What shape are your cells?
Squishy cylinders?
Jagged zig-zags?
You probably don’t think much about the bodies of these building blocks, but at the microscopic level, small changes can have huge consequences.
And while some adaptations change these shapes for the better, others can spark a cascade of debilitating complications.
This is the story of sickle-cell disease.
Sickle-cell disease affects the red blood cells, which transport oxygen from the lungs to all the tissues in the body.
To perform this vital task, red blood cells are filled with hemoglobin proteins to carry oxygen molecules.
These proteins float independently inside the red blood cell’s pliable, doughnut-like shape, keeping the cells flexible enough to accommodate even the tiniest of blood vessels.
But in sickle cell disease, a single genetic mutation alters the structure of hemoglobin.
After releasing oxygen to tissues, these mutated proteins lock together into rigid rows.
Rods of hemoglobin cause the cell to deform into a long, pointed sickle.
These red blood cells are harder and stickier, and no longer flow smoothly through blood vessels.
Sickled cells snag and pile up– sometimes blocking the vessel completely.
This keeps oxygen from reaching a variety of cells, causing the wide range of symptoms experienced by people with sickle-cell disease.
Starting when they’re less than a year old, patients suffer from repeated episodes of stabbing pain in oxygen-starved tissues.
The location of the clogged vessel determines the specific symptoms experienced.
A blockage in the spleen, part of the immune system, puts patients at risk for dangerous infections.
A pileup in the lungs can produce fevers and difficulty breathing.
A clog near the eye can cause vision problems and retinal detachment.
And if the obstructed vessels supply the brain the patient could even suffer a stroke.
Worse still, sickled red blood cells also don’t survive very long— just 10 or 20 days, versus a healthy cell’s 4 months.
This short lifespan means that patients live with a constantly depleted supply of red blood cells; a condition called sickle-cell anemia.
Perhaps what’s most surprising about this malignant mutation is that it originally evolved as a beneficial adaptation.
Researchers have been able to trace the origins of the sickle cell mutation to regions historically ravaged by a tropical disease called malaria.
Spread by a parasite found in local mosquitoes, malaria uses red blood cells as incubators to spread quickly and lethally through the bloodstream.
However, the same structural changes that turn red blood cells into roadblocks also make them more resistant to malaria.
And if a child inherits a copy of the mutation from only one parent, there will be just enough abnormal hemoglobin to make life difficult for the malaria parasite, while most of their red blood cells retain their normal shape and function.
In regions rife with this parasite, sickle cell mutation offered a serious evolutionary advantage.
But as the adaptation flourished, it became clear that inheriting the mutation from both parents resulted in sickle-cell anemia.
Today, most people with sickle-cell disease can trace their ancestry to a country where malaria is endemic.
And this mutation still plays a key role in Africa, where more than 90% of malaria infections occur worldwide.
Fortunately, as this “adaptation” thrives, our treatment for sickle cell continues to improve.
For years, hydroxyurea was the only medication available to reduce the amount of sickling, blunting symptoms and increasing life expectancy.
Bone marrow transplantations offer a curative measure, but these procedures are complicated and often inaccessible.
But promising new medications are intervening in novel ways, like keeping oxygen bonded to hemoglobin to prevent sickling, or reducing the stickiness of sickled cells.
And the ability to edit DNA has raised the possibility of enabling stem cells to produce normal hemoglobin.
As these tools become available in the areas most affected by malaria and sickle cell disease, we can improve the quality of life for more patients with this adverse adaptation.
This syringe contains a radioactive form of glucose known as FDG.
The doctor will soon inject its contents into her patient’s arm, whom she’s testing for cancer using a PET scanner.
The FDG will quickly circulate through his body.
If he has a tumor, cancer cells within it will take up a significant portion of the FDG, which will act as a beacon for the scanner.
PET tracers such as FDG are among the most remarkable tools in medical diagnostics, and their life begins in a particle accelerator, just hours earlier.
The particle accelerator in question is called a cyclotron, and it’s often housed in a bunker within hospitals.
It uses electromagnetic fields to propel charged particles like protons faster and faster along a spiraling path.
When the protons reach their maximum speed, they shoot out onto a target that contains a few milliliters of a type of water with a heavy form of oxygen called oxygen-18.
When a proton slams into one of these heavier oxygen atoms, it kicks out another subatomic particle called a neutron.
This impact turns oxygen-18 into fluorine-18, a radioactive isotope that can be detected on a PET scan.
In a little under two hours, about half the fluorine will be gone due to radioactive decay, so the clock is ticking to get the scan done.
So how can fluorine-18 be used to detect diseases?
Radiochemists at the hospital can use a series of chemical reactions to attach the radioactive fluorine to different molecules, creating radiotracers.
The identity of the tracer depends on what doctors want to observe.
FDG is a common one because the rate at which cells consume glucose can signal the presence of cancer; the location of an infection; or the slowing brain function of dementia.
The FDG is now ready for the patient’s scan.
When a radiolabeled tracer enters the body, it travels through the circulatory system and gets taken up by its target— whether that's a protein in the brain, cancer cells, or otherwise.
Within a few minutes, a significant amount of the tracer has found its way to the target area and the rest has cleared from circulation.
Now the doctors can see their target using a PET, or positron emission tomography, scanner.
The radiation that the tracer emits is what makes this possible.
The isotopes used in PET decay by positron emission.
Positrons are essentially electrons with positive charge.
When emitted, a positron collides with an electron from another molecule in its surroundings.
This causes a tiny nuclear reaction in which the mass of the two particles is converted into two high-energy photons, similar to X-rays, that shoot out in opposite directions.
These photons will then impact an array of paired radiation detectors in the scanner walls.
The software in the scanner uses those detectors to estimate where inside the body the collision occurred and create a 3D map of the tracer’s distribution.
PET scans can detect the spread of cancer before it can be spotted with other types of imaging.
They’re also revolutionizing the diagnosis of Alzheimer’s disease by allowing doctors to see amyloid, the telltale protein buildup that otherwise couldn’t be confirmed without an autopsy.
Meanwhile, researchers are actively working to develop new tracers and expand the possibilities of what PET scans can be used for.
But with all this talk of radiation and nuclear reactions inside the body, are these scans safe?
Even though no amount of ionizing radiation is completely safe, the amount of radiation the body receives during a PET scan is actually quite low.
One scan is comparable to what you’re exposed to over two or three years from natural radioactive sources, like radon gas; or the amount a pilot would rack up from cosmic radiation after 20 to 30 transatlantic flights.
Most patients feel that those risks are acceptable for the chance to diagnose and treat their illnesses.
For my husband, it was love at first sight.
(Laughter) Here's what happened.
Years ago, Rudy, who I had strictly put in the friend zone at the time, came over to my house and met my dad, a pharmaceutical scientist who had just retired after bringing a drug to market.
My dad said, "Ah, you probably wouldn't have heard of it.
It's for IPF, idiopathic pulmonary fibrosis."
Rudy paused for a long time, and then he said, "That's the disease that took my father's life 15 years ago."
Rudy says that this is the moment he fell in love.
(Laughter) With my father.
(Laughter) Even though it was too late for my dad to save his, he felt that destiny had delivered us this full-circle moment.
In my family, we have a special love for my father's inventions.
And in particular, we have a reverence for his patents.
We have framed patents on the wall in our house.
And there's a recognition in our family that everything I've been able to do -- college, law school, health justice work -- all of it is because America enabled my father to fulfill his potential as an inventor.
(Applause) 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.
(Laughter) I got so many emojis back, you would have thought I had met Beyoncé.
(Laughter) But truth be told, I was actually there to talk about a problem -- how our outdated patent system is fueling the high cost of medicines and costing lives.
Today, over two billion people live without access to medicines.
And against this global crisis, drug prices are skyrocketing, including in wealthier countries.
Thirty-four million Americans have lost a family member or a friend in the last five years, not because the treatment didn't exist, but because they couldn't afford it.
Rising drug costs are pushing families into homelessness, seniors into bankruptcy and parents to crowdfunding treatment for their critically ill children.
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.
The original intention behind the patent system was to motivate people to invent by rewarding them with a time-limited monopoly.
But today, that intention has been distorted beyond recognition.
Corporations have teams of lawyers and lobbyists whose sole job is to extend patent protection as long as possible.
And they've kept the patent office busy.
It took 155 years for the US Patent Office to issue its first five million patents.
It took just 27 years for it to issue the next five million.
We haven't gotten drastically more inventive.
Corporations have gotten drastically better at gaming the system.
Drug patents have exploded -- between 2006 and 2016, they doubled.
But consider this: The vast majority of medicines associated with new drug patents are not new.
Nearly eight out of 10 are for existing ones, like insulin or aspirin.
My organization, a team of lawyers and scientists, recently conducted an investigation into the 12 best-selling drugs in America.
We found that, on average, there are 125 patents filed on each medicine.
Often for things we've known how to do for decades, like putting two pills into one.
The higher a patent wall a company builds, the longer they hold on to their monopoly.
And with no one to compete with, they can set scott66@example.net.
And because these are medicines and not designer watches, we have no choice but to pay.
The patent wall is a strategy to block competition.
Not for the 14 years maximum that America's founders originally envisioned, or the 20 years allowed by law today, but for 40 years or more.
Meanwhile, prices on these drugs have continued to increase -- 68 percent since 2012.
That's seven times the rate of inflation.
And people are struggling or even dying, because they can't afford the meds.
Now I want to be really clear about something.
This isn't about making the pharmaceutical industry the bad guy.
What I'm talking about today is whether the system we created to promote progress is actually working as intended.
Sure, the pharmaceutical companies are gaming the system, but they're gaming it because they can.
Because we have failed to adapt this system to meet today's realities.
The government is handing out one of the most prized rewards in business -- the opportunity to create a product that is protected from competition -- and asking for less and less in return on our behalf.
Imagine awarding 100 Pulitzer Prizes to one author for the same book.
(Murmurs) It doesn't have to be this way.
We can create a modern patent system to meet the needs of a 21st-century society.
And to do that, we need to reimagine the patent system to serve the public, not just corporations.
So how do we do it?
Five reforms.
First, we need to stop handing out so many patents.
Back under the Kennedy administration, in an effort to curb rising drug costs, a congressman from Tennessee proposed an idea.
He said, "If you want to tweak a drug, and you want to get another patent on it, the modified version has to be significantly better, therapeutically, for patients."
Because of intense lobbying, this idea never saw the light of day.
But a reimagined patent system would resurrect and evolve this simple, yet elegant proposition.
That to get a patent, you have to invent something substantially better than what's already out there.
This shouldn't be controversial.
As a society, we reserve the big rewards for the big ideas.
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.
And yet, we hand out patents worth billions of dollars for minor changes.
It's time to raise the bar.
Second, we need to change the financial incentives of the Patent Office.
Right now, the revenue of the Patent Office is directly linked to the number of patents that it grants.
That's like private prisons getting paid more to hold more people -- it naturally leads to more incarceration, not less.
The same is true for patents.
Third, we need more public participation.
Right now, the patent system is like a black box.
It's a two-way conversation between the patent office and industry.
You and I aren't invited to that party.
But imagine if instead, the Patent Office became a dynamic center for citizen learning and ingenuity, staffed not just by technical experts and bureaucrats, but also by great public-health storytellers with a passion for science.
Regular citizens could get accessible information about complex technologies like artificial intelligence or gene editing, enabling us to participate in the policy conversations that directly impact our health and lives.
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.
Only those with a commercial interest, usually other drug companies, have that right.
But I've witnessed firsthand how lives can be saved when everyday citizens have the right to go to court.
Back in 2006 in India, my organization worked with patient advocates to challenge, legally, unjust HIV drug patents, at a time when so many people were dying, because medicines were priced out of reach.
We were able to bring down the prices of medicines by up to 87 percent.
(Applause) On just three drugs, we were able to save health systems half a billion dollars.
Now, cases like these can save millions of lives and billions of dollars.
Imagine if Americans had the right to go to court, too.
And lastly, we need stronger oversight.
We need an independent unit that can serve as a public advocate, regularly monitoring the activities of the Patent Office and reporting to Congress.
If a unit like this had existed, it would have caught, for example, the Silicon Valley company Theranos before it got so many patents for blood testing and landed an evaluation of nine billion dollars, when in reality, there was no invention scott66@example.net.
This kind of accountability is going to become increasingly urgent.
In the age of 23andMe, important questions are being asked about whether companies can patent and sell our genetic information and our patient data.
We need to be part of those conversations before it's too late.
Our information is being used to create the new therapies.
And when that moment of diagnosis comes for me and my family, or for you and yours, are we going to have to crowdfund to save the lives of those we love?
That's not the world I want to live in.
It's not the world I want for my two-year-old son.
My dad is growing older now, and he is still as quietly brilliant and morally directed as ever.
Sometimes people ask us whether things get heated between us: the patent-holding scientist and his patent-reforming lawyer daughter.
It's such a profound misunderstanding of what's at stake, because this is not about scientists versus activists, or invention versus protection.
This is about people, our quest to invent and our right to live.
My dad and I understand that our ingenuity and our dignity go hand in hand.
We are on the same side.
It is time to reimagine a patent system that reflects that knowing.
Thank you.
(Applause)