Protecting information privacy: challenges and opportunities in federal legislation

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Polly Turner-Ward

By NCL Google Public Policy Fellow Pollyanna Turner-Ward

On September 11, 2019, policymakers, industry stakeholders, and consumer advocates gathered at The Brookings Institution to discuss the pressing question of how to protect information privacy through federal legislation. Representing the National Consumers League was Executive Director, Sally Greenberg.

How did we get here?

To set the scene, panelists first discussed why there is consensus on the need for federal legislation to address privacy and data security. The Snowden revelations showed consumers how much of their data is out there, and they began to question whether companies could be trusted to keep their data safe from the government. More recently, in light of the Cambridge Analytica scandal and increasing instances of identity theft and fraud resulting from data breaches, consumers have begun to question whether companies themselves can be trusted with their data.

Businesses are worried about lack of consumer trust interfering with their adoption of digital products and services. For instance, parental refusal to provide consent to the collection and use of data regarding their kid’s academic performance prevents the personalization of their children’s learning experience. By providing individuals with greater privacy protections, businesses hope that individual participation in the digital economy will increase.

In response to consumer privacy concerns, a patchwork of state bills on privacy and data security are also popping up. Business claims to be overwhelmed by the idea of complying with these differing regulatory schemes, especially in light of the EU’s General Data Protection Regulation (GDPR), which has already moved many organizations to comply with privacy and data security rules. To support businesses and to regain U.S. privacy leadership, greater international operability is necessary.

What should federal legislation look like?

Each panelist set forth their idea of what federal legislation should aim to achieve. Intel drafted a privacy bill which includes various protections but which lacks a private right of action – that is, the ability to take wrongdoers to court if they violate privacy laws. If companies promise not to use your information in certain ways and then do it anyway, in violation of law, you should have the right to take them to court. NCL’s Sally Greenberg directed audience members towards the Public Interest Privacy Principles signed by thirty-four consumer advocacy and civil rights organizations. Advocating in favor of strong protections, strong enforcement, and preemption, and highlighting the importance of “baking data privacy into products and services”, she offered NCL’s vision of a strong, agile and adaptive national standard.

Panelists drew comparisons between this approach and that of the EU’s GDPR, but criticized the time-consuming and resource intensive nature of that legislation. They agreed that U.S. legislation should avoid being too prescriptive in the details. Rather than requiring documentation of policies, practices, and data flow maps, legislation should focus on high-level issues.

Breaking down these issues according to consensus and complexity, Cameron F. Kelly listed covered information, de-identification, data security, state enforcement, accountability, and FTC authority as solvable issues. Implementation issues, he said, include notice and transparency and individual rights (access, portability, right to object to processing, deletion, nondiscrimination). However, Mr. Kelly noted that disagreement clouds a number of complex issues. These relate to algorithmic transparency, algorithmic fairness, and data processing limitations (use restrictions). Until consensus is reached in these areas, disagreements about preemption and private right of action are unlikely to be resolvable.

Notice and Transparency 

While notice and transparency are important aspects of a comprehensive approach towards privacy and data security, it is difficult for consumers to process the volume of information contained in privacy policies. Consumers also often have little choice but to “agree” to services that are essential to everyday life. As such, legislators may wish to explore the extent to which a company may force an individual to waive their privacy rights as a condition of service. Consent should only have a limited role in relation to sensitive data uses, and companies should focus on designing user interfaces to enable meaningful consumer consent. Panelists criticized the California Consumer Protection Act (CCPA) for its lack of detail and for putting the burden on individuals to protect themselves. It was agreed that federal standards should move beyond notice-and-consent and put the burden back on businesses.

De-identification 

One panelist called de-identification the “secret sauce” to privacy. Preserving the utility of data while removing identification puts the focus on data processing harms. It is important to get de-identification right for valuable research purposes. However, de-identification is often not done well and confusion lurks around pseudonymization. This technique involves replacing personally identifiable information fields within a data record with artificial identifiers. As data remains identifiable using that technique, data security and privacy risks remain. Companies must be incentivized to effectively de-identify data, to not re-identify, and to contractually restrict downstream users from doing the same. To avoid conflating data security levels with pseudonymization levels, a universal and adaptable de-identification standard must be developed.

Data security 

Because data security is critical to privacy, panelists agreed that it is the foundation upon which privacy legislation should be built. Panelists warned against an overly prescriptive approach towards data security but suggested that the Federal Trade Commission (FTC) should offer more guidance. “Reasonable” data security depends upon the nature and scope of data collection and use. This affords organizations flexibility when adopting measures that make sense in terms of information sensitivity, context, and risk of harm.

However, determining data security standards according to the risk of privacy harm is difficult because “risk of privacy harm” is an unsettled and controversial concept. It was also debated whether “information sensitivity” should be used to determine the reasonableness of data security standards. Public Knowledge argued that all data should be protected in the same way because the distinction between sensitive and non-sensitive data is increasingly questionable. When data is aggregated and sophisticated technologies such as machine learning are applied, each and every data point can lead back to an identifiable person.

While use of off-the-shelf software should generally be considered reasonable, higher standards should apply to companies that are more aggressive in their data collection and use. Extending to third party processors and service providers, organizations must continually develop physical, technical, and legal safeguards. To ensure robust infrastructure to secure their data, they should run tests, impact assessments, and put resources towards data mapping.

Data processing limitations

In sectors ranging from education to healthcare, the use of data undoubtedly has the potential to help us solve many societal problems. However, data use is pervasive, and new and unpredictably bad outcomes are also possible. Consumers want data to be used in ways that benefit them, for data not to be used in ways that harm them, and for their data to be protected. However, information collection and sharing is largely unbounded. If Congress wishes to move beyond a notice-and-consent model and put the burden back on organizations that handle data, then the boundaries of how data should be collected, retained, used, and shared must be confronted. Without limitations, the high value of data will continue to incentivize organizations to collect and retain data for the sake of it. These practices increase cybersecurity and privacy risks on unforeseen levels.

Calling out data brokers, Intel’s David Hoffman stated that databases containing lists of rape victims are simply “unacceptable.” However, transfer restrictions are likely to be one of the hardest areas to reach consensus on. Use restrictions, which relate to what organizations can and cannot do with data at a granular level, may be approached by creating presumptively allowed and presumptively prohibited lists. Use and sharing could be presumptively allowed for responsible advertising, legal process and compliance, data security and safety, authentication, product recalls, research purposes, and the fulfillment of product and service requests. Meanwhile, use of data for eligibility determinations, committing fraud or stalking, or for unreasonable practices could be presumptively prohibited.

However, it is difficult to determine the standards by which a particular data use should be “green-lighted” or “red-lighted.” To determine if a data use is for a purpose related to that which a user originally shared data, factors may be considered such as whether the use is primary or secondary, how far down the chain of vendors processing occurs, and whether the processor has a direct or indirect relationship with the data subject. The FTC has done work to articulate “unreasonable” data processing and sharing, and the Center for Democracy and Technology’s Consumer Bill of Rights emphasizes respect for context (user expectations) by laying out applicable factors such as consumer privacy risk and information sensitivity.

However, “context” is difficult to operationalize. One option may be to grant the FTC rulemaking authority to determine issues such as which data uses are per se unfair, or which information is sensitive. The deception and unfairness standard has guided the FTC for decades. However, panelists were concerned about giving the FTC a blank check to use the abusiveness standard to deal with data abuses. Instead, the FTC could be given a clear set of instructions in the form of FTC guidance, legislative preamble, or written in detail in the legislation. If this approach is taken, it would be necessary to confront the difficult question of what harm legislation should seek to address. Because privacy injury is not clear or quantifiable, it is difficult to agree on the appropriate harm standard. A specific list of the types of injury – not an exhaustive list – resulting from data processing would give the harm standard substance, and algorithmic data processing ought to be directly confronted.

Because the purpose of data analysis is to draw differences and to make distinctions, the privacy debate cannot be separated from the discrimination debate. Intent to engage in prohibited discrimination is difficult to prove, especially with use of proxies. For instance, rather than directly using a protected characteristic such as racial heritage as a proxy to offer payday loans, an algorithm could use zip code or music taste as a proxy for race in order to decide who to advertise payday loans to. To provide clarity and to promote algorithmic fairness, existing discrimination laws could be augmented with privacy legislation by defining unfair discrimination according to disparate impact on protected classes (disadvantaged groups). Privacy legislation should ensure that data use does not contribute to prohibited discrimination by requiring risk assessments and outcome monitoring.

To increase consumer trust and to provide them with recourse when they suspect that they are the victims of unfair discrimination, legislation should directly confront algorithmic transparency and burden of proof. Consumers cannot be expected to understand the mechanisms that determine what advertisements they are presented with or how automatic decisions are made about them. However, organizations should not be able to escape liability by claiming that they do not have access to the data or algorithm necessary to prove discrimination claims.

Enforcement

Panelists agreed that State Attorney Generals need to be able to enforce the law and that the FTC requires increased resources and enforcement powers. As Congress cannot anticipate every possible scenario, it is appropriate to give the FTC narrow rulemaking authority, the authority to fine for first offences, to be able to approve codes of conduct, and to clarify guidance on how to comply with the law on issues such as de-identification. The FTC needs vastly more resources to be able to accomplish this oversight and enforcement role. The jury is out as to whether Congress will pony up.

Sally Greenberg described the importance of also including an option for private parties to bring class-action suits. However, there was disagreement between panelists about whether individuals should be able to privately enforce their rights where the government lacks the resources or will to act. David Hoffman highlighted evidentiary problems associated with the difficulty in proving privacy harms. To better serve the public, he argued in favor of the creation of a uniform standard with strong protections.

Preemption of state laws 

The objective of creating a consistent federal standard was emphasized as a key driving factor for industry for the creation of a federal bill. Not including preemption of state law is a kind of “deal-breaker” for industry. They claim that complying with a patchwork of fifty different data breach notification standards is hard today. It was suggested that states could be given a window of five years with no preemption to allow them to adapt and innovate, after which time the situation could be reviewed. Or the reverse – preempt for five years and sunset the federal law. These suggestions both have merit, but in the end, answering the questions of preemption and private right of action remain to be seen.

I’m going for the kids’ portion!

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With overweight and obesity stats in an upward trajectory, the National Consumers League and the Georgetown School of Business are partnering up for a survey on a simple topic: what do Americans know about portion sizes, calories of average foods, and how many calories we can eat each day without packing on the pounds? 

We have a health crisis in America. From 2015-2016, 39.8 percent of American adults were considered obese–which means the body mass index (BMI) measurements of more than 129 million of us are considered obese. The annual medical cost of obesity is estimated at $147 billion because heart disease, stroke, type 2 diabetes, and cancers are tied to obesity. What is particularly concerning is that more than a third of younger people, ages 20-39, are obese.  

In fact, the New York Times reported that roughly a fifth of our soldiers are obese! The military is trying to combat this problem by replacing sweet drinks with water and cutting out fried foods, but it’s not working. 

The United States Department of Agriculture’s Dietary Guidelines recommend that the average person should consume about 2,000 calories a day. Do most of us know that if you exceed 2,000 calories day regularly, you pack on the pounds? (That’s unless, of course, you’re getting a lot of calorie–burning exercise or have a great metabolism.) Is that number too high for many of us? (It is for me. If I eat more than 1,650 calories, I know I’m going to put on weight.) That’s what we want to find out with our research: what do Americans really know about this guideline? 

We will also be asking whether most Americans know how many calories are in average serving of common foods such as yogurt (150), hamburgers with bun (350), pizza (350 per slice), bagels (325), muffins (425), a 4-piece fried chicken dinner with all the fixings (850-1,200), a 30–oz. steak (1,400), a piece of cheesecake (650), a big chocolate chip cookie (450), and an ice cream cone (300-400.) 

Also, do Americans know what an average serving is? A Cheesecake Factory salad is not an average serving! Each of their salads have more than 1,300 calories. That’s too much for one meal. Unfortunately, restaurant serving sizes have increased a lot over the last several decades. 

Which brings me back to my headline–kids’ portions! I’ve begun sampling my local downtown DC upscale food spots popular with millennials like Roti, CAVA, Chopt. The custom is that you order a bowl of lettuce or spinach as a base and put lots of pretty healthy but also pretty caloric toppings, add a protein for a few bucks extra, and crowned with shredded cheese and salad dressing. When you’re done, you have a big portion and lots of good food but also lots of calories–albeit not from hamburger and fries but still, calories! 

So try the kids’ portion! They are cheaper by a third, a lot less food, a lot fewer calories, and completely filling. My CAVA kids meal had a small white bread (unfortunately) pita, yogurt spread, two small spicy meatballs, cucumber salad, tomato salad, three pieces of fried bread, and scoop of brown rice. In other words, a lot of food! I figured it was about 550 calories. Voila! A third of my 1,650 allowable daily intake of food. And I was stuffed. I’ll be trying other food outlets to check out the kids’ portions. And we recommend that other consumers do the same–helps to limit calories and prevent food waste when you’re eating out!

Boy jockeys in Indonesia risk injury and death

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Reid Maki is the director of child labor advocacy at the National Consumers League and he coordinates the Child Labor Coalition.

I didn’t quite believe my eyes when I saw the recent New York Times headline: “For Indonesia’s Child Jockeys, Time to Retire at 10, After 5 years of Racing.”  The story, written and photographed by Adam Dean, revealed that child jockeys in Indonesia’s island of Sumbawa as young as 5 are racing horses and getting hurt in the process. The cultural practice is entrenched and boy jockeys are getting younger each year. “In the late ‘90s, jockeys were usually aged from about 10 to 14 years old, but then we found the lighter jockeys to be faster, and now they are aged from about 6 to 10, Fahrir H.M. Noer, a deputy chairman of one of the races, told reporter Dean.

As an advocate who has followed child labor closely for 20 years, I was not surprised that young children might do something dangerous. More than one million children around the world are engaged in mining, which is extremely hazardous. We’ve seen photos of children in the Philippines who mine underwater, connected to very precarious breathing tubes. Children work with toxic chemicals in leather tanning facilities; they help break apart giant ships. Nearly half the 152 million children trapped in child labor perform hazardous child labor.

In this case, however, I was surprised that that children, 5 to 10, could be asked to control animals so large and fast—a task that requires well developed athletic skills. Dean’s stunning photos confirm that this phenomenon is happening:

Racing around the first bend. Adam Dean for The New York Times

Child jockeys, between ages 5 to 10, in a professional race on the island of Sumbawa in Indonesia in July.

The Child Labor Coalition has been posting these photos on Twitter (@ChildLaborCLC) and there has been almost no response from our 17,000 followers. Several tweets have elicited only one or two retweets each. There has been no horror decrying the practice–no expressions of concern for the little boys.  I don’t know why this is the case. Cleary, jockeying a horse is dangerous and these children are too young. Is the public confused because horse racing is a sport? Or does it feel that the use of children as jockeys is an embedded cultural practice in Indonesia and somehow acceptable?

Dean tells the story of Firmansyah, 8, who fell off his horse while racing and hit his head on a wooden railing. Fortunately, the boy’s injury did not seem to be as serious as feared.

Although horse racing officials in Indonesia defend the practice of using child jockeys as part of the culture and something the children want to do, some Indonesian advocates disagree. The Times story quotes Arist Merdeka Sirait, chairman of the National Commission for child protection, a nonprofit: “This is clearly child exploitation. The horses move so fast. The boys ride the horses with no proper protection. This is violence against children. As children, they cannot say no to their parents or whoever ordered them to ride the horse.”

This new report of child jockeys is not the first. We’ve known for a long time that the Persian Gulf nations used child jockeys—boys trafficked form Pakistan, Bangladesh and Sudan—to ride camels in races. For a time, there were reports that the boys were being replaced with robotic jockeys but that attempt appears to have been short-lived. In July 2002, Sheikh Hamdan bin Zayed Al Nahyan announced a ban on child jockeys under 15, but in 2010, Anti-Slavery International photographed violations of the ban. A report in FrontPage Mag in December of 2011 said that the “Camel jockey slave trade [is] still alive and well.” The report noted that some of the Persian Gulf’s boy jockeys in training were “starved, beaten and sometimes sexually abused.” Death and serious injury, as well as damaged genitals, may result from jockeying. The child jockeys in the Persian Gulf were also often victims of trafficking from other countries—something that doesn’t seem to be happening to the child jockeys of Indonesia.

The Indonesian jockeys wear masks on their faces. We can’t help but wonder if it is a deliberate attempt to obscure the riders’ faces so that race fans can ignore the fact that children are risking their lives for their pleasure.

An owner embracing his horse after a winning ride. Adam Dean for The New York Times

Check out this boy who is resting after an injury—he looks so young and fragile:

Imam Dudu, 8, resting after a fall. Adam Dean for The New York Times

And the facial injuries to this rider:

Firmansyah, 8, who fell from his horse the day before, getting ready for another race.

Isn’t it time for this dangerous practice to end?

Our gratitude to Adam Dean for breaking this story and for his stunning photos. Thanks to the New York Times for this powerful expose.

Happy belated Labor Day!

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I have an excuse for not writing a Labor Day Blog last week. I had a draft all written and then CNN ran a wonderful editorial with a very similar thesis. The gist was that without immigrants–many of whom are denied citizenship, pay taxes, and perform a vast number of jobs–this country couldn’t function. They build our skyscrapers, mow our lawns, take care of our children and parents, bus tables at our restaurants, drive our taxis, Lyfts, and Ubers, serve us at fast-food restaurants, and so much more. So, I’ll try a variation on my original theme.

All four of my grandparents were immigrants. My dad’s parents came over as children from Lithuania, and my mom’s were from Romania. They were poor and didn’t speak English. My maternal grandpa crossed the Atlantic in a ship in steerage (below the deck) with just a few bucks in his pocket. He worked as a delivery boy and went on to found a thriving company. Why did they choose America? To escape pogroms aimed at Jews, for freedom of religion, and for economic opportunity.

Sound familiar? These are precisely the reasons immigrants from Central and South America, Asia, and Africa seek refuge and, ultimately, citizenship in the United States.

Yes, my relatives came here legally, but the path to citizenship was easier at the turn of the 20th Century. You basically just needed to be healthy to be admitted. But that changed in the 1920s when anti-immigrant sentiments ran high. If my grandparents hadn’t emigrated, they likely would have been murdered by the Nazis–and I wouldn’t be here. That’s true for millions of Americans today.

Today’s immigrants have many more barriers thrown in their path. And why should they? They want what my family came for: economic and educational opportunity and to work hard while raising families without the constant fear of violence and poverty. To be sure, we need a sound immigration policy–that means screening those seeking to immigrate for criminal backgrounds or health concerns. But banning all but a trickle of certain “favored” immigrants is crazy and hurts both our economy and social fabric.

Whenever I hear virulent anti-immigrant rhetoric from the White House or elected officials, I want to ask, “didn’t your family immigrate here? Weren’t they seeking the very same things today’s immigrants want?” The answer, of course, is “yes.” That’s why proclamations like “build the wall” and “ban Muslims” are so offensive, unfair, and not at all in keeping with the famous words of Lady Liberty: “give me your tired, your poor, your wretched masses yearning to breathe free.” These are the words that should be the theme for celebrating Labor Day.

Developing an approach towards consumer privacy and data security

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Polly Turner-Ward

By NCL Google Public Policy Fellow Pollyanna Sanderson

This blog post is the first of a series of blogs offering a consumer perspective on developing an approach towards consumer privacy and data security.

For more than 20 years, Congressional inaction on privacy and data security has coincided with increased data breaches impacting millions of consumers. In the absence of Congressional action, states and the executive branch have increasingly stepped in. A key part of the White House’s response is the National Telecommunication and Information Administration (NTIA) September Request for Comment (RFC).

While a “Request for Comment” sounds incredibly wonky, it is a key part of the process that informs the government’s approach to consumer privacy. The NTIA’s process gathers input from interested stakeholders on ways to advance consumer privacy while protecting prosperity and innovation. Stakeholder responses provide a glimpse into where consensus and disagreements lie among consumer and industry players on key issues. We have read through the comments and in this series of blogs are pleased to offer a consumer perspective.

This first blog focuses on a fundamental aspect of any proposed approach to privacy and data security: the scope. Reflecting risks of big data classification and predictive analytics, one suggestion by the Center for Digital Democracy (CDD) was to frame the issues according to data processing outputs. This would cover inferences, decisions, and other data uses that undermine individual control and privacy. However, focusing on data inputs, there was consensus among many interested stakeholders that privacy legislation must cover “personal information.”

The Center for Democracy and Technology noted that personal information is an evolving concept, the scope of which is “unsettled…as a matter of law, policy, and technology.” Various legal definitions exist at the state, federal, and international level. The Federal Trade Commission’s (FTC) 2012 definition defines it as information capable of being associated with or reasonably linked or linkable to a consumer, household, or device. Subject to certain conditions, de-identified information is excluded from this definition. To help to address privacy concerns while enabling collection and use, many stakeholders agree that regulatory relief should be provided for effective de-identification techniques. This would incentivize the development and implementation of privacy-enhancing techniques and de-identification technologies such as differential privacy and encryption. Federal law to avoid classifying covered data in a binary way as personal or non-personal. An all-or-nothing approach requiring irreversible de-identification is a difficult or impossible standard.

In an attempt to recognize that identifiability rests on a spectrum, the EU’s General Data Protection Regulation (GDPR) excludes anonymized information and introduces the concept of pseudonymized data. These concepts demand federal consideration, having been introduced to United States law via the California Consumer Protection Act (CCPA). The law should clarify how it applies to aggregated, de-identified, pseudonymous, identifiable, and identified information. To be considered de-identified data subject to lower standards, data must not be linkable to an individual, risk of re-identification must be minimal, the entity must publicly commit not to attempt to re-identify the data, and effective legal, administrative, technical, and/or contractual controls must be applied to safeguard that commitment.

While de-identified and other anonymized data may be subject to lower privacy standards, they should not be removed from protection altogether. In their NTIA comment, the CDD highlights that third-party personal data, anonymized data, and other forms of non-personal data may be used to make sensitive inferences and to develop profiles. These could be used for purposes ranging from persuading voters to targeting advertisements. However, individual privacy rights may only be exercised after inferences or profiles have been applied at the individual level. Because profiles and inferences can be made without identifiability, this aspect of corporate data practice would therefore largely escape accountability if de-identified and other anonymized data were not subject to standards of some kind.

This loophole must be closed. Personal information should be broadly defined to address risks of re-identification and to capture evolving business practices that undermine privacy. While the GDPR does not include inferred information in its definition of personal information, inspiration could be taken from the definition of personal information given by the CCPA, which includes inferred information drawn from personal information and used to create consumer profiles.

Our next blog  will explore “developing an approach for handling privacy risks and harms.” In its request for comment, the NTIA established a risk and outcome-based approach towards consumer privacy as a high-level goal for federal action. However, within industry and society, there is a lack of consensus about what constitutes a privacy risk. Stay tuned for a deep dive into the key issues that arise.

The author completed her undergraduate degree in law at Queen Mary University of London and her Master of Laws at William & Mary. She has focused her career on privacy and data security.

Trump’s fuel economy rollbacks: a loss for workers, consumers, the environment

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headshot of NCL LifeSmarts intern Alexa

By NCL LifeSmarts intern Elaina Pevide

Cars are baked into American life – around 83 percent of households own one – so any change in the cost or availability of gasoline affects an enormous group of Americans.

Although most of us have grumbled about the cost of gas at some point—and memories of the Great Recession and its dramatic spikes in gas prices are enough to send shivers down the spine of many Americans—some Americans are affected more than others by increases. Did you know that low-income households spend twice as much of their income on gasoline as other Americans? For this group, fuel economy is an especially close-to-home issue.

The Obama Administration made significant headway in improving fuel economy standards and fostering American innovation when it announced the One National Program in 2010. That program unified the Environmental Protection Agency’s (EPA) greenhouse gas emission standards with the fuel economy standards set by the National Highway Traffic Safety Administration (NHTSA). This initiative set long-term goals for fuel efficiency aiming at Model Year 2025, when vehicular CO2 emissions were slated to be reduced by half. The One National Program was a win-win for consumers and the environment. Obama’s initiative would have made the American automotive industry a world leader in environmentally-friendly innovation while also giving the U.S. a huge advantage in a turbulent global economy adapting to the threat of climate change.

Perhaps the greatest benefactor of Obama’s One National Program was the average consumer. Doubling fuel economy means that consumers get twice the bang for their buck at the pump. These benefits would eventually help the less affluent the most, many of whom own used vehicles. Low-income secondhand car owners would pay little of the front-end cost of innovation, but would still save hundreds of dollars on gas on later model used cars.

During the last 7 months of the Obama Administration, EPA Administrator Gina McCarthy determined that, given the success of the program thus far, the program would maintain its initial goal of a 54.5 mpg fuel economy standard by 2025. Unfortunately, the Trump administration did not take long to backpedal on this dramatic win for consumers, workers, and the environment.

On March 15, 2017, then-EPA Administrator Scott Pruitt and Department of Transportation Secretary Elaine Chao reopened the evaluations. Two weeks later, they provided their disappointing and controversial results: the Trump EPA did not believe in the efficacy of the One National Program. By August, NHTSA and the EPA announced a new rule, called the Safer Affordable Fuel-Efficient (SAFE) Vehicles Rule, the euphemistically-named rollback that handed the automotive industry a big win. The federal actions revoked the ability of California and 13 other states to enforce their own higher standards for environmentally-friendly vehicles.

The SAFE Vehicles Rule is misnamed. The Trump Administration is, in our view, mistaken in its assertions that the freeze and rollback of fuel economy standards will benefit anyone. An analysis by the Consumer Federation of America found that the program has already saved consumers $500 billion, with an extra $400 billion to be found in health, macroeconomic and environmental benefits. Trump’s plan will end these savings and cost the average American household $4,500. We know that fuel efficiency creates a healthy economy, environment, and, thus, a healthier society. Sadly, the current Administration has thrown that out the window.

Global warning and climate change are urgent problems. According to an article from Union of Concerned Scientists, cars and trucks account for nearly one-fifth of all U.S. emissions, emitting around 24 pounds of carbon dioxide and other global-warming gases for every gallon of gas. About five pounds comes from the extraction, production, and delivery of the fuel, while the great bulk of heat-trapping emissions–more than 19 pounds per gallon–comes right out of a car’s tailpipe.

Improving vehicular fuel efficiency is crucial to the future of the United States. High fuel economy standards reduce our need for foreign oil and encourage American companies to keep up with the green innovation around the world. As Europe, China, and other regions address global warming and reducing auto emissions, America is rolling back the clock. As a nation heavily reliant on cars for daily life, we call upon President Trump, his federal appointees, and the auto industry, to reverse these foolhardy decisions and demand improved fuel economy–to set us back on track towards the goals we were on course to meet just a few years ago.

Elaina Pevide is a student at Brandeis University where she majors in Public Policy and Psychology with a minor in Economics. She expects to graduate in May of 2020.

Calling an end to the health and humanitarian crisis at the border

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Nissa ShaffiFlorence Kelley, first general secretary of the National Consumers League (NCL), was a pioneer in progressive social reform during a time in our nation’s history that was defined by mass immigration and egregious health violations. 120 years later, we bear witness once again to the unconscionable transgressions occurring in migrant detention centers across the border with regards to immigrant rights and access to health care. 

At this very moment, people who are exercising their legal right to seek asylum, according to international and U.S. law, are being systemically dehumanized. The atrocities occurring at our border completely tarnish the social protections that NCL has historically fought to solidify.

On July 10, the House Oversight Committee held a hearing to examine the humanitarian crisis at the border. The investigation followed the release of a July 2 report by the Office of Inspector General (OIG) detailing the dangerous and unsanitary conditions migrant detainees are experiencing at Custom and Border Patrol (CBP) and Immigration Customs Enforcement (ICE) facilities.

Images of children sprawled across cold concrete floors in overcrowded holding cells, wrapped in nothing but flimsy mylar blankets, prompted members of Congress, immigration lawyers, and physicians to visit various migrant detention centers throughout Texas to witness the matter firsthand.

Visitors noted a stench that could be detected immediately upon entry into the facilities, which was attributed to detainees being sardined into holding cells, in conditions that have been classified as inhumane and in violation of international law. A majority of detainees have been denied access to basic toiletries like soap and toothbrushes to help them maintain their hygiene. Additionally, individuals have not been able to shower in weeks, are sleep deprived, and are housed in frigid temperatures in rooms that have been given the apt moniker of the “ICE Box.” Many migrants have claimed that they were wearing the same soiled clothes that they wore during their long passage into the country.

These facilities were not designed to house migrants for prolonged detainment. Regulations prohibit the detention of detainees for longer than 72 hours, yet OIG reported that migrants had been held indefinitely, some even as long as several weeks. The unsanitary conditions prevalent in the detention centers have resulted in outbreaks of the flu, lice, shingles, scabies, and chickenpox. The processing centers in the facilities are housed beyond infrastructural capacity, leading border officials to take desperate measures to hold detainees in cages and under overpasses. These dangerous conditions will inevitably advance the spread of disease, endangering the lives of detainees as well as the general public who will come into contact with CBP and ICE agents.

These facilities are privatized, for-profit migrant detention centers that function outside the purview of federal oversight and accountability. Shareholder interests call for incentivized cuts to medical staffing, which as a result, has led to cruel and negligent practices that have encouraged the spread of disease, the proliferation of trauma, and the violation of human rights.

NCL calls on Congress to address the harrowing health and human rights violations taking place at our borders. NCL strongly advocates for a principled, comprehensive immigration reform that treats all immigrants with respect and dignity, no matter their legal status in the United States. NCL’s immigration policy advocates to:

  • keep families together;
  • ensure a humane pathway to citizenship and builds upon the success of Deferred Action for Childhood Arrivals (DACA) to incorporate young immigrants into mainstream society; and
  • ensure effective enforcement that protects our borders, fosters commerce, and promotes the safe and legitimate movement of people and goods at our ports of entry.

To learn about NCL’s immigration policy, click here.

The National Consumers League calls on lawmakers to work together to enact humane immigration policy reform that genuinely encompasses the promise of American values. Congress must act swiftly and in the best interest of migrants detained to collectively bring an end to this humanitarian crisis.

No more surprises: Congress and patients alike sick of surprise billing

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headshot of NCL Health Policy intern Alexa

By NCL Health Policy intern Alexa Beeson

This July, the House Energy and Commerce’s Health Subcommittee passed the No Surprises Act (H.R. 3630) to protect patients from surprise billing. The Senate Health, Education, Labor and Pensions Committee also passed its companion to address surprise billing, the Lower Health Care Costs Act (S.1895). These bills were being considered after a press conference at which President Trump called for reform in surprise billing.

Stakeholder witnesses at the House hearing this June on H.R. 3630 included patient, provider, and insurance payer groups. Reimbursement models were discussed at length, but the unifying theme was that patients should be held harmless in surprise billing situations.

Surprise billing happens mostly in a small subsect of out-of-network providers; the patient has no idea about who’s in or out of network. Some professionals are out-of-network technicians subcontracted by an in-network facility, such as a last-minute anesthesiologist switch for a surgery, or any other non-disclosed provider. To get reimbursed for their services, providers send a bill to the patient for whatever wasn’t covered by the insurance company.

Surprise billing also occurred among patients who should receive reduced prices for care. Johns Hopkins Hospital filed suit on more than 2,400 patients in the last decade, collecting the equivalent of 0.03 percent of its operating revenue. Some of these patients were never told about their right to charity care, and many who qualify never received a discounted rate. These bill collections are inconsequential for Johns Hopkins but could bankrupt a patient.

Legislation to address balance or surprise bills will protect patients, ensuring they will only have to pay in-network rates for out-of-network emergency care. This will help patients avoid bills that can set them back, sometimes, hundreds of thousands of dollars. Although surprise bills only come from a small portion of providers, 1 in 7 insured adults will receive a surprise medical bill from an in-network hospital. The Kaiser Family Foundation found that 70 percent of such patients were not aware that the provider was out-of-network when they received the care.

Panelist Sonji Wilkes, a patient advocate, presented testimony about her struggle with a surprise bill sent after the birth of her son, who was diagnosed with hemophilia. That child was treated by a charitable out-of-network hematologist who did not charge them for her services. However, the NICU that observed the boy was subcontracted to a third-party provider. This meant that the NICU was out-of-network. The Wilkes were sent a $50,000 bill by the hospital that still haunts them 15 years later.

Thomas Nickels, the executive vice president of the American Hospitals Association, claimed that fixed reimbursement rates, such as a median benchmark or percentage of the Medicaid reimbursement value, would disincentivize insurers from maintaining adequate provider networks. Nickels supported the Alternative Dispute Resolutions method, which involves baseball-style arbitration where providers and payers settle on reimbursement value on a case-by-case basis.

Jeanette Thornton, a senior vice president at America’s Health Insurance Plans, argued that the New York model of baseball-style arbitration would create immense clerical burden, resulting in lost time and greater administrative costs. She argued the arbitration reimbursement model would raise costs for patients in the end. Instead, she advocated for the government-dictated fixed reimbursement rates.

Both versions of the bill call for a benchmark to resolve payments between insurance plans and out-of-network providers. This benchmark says health plans would reimburse providers with the median in-network rate already contracted within specific geographic areas. The House bill contains binding arbitration as a fallback in case either the provider or payer decide the payment was an unfair price.

The National Consumers League supports Congress’ tackling of this issue of surprise or balance billing. NCL has taken no position on how these bills are settled between the payer and provider, as long as patients are protected from outrageously expensive bills they can never hope to pay and were never anticipating. In addition, medical debt is the greatest contributor to consumers declaring bankruptcy, and balance billing is a contributor to that troubling consumer issue. The bottom line is that a bill for medical services should never cause bankruptcy, and a patient should never have to choose between medical treatment and food or housing. We are hopeful this issue will be resolved during this Congressional session.

Alexa is a student at Washington University in St. Louis where she studies Classics and Anthropology and concentrates in global health and the environment. She expects to graduate in May of 2020

Finally, regulation where it’s needed: seven new bills with a focus on consumer safety

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By NCL Health Policy intern Alexa Beeson

This June, the House Energy and Commerce’s Consumer Protection and Commerce Subcommittee held a hearing in which they considered seven different bills concerning product safety. The hearing was motivated by a commitment to removing life-threatening products from the market, which–somehow–remain in circulation for purchase. Most notably, the bills address furniture tip-over (H.R. 2211), crib bumpers (H.R. 3170), inclined infant sleepers (H.R. 3172), and fire safety (H.R. 806).

The witnesses included Will Wallace, a manager at Consumer Reports; Crystal Ellis, a devastated mother and founder of Parents Against Tip-Overs; Chris Parsons, the president of Minnesota Professional Fire Fighters; and Charles A. Samuels, a member of Mintz, a law firm that represents manufacturers of some of the products implicated in various accidents.

Ellis was especially moving. She lost her son, Camden, five years ago on Father’s Day in a tip-over accident involving an unstable dresser. The day she testified would have been her son’s 7th birthday. Camden’s death and the deaths of many others in tip-over accidents catalyzed the founding of Parents Against Tip-Overs, which advocates for children who were victims of unsafe consumer products. Ellis recounted the devastating loss of her son and pleaded that the committee act to protect other children from suffering the same fate. Ellis urged the committee to evaluate the standards set forth by the Consumer Product Safety Commission (CPSC), which are not regulated enough to prevent tip-overs.

Furniture tip-over is a more widespread problem than you might realize. According to the CPSC, an estimated annual average (2014-2016) of 9,300 children ages 0-19 were treated in the emergency department for furniture tip-over injuries, not including televisions or appliances. If you include television and other appliances, which were not covered in the bills at the hearing, the number jumps to more than 15,000. From 2000-2016, furniture tip-overs killed 431 children.

These deaths could have been prevented by enforcing stricter safety regulations. The current CPSC regulations do not demand mandatory safety standards for tip-over prevention. The product manufacturing industries are only held to a voluntary standard. Additionally, products under 30 inches tall are exempt from any such safety regulations. However, as found by a Consumer Reports investigation, shorter furniture still causes major tip-over accidents.

The Stop Tip-overs of Unstable, Risky Dressers on Youth (STURDY) Act would seek to change these standards. The bill would require the CPSC to mandate manufacturers to produce more rigorous testing of their products; to perform more “real-world” testing and to revise consumer warning requirements, ensuring higher standards of product safety and transparency.

The National Consumers League thanks the Consumer Protection and Commerce Subcommittee for taking measures to hold industry accountable with regards to product safety standards. One positive message that everyone can take away from this hearing is that times are changing. Industry will be held accountable, and consumers will be protected. It looks like the time for the CPSC to take charge in handling consumer safety and protection–instead of letting industry set its own rules–is just around the corner, to paraphrase Rep. Frank Pallone (D-NJ).

Alexa is a student at Washington University in St. Louis where she studies Classics and Anthropology and concentrates in global health and the environment. She expects to graduate in May of 2020

NCL continues to advocate for breastfeeding mothers

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By NCL Health Policy intern Alexa Beeson

This July, Dutch airline KLM found itself in the middle of a breastfeeding snafu: “public decency” vs. “natural practice.” A mother wrote about the airline with a Facebook post describing how a KLM flight attendant asked her to cover up if she wanted to continue nursing her baby. The new mom said that, while contacting KLM to file a complaint, she was told that she should “be respectful of people of other cultures.”

Other moms went on Twitter to ask KLM about its official breastfeeding policy. KLM responded with: “Breastfeeding is permitted at KLM flights. However, to ensure that all our passengers of all backgrounds feel comfortable on board, we may request a mother to cover herself while breastfeeding, should other passengers be offended by this.” The National Consumers League is disappointed.

New moms should be encouraged, supported, and protected to breastfeed. It has so many health benefits for mom and baby including the prevention of allergies in babies and the reduced risk of developing certain forms of cancer in moms.

A few years back, NCL posted a Breastfeeding Mothers’ Bill of Rights, that included the following:

  • A mother should have the right to breastfeed her child in any public or private establishment where they both are legally present, without harassment or discrimination of any kind,
  • No establishment should enact a rule that prevents breastfeeding a child, and
  • Breastfeeding mothers should not be told to only do so in a discreet manner.

Breastfeeding is a safe, healthy, and natural act, through which mothers provide nourishment to their children. NCL stands with mothers wishing to express milk whenever needed, regardless of the presence of their child. In no way should breastfeeding ever be considered lewd, immoral, or indecent–you are feeding your baby! That has nothing to do with sex.

Memo to KLM: check with your lawyers. Both the United States and the Netherlands protect public breastfeeding. All 50 states have laws that allow breastfeeding in public or exempt breastfeeding from public decency laws. In the Netherlands, there are no specific laws regarding public breastfeeding, but it is widely socially accepted. Why then, on a flight from San Francisco to Amsterdam, should KLM be able to prevent a woman from breastfeeding?

Reading replies to this tweet is a happy reminder that people do, in fact, support a woman’s right to breastfeed in public. Many people were upset that KLM considered breastfeeding an offensive act. Others satirically asked whether KLM would force an adult to cover his head if his eating “offended” another passenger. A few people questioned why a woman needs permission from an airline to feed her child. KLM themselves called breastfeeding “the most natural thing in the world,” yet still uphold their policy of having the right to discourage mothers from breastfeeding.

No mother should never feel uncomfortable or judged by another while feeding her child or expressing milk. KLM’s policy shows they would rather cater to someone who is “offended” by the most basic act of feeding one’s child; that is wrong. KLM–you must do better! And all airlines should publish affirmative policies supporting breastfeeding. Women and their babies need our support.

Alexa is a student at Washington University in St. Louis where she studies Classics and Anthropology and concentrates in global health and the environment. She expects to graduate in May of 2020