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HIPA, HIPPA, HOORAY pic.twitter.com/1fhvDNVtZr

— Bad HIPPA Takes (@BadHippa) April 8, 2021

The Bad HIPPA Takes account creator says some of the most common HIPAA inaccuracies over the past year have been about wearing masks, contact tracing, mandatory temperature checks, and, now, vaccine passports.

“There is a massive amount of confusion about who and what HIPAA actually applies to,” they said. “The sheer volume of bad information about it is nearly insurmountable.”

In other news, your doctor can’t ask you health questions because of HIPAA. pic.twitter.com/dTx0CC3r8n

— Bad HIPPA Takes (@BadHippa) April 14, 2021

Suffice it to say, Bad HIPPA Takes has plenty of material to draw from for its nearly 20,000 followers. But actually informing the general public about what HIPAA does is another matter.

“Trying to get people to understand what a Covered Entity or Business Associate is in 280 characters is not an easy task,” the person who runs the account said. “I can write the words, but of course this platform doesn’t lend itself well to considered, nuanced discussion.”

What HIPAA actually does

So what does that one P stand for if not privacy? Portability, obviously.

HIPAA is short for the Health Insurance Portability and Accountability Act. The 1996 law’s origins lie in creating federal standards for digitizing medical claims data and records (“accountability”) and allowing employees to have health insurance coverage, including for preexisting conditions, when they changed jobs (that’s the “portability”) — rights they did not have before the Affordable Care Act.

The privacy provision that most of us associate HIPAA with today wasn’t actually the focus of the law at the time.

“When Congress was passing this law, they realized that there was going to be this massive digitization of health data, and there might need to be privacy protections for that,” McGraw said.

It took a few years to work those out, so HIPAA’s privacy rules weren’t issued until the end of 2000, and didn’t fully take effect until 2002. They were most recently updated in 2013.

There are several elements to HIPAA, including provisions to prevent health care fraud, simplify and standardize medical records, rules for pre-tax employee medical savings accounts, and to ensure continuous health insurance coverage for employees who lost or changed their jobs. For the purposes of this explainer, we’re focusing on the privacy rule, which falls under its administrative simplification section.

HIPAA only applies to what are called “covered entities.” Those are, essentially, health care providers (doctors, hospitals, and pharmacies, for instance), health insurers, and health care clearinghouses (which process medical data). It also covers their “business associates,” or contractors who have to handle medical records in some way to do work for those covered entities. Those parties are required to follow certain protocols to keep your protected health information secure and private.

And that’s why your health care provider or insurer might require you to communicate with them through secure, HIPAA-compliant channels and patient portals, or take other steps to verify your identity before discussing protected health information with you. HIPAA’s privacy rule also requires that health care providers give you, the patient, a notice of their privacy practices and allow you to access your own medical records. In fact, a lot of HIPAA complaints from patients aren’t about privacy violations but about lack of access to medical records.

Better yet, tell him you did then we he asks to see your car card as proof, hit him with a HIPPA lawsuit.

College for free!!!

— I am going to upset to drive self inflections (@JASONWI72430456) April 14, 2021

If you think your HIPAA rights have been violated, you can complain to the HHS Office of Civil Rights. But — and this is another common misconception, as indicated by the above tweets — you can’t sue the alleged offender yourself. The Office of Civil Rights takes action, if warranted, for instance by issuing fines or even criminal penalties to offenders.

What HIPAA doesn’t do

It’s important to note that medical privacy didn’t begin with HIPAA, and it’s not the only health privacy law out there. There are other laws that protect certain types of health information: Some states have their own stricter medical privacy laws, or things like the Americans With Disabilities Act, which mandates that employers must keep disability-related medical information about their employees confidential. And the concept of doctor-patient confidentiality has existed for a long time — it’s part of the Hippocratic Oath (which is not a law) — and that trust is a necessary part of good medical care.

“If I’m the doctor and you’re the patient, you come to me, you might tell me some really secret things,” Savage said. “And I need to know that to give you the right care and diagnose you properly.”

At the same time, many of us freely give away our health information to all kinds of places and people who have no real legal obligation to keep that information private or secure. With the internet, there are more ways to do that than ever.

“I think generally, when you’re talking about interactions with the health care system, the likelihood that they’re protected by HIPAA is very strong,” McGraw said. “Now, where those things break down: Obviously, if you’re recording your steps on a Fitbit or you’re using a nutrition app, that’s not going to be covered by HIPAA.”

That therapist appointment you tweeted about? Your vaccine Instagram selfie? Your membership in a Facebook support group for people who have herpes? The period tracker app on your phone? The heart rate monitor on your wrist? Browsing WebMD for information about your recent lupus diagnosis? The mail-order DNA test? The Uber trip you took to the emergency room? That’s all health information, most of it is directly tied to you, it can be sensitive, and none of it is covered by HIPAA (unless protected health information is shared with a covered entity, as is the case with some digital health services).

And then we’ve got the organizations that handle health data but aren’t covered by HIPAA, including most schools, law enforcement, life insurers, and even employers. They may be covered by other privacy laws, but HIPAA isn’t one of them.

And right now, even some things that actually are covered by HIPAA have been given a temporary enforcement waiver due to the pandemic. The Office of Civil Rights will not be enforcing its rule requiring health care providers to use HIPAA-compliant portals for telehealth, nor will it require covered entities to use HIPAA-compliant systems to schedule vaccines — an issue that arose when some health services’ sign-up portals crashed and the services turned to Eventbrite. Eventbrite is a good service for getting a lot of people signed up for an event in high demand, but it’s not HIPAA-compliant. The Office of Civil Rights told Recode that enforcement discretion will remain in effect “until the Secretary of HHS determines that the public health emergency no longer exists.”

All this is to say that if you go to Starbucks (not a covered entity) and refuse to wear a mask because you say you have a health condition, it is not a HIPAA violation if the barista asks you what that condition is, nor is it a HIPAA violation if Starbucks refuses service to you.

If your doctor were to walk into that Starbucks and broadcast your health information to anyone within earshot without your permission, that would be a HIPAA violation. It would also be a good time to consider changing doctors. Fortunately, HIPAA allows you to request your medical records and bring them to a new provider. And if someone else happened to record your doctor’s outburst and put it on TikTok, that’s not a HIPAA violation, even though it does include information that was once protected by HIPAA.

“The protections don’t cling to the data and protect it all the way downstream,” McGraw said.

Additionally, someone asking if you’ve been vaccinated is not a HIPAA violation. In fact, it’s not a HIPAA violation for anyone to ask about any health condition you may have, though it might be considered rude. A business requiring you to show proof that you’ve been vaccinated before you can enter is not a HIPAA violation. Your employer requiring you to be vaccinated and show proof before you can go to the office is not a HIPAA violation. Schools requiring that students get certain vaccinations before they’re allowed to attend is not a HIPAA violation.

Oh, and vaccine passports — which the Biden administration has already said it has no plans to mandate and which have been around for decades, if not longer — are also not HIPAA violations. Let’s look at New York’s Excelsior Pass. To use it, you are voluntarily giving the app permission to access your health records, and, as the app’s disclaimer clearly states: “[T]he website is not provided to you by a health care provider, so, as such, you are not providing protected health information for health care treatment, payment, or operations (as defined under Health Insurance Portability and Accountability Act (HIPAA)).”

That’s not to say there might not be other, non-HIPAA violations at play here. Certain anti-discrimination laws limit what medical information employers and businesses can require their employees or customers to provide, and they are mandated to make reasonable accommodations for qualifying health conditions. But even those other laws do not, as we’ve seen, mean that businesses have to allow unmasked people in their establishments or that they can’t require employees to get vaccinated (unless they have a medical or religious reason why they can’t be).

Closing the health privacy law gap

So HIPAA isn’t the all-inclusive health privacy law so many people assume it is, but that mass assumption suggests that such a law is both wanted and needed. HIPAA has a lot of gaps that a privacy law can and should fill. The pandemic has only made this more apparent.

“People are fairly protective of their health information,” Caitriona Fitzgerald, deputy director of the Electronic Privacy Information Center (EPIC), told Recode. “They just assume it would be covered because it’s absurd that it’s not.”

Experts believe this coverage must come from comprehensive federal privacy laws that include provisions for sensitive information, like health data, or for what could be considered sensitive uses of data.

“What we need is for Congress to pass a comprehensive privacy law that sets limits on what the companies can use this data for, how long they can keep it, who they can disclose it to, and doesn’t put the burden of dealing with that on the individual,” Fitzgerald said. “The burden needs to be on the company that’s collecting the data to protect it and to minimize its use.”

Savage said people who are concerned with health privacy laws might find a more productive use of their time in contacting their legislators to advocate for the health privacy laws they believe they are entitled to.

“For individual legislators to move on something, they have to understand why it’s important,” Savage said. “And that’s where the human stories come in. Even just an email to your legislator saying, ‘I had this thing happen and I was really worried, it made me vaccine-hesitant. Can you please fix this?’”

Rep.  Suzan DelBene (D-WA) is one of several lawmakers who have pushed for better health privacy protections during the pandemic, including as a co-sponsor of the Public Health Emergency Privacy Act, a bill that was introduced in both houses of Congress in 2020 and reintroduced in early 2021. It would protect digital health data collected for the purpose of stopping the pandemic (for instance, by contact tracing apps or vaccine appointment booking tools) from being used for unrelated purposes by the government or private businesses.

“HIPAA provides some protections for our health information, but technology has advanced must faster than our laws,” DelBene told Recode. “The Public Health Emergency Privacy Act shows how we can protect consumers’ information during the pandemic, but I believe we need to go further since this issue permeates every part of our digital lives.”

DelBene recently introduced the Information Transparency and Personal Data Control Act, which includes added protections for sensitive information like health data. It’s one of what will likely be several consumer privacy bills introduced this session, any one of which could give Americans better health privacy protections. That is, of course, assuming any of them actually pass.

In the meantime, well, at least we have the Federal Trade Commission (FTC), which can — and has — gone after apps and websites that violated their own privacy policies, including a period tracker app.

And while Bad HIPPA Takes is no fan of how the law has been misinterpreted to erroneously declare that vaccine passports are illegal, they are concerned with where individual privacy (not HIPAA) rights stop and where a business’s property rights begin when it comes to those passports.

“If you live in rural America and Walmart is your only grocery store, do you just have to shop online forever, at additional cost and expense, because they decide to require vaccination to enter their stores?” they asked. “What if you are in that situation and are unbanked? The so-called digital divide could make things worse for a lot of people in the short term if implementation of a vaccine passport system is done recklessly.”

That’s not a HIPAA take, but it is a take worth considering.

Some of this new drive to be proactive — and public — about psychological wellness may be a generational shift. Generation Z — the cohort born after 1996 — “is more open than prior generations to both seeking mental health care and disclosing their experiences,” psychologist B. Janet Hibbs told Vox in an email. And some of it may also stem from the pandemic, a time that inspired many Americans to reevaluate their lives and focus on what was really important to them. The events of the last year and a half “allowed people to sit with themselves” and “assess how to make things right in a way that is true to them and not just please everyone else,” Elyse Fox, founder of the mental health nonprofit Sad Girls Club, told Vox.

Whatever the cause, it’s become more mainstream in recent months to prioritize self-care rather than self-denial. For decades, Americans have been laboring under a play-through-the-pain mentality — “there’s this overall sort of ethic in our society around grinning and bearing it, taking it on the chin,” Michael Lindsey, a professor at the NYU Silver School of Social Work who studies mental health, told Vox. But in recent months, more and more people have hit their breaking point and are committing to caring for themselves — even if it means stepping away from something as big as the Olympics or the Grand Slam. For Biles and Osaka, “although this was a move for themselves, it’s also a step for the entire world,” Fox said.

Gen Z is taking a lead on mental health

America asks a lot of its athletes. They train, often from very young ages, at sports that risk their health and sometimes their very lives — just prior to the Olympics, Biles completed a vault so dangerous that no other female gymnast had even tried it. They endure constant pressure to win, and constant scrutiny when they falter, even for a moment. They also have to show up at press conferences and be personable and relatable, all while holding themselves to a different standard of behavior than ordinary people — by, for example, never smoking marijuana. During the pandemic, they’ve also had to travel without family and friends and submit to a life in a series of isolated bubbles, making a difficult situation all the more stressful.

And the requirements for Black female athletes, historically, have been even more taxing, with players like Serena Williams subjected to endless body-shaming, racism, and disparate treatment by sports’ governing bodies. These athletes are still expected to be stand-ins for American greatness on a world stage, even when America — from sporting officials to the media — has often been far from great to them. Such factors make it all the more remarkable — or perhaps, all the more overdue — that Black female athletes have been some of the first to stand up on a national stage and say: enough.

In many ways, Osaka jump-started the current national conversation around mental health when she announced in May that she would not participate in mandatory press conferences ahead of the French Open. She later withdrew from the tournament, explaining that “I am not a natural public speaker and get huge waves of anxiety before I speak to the world’s media” and that she had faced “long bouts of depression” since 2018. In order to care for herself, she said, “I’m gonna take some time away from the court now, but when the time is right, I really want to work with the Tour to discuss ways we can make things better for the players, press, and fans.”

While she faced some criticism, she was also met with an outpouring of support, with experts, commentators, and even corporate sponsors praising her honesty. Other athletes have spoken out about mental health in recent months, too, from Lyle, who described taking antidepressants as “one of the best decisions I have made in a while,” to Manuel, who missed three weeks of training earlier this year due to overtraining syndrome, which can cause fatigue and depression. Meanwhile, sprinter Sha’Carri Richardson, who was suspended in June after testing positive for marijuana, said she’d used it to cope with grief after her biological mother’s death. “It sent me into a state of emotional panic,” she said in an NBC interview, “I didn’t know how to control my emotions or deal with my emotions during that time.”

 Patrick Smith/Getty Images
Sha’Carri Richardson seen after winning the Women’s 100 Meter final on day 2 of the US Olympic Track & Field Team Trials in Eugene, Oregon.

Then came Biles, who withdrew both from the team final and from the individual all-around competition in Tokyo this week. “This Olympic Games, I wanted it to be for myself when I came in — and I felt like I was still doing it for other people,” she told reporters. “At the end of the day, we’re human too so we have to protect our mind and our body rather than just go out there and do what the world wants us to do.”

The movement among athletes to prioritize caring for their health above competing at all costs — and to share their mental health challenges openly — is emblematic of something bigger, many say. Between athletes like Osaka and Biles and ordinary Americans on social media, we’re seeing “more people speaking openly about mental health issues and how they’re impacting their work,” Betty Lai, a professor of counseling, developmental, and educational psychology at Boston College, told Vox.

Most visibly, that change is being driven by Black women in their 20s or younger — Osaka, Biles, Manuel, and Richardson are all under 25. “Black women have always had a sort of leading presence” when it comes to social change “in a way that they have not been historically given credit for,” Lindsey said. The young Olympians speaking out today about their need to care for themselves are “yet another example of how Black women are leading.”

It’s also not surprising that young people are at the forefront of a mental health revolution, since they appear more adept than their elders at recognizing mental health problems. Members of Gen Z in general report worse mental health than their elders, with just 45 percent saying their mental well-being was good or very good in a 2019 survey, compared with 56 percent of millennials. The pandemic has also taken an outsize toll on young people, with 62.9 percent of 18- to 24-year-olds reporting symptoms of anxiety or depression in a 2020 CDC survey, the highest of any age group.

Recently I decided to get on antidepressant medication. That was one of the best decisions I have made in a while. Since then I have been able to think with out the dark undertone in mind of nothing matters.
Thank you God for mental Health

— Noah Lyles, OLY (@LylesNoah) August 2, 2020

At the same time, people in Gen Z are also more likely than their elders to seek help for mental health problems, with 37 percent saying they had gotten therapy or other professional treatment in a 2019 survey, compared with 35 percent of millennials, 26 percent of Gen-Xers, and 22 percent of boomers.

This is likely because Gen-Zers have been exposed to more outreach on mental health by colleges and universities, as well as more awareness of these issues among parents, than older generations, Hibbs said. “They’ve been encouraged to talk about their feelings more,” she added. “There’s much more self-awareness of what’s going on for you.”

Peers and social media likely play a role, too — mental health has emerged as a popular topic on TikTok, for example, where professionals and ordinary people share experiences and advice. “I learn so much through TikTok,” said Fox, who launched Sad Girls Club as a way to provide mental health resources to underserved communities, especially women of color and young people. The rise of mobile therapy options like Talkspace may also have helped, allowing young people to get help on their phones without going into an office.

Overall, among younger Americans, “everyone’s kind of awakened” when it comes to mental health issues, Fox said. “It’s like, ‘We know this exists. Why are we living like this? We can’t live like this anymore.’”

The pandemic has brought mental health challenges — but also raised awareness

In addition to the influence of high-profile people, the pandemic has sparked a larger interest in mental health across society. In her work with school administrators on supporting students during this time, for example, Lai has noticed that “talking about mental health has really been at the forefront of people’s minds.”

“More people are raising these issues and are raising them earlier,” Lai explained. “Ten years ago, we really had to make the case that we should be thinking about mental health outcomes for kids after disasters.” Today, it’s more of a given.

And that awareness around mental health extends to adults as well, with more people recognizing the importance of caring for themselves during a time that has been traumatic for so many. The pandemic has led many people to reevaluate their lives, which can include prioritizing what’s best for themselves rather than living up to external demands. For some, that can extend to walking away from a job, with many of those quitting as part of the so-called Great Resignation doing so at least in part for their psychological well-being. Twenty-one-year- old Stephanie Becker, for example, told CNBC in June that she left her job at a dog boarding facility after the stress started to make her physically ill. “If [work] is affecting you so much, it’s not worth working yourself so hard and not feeling good that you aren’t able to enjoy yourself at home,” she said.

“This past year was definitely the hardest for so many people, but what’s coming out of it is very beautiful” when it comes to “the voices that are speaking up in support of mental health and taking time,” Fox said.

“I don’t want to be a gymnast,” she added, “but I’m also very inspired by someone actually ditching the biggest game or the biggest thing in their career to focus on their mental health.”

America has a long way to go to support people

Biles’s stepping away is especially inspirational since the stigma around mental health still prevents too many Americans from getting help. “The person who is ‘experiencing a mental health problem’ is sort of cast aside or thought to be different,” Lindsey said, when “the reality is, we all are struggling with mental health issues and challenges in our lives.” Black Americans can experience disproportionate stigma around getting help for mental illness, which may help contribute to the fact that just one in three Black people experiencing mental health problems ever get appropriate treatment. Men can also feel stigma around mental health issues, making them less likely than women to get help.

But even if Americans are ready to prioritize mental health, it does not mean they will come by support easily. As of 2019, 14.5 percent of non-elderly Americans lacked health insurance, and that number has likely risen during the pandemic. Black, Latinx, and Indigenous Americans are disproportionately likely to lack health insurance, as are young adults, making it especially hard for many people in these groups to get treatment for mental health needs.

Even with insurance, therapy can be unaffordable and therapists difficult to find. Moreover, the country needs more culturally competent therapists who understand the needs of people from historically marginalized groups, from Black Americans to LGBTQIA people, Lindsey said. Without such competence, therapy can end up “creating an experience whereby someone feels further villainized or marginalized because of how they identify.”

 Joe Giddens – WPA Pool/Getty Images
Prince Harry, Duke of Sussex, visits a community recording studio in in Nottingham, England, to mark World Mental Health Day on October 10, 2019.

Meanwhile, companies aren’t always understanding about their employees’ psychological well-being. “I’ve done a lot of consulting with brands and companies” whose employees’ mental health is suffering — “but then they have a full-on campaign on World Mental Health Day,” Fox said. It’s not enough just to talk about the issue on corporate social media channels. Companies need to let workers know that “there are no repercussions if you need a mental health break,” Fox said. That’s especially important since many workers today say they don’t feel comfortable asking for a mental health day.

And if people do decide to leave a job to care for their psychological well-being, there’s not always a safety net to help them. With health insurance tied to a job, many Americans risk losing access to therapy if they quit. Many say that bigger systemic changes, such as a universal basic income and universal health care, are needed to truly decouple people’s well-being from their jobs.

These are big asks for a country more accustomed to telling people to pull themselves up by their bootstraps no matter how bad they’re feeling. But the time may be ripe for a revolution in American mental health and greater well-being — and the generation represented by Biles and Osaka may be the best one to push for it. Young people today have “a more balanced ability to use the leverage of their generation to ask for changes,” Hibbs said, “and I think that will be healthier for an entire generation.”

A tractor trailer pulled up to a school carrying stacks of pre-made heat-and-
eat meal boxes. The superintendent is signing for the delivery: The spending cuts also meant fewer children were 
eligible for free or reduced lunch. To compensate, districts turned to privatized meal solutions, which typically meant 
cheap, processed foods. Teacher: What is this? Superintendent: It’s what we can afford.
A 
USDA worker flips through a report. The same superintendent with stacks of processed foods: Childhood obesity rates 
climbed. In 1990, the government tried implementing new dietary guidelines, but schools already had a supply of high-fat
 foods that were more cost-effective than nutritious options. USDA: Only 1% of schools are complying with the new 
guidelines! What happened to teaching healthy eating habits? Superintendent: What’s more important: nutrition, or 
feeding as many kids as we can?
One 
student is holding a tray with a fast food chicken sandwich on it, another is buying a soda from a vending machine: 
Convenience also played a role. Fast food suppliers contracted with schools, and vending machines started to appear in 
their halls and cafeterias. Student: If we don’t like the lunch options, we can buy stuff from here!
1% 
milk, veggies, turkey hot dogs: Health and nutrition remained a huge concern. The Obama administration attempted the 
next big overhaul: the Healthy, Hunger-Free Kids Act of 2010. This allowed for another USDA revision of school dietary 
standards and funding for free breakfast and lunch in high-poverty communities.
People lined up, protest-style: The new guidelines led to backlash from Republican lawmakers, dairy and fast food 
lobbyists, and even from the students themselves. Lawmaker: It’s another example of Washington’s regulatory excess! 
Parent and a lobbyist: Bring back our whole milk! Student: The meals aren’t big enough! I’m hungry again an hour later.
Children at a lunch table, looking disgustedly at their food: Many districts found that the healthier meals didn’t 
appeal to every student. Kids would rather throw out the meals than eat food they considered boring or unappetizing. 
Food Waste Warrior, a project funded by the World Wildlife Fund, estimated in 2019 that total food waste in schools 
costs as much as $1.7 billion per school year.
William J. McCarthy, professor of public health and psychology, University of California Los Angeles, holding up a 
quinoa salad: Several food service directors, while recognizing waste as a problem, say the answer is to wait it out. 
Research shows that children may need to be exposed to vegetables 10 to 12 times before they will eat them on their 
own.
Quinoa salad, lentil cutlets, pad Thai, vegetable curry: In Los Angeles County, that meant continuing to serve the 
vegetarian menus they had introduced as part of the Healthy Hunger-Free Kids Act.
A 
lunch person serving a slice of whole wheat pizza, panned out to show empty lunch room: When the district started seeing
 fewer and fewer students eating in their cafeterias, they tried healthier versions of lunch room standards. That didn’t
 work, either. Lunch person: Whole-wheat pizza, anyone?
Students eating tacos and pizza: So, they went back to serving some familiar items. This was typical of school 
districts across the country and was made easier by the Trump administration when, in 2017, they rolled back some of the
 sodium, milk, and whole-grain standards implemented by the Healthy, Hunger-Free Kids Act.

Now 
it’s 2021. Roughly 30 million children rely on the USDA’s National School Lunch Program. What does their typical school 
lunch look like?   Portion sizes have fluctuated and produce appears more frequently…but we still see some menu
 mainstays. Over the past century, the goal of the American school lunch hasn’t changed: have nutritious food be a 
regular part of a child’s day. But it still seems we’re falling short. Until we check all the boxes, some meals are most
 likely here to stay.

Sources:

Revenge of the Lunch Lady, HuffPo
An Abbreviated History of School Lunch in America, Time
School Lunch infographic, Advancement Courses
Revolution at the Table: The Transformation of the American Diet, Harvey Levenstein
PBS The History Kitchen: History of School Lunch
Is whole milk illegal in New York?, PolitiFact
No Appetite for Good-For-You School Lunches, The New York Times
USDA on NSLP

Ally Shwed is a cartoonist and visual journalist whose work has appeared in The Boston Globe, The Nib, and The Intercept. She lives in Belmar, NJ with her cartoonist husband and their two cats.

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