What everyone's missing about Mark Zuckerberg's plan to 'cure' disease

The science may be the easier part

Sam Bernstein, Daily Briefing

Does Mark Zuckerberg want us to live forever?

That's the question lurking in the much-scrutinized announcement last week that Zuckerberg, the co-founder of Facebook, and his wife, Priscilla Chan, will give billions to advance various social causes over their lifetime.

The hope—Zuckerberg and Chan wrote in an open letter to their newborn daughter—is that "one day, you or your children will see what we can only imagine: a world without suffering from disease."

Zuckerberg pledges billions to help 'cure disease'

"Today, most people die from five things—heart disease, cancer, stroke, neurodegenerative, and infectious diseases—and we can make faster progress on these and other problems," they continued. "As technology accelerates, we have a real shot at preventing, curing, or managing all or most [diseases] in the next 100 years."

Zuckerberg and Chan's pledge drew wide praise. In a statement, Bill and Melinda Gates said their decision is "an inspiration to us and the world."

But a close examination of the couple's pronouncement reveals that it's quietly radical and raises some hard questions: How will the benefits of medical cures be distributed? Who will pay for them? And what further ethical issues could the treatments raise?

Curing disease through medications

We're already grappling with some of these issues today in the debate over a cure for just one disease: Hepatitis C.

Gilead Sciences recently introduced a treatment called Sovaldi, which has an 80% to 90% cure rate but costs about $84,000 for a single course of treatment. Given that as many as four million Americans are afflicted with Hepatitis C, Sovaldi has put tremendous financial pressure on public and private payers and raised questions about how to get life-saving medicines into the hands of the people that need them most.

NYT: $84,000 hepatitis drug is a budget nightmare for states

According to an August study in Annals of Internal Medicine, most state Medicaid programs are only covering Sovaldi for patients with liver scaring. "If we were to pony up for [Sovaldi], we would spend as much on this one drug as we would for all other drugs in the entire program," Matt Salo, executive director of the National Association of State Medicaid Directors, told The Atlantic in September.

Gilead has since made progress on reducing the price of the drug for some markets, but consider what could happen when similar—and likely expensive—breakthroughs come to market for diseases like Alzheimer's, heart disease, and diabetes.

Curing disease through technology

Another new method of potentially curing disease raises its own set of ethical questions, too—the gene editing technology CRISPR-Cas9, which allows scientists to add and remove bits of genetic code of any living thing quicker, cheaper, and potentially more accurate than they have been able to do in the past.  

Scientists developed the technology in just the past few years, and some researchers predict we could soon use CRISPR to eliminate hereditary disease and, eventually, genetically engineer away certain chronic ailments like high cholesterol.

But for all its promise, an international group of researchers last week at a summit in Washington, D.C., called for a moratorium on using CRISPR or similar technologies to carry out so-called germline editing, which allows genetic changes to be passed on to future generations.

The 12-member organizing committee of the Washington D.C., conference—sponsored by the National Academy of Sciences of the United States, the Institute of Medicine, and others—released a statement saying it would be "irresponsible to proceed with any clinical use of germline editing unless … there is broad societal consensus about the appropriateness of the proposed application."

Experts have raised issues about germline editing and consent, along with concerns that unequal access to genetic therapies could create engineered genetic drift among communities differentiated by race, wealth, or geography.

Asking the right questions

So far, health care leaders haven't had to deal with many of the hardest questions around the costs and the ethics of permanently curing disease. But if Zuckerberg gets his way, we'll be forced to grapple with these issues sooner than we'd planned. Well-intentioned medical breakthroughs could put strain on our health care system and increase inequality.

And in many ways, those challenges are much more favorable than the problems we wrestle with today, where millions of Americans die prematurely from preventable diseases.

But a world without disease isn't a world without problems—it's just a world where the problems take a different shape.

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