醫生。

And yet here I was, literally dying from a disease that I'd never even heard about during medical school called Castleman disease, where your immune system attacks and shuts down your vital organs for an unknown cause.

然而，我就在這裡，因為一種我在醫學院期間聞所未聞的疾病--卡斯特曼病--而奄奄一息，這種病會讓你的免疫系統攻擊並關閉你的重要器官，原因不明。

There were no approved treatments and no cures.

當時還沒有獲得準許的治療方法，也沒有治癒方法。

But in a last ditch effort to save me, my doctors gave me a combination of seven chemotherapies that weren't meant for my disease.

但為了挽救我的生命，醫生給我使用了七種化療藥物，但這些藥物並不適合我的病情。

Amazingly, they worked, I survived, I returned to medical school, and I got what I think might be the worst before and after picture of all time.

令人驚奇的是，它們起了作用，我活了下來，回到了醫學院，而且我得到了我認為可能是最糟糕的前後對比照片。

但後來我又一次又一次地復發了。

Five times in three years, I almost died from my disease.

三年裡，我有五次差點死於疾病。

I'll never forget during my third relapse when I was laying in my hospital bed with my girlfriend, Caitlin, and my family around me.

我永遠不會忘記，在我第三次舊病復發時，我躺在醫院的病床上，我的女朋友凱特琳和我的家人圍在我身邊。

Not just because I was dying, but because all the things that I would miss out on.

不只是因為我快死了，還因為我將錯過的所有事情。

The family that I'd never had with Caitlin, the patients that I'd never treat, the cures that I'd never discover in memory of my mom.

我和凱特琳從未擁有過的家庭，我從未治療過的病人，我從未發現過的治療方法，都是為了紀念我的母親。

See until then, I'd been waiting and hoping that some researcher somewhere would discover a treatment that could save my life.

在那之前，我一直在等待，希望某個地方的研究人員能發現一種能挽救我生命的治療方法。

But in that moment, I realized that hope alone is not enough.

但在那一刻，我意識到僅有希望是不夠的。

If I wanted any chance of survival, I would need to turn my hope into action to try to find a treatment to save my life.

如果我想獲得生存的機會，就必須將希望化為行動，努力尋找治療方法來挽救我的生命。

I didn't have 15 years and a billion dollars to develop a new drug from scratch.

我沒有 15 年的時間和 10 億美元來從零開始開發一種新藥。

The good news is, is that those seven chemotherapies that had saved my life, they weren't made for my disease.

好消息是，那七種曾挽救過我生命的化療藥物並不是為我的疾病而生的。

So I thought to myself, maybe there's another drug made for another disease that could also be repurposed for me.

於是我想，也許有另一種針對其他疾病的藥物也可以重新用於我。

You've probably all heard of Viagra before, right?

Well, you may know that Viagra was repurposed from heart disease to its well-known use.

你可能知道，"偉哥 "的用途從心臟病變成了眾所周知的用途。

But did you know it's also now utilized for a rare pediatric lung disease?

但你知道它現在也被用於治療一種罕見的小兒肺病嗎？

And thalidomide, which is known for causing horrible birth defects, is now utilized for leprosy and the cancer multiple myeloma.

沙利度胺以導致可怕的先天缺陷而聞名，現在卻被用於治療麻風病和多發性骨髓瘤。

Now repurposing works because though diseases like leprosy and myeloma may appear very different, they can actually share the same underlying problems or mechanisms in the body and can therefore be treated with the same drug.

現在，再利用療法之所以有效，是因為麻風病和骨髓瘤等疾病雖然看起來非常不同，但它們實際上可能存在相同的潛在問題或體內機制，是以可以用同一種藥物進行治療。

And amazingly, doctors can prescribe any FDA-approved drug for any disease where they believe the benefit outweighs the risk through something called off-label prescribing.

令人驚奇的是，醫生可以通過一種叫做 "標籤外處方 "的方式，為任何疾病開具任何經 FDA 準許的藥物，只要他們認為這種藥物的益處大於風險。

And off-label prescribing is actually very common.

In fact, one in four prescriptions written every single day in the U.S. is off-labeled.

事實上，在美國，每天開出的每四張處方中就有一張與標籤不符。

So I began to study my own blood in the lab to try to find a repurposed drug for me.

於是，我開始在實驗室裡研究自己的血液，試圖為自己找到一種可再利用的藥物。

I discovered that a communication line in my immune system was turned into overdrive and that a decades-old transplant drug might be able to turn it off.

我發現，我的免疫系統中的一條通信線路已經超速運轉，而一種已有幾十年歷史的移植藥物或許可以將其關閉。

It had never been used before for my disease, but I was out of options.

以前從未有人用它來治療我的病，但我別無選擇。

於是，我開始在自己身上進行試驗。

In the three years before I started serolimus, I nearly died five times.

在我開始使用 Serolimus 之前的三年裡，我有五次差點喪命。

But since starting it, I've been in remission for over 11 years.

但自從開始服用後，我的病情已經緩解了 11 年多。

During this remission, I married Caitlin, who's here with us today.

在病情緩解期間，我娶了凱特琳，她今天和我們在一起。

I wrote a book about my journey chasing my cure, which is being turned into a film.

我寫了一本書，講述我追尋治癒方法的歷程，這本書正在被拍成電影。

And I joined the faculty at the University of Pennsylvania to continue to chase cures for rare inflammatory diseases and cancers.

我還加入了賓夕法尼亞大學的教師隊伍，繼續追尋罕見炎症性疾病和癌症的治療方法。

And then in 2022, I co-founded Every Cure, a nonprofit organization that's on a mission to unlock the full potential of each and every drug to treat each and every disease that it possibly can.

2022 年，我與他人共同創立了 "每種療法"（Every Cure），這是一個非營利組織，其使命是充分挖掘每種藥物的潛力，儘可能地治療每種疾病。

Over these years, we've advanced 14 repurposed treatments for multiple diseases, saving thousands of lives, like Kyla, who began her freshman year of nursing school after we repurposed a bone marrow cancer drug to save her life, which is now being studied in clinical trials.

這些年來，我們已經推進了 14 種針對多種疾病的再利用療法，挽救了成千上萬人的生命，比如凱拉，在我們對一種骨髓癌藥物進行再利用以挽救她的生命後，她開始了護理學校大一的學習。

And Michael, who walked his son down the aisle on his wedding day after we repurposed a melanoma drug to treat his rare cancer, which is now being used all over the world for that rare cancer.

還有邁克爾，在我們重新利用一種黑色素瘤藥物治療他的罕見癌症後，他在兒子婚禮當天走上了紅地毯。

With every one of these discoveries, all I can think about is how many more life-saving drugs are sitting at our local pharmacies that could be life-saving for patients with diseases today.

有了這些發現，我所能想到的就是，在我們當地的藥店裡，還有多少救命的藥物可以挽救當今疾病患者的生命。

Because see, us humans, we've developed 4,000 drugs for about 4,000 diseases.

因為我們人類已經研發出了4000種藥物，可以治療大約4000種疾病。

But there are over 14,000 diseases that don't have a single approved therapy.

但是，有超過 14,000 種疾病還沒有一種獲得準許的療法。

That means that 1 in 10 of us and our kids will develop a rare disease without any approved treatments.

這意味著，在我們和我們的孩子中，每 10 人中就有 1 人將罹患罕見病，卻沒有任何獲得準許的治療方法。

And many more of us will develop diseases with limited treatment options.

我們中還有更多的人會患上治療手段有限的疾病。

We know that many of these FDA-approved drugs could treat many more of these diseases, and for less than 1% of the cost of new drug development, and way faster.

我們知道，美國食品及藥物管理局準許的這些藥物中，有許多可以治療更多的疾病，而且成本不到新藥研發成本的 1%，速度也更快。

那麼，我們為什麼不重新利用藥物呢？

Well, the short answer is that it's just not profitable to pursue a new use for an existing medicine, especially for a rare disease and the 80% of drugs that are already generic.

簡而言之，為現有藥物開發新用途是無利可圖的，尤其是對於罕見病和 80% 的非專利藥物而言。

It just costs too much to do the clinical trials, and companies can't expect to make back the costs in sales.

只是做臨床試驗的成本太高，公司不能指望從銷售中收回成本。

Instead, we focus on new drugs for profitable diseases, and no one, not the NIH, not the FDA, has taken responsibility for systematically unlocking these hidden cures.

相反，我們關注的是治療有利可圖的疾病的新藥，而沒有人，不是美國國立衛生研究院，也不是美國食品和藥物管理局，承擔起系統地開啟這些隱藏療法的責任。

Until now, we're utilizing artificial intelligence to scan across the world's knowledge of all 4,000 drugs, and all 18,000 diseases, to find the most promising opportunities to save and improve lives.

到目前為止，我們正在利用人工智能掃描世界上所有 4000 種藥物和 18000 種疾病的知識，以找到最有希望拯救和改善生命的機會。

You can think about it a bit like Netflix, which uses data on the actors, the directors, and the movies that you watch, and the interconnectedness between them, to predict which movies you might like to watch in the future.

你可以把它想象成 Netflix，它利用演員、導演和你觀看的電影的數據，以及它們之間的相互聯繫，來預測你未來可能會喜歡看哪些電影。

Well, we do something similar, but instead we use the world's knowledge of all approved drugs and all diseases and the connectedness between them to predict which drugs might be useful in new ways, much faster than any team of humans ever could.

我們也在做類似的事情，但我們利用世界上所有獲批藥物和所有疾病的知識，以及它們之間的聯繫，來預測哪些藥物可能以新的方式發揮作用，這比任何人類團隊都要快得多。

And then we use artificial intelligence to look across the millions of drug disease matches to identify the best opportunities to reduce suffering and have the greatest impact possible.

然後，我們利用人工智能在數以百萬計的藥物疾病匹配中尋找最佳機會，以減少痛苦併產生儘可能大的影響。

Then we take those specific programs forward.

然後，我們再推進這些具體計劃。

We study them in the laboratory, in clinical trials, and sometimes we go right to spotlighting them because the work has already been done to prove that they're effective.

我們在實驗室和臨床試驗中對它們進行研究，有時我們會直接對它們進行重點報道，因為已經有工作證明它們是有效的。

Now, when we first were dreaming about creating Every Cure, my co-founders, Grant Mitchell, Tracy Sikora, and I, we knew all of this was possible in theory, but we didn't really know how we were going to turn it into reality or how we were going to fund it.

格蘭特-米切爾（Grant Mitchell）、特蕾西-西科拉（Tracy Sikora）和我是我的聯合創始人，當我們最初夢想創建 "每一個治癒方案 "時，我們知道理論上這一切都是可能的，但我們並不知道如何將其變為現實，也不知道如何籌集資金。

But then I got an email actually from a member of the TED community telling me about something called the Audacious Project, which selects 10 nonprofits every year solving the world's biggest challenges.

但後來我收到一封電子郵件，居然是 TED 社區的一位成員發來的，他告訴我有個叫 "大膽計劃 "的項目，每年都會選出 10 個非營利組織來解決世界上最大的挑戰。

And just knowing that Audacious existed and knowing that this community here was supporting this kind of work, it gave us the courage to really take this leap and to start this organization.

知道 "大膽 "的存在，知道這裡的社區支持這樣的工作，這給了我們勇氣，讓我們真正邁出了這一步，創辦了這個組織。

We got started and then we applied for funding and we were so hopeful we would get it and then we weren't selected.

我們起步了，然後申請資助，我們滿懷希望能得到資助，但最終沒有被選中。

But then we applied again and just a few months ago we received this really transformative funding.

但後來我們再次提出申請，就在幾個月前，我們收到了這筆真正具有變革意義的資金。

Between this funding from the Audacious Project and also from a federal agency in the U.S. called ARPA-H, we are building an AI-powered engine to repurpose 15 to 25 treatments by 2030 and with additional funding to be able to repurpose dozens and even hundreds more treatments.

在 "大膽計劃 "和美國聯邦機構ARPA-H的資助下，我們正在建立一個人工智能引擎，以便在2030年前重新利用15到25種治療方法，並在獲得額外資助的情況下，能夠重新利用數十種甚至數百種治療方法。

Now, we've only been running our full pipeline for a few months, but we're already helping patients.

現在，我們的完整管道才運行了幾個月，但我們已經在幫助病人了。

The very first time we used a high-scoring drug from our algorithm was for a patient with Castleman disease, the disease that I have.

我們第一次使用算法中的高分藥物，就是為了治療我所患的 Castleman 病。

But unfortunately, the treatments we discovered for me weren't working for this patient.

但不幸的是，我們為我發現的治療方法對這位病人不起作用。

He was getting ready to say goodbye to his wife and his daughter because he was getting ready to be transferred to hospice care.

他正準備與妻子和女兒道別，因為他準備轉入臨終關懷。

We recommended this number one drug from our platform, and amazingly, it saved his life.

我們從平臺上推薦了這種頭號藥物，令人驚訝的是，它挽救了他的生命。

He's been in remission now for over two years.

Now, this is an example where we discovered a repurposed treatment, but sometimes we actually uncover matches that already exist.

現在，這是一個我們發現了再利用療法的例子，但有時我們實際上發現了已經存在的匹配療法。

For example, one day I was reviewing through the results of our platform and I came across this cheap vitamin derivative where there was data to suggest that it could help to improve speech in a subgroup of patients who have antibodies against the folate receptor, so therefore they don't get folate into their brain.

例如，有一天我在查看我們平臺的成果時，發現了一種廉價的維生素衍生物，有數據表明，這種衍生物有助於改善對葉酸受體有抗體的亞組患者的語言能力，是以他們的大腦無法獲得葉酸。

I was so amazed to learn about the work being done by Richard Frey.

當我瞭解到理查德-弗雷所做的工作時，我感到非常驚訝。

He had done the first of three randomized controlled trials that showed a benefit for this medicine in this subgroup of patients.

他完成了三項隨機對照試驗中的第一項，結果表明這種藥物對這一亞組患者有益。

And I learned about Mason, photographed here, who was nonverbal for three years.

我還了解到照片中的梅森，他三年來一直不說話。

And within three days of starting Lucavorin, began to say his first words.

在開始使用盧卡沃林的三天內，他開始說第一句話。

And then Ryan, photographed here on the right, was basically nonverbal for five years and had never shared a complete thought or feeling with his parents and was told by doctors that he probably would never share a feeling with them.

然後，右側照片中的瑞安五年來基本上不說話，從未與父母分享過完整的想法或感受，醫生告訴他，他可能永遠不會與父母分享感受。

Within two weeks of starting Lucavorin, he turned to his dad when he was leaving for work and said, Daddy, I love you.

在開始使用盧卡沃林的兩週內，他在爸爸上班時轉過身對爸爸說："爸爸，我愛你。

What's also incredible is that there's a blood test that can help to identify kids like Mason and Ryan that is available to help to find these patients, and it's still barely being utilized.

同樣令人難以置信的是，有一種血液檢測方法可以幫助識別像梅森和萊恩這樣的孩子，這種方法可以幫助找到這些病人，但目前還很少有人使用。

This is why we started EveryCure, to unlock these hidden treatments and make sure they reach every patient they can possibly benefit.

這就是我們創辦 EveryCure 的原因，目的是揭開這些隱藏療法的神祕面紗，確保它們惠及每一位可能受益的患者。

Like we did for Joseph, who was dying from Poehm's syndrome, which is a rare cancer, and on his 30th birthday was saying goodbye to his girlfriend, Tara, because his doctor had tried everything that he thought was possible.

就像我們為約瑟夫所做的那樣，他患上了一種罕見的癌症--波姆氏綜合徵，生命垂危，在他 30 歲生日那天，他要和女友塔拉道別，因為他的醫生已經嘗試了所有他認為可能的方法。

We recommended three drugs that are commonly used for multiple myeloma, which is similar to Poehm's syndrome, in a last-ditch effort to save him.

我們推薦了三種常用於治療多發性骨髓瘤（與波姆綜合徵類似）的藥物，為挽救他的生命做最後的努力。

令人驚奇的是，它們竟然奏效了。

Instead of planning Joseph's funeral service, Joseph and Tara are planning their wedding day, and Joseph's here with us today from Seattle.

約瑟夫和塔拉沒有籌辦約瑟夫的葬禮，而是在籌辦他們的婚禮，約瑟夫今天從西雅圖來到了這裡。

I'm so glad you're here, Joseph, in so many ways.

我很高興你在這裡，約瑟夫，在很多方面。

How many of us have sat with someone we loved, like Caitlin did, and like Tara did, and like Mason's parents did, and heard the words, we've tried everything, there's nothing more we can do?

我們當中有多少人像凱特琳、塔拉和梅森的父母一樣，曾與自己所愛的人坐在一起，聽到這樣的話：我們什麼都試過了，我們無能為力了。

如果我們還沒有嘗試所有方法呢？

What if there's a solution out there for them and thousands, maybe even millions more with their disease?

如果他們和成千上萬甚至數百萬的患者都能找到解決方法呢？

And what if we all came together to find these solutions?

如果我們齊心協力找到這些解決方案呢？

Because we can't do it alone, and we need your help.

因為我們無法獨自完成，我們需要您的幫助。

Please join us to unlock every cure so that no patient suffers when there's a life-saving cure sitting on the pharmacy shelf, and instead of hearing we've tried everything, they can hear we have something.

請加入我們的行列，開啟每一種治療方法，這樣，當挽救生命的治療方法擺在藥店的貨架上時，病人就不會再受苦，他們也不會再聽到我們已經嘗試了所有方法，而是會聽到我們有辦法了。