(单词翻译:单击)
For my husband, it was love at first sight. Here's what happened.
对我丈夫而言,他是一见钟情。当时发生了这么件事。
Years ago, Rudy, who I had strictly put in the friend zone at the time,
几年前,鲁迪,当时一直被我严格定义为朋友关系的这个人,
came over to my house and met my dad, a pharmaceutical scientist who had just retired after bringing a drug to market.
来到我家,遇见了我父亲,一位将一种新药推向市场后刚退休的药物研发科学家。
My dad said, "Ah, you probably wouldn't have heard of it. It's for IPF, idiopathic pulmonary fibrosis."
我父亲说:“啊,你可能从没听过这种病。这药是针对IPF的,特发性肺纤维化。”
Rudy paused for a long time, and then he said, "That's the disease that took my father's life 15 years ago."
鲁迪沉默不语了一阵,之后说道,“这是在15年前夺走我父亲生命的疾病。”
Rudy says that this is the moment he fell in love. With my father.
鲁迪说那是他陷入爱情的瞬间--爱上我父亲的瞬间。
Even though it was too late for my dad to save his, he felt that destiny had delivered us this full-circle moment.
尽管我父亲的发明没来得及拯救他父亲的生命,但他觉得命运已经给了我们一个完整的瞬间。
In my family, we have a special love for my father's inventions.
在我家,我们对父亲的发明都情有独钟。
And in particular, we have a reverence for his patents.
尤其对他申请到的专利们,有着崇高的敬意。
We have framed patents on the wall in our house.
我们家有面墙上挂着都是裱好的专利证书。
And there's a recognition in our family that everything I've been able to do -- college, law school, health justice work
而且在我家,我们有一个共识:至今我能做到的一切--大学、法学院和健康公平相关的工作,
all of it is because America enabled my father to fulfill his potential as an inventor.
所有的这些都是因为美国使我父亲得以充分发挥作为一个发明家的潜力。
Last year, I met the director of the US Patent Office for the first time, and I sent my family a selfie from that office in Virginia.
去年,我第一次见到了美国专利局局长,从弗吉尼亚的那个办公室里,我给家人发了一张自拍。
I got so many emojis back, you would have thought I had met Beyoncé.
我收到了好多表情符号的回复,会让你误以为我遇到了碧昂斯。
But truth be told, I was actually there to talk about a problem
然而真相是,我之所以会在那里实际上是为了探讨一个问题,
how our outdated patent system is fueling the high cost of medicines and costing lives.
我们过时的专利制度是如何以生命为代价助长了高昂的药物成本。
Today, over two billion people live without access to medicines.
如今,超过20亿人没有渠道获得所需药物。
And against this global crisis, drug prices are skyrocketing, including in wealthier countries.
在这场全球危机中,包括相对富裕的国家在内,药品价格飙升。
Thirty-four million Americans have lost a family member or a friend in the last five years,
在过去5年,3400万美国人因此失去了家人和朋友,
not because the treatment didn't exist, but because they couldn't afford it.
不是因为无药可救,而是因为他们负担不起。
Rising drug costs are pushing families into homelessness,
上升的药物成本正把无数家庭逼向无家可归,
seniors into bankruptcy and parents to crowdfunding treatment for their critically ill children.
老人们几近破产,还有家长们为身患重病的孩子们众筹治疗。
There are many reasons for this crisis, but one is the outdated patent system that America tries to export to the rest of the world.
造成这场危机的因素有很多,但其中一个因素,是我们过时的专利制度,这个美国尝试出口到世界各个角落的制度。
The original intention behind the patent system was to motivate people to invent by rewarding them with a time-limited monopoly.
这一专利制度的本意是通过给予一个限时垄断的机会来激励人们发明创造。
But today, that intention has been distorted beyond recognition.
但如今,那个本意已被扭曲得面目全非。
Corporations have teams of lawyers and lobbyists whose sole job is to extend patent protection as long as possible.
企业们有整个律师和说客团队,他们唯一的工作就是尽可能延长专利保护时限。
And they've kept the patent office busy. It took 155 years for the US Patent Office to issue its first five million patents.
他们让专利局忙得团团转。美国专利局花了155年的时间来发行其首个500万美元的专利。
It took just 27 years for it to issue the next five million.
它又花了27年的时间来发行下一个500万美元的专利。
We haven't gotten drastically more inventive. Corporations have gotten drastically better at gaming the system.
我们还尚未变得更具发明力,但那些企业们却已开始玩弄这个体系。
Drug patents have exploded -- between 2006 and 2016, they doubled.
药品专利激增--在2006至2016年间,专利数量翻倍。
But consider this: The vast majority of medicines associated with new drug patents are not new.
但思考一下:绝大部分获得新药专利的药物并不新。
Nearly eight out of 10 are for existing ones, like insulin or aspirin.
几乎10中有8的药品是现有药物,例如胰岛素和阿斯匹林。
My organization, a team of lawyers and scientists, recently conducted an investigation into the 12 best-selling drugs in America.
我的组织,一个由律师和科学家构成的团队,近期针对美国最畅销的12种药物展开了一个调查。
We found that, on average, there are 125 patents filed on each medicine.
我们发现,每一种药物平均有125项专利存档。
Often for things we've known how to do for decades, like putting two pills into one.
几十年来,我们一直知道如何做的事情,例如把两个药片混合成一个。
The higher a patent wall a company builds, the longer they hold on to their monopoly.
一个企业的专利墙筑造得越高,其垄断地位便可维持得更久。
And with no one to compete with, they can set prices at whim.
何况没有竞争对手,他们可以拍着脑袋随便定价。
And because these are medicines and not designer watches, we have no choice but to pay.
外加产品是药品,而非名牌手表,我们别无选择,只能掏钱。
The patent wall is a strategy to block competition.
专利墙是阻碍竞争对手进入市场的一个策略。
Not for the 14 years maximum that America's founders originally envisioned,
不是美国专利制度创始人当初设想的最多14年,
or the 20 years allowed by law today, but for 40 years or more.
也不是现在法律允许的20年,而是40年,甚至更多。
Meanwhile, prices on these drugs have continued to increase -- 68 percent since 2012.
同时,那些药物的价格还在继续增长--自2012,68%的增速。
That's seven times the rate of inflation. And people are struggling or even dying, because they can't afford the meds.
这是货币通货膨胀率的7倍速。人们在挣扎,甚至奄奄一息,因为他们买不起药。
Now I want to be really clear about something. This isn't about making the pharmaceutical industry the bad guy.
现在,我想要澄清一下。这并不是意味着把制药行业看作是坏人。
What I'm talking about today is whether the system we created to promote progress is actually working as intended.
我现在所说的是我们为进步而创立的制度是否真的在起这样的作用。
Sure, the pharmaceutical companies are gaming the system, but they're gaming it because they can.
当然,制药企业在玩弄这个制度,但他们玩弄,是因为他们可以。
Because we have failed to adapt this system to meet today's realities.
是因为我们未能让这个制度适应当代的现实环境。
The government is handing out one of the most prized rewards in business
政府现在正在发放最具价值的一个商业奖励,
the opportunity to create a product that is protected from competition -- and asking for less and less in return on our behalf.
创造一个能免于竞争的产品的机会,并且对我们要求的回报越来越少。
Imagine awarding 100 Pulitzer Prizes to one author for the same book.
想象为同一本书的一位作者颁发100项普利策奖。
It doesn't have to be this way. We can create a modern patent system to meet the needs of a 21st-century society.
这并非是唯一的出路。我们可以建立一个现代专利制度来满足21世纪的社会需求。
And to do that, we need to reimagine the patent system to serve the public, not just corporations.
为了做这件事,我们需要重新设想专利系统服务公众使命,而非仅仅让企业获利。
So how do we do it? Five reforms.
所以,我们应该怎么做?五个改革。
First, we need to stop handing out so many patents.
首先,我们需要减少专利发放数量。
Back under the Kennedy administration, in an effort to curb rising drug costs, a congressman from Tennessee proposed an idea.
回顾肯尼迪政府,为制约药品价格飞涨,田纳西州的一名国会议员提出了一个想法。
He said, "If you want to tweak a drug, and you want to get another patent on it,
他说,“如果你想要微调药品成分,从而给药品再另上一个专利,
the modified version has to be significantly better, therapeutically, for patients."
改良版本的药品在病人身上必须呈现显著增强的治疗效果。”
Because of intense lobbying, this idea never saw the light of day.
当时因为激烈的游说,这个想法从未能被通过。
But a reimagined patent system would resurrect and evolve this simple, yet elegant proposition.
但是对专利制度的重构能够让曾经那个简单却优雅的提议重见天日并发展演变。
That to get a patent, you have to invent something substantially better than what's already out there.
为了获得一个专利,你必须发明和现有解决方案相比实质上更好的一些东西。
This shouldn't be controversial. As a society, we reserve the big rewards for the big ideas.
这不应该成为一项争议。作为一个社会,我们为大胆的想法保留丰厚的奖励。
We don't give Michelin stars to chefs who just tweak a recipe -- we give them to chefs who change how we think about food.
我们不会给只是微调食谱的厨师们颁发米其林星级--而是给那些改变我们对食物的思考的厨师们。
And yet, we hand out patents worth billions of dollars for minor changes. It's time to raise the bar.
然而我们却因一个微乎其微的改变,发放价值数十亿美元的专利。是时候提高门槛了。
Second, we need to change the financial incentives of the Patent Office.
第二,我们需要改变专利局的财政激励。
Right now, the revenue of the Patent Office is directly linked to the number of patents that it grants.
现在,专利局的收益是与授予的专利数量直接相关的。
That's like private prisons getting paid more to hold more people
就好比私营监狱收更多钱,来关押更多人,
it naturally leads to more incarceration, not less. The same is true for patents.
自然而然导致更多监禁,而非更少。对于专利而言,同样如此。
Third, we need more public participation. Right now, the patent system is like a black box.
第三,我们需要更多的公众参与。现在的专利制度就像一个黑匣子。
It's a two-way conversation between the patent office and industry. You and I aren't invited to that party.
这是专利局和行业之间的一个双向沟通。你我从未被邀请参与。
But imagine if instead, the Patent Office became a dynamic center for citizen learning and ingenuity,
但设想,如果专利局变身为一个市民学习和创造力的活跃中心,
staffed not just by technical experts and bureaucrats, but also by great public-health storytellers with a passion for science.
其雇员不局限于技术专家与官员,也将把对科学充满热情的、很棒的公共卫生故事讲述者纳入其中。
Regular citizens could get accessible information about complex technologies like artificial intelligence or gene editing,
常规市民因此能接触到复杂的技术--例如人工智能,或基因编辑,
enabling us to participate in the policy conversations that directly impact our health and lives.
从而让我们能够加入到直接影响我们健康和生活的政策对话中。
Fourth, we need to get the right to go to court. Right now in America, after a patent is granted, the public has no legal standing.
第四,我们需要有上诉的权利。当前在美国,专利被授予后,公众没有法律地位。
Only those with a commercial interest, usually other drug companies, have that right.
只有那些有着商业利益的,通常为另一个药企,才有有上诉权利。
But I've witnessed firsthand how lives can be saved when everyday citizens have the right to go to court.
但我亲眼见证过当每位市民有权利上诉时,生命能如何被挽救。
Back in 2006 in India, my organization worked with patient advocates to challenge, legally, unjust HIV drug patents,
在2006年,印度,我的组织和病患拥护者们携手在法律上挑战不公平的艾滋病(HIV)药物专利,
at a time when so many people were dying, because medicines were priced out of reach.
因为药品标价不合乎常理,曾一度让大量患者垂死挣扎。
We were able to bring down the prices of medicines by up to 87 percent.
我们通过不懈努力最终使得药品价格下降87%。
On just three drugs, we were able to save health systems half a billion dollars.
只是3种药物,我们便能为整个医疗卫生体系节省5亿美元。
Now, cases like these can save millions of lives and billions of dollars.
诸如此类的案例能够拯救上百万的生命和数十亿美元的开销。
Imagine if Americans had the right to go to court, too.
想想一下,倘若美国的普通市民同样拥有上诉权利会如何。
And lastly, we need stronger oversight.
最后一点,我们需要更强有力的监管。
We need an independent unit that can serve as a public advocate,
我们需要一个能够以公共倡导者身份服务的独立部门,
regularly monitoring the activities of the Patent Office and reporting to Congress.
对专利局的活动进行定期监察并向国会汇报。
If a unit like this had existed,
如果这样的一个部门曾已存在,
it would have caught, for example, the Silicon Valley company Theranos
它本能早早地揪出例如一家名为Theranos的硅谷公司,
before it got so many patents for blood testing and landed an evaluation of nine billion dollars,
在这家公司为其血液检测技术申请如此之多专利,公司市场估值达90亿美元前,
when in reality, there was no invention there at all.
然而事实是这其中没有丝毫的发明创造。
This kind of accountability is going to become increasingly urgent.
这样的问责制度将变得越来越迫切。
In the age of 23andMe, important questions are being asked about
在我23岁的时候,很多人都在问我很多重要的问题:
whether companies can patent and sell our genetic information and our patient data.
企业是否可以申请专利并且贩卖我们的遗传信息和患者数据。
We need to be part of those conversations before it's too late.
在一切为时已晚之前,我们需要加入这场沟通。
Our information is being used to create the new therapies.
为开发新型疗法,我们的个人信息正在被使用。
And when that moment of diagnosis comes for me and my family, or for you and yours,
当负面诊断结果降临的瞬间,于我和我的家庭,或是你和你的家庭,
are we going to have to crowdfund to save the lives of those we love?
难不成我们别无他法,只能众筹来医治我们所爱之人的生命吗?
That's not the world I want to live in. It's not the world I want for my two-year-old son.
这不是我想要居住的世界。这不是我想要我2岁儿子生活的世界。
My dad is growing older now, and he is still as quietly brilliant and morally directed as ever.
我的父亲正在慢慢变老,但他仍旧如往常一样低调、有才华,而且注重道德。
Sometimes people ask us whether things get heated between us: the patent-holding scientist and his patent-reforming lawyer daughter.
有时人们问我们我俩是否经常因不同身份而针锋相对:一个持有专利的科学家父亲,和一个支持专利改革的律师女儿。
It's such a profound misunderstanding of what's at stake,
对于这个问题,存在着一个很深的误解。
because this is not about scientists versus activists, or invention versus protection.
因为这与科学家vs.活动家无关,与发明vs.保护无关。
This is about people, our quest to invent and our right to live.
这关乎于人,我们对发明的追求和生存的权利。
My dad and I understand that our ingenuity and our dignity go hand in hand. We are on the same side.
我和我父亲都深知我们的创造力和尊严是相辅相成的。我们是并肩作战的。
It is time to reimagine a patent system that reflects that knowing. Thank you.
现在是时候考虑重构一个专利制度来体现我们的深刻理解了。谢谢。