Today in Obamacare: Atul Gawande explains why Obamacare repeal is terrible for science

Republicans have promised to repeal and replace the Affordable Care Act (precise plans, TBD). And there’s rightfully lots of worry about the fate of the preexisting condition clause, which finally prohibited insurance companies from denying people coverage based on a history of disease.

But what’s talked about less is how repealing the law — or removing the preexisting conditions rule — could have unintended consequences for science.

Researchers, including famous ones like Atul Gawande, are voicing concerns that if we turn back to the pre-ACA days, people might be stingy with their health data out of fear of discrimination by insurance companies. And this comes at a time when scientists really need this information to advance our understanding of disease.

Several companies and big data projects — 23&Me, GRAIL, Foundation Medicine — use information they gather from individuals to do research on treating and preventing disease. Since the ACA, the government has also launched big data research projects — like the Million Veterans Program and All of US — with the aim of collecting genomic information and health records from millions of Americans to understand how genes and health behaviors keep us healthy or make us sick.

“Add in data from wearables, your phone, where you live, where you get your care — and we are rapidly developing tools for clinicians and scientists to recognize patterns of illness and disease before they happen,” Atul Gawande, Brigham & Women’s Hospital and New Yorker writer, told Vox over email. “That’s great for developing treatment approaches that control or cure disease far earlier than we could have before.”

But this work has been helped by the ACA’s protections for people with preexisting conditions. “Our rapidly increasing ability to see into the future of your health means that almost everyone will have a preexisting condition waiting to happen,” Gawande added.

DJ Patil, who was the chief data scientist of the US under former President Barack Obama, is also concerned. “Healthy people aren’t going to have the ability to make sure their data can’t be used against them for preventing them from coverage,” he said. And that could make them less likely to sign up in the name of science.

He’d like to see strong protections that prevent using this kind of data against individuals trying to gain insurance. The GINA and HIPAA laws offer some protections around how personal data can be used by insurance companies, but Patil worries that they aren’t comprehensive enough or in step “with where data science and AI are going.”

“Knowing how the data can be used against us and in a world where preexisting conditions can be used against us,” Patil said, “I wouldn’t give up my data in such a world, nor would I let any of my family.”

Democrats have been dragging out the confirmation hearings of Trump’s Cabinet picks, and his choice of Health Human Services secretary has been no exception. But the wait might soon be over: Price’s confirmation is expected to come overnight or by Friday morning.

Expect a lot of news about Price’s conflicts of interest. As Vox’s Libby Nelson reports, “[Price] spent 12 years in Congress writing legislation on health care issues. And for at least the past four years, he bought and sold more than $300,000 in health care stocks — stocks whose value was affected by the legislation he was working on.” While Democrats hoped this could derail his confirmation, it hasn’t.

As for Price’s plans for the ACA, “[He] would replace the law with a plan that does more to benefit the young, healthy, and rich — and disadvantages the sick, old, and poor. His plan also provides significantly less help to those with preexisting conditions than other Republican proposals, particularly the replacement plan offered by House Speaker Paul Ryan (R-WI),” Sarah Kliff details in a new explainer. “The biggest cut to the poor in Price’s plan is the full repeal of the Affordable Care Act’s Medicaid expansion, a program that currently covers millions of low-income Americans. Price’s plan replaces it with, well, nothing.”

“Can Price steer GOP through Obamacare repeal battle?”: “There are mixed signals about the exact role Price will play in the replacement effort. During his confirmation hearings, Price often downplayed his part in hammering out the legislative details, characterizing the secretary job as less of an architect and more of an administrator. That’s clearly the role preferred by some Republican lawmakers who are wary of letting the White House write their health care bill.” — Adam Cancryn, Politico

“Why the GOP Is still struggling with health care reform”: “Obamacare has produced an imperfect record. But Republicans are plainly struggling to develop a more palatable replacement. The core problem Republicans face, as I’ve written before, is that their alternatives lower costs on younger and healthier people, many of whom vote Democratic, while raising costs and increasing risk for older and less affluent people with greater health needs—most of whom vote Republican.” — Ronald Brownstein, The Atlantic

“Patient groups fear Obamacare repeal could undo protections for sickest Americans”: “It comes down to the individual mandate, the law’s most unpopular provision, which required every American to buy insurance or face a penalty. Republicans want it gone. But if they nix the mandate, it becomes exceedingly difficult to keep the popular insurance reforms — including the requirement that health plans cover everybody, even people with costly preexisting conditions, without charging those people more. President Trump and other Republicans have sworn they would keep that provision, which ended discrimination against America’s sickest patients.” — Lev Facher, Stat