The Paradox of Alzheimers: How Washington Turns Abundance into Scarcity—And How Silicon Valley Can Fix That
Every news item about human health has two dimensions: a personal dimension and a societal dimension. For example, take the case of Gerda Saunders, a University of Utah academic who is slipping into dementia. Her own story is a sad tale, that’s for sure, but the larger medical issues it raises are a reminder: the bell tolls for all of us.
Yet as we shall see, none of this need be happening. Never before in the history of human civilization have we been so well equipped to solve the medical problems we face; we just aren’t doing it, at least not yet.
Meanwhile, if help comes, it will probably come too late for Saunders. At age 61, she was diagnosed with vascular dementia – the second leading cause of dementia after Alzheimer’s. In the current issue of Georgia Review, reprinted in Slate, Saunders documents her own cognitive decline in her essay “My Dementia: Telling who I am before I forget.” In it, she includes excerpts from her “Dementia Field Notes,” a journal cataloguing her “descent into the post-cerebral realm for which” she’s headed. Saunders provides “a perspective of someone who actually has [dementia] – albeit its early stages.” She is thus adding a voice “not found in other stories about dementia,” the voice of someone who herself has the disease.
That is the story of Gerda Saunders. Now here’s the story of the rest of us.
Over five million Americans are living with Alzheimer’s disease (AD); two thirds of them are women. According to the Alzheimer’s Association, women over the age of 60 have a one in six chance of being diagnosed with AD and are twice as likely to develop AD than breast cancer. In 2014, the direct costs of AD on America will total an estimated $214 billion. In 2013, over 15 million family and friends provided over 17 billion hours of unpaid care to those suffering from dementia – valued at over $220 billion. In other words, the total cost of AD approaches half a trillion dollars.
With that kind of money at stake, one would think that national policymakers would be paying more attention. But they're not, as we shall see.
Saunders’s story is a personal tragedy and a societal calamity. A woman loses her mind at a relatively young age, and her family – and the rest of us – pay for her care.
In other words, there’s a larger problem here to be solved. We have solved other health crises in the past, from the Black Death to polio; now let’s solve this problem, too.
So we must add that third dimension – the civilizational, problem-solving dimension. As the historian Arnold Toynbee wrote in his monumental A Study of History, every civilization faces a crisis of what he called “challenge and response.” That is, can the civilization meet the challenge and respond adequately? That is the question. The fate of nations rests on the answer.
So in our time, America faces many challenges, and AD is one of them. There must be a better way to utilize the talents of our people than letting them prematurely drift off into costly senescence and dependence, and there must also be better uses for the $500 billion annually that we spend on AD care, a dollar total that is rising into the trillions in the years to come.
So far, the quality of our response has not been adequate; pathetic is the right word. What do we mean? We mean this: If this sort of medical and economic disaster is happening right before our eyes, something has really gone wrong with our politics. Leaders in the public and private sectors should be scrambling to do something about this crisis, but they are not.
It's all the more infuriating that this is happening because we are in this paradoxical time of abundance of capital and technology which could be used to create an AD cure. To date, there is no cure, just theories as to what’s happening and on how to slow the progression. Theory. Medical hypothesis. That’s all we have. Not good enough!
The time has come for action. And paradoxically, we have never had more capacity to get things done, if we want to use it.
The government might be in deficit, but the country is rich, and the world is richer. The stock market is at 16000+; according to the Federal Reserve, the household wealth of this country is $80.7 trillion.
And since AD is a worldwide problem, it’s reasonable that the world has a stake in solving that problem. The 2014 world economic outlook projections show that the economic output of the world is an estimated $73.8 trillion. So we just need some imagination, and some leadership, aimed at figuring out how to channel capital, mostly private capital, into the pharma market to find a cure.
If capital is one factor in our problem-solving equation, computing power is a second factor.
Let’s add the abundance of computing power – Moore's Law is marching on. Over a decade ago, it cost $3 billion to sequence one human genome. Today, it’s around $1,000.
Quantum computing – the future of data processing – promises to perform calculations 3,600 times faster than our current supercomputers. Yes, quantum computing is still in the future, but then, that’s what technology is all about – the future. The World Economic Forum reports that 2.5 quintillion bytes of "big data" are generated every day from sources like online/mobile financial transactions, social media traffic, and GPS coordinates. If collected and analyzed, these massive datasets hold great promise in preventing, treating, and ultimately curing AD, cancer, and other heretofore intractable scourges. This exponential computing / "big data" future is a dimension to economic growth that the Congressional Budget Office, with its static, straight-line projections, isn’t accounting for.
Unlike the Internet which offers us quick results, some industries like healthcare “[take] ten or 20 years to go from an idea to something being real,” said Google’s co-founder Larry Page to Time magazine last year. “Maybe we should shoot for the things that are really, really important so ten or 20 years from now we have those things done.” That’s exactly the approach and attitude the luminaries of Silicon Valley are taking, applying machine intelligence and human "collective intelligence" to spot patterns not only in customers but patients.
Marty Tenenbaum, a computer scientist, cancer survivor, and self-described "cancer warrior," started Cancer Commons, a place where patients can donate their data and collectively learn what treatments and trials work best for patients like them.
In an interview, Tenenbaum said that while it’s commendable to have ten-to-20 year goals, “We can’t afford to wait ten to 20 years to get started. We can start now, collecting and analyzing data, so that we learn from every patient’s experience, go up the learning curve, rapidly run virtual trials e.g., experiment with promising hypotheses like using lithium to treat AD.”
PatientsLikeMe, a for-profit company that runs an online community, is a platform where patients can share and “learn from real-world, outcome-based health data.” In 2011, PatientsLikeMe ran a virtual trial of lithium as a treatment for Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. Unfortunately, the trial failed, but it was completed – from design to publication – in a year, compared to the five to ten years it typically takes for a clinical trial. That’s an astounding increase in medical productivity, offering hope that progress can be vastly accelerated.
Strengthened by over a quarter of a million members and over one million treatment and symptom reports, perhaps PatientsLikeMe could adapt its trial design to quickly test lithium as a potential Alzheimer’s treatment. Indeed, that’s the future: bigger data platforms pooling the health information of volunteers to find the best and fastest solution.
Still, there are obstacles that must be overcome. As Tenenbaum explains, “Our ability to run ‘virtual trials’ is limited in practice by social and economic impediments, such as obtaining access to, and reimbursement for, investigational drugs... and compelling research centers to share data. That’s where we could use help from Washington.”
So again, we have abundance of capital and technology, and yet we've got no cure for AD. What we do know is that without a cure, AD will cost an estimated $1.2 trillion a year by 2050 – a figure that will bankrupt our country. The AD epidemic is a crisis and it deserves attention, not only for economic but also humanitarian concerns.
When great minds like Saunders begin to dement, “slunk into intellectual Eden” as she calls it, we all lose. Whether it be your friend, mother, father, teacher, innovator, caregiver, tax payer – too many more productive years are lost at cost.
It’s because of past leadership’s valuing a cure and national strategies to restore medical innovation in hopes of medical discovery that the polio vaccine was created. Using the available capital of our rich nation, the ever-increasing availability of computing power, and Silicon Valley’s solution – the power of a data commons – there is hope to restore medical innovation. Let’s continue America’s legacy of cutting-edge problem-solving.
Let’s raise our voices and call for America’s second-greatest medical crusade in finding a cure for Alzheimer’s.
Let’s apply our wealth and our brains to increasing our wealth and protecting our brains. If the government can’t do it, Silicon Valley can.