Nov 26, 2018

Axios Vitals

By Caitlin Owens
Caitlin Owens

Good morning. ... An English woman is suing her doctors for failing to tell her she carried the gene for Huntington's disease — the first case of its kind, according to The Guardian.

1 big thing: World's first gene-edited babies

Photo: Gregor Fischer/picture alliance via Getty Images

A Chinese scientist says he has successfully used the gene-editing tool known as CRISPR to produce genetically engineered children, according to the Associated Press.

Details:

  • The scientist, He Jiankui, said he has helped create a genetically engineered pair of twins.
  • His use of the CRISPR technology "sought to disable a gene ... that forms a protein doorway that allows HIV, the virus that causes AIDS, to enter a cell," the AP reports.
  • The way the work was conducted suggests that the "main emphasis was on testing editing rather than avoiding this disease," Harvard geneticist George Church told the AP.
  • He, the scientist, was educated in the U.S. but was recruited back to China. An American scientist, Michael Deem, also worked on the project in China. This type of gene editing is illegal in the U.S.

Why it matters: Gene editing has the power to spare a child from painful, fatal diseases. It also has the power to basically become a form of eugenics.

2. Drugs are unaffordable even with insurance
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Data: Google Survey conducted by GoodRx between Oct. 29 - Nov. 2, 2018, among 1,060 Americans. Total margin of error is ±2.5 percentage points; Poll methodology; Chart: Naema Ahmed/Axios

More than two out of five Americans say paying for their prescription drugs in the past year was difficult, even though most have health insurance, according to a new survey from GoodRx, a consumer site that compares drug costs.

Why it matters, via Axios' Bob Herman: Drug prices are a top public concern because many people take medications every day and see the toll on their wallets. The survey shows people aren't really feeling any relief amid the political promises to address the issue.

By the numbers: The GoodRx survey, which mirrors other public tracking polls, found:

  • A third of people have skipped filling a prescription in the last year due to the cost. Rising coinsurance rates and deductibles often are the culprits.
  • Almost 20% of Americans said they've had to use money from their savings to pay for their drugs. (Separately, another 12% said they didn't have any savings to draw from.)
  • The survey got responses from more than 1,000 people, 70% of whom take at least one medication.

Go deeper.

3. Exporting dangerous devices

More than a dozen medical devices approved by the FDA for export to other countries — but not for use in the U.S. — have been identified as having "troubled track records" in an investigation by NBC News.

  • These devices include heart valves that caused severe infections, shoulder implants that needed to be removed and stents that could cut into arteries that they were supposed to save.
  • There are about 4,600 devices registered with the FDA as "export-only," and American companies made more than $41 billion last year on exporting medical devices.
  • Some of the companies that make the devices identified by NBC failed to report serious adverse events.

Between the lines: This raises questions about whether it is America's job to evaluate whether a medical device is safe for use in another country, my colleague Caitlin Owens notes.

  • But it also shows what can happen if health care companies are left alone to decide between consumer safety and profit.
4. Most health data breaches aren’t hacks
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Most breaches of personal health information stem from "internal issues" among doctors, hospitals and other providers, rather than hacks, according to research from Michigan State University and Johns Hopkins University, published last week in JAMA Internal Medicine.

Between the lines: Earlier research showed that the overall number of health care data breaches — and the number of records exposed from those breaches — is rising.

  • But, according to this latest paper, most of those breaches aren’t hacks.
  • 53% of data breaches were the result of "internal factors," including 25% that stemmed from "unauthorized access or disclosure" — things like a provider taking a patient’s personal information home, or accidentally sending it to the wrong email address.

Yes, but: Large-scale hacks are still responsible for a big share of the total number of records exposed. The 2015 Anthem hack, for example, affected the information of some 80 million people.

5. While you were giving thanks …
  • The New York Times' Abby Goodnough visits Dayton, Ohio, where widespread availability of naloxone and addiction treatment have contributed to a promising drop in overdose deaths.
  • Inmates often leave prison with a chronic illness. But they also often have a hard time quickly finding health insurance, even through Medicaid, the Minneapolis Star Tribune reports.
  • President Trump initially resisted attacks on Medicare for All: "Medicare is popular, he said, and voters want it," The Washington Post reports.
  • Americans are (rightly) afraid they'll pay more for health insurance if the courts strike down the Affordable Care Act's protections for pre-existing conditions.
Caitlin Owens