Health Care Monopolies Strike Back

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The GOP is becoming more unhinged about LGBTQ people — which will only make them more unpopular

After the War on Cancer

Project on Epistemic Injustice in Health Care Wins £2.6 Million Grant

An interdisciplinary team led by philosopher Havi Carel (Bristol) has won a £2.6 million grant for its project, “Epistemic Injustice in Health Care” (EPIC).

The “Discovery Grant“, from the charitable science foundation Wellcome, will fund the project for six years, beginning this September.

In addition to Professor Carel, the core team is:

• Lisa Bortolotti (Birmingham)
• Matthew Broome (Birmingham)
• Ian James Kidd (University of Nottingham)
• Sheelagh McGuinness (Bristol)

They will be bringing on six* postdoctoral researchers and a range of other researchers and collaborators from Swansea, City and Aston Universities, and the Universities of Bologna and Ferrara.

(l to r) Lisa Bortolotti, Matthew Broome, Havi Carel, Ian James Kidd, Sheelagh McGuinness

According to the team, the project

will offer a systematic investigation of epistemic injustice across a diverse range of case studies—including somatic and psychiatric illnesses, and neurodiverse persons, as well as children and those in later-life care. EPIC aims to identify the interpersonal, institutional, and cultural dimensions of epistemic injustices. The project will include a range of events, postdoctoral positions, and publications and aims to identify practical measures for the benefit of patients and healthcare practitioners alike.

Inquiries about the project should be sent to Professor Carel.

(* Note: the original post stated there would be eight postdocs. That was an error.)

Mental health startup Cerebral shared private patient data with Google, Meta and TikTok

Cerebral, a telehealth startup that gained popularity during the early days of the pandemic, disclosed this week that it shared the personal data of more than 3.1 million US patients with social media companies and advertisers, including Google, Meta and TikTok. As first reported by TechCrunch (via The Verge), a recently uploaded notice on Cerebral’s website reveals the company had been using “pixels,” tracking scripts companies like Meta offer to third-party developers for advertising purposes, to collect user data since it began operating in October 2019.

Following a recent review of its software, Cerebral “determined that it had disclosed certain information that may be regulated as protected health information under [the Health Insurance Portability and Accountability Act].” Among the data Cerebral shared are names, phone numbers, birth dates and insurance information. In some instances, the company may have also exposed information it collected through the mental health self-assessment patients completed to schedule counseling appointments and access other services. According to Cerebral, it did not disclose social security numbers, bank information or credit card numbers.

After learning of the oversight, Cerebral says it “disabled, reconfigured, and/or removed” the tracking pixels that caused the data exposure. “In addition, we have enhanced our information security practices and technology vetting processes to further mitigate the risk of sharing such information in the future.” The US Department of Health and Human Services is investigating Cerebral. News of the data exposure comes after the Federal Trade Commission fined discount drug app GoodRx $1.5 million for sharing patient information with Meta and Google. Earlier this month, the agency announced a $7.8 million settlement with online counseling company BetterHelp and said it was seeking to ban the company from sharing health data for ad targeting.

Screenshot from Cerebral's website.

US House of Representatives impacted by health insurance data breach

Sensitive information for members of Congress and their staff and family members has been exposed in a data breach, according to House leaders. The FBI was able to purchase leaked information from health insurance marketplace DC Health Link on the dark web, House Speaker Kevin McCarthy and House Minority Leader Hakeem Jeffries wrote in a letter.

The data included the names of enrollees' spouses, dependent children, social security numbers and home addresses, according to the letter. "This breach significantly increase the risk that members, staff and their families will experience identity theft, financial crimes and physical threats — already an ongoing concern," it reads.

McCarthy and Jeffires said the FBI hadn't yet determined the size and scope of the breach, though they indicated that the impact on "House customers could be extraordinary." They noted that thousands of House members and employees from throughout the country have signed up for health insurance through DC Health Link since 2014.

“Fortunately, the individuals selling the information appear unaware of the high-level sensitivity of the confidential information in their possession, and its relation to Members of Congress,” the House leaders wrote. “This will certainly change as media reports more widely publicize the breach.”

“Currently, I do not know the size and scope of the breach, but have been informed by the Federal Bureau of Investigation (FBI) that account information and [personally identifiable information] of hundreds of Members and House staff were stolen,” Catherine L. Szpindor, the House of Representatives' chief administrative officer, wrote in a letter to colleagues. Reports suggest that the data also includes details on senators and their staff, but that information was seemingly limited to their names and those of family members.

DC Health Link operator DC Health Benefit Exchange Authority said it has opened an investigation. "We are in the process of notifying impacted customers and will provide identity and credit monitoring services," it told NBC News in a statement. The FBI has confirmed it's aware of the incident, while Capitol Police are assisting the agency with its investigation.

A member of a dark web forum reportedly claimed this week that they had data on 170,000 DC Health Link customers and were willing to sell the information. They later said the information had been sold.

“We’re gonna continue to work on this issue in a bipartisan way, get to the bottom of what happened, figure out the implications of what has occurred,” Jeffries said at a press conference on Thursday. “And also we’re gonna need some real reassurance as to guardrails that are put in place to prevent this type of data breach from ever happening again.”

United States Capitol, Government in Washington, D.C., United States of America. Illuminated at night

The Forgotten History of the World’s First Trans Clinic

There is a moral panic about transgender issues sweeping America. While it is raging most viciously in the Republican Party — see: the odious speeches at CPAC last week; Tennessee banning drag shows and gender-affirming health care for minors; Florida Governor Ron DeSantis requesting information from public colleges about students who have sought hormone treatment and reassignment surgeries — the panic’s tentacles extend much further. There is no better moment, then, to read historian Brandy Schillace’s piece about the Institute for Sexual Research, a groundbreaking facility in interwar Germany that heralded a just, humane future for gay, trans, and non-binary individuals, until fascism arrived. Schillace is at work on a book about the institute, and you can also listen to her talk about it on a recent edition of NPR’s All Things Considered:

That such an institute existed as early as 1919, recognizing the plurality of gender identity and offering support, comes as a surprise to many. It should have been the bedrock on which to build a bolder future. But as the institute celebrated its first decade, the Nazi party was already on the rise. By 1932 it was the largest political party in Germany, growing its numbers through a nationalism that targeted the immigrant, the disabled and the “genetically unfit.” Weakened by economic crisis and without a majority, the Weimar Republic collapsed.

Adolf Hitler was named chancellor on January 30, 1933, and enacted policies to rid Germany of Lebensunwertes Leben, or “lives unworthy of living.” What began as a sterilization program ultimately led to the extermination of millions of Jews, Roma, Soviet and Polish citizens — and homosexuals and transgender people.

When the Nazis came for the institute on May 6, 1933, Hirschfeld was out of the country. Giese fled with what little he could. Troops swarmed the building, carrying off a bronze bust of Hirschfeld and all his precious books, which they piled in the street. Soon a towerlike bonfire engulfed more than 20,000 books, some of them rare copies that had helped provide a historiography for nonconforming people.

The carnage flickered over German newsreels. It was among the first and largest of the Nazi book burnings. Nazi youth, students and soldiers participated in the destruction, while voiceovers of the footage declared that the German state had committed “the intellectual garbage of the past” to the flames. The collection was irreplaceable.

New Senate bill aims to better protect health data after Roe reversal

A new Senate bill aims to expand protections for Americans' health and location data. It follows concerns that such information could be used to identify individuals seeking reproductive health care services after the Supreme Court overturned the constitutional right to abortion last year. 

The Upholding Protections for Health and Online Location Data (UPHOLD) Privacy Act seeks to block companies from selling personally identifiable health data for advertising purposes and ban data brokers from buying and selling precise location data. Moreover, the proposed legislation would afford consumers more access to and ownership over their health data. It would also place more restrictions on companies’ use of personal health data without the explicit consent of a user.

The bill aims to prohibit the use of personally identifiable health data from any source for advertising. This includes data from users themselves, medical centers, fitness trackers and browser histories. The UPHOLD Privacy Act's restrictions wouldn't apply to public health campaigns.

The legislation was introduced by Democratic Sens. Amy Klobuchar, Elizabeth Warren and Mazie Hirono. “With Republicans working to ban and criminalize reproductive health care nationwide, it’s critical we safeguard the reproductive data privacy of everyone in our country,” Hirono said in a statement. “Everyone should be able to trust that personal data about their bodies and their health care will be protected. By restricting the sale and use of personally identifiable health data, this bill will give patients and providers the peace of mind that their private information is secure.”

Since the Supreme Court overturned Roe v. Wade last June, legislators have not made much headway toward protecting consumer health data. Period-tracking apps have given some particular cause for concern. Developers of some of these apps have since introduced features and policies to help protect their users' data.

The Federal Trade Commission said soon after the Supreme Court ruling that it would clamp down on companies which misuse health and location data. This week, the agency moved to ban online counseling service BetterHelp from sharing consumers' health data for ad targeting without consent. The FTC found that the company shared users' email addresses, IPs and health questionnaire responses. BetterHelp says it has never shared clinical data from therapy sessions with advertisers, publishers or social media companies.

Hand holding smart phone app menstruation cycle icon on touchscreen. Close-up selective focus shot.

FDA reportedly denied Neuralink's request to begin human trials of its brain implant

Despite the repeated and audacious claims by its sometimes CEO, Elon Musk, the prospects of brain-computer interface (BCI) startup Neuralink bringing a product to market remain distant, according to a new report from Reuters. The BCI company was apparently denied authorization by the FDA in 2022 to conduct human trials using the same devices that killed all those pigs — namely on account of; pig killing.

"The agency’s major safety concerns involved the device’s lithium battery; the potential for the implant’s tiny wires to migrate to other areas of the brain; and questions over whether and how the device can be removed without damaging brain tissue," current and former Neuralink employees told Reuters.

The FDA's concerns regarding the battery system and its novel transdermal charging capabilities revolve around the the device's chances of failure. According to Reuters, the agency is seeking reassurances that the battery is "very unlikely to fail" because should it do so, the discharge of electrical current or heat energy from a ruptured pack could fry the surrounding tissue. 

The FDA is also very concerned with potential problems should the device need to be removed wholesale, either for replacement or upgrades, due to the minuscule size of the electrical leads that extend into the patient's grey matter. Those leads are so small and delicate that they are at risk of breaking off during removal (or even during regular use) and then migrating to other parts of the brain where they might get lodged in something important.

During Neuralink's open house last November, Musk's confidently claimed the company would secure FDA approval "within six months," basically by this spring. That estimate is turning out to be as accurate as his guesses for when the Cybertruck might finally enter production. “He can’t appreciate that this is not a car,” one employee told Reuters. “This is a person’s brain. This is not a toy.” Neuralink did not respond to requests for comment.

Neuralink logo displayed on a phone screen, a silhouette of a paper in shape of a human face and a binary code displayed on a screen are seen in this multiple exposure illustration photo taken in Krakow, Poland on December 10, 2021. (Photo by Jakub Porzycki/NurPhoto via Getty Images)

FTC moves to ban BetterHelp from sharing mental health data for ad targeting

The Federal Trade Commission has moved to block online counseling company BetterHelp from sharing health data, including mental health information, with the likes of Facebook and Snapchat for advertising. As part of a proposed order, BetterHelp has agreed to pay $7.8 million to consumers to settle charges that it shared sensitive data for advertising purposes after promising to keep the information private.

This marks the first time the agency has reached an agreement with a company to return money to consumers after their health data was allegedly compromised. The order will be subject to public comment for 30 days before the agency decides whether to finalize it.

If the order comes into effect, it will ban BetterHelp from sharing data from users (including those who accessed the company's website or app without signing up for its services) with select third parties for ad targeting. The FTC alleges that between 2017 and 2020, BetterHelp shared users' email addresses, IPs and health questionnaire responses with Facebook, Snapchat, Criteo and Pinterest. The agency said this allowed Facebook, for instance, to target similar users with BetterHelp ads, which helped to drive tens of thousands of paid users and millions of dollars in revenue to the counseling company.

The FTC claims BetterHelp didn't receive explicit consent from users before sharing their health data, which it pledged to keep private except for limited uses, such as counseling purposes. In its complaint (PDF), the agency also accused BetterHelp of not limiting the scope of how third-party companies could use the health data it shared with them.

"When a person struggling with mental health issues reaches out for help, they do so in a moment of vulnerability and with an expectation that professional counseling services will protect their privacy,” FTC Bureau of Consumer Protection director Samuel Levine said in a statement. "Instead, BetterHelp betrayed consumers’ most personal health information for profit. Let this proposed order be a stout reminder that the FTC will prioritize defending Americans’ sensitive data from illegal exploitation."

The proposed order, which FTC commissioners approved unanimously, will require BetterHelp to, among other things, obtain explicit consent from users before sharing their data with some third parties for any reason. The company will need to establish privacy protocols to protect user data and delete personal and health information after a certain period of time. Moreover, BetterHelp will have to instruct the companies it allegedly shared user health and personal data with to wipe such information from their servers.

Here's BetterHelp's statement in full:

We are deeply committed to the privacy of our members and we value the trust people put in us by using our services. Our technology, policies and procedures are designed to protect and secure our members' information so it is not used or shared without their approval and consent.

BetterHelp and the FTC have reached a settlement in regard to BetterHelp's advertising practices that were in effect between 2017 to 2020. The FTC alleged we used limited, encrypted information to optimize the effectiveness of our advertising campaigns so we could deliver more relevant ads and reach people who may be interested in our services. This industry-standard practice is routinely used by some of the largest health providers, health systems and healthcare brands. Nonetheless, we understand the FTC's desire to set new precedents around consumer marketing, and we are happy to settle this matter with the agency. This settlement, which is no admission of wrongdoing, allows us to continue to focus on our mission to help millions of people around the world get access to quality therapy.

To clarify, we do not share and have never shared with advertisers, publishers, social media platforms or any other similar third parties, private information such as members' names or clinical data from therapy sessions. In addition, we do not receive and have never received any payment from any third party for any kind of information about any of our members.

As part of our ongoing investment in privacy, betterhelp.com has recently been certified by HITRUST. This certification is the industry-recognized gold standard for providing the highest level of information protection and compliance assurance because of the comprehensiveness of control requirements, depth of quality review and consistency of oversight. In cooperation with the FTC, we will continue to make industry-leading investments in safeguarding the privacy of our members.

Update 3:27PM ET: Added BetterHelp's statement.

Amazon officially becomes a health care provider after closing purchase of One Medical

Amazon's months-long effort to acquire One Medical is finished — for now, at least. The company has officially completed its $3.9 billion purchase, giving it a primary healthcare provider with in-person and virtual treatment as well as lab tests. The successful buyout isn't leading to any immediate changes in One Medical's services beyond a temporary $55 discount on a one-year membership (now $144), but Amazon said last July that it planned a "reinvention" of healthcare with the takeover.

The completion comes just a day after the Federal Trade Commission said it wouldn't contest the buyout. However, the regulator also says it's still investigating the deal to explore potential anti-competitive effects and privacy concerns raised by Amazon's access to health data. An FTC official toldCNN the agency will warn Amazon it's closing the purchase at its own risk, and might still face a government challenge later.

Amazon has spent years making deeper forays into healthcare. It bought PillPack in 2018 and used the provider to launch an in-house pharmacy service. The online shopping heavyweight also introduced an app-based health service for employees in 2019 that it later offered to other companies. In 2021, the company introduced a custom Alexa for healthcare. The One Medical move theoretically completes the picture by letting Amazon handle everything from minor doctor's appointments through to prescriptions.

Whether or not Amazon could endure an FTC challenge isn't clear. Commission chair Lina Khan is known to be wary of Big Tech, and her stance even prompted Amazon to ask for her recusal from antitrust cases. There's no certainty the FTC might succeed, though, and it recently lost an effort to block Meta's purchase of Within. One Medical is considerably larger than Within, though, and its healthcare focus brings up privacy concerns that aren't always present in tech acquisitions.

A stethoscope is placed on displayed Amazon.com and One Medical logos in this illustration taken July 26, 2022. REUTERS/Dado Ruvic/Illustration

California requires hospitals to turn to a patient’s next of kin, closing a longtime loophole

The National, Bipartisan Loathing of Hospital Monopolies

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Children’s Mental Health, Institutional Gaslighting, and Mother-Blame

Your Next Hospital Bed Might Be at Home

We think of being in the hospital as enduring isolation in a clinical setting, cut off from normal life. But what if being hospitalized meant something different? What if you could be receive hospital-quality care in your own home? Helen Ouyang profiles a movement of health care providers who, propelled by a range of factors, not least among them the COVID-19 pandemic, are working to redefine what hospitalization in America might look like:

Other countries, including Australia, Canada and several in Europe, had already been experimenting with this practice, some of them extensively. In Australia, which has been running home-hospitals for decades, these services provided in Victoria alone are the equivalent of what a 500-bed facility could offer in one year. Overall, the patients treated in this way do just as well, if not better, in their homes.

The obstacles impeding Leff and other hospital-at-home advocates in the United States were bound up with America’s labyrinthine health care system and particular medical culture. The Centers for Medicare and Medicaid Services (C.M.S.), which is the largest payer of hospitalizations, has required that nurses must be on site 24 hours a day, seven days a week, effectively keeping patients within the hospital walls. This matches how American society has come to regard hospitalization, too — nurses at the bedside, doctors making their rounds, in elaborate facilities pulsating with machines.

But Americans didn’t always convalesce in hospitals. Before the 20th century, treatment at home was the norm. “Only the most crowded and filthy dwellings were inferior to the hospital’s impersonal ward,” the historian Charles E. Rosenberg writes in his 1987 book “The Care of Strangers: The Rise of America’s Hospital System.” “Ordinarily, home atmosphere and the nursing of family members provided the ideal conditions for restoring health.” As Rosenberg puts it, “Much of household medicine was, in fact, identical with hospital treatment.” As health care became more specialized and high-tech, however, diagnosis and treatment gradually moved into hospitals, and they evolved into institutions of science and technology.

Amazon's RxPass offers Prime members generic medications for $5 a month

Amazon has launched a new subscription service that will let customers in the US get as many eligible medications as they need for $5 a month. The new service called RxPass is part of the e-commerce giant's Pharmacy business that originally launched in 2020 as a two-day prescription drug delivery offering for Prime users. That makes RxPass a $5 add-on for Prime, which sets users back $139 a year or $15 a month in the US. 

While it doesn't look quite as affordable bundled with Prime pricing, the RxPass program does offer medications for 80 common health conditions, including high blood pressure, acid reflux, anemia and even depression, diabetes, breast cancer and dementia. At the moment, it has 60 generic medications in its list — all of which require a valid prescription — and subscribers can choose to have them delivered for free either on a monthly or a quarterly basis. 

Take note that customers will need to pay $5 out of pocket, since the service does not take insurance like Amazon Pharmacy does for purchases outside of the program. People who are enrolled to Medicare, Medicaid and any other government healthcare program will not be able to sign up for RxPass, as well, though they can still use their government insurance when purchasing medicine from Pharmacy.

For people with multiple conditions paying a lot more than $5 a month for their medications out of pocket, RxPass could be worth trying out, especially if they already have Prime. Those interested may want to take a look at the service's full medication list first to see if it does offer what they need before heading to the Pharmacy website or the Amazon app to sign up. 

Bottles of medication on a counter right next to an Amazon box.

FTC asks court to hold Martin Shkreli in contempt for launching new drug company

Martin Shkreli, whom you may know as "Pharma Bro," launched a new company last year called "Druglike, Inc." Now, the Federal Trade Commission (FTC) has asked a federal judge to hold him in contempt for failing to cooperate with the agency in its investigation to determine whether launching the company violates his lifetime industry ban. US District Court Judge Denise Cote imposed a lifetime ban on Shkreli that prohibits him from participating in the pharmaceutical industry early last year. Cote ruled that the former pharma exec orchestrated an illegal anticompetitive scheme to gain a monopoly over Daraprim, a life-saving anti-malarial and anti-parasitic drug. 

After Shkreli's former company, Turing Pharmaceuticals, obtained the manufacturing license for Daraprim, it raised the drug's prices from $17.50 to $750 per tablet. Cote sided with the FTC in the antitrust lawsuit the agency filed against Shkreli in 2020 and ordered him to pay $64.6 million in damages, in addition to imposing a lifetime industry ban against him. Prior to Druglike's launch, Shkreli tried (and failed) to convince a judge to put the ban on hold, arguing that the public could benefit from his future contributions to the industry. Shkreli challenged the ban while he was serving time in federal prison after receiving a seven-year sentence in 2017 for defrauding investors. He was released from prison in May.

The FTC said it started asking Shkreli for a compliance report and access to relevant records, as well as asking him to sit for an interview regarding Druglike, in October 2022. However, the company co-founder kept on disregarding its "repeated requests." The agency also said that Shkreli has yet to pay any amount of his $64.6 million fine. It's now asking the court to order Shkreli to comply with its information requests within 21 days of its decision. 

In a press release (PDF) for its launch, Druglike described itself as "a Web3 drug discovery software platform." The company said it's building a "decentralized computing network" that "provides resources for anyone looking to start or contribute to early-stage drug discovery projects." In a statement, Shkreli said "Druglike will remove barriers to early-stage drug discovery, increase innovation and allow a broader group of contributors to share the rewards."

NEW YORK, NY - AUGUST 4: (L to R) Lead defense attorney Benjamin Brafman walks with former pharmaceutical executive Martin Shkreli after the jury issued a verdict at the U.S. District Court for the Eastern District of New York, August 4, 2017 in the Brooklyn borough of New York City. Shkreli was found guilty on three of the eight counts involving securities fraud and conspiracy to commit securities and wire fraud. (Photo by Drew Angerer/Getty Images)

Despite doctors’ concerns, University of California renews ties with religious affiliates

Bleeding and in pain, a pregnant woman in Louisiana couldn’t get answers