Written by Amy Hoover, FLPC summer intern and Cottage Food Laws in America report co-author
An innovative bill on the verge of being signed into law in California could create a new frontier in the state laws that allow cooks to sell food made in home kitchens. Building on the success of cottage food laws, which allow food producers to sell certain low-risk homemade foods, this new law would open up sales opportunities for entrepreneurs selling a wider array of foods, including hot meals, made in their homes.
Cottage food laws are now commonplace across the United States. In the timespan between FLPC’s 2013 report on cottage foods and our new report released last month, cottage food laws passed in seven additional states and the District of Columbia, bringing the total of states with cottage food laws to 49. Furthermore, many states have updated their cottage food rules to expand the types of products or scale of production that is allowed under their cottage food provisions.
Although cottage food laws vary tremendously from state to state in their details (just check out our 50-state appendix for an interesting snapshot of federalism at work), most have traditionally followed a fairly standard basic structure. These laws typically allow home cooks to sell limited types or categories of foods that pose low food safety risks when held at room temperature, subject to certain sales limits. Higher-risk food items that require time and temperature control for safety, such as meats, cooked vegetables, and premade meals, are not allowed under these cottage food laws.
All cottage food laws followed this basic pattern until 2015, when Wyoming broke away from the typical cottage food law with its food freedom law. In contrast to other cottage food laws, Wyoming’s law removes almost all limitations on what types of foods home producers can sell. It requires only that cottage food producers sell directly to “informed end consumers” for home consumption. Within these limits, home food producers’ actions are not regulated by the state. Since Wyoming’s food freedom law passed, North Dakota and Illinois have also passed laws based on this model (although with more constraints than Wyoming’s law).
Another new frontier in homemade foods is now on the horizon in California, where a coalition of food advocates is on the verge of securing enactment of A.B. 626. If (or at this point, perhaps when) A.B. 626 becomes law, in addition to making low-risk foods under the state’s existing cottage food law, home producers will have another, more expansive option: the proposed law would allow home cooks to sell almost any foods, including hot prepared meals. Within the proposed law’s oversight and food safety framework, home cooks in California would be able to make and sell foods that need time and temperature control for safety—exactly what almost every cottage food law forbids.
Although both California and Wyoming have sought to broaden the types of foods that home producers can sell, A.B. 626 innovates in a very different way from Wyoming’s food freedom law. Wyoming’s law exempts homemade food producers from any state oversight. In contrast, the California bill allows home cooking but subjects “microenterprise home kitchens” to a new set of regulations. The bill’s permitting and licensing requirements (more than for cottage food producers; less than for commercial food operations) are designed to create a new avenue of economic opportunity for home cooks while ensuring food safety.
Alongside its innovative elements, A.B. 626 retains several of the features that have helped cottage food laws successfully balance food entrepreneurship and food safety. It allows only direct sales, on the theory that a personal interaction between cook and consumer can create a relationship that reduces the need for government oversight. It also limits annual gross sales, number of meals sold, and number of employees, meaning that only micro-scale operations are allowed under the proposed law. But even these small operations can help home cooks make some extra money and test the market before they scale up and face the costs of complying with the full array of food safety regulations for commercial operations.
With overwhelming bipartisan support, A.B. 626 is well on its way to becoming law. It passed California’s Assembly on January 29th, and just recently, on August 28th, it passed California’s Senate. Now, Governor Jerry Brown has until September 30th to sign the bill into law. Its enactment can provide a new model for homemade food sales and may well set the stage for future shifts in cottage food laws nationwide.
In California and other states across the nation, food entrepreneurs, lawmakers, and regulators are innovating and experimenting to open up new opportunities for safe and delicious homemade foods. To learn more about the recent trends in cottage food laws nationwide, check FLPC’s new definitive guide, Cottage Food Laws in the United States.
Prevention magazine recently wrote an article full of ideas to reduce food waste, quoting FLPC Director Emily Broad Leib in the article.
Give milk the sniff test
Think the “sell by” or “use by” dates are there to prevent illnesses? Nope. “They’re not based on any safety test,” says Emily Broad Leib, director of the Food Law and Policy Clinic at Harvard Law School. “Most are just manufacturers’ suggestions for quality, and they vary widely.” If you regularly pitch things whose dates say they’ve just expired, you’re probably throwing away foods that are perfectly fine to eat. Still nervous? Check the USDA’s FoodKeeper app to double-check: It tells you how long various foods typically last.
Originally published by Stateline for Pew Charitable Trust on September 7, 2018. Written by Marsha Mercer.
Half a century after Americans began fighting hunger with monthly food stamps, the nation’s physicians and policymakers are focusing more than ever on what’s on each person’s plate.
In the 21st century, food is seen as medicine — and a tool to cut health care costs.
The “food is medicine” concept is simple: If chronically ill people eat a nutritious diet, they’ll need fewer medications, emergency room visits and hospital readmissions.
The food is medicine spectrum ranges from simply encouraging people to plant a garden and learn to cook healthfully, as state Sen. Judy Lee, a Republican, does in North Dakota — “We don’t do policies about gardening,” she said — to an intensive California pilot project that delivers two medically tailored meals plus snacks daily and offers three counseling sessions with a registered dietitian over 12 weeks.
The California Legislature last year became the first in the nation to fund a large-scale pilot project to test food is medicine. The three-year, $6 million project launched in April will serve about a thousand patients with congestive heart failure in seven counties.
“The state puts a huge amount of money into health care, and one of the biggest costs is medication,” Assemblyman Phil Ting, a Democrat and chairman of the Assembly Budget Committee, said in an interview. “So the hope is people will live longer and this project will also reduce the need for medication.”
The food is medicine concept has been around for a while. Since the 1980s, nonprofits such as Project Open Hand in San Francisco, Community Servings in Boston, God’s Love We Deliver in New York and MANNA or Metropolitan Area Neighborhood Nutrition Alliance in Philadelphia have provided medically tailored meals for patients with HIV, diabetes, cancer and heart disease. They are largely funded by donations and grants.
Seeing the programs’ successes, some states are taking a larger role. Massachusetts is developing a food is medicine plan with a goal of integrating programs scattered around the state so more residents can benefit. Legislative policy proposals are expected next spring.
Food is medicine goes beyond traditional advice to eat more fruits and vegetables. Projects pay for people to purchase produce and offer nutrition counseling and cooking classes, so they’ll know which foods to choose or avoid and how to prepare them. For example, watermelon is healthy for some, but not for a diabetic.
On the local level, a community garden managed by a teenager in Sylvester, Georgia, aims — with the help of the local hospital — to improve the health of the town in the nation’s “stroke belt.”
Physicians in a dozen states write “prescriptions” for fruits and vegetables at farmers markets and groceries — scripts that can be exchanged for tokens to buy produce.
“Food is medicine is an idea whose day has arrived,” said Robert Greenwald, faculty director of the Harvard Law School’s Center for Health Law and Policy Innovation, one of the experts who testified in January at the launch of the congressional Food is Medicine Working Group, part of the House Hunger Caucus.
The Senate version of the farm bill includes Harvesting Health, a pilot project to test fruit-and-vegetable prescriptions. It’s modeled on work by Wholesome Wave, a Bridgeport, Connecticut, nonprofit that works with health centers in a dozen states where doctors write prescriptions for produce.
If enacted, the federal government would spend $20 million over five years on grants to states or nonprofits to provide fruits and vegetables and nutrition education to low-income patients with diet-related conditions.
The Supplemental Nutrition Assistance Program, the food stamp program known as SNAP, helps reduce food insecurity for 39.6 million participants, but studies do not show SNAP improves nutrition. Instead, there seems to be a correlation between long-term food stamp participation and excess weight gain.
Poor diet was No. 1 of 17 leading risk factors for death in the United States in 2016 — a higher risk than smoking, drug use, lack of exercise and other factors, according to “The State of US Health,” a comprehensive report by a team of academics published in the Journal of the American Medical Association in April.
Dr. Kumara Sidhartha, an internal medicine specialist and medical director at Emerald Physicians on Cape Cod, Massachusetts, conducted a prescription study with Medicaid participants in 2016 and 2017. In his study, he wrote prescriptions or vouchers for one group to buy $30 in produce a week at the farmers market, and gave another $30 in gasoline vouchers a week — for 12 weeks. Both groups received cooking classes and nutrition counseling.
Twenty-four people completed the program, and those who received the fruit and vegetable prescriptions showed improvements in risk factors for chronic disease — better body mass index, total blood cholesterol, LDL cholesterol, blood glucose and hemoglobin A1c, Sidhartha said.
“Patients and physicians are so used to the physician writing prescriptions for procedures and pills,” he said. “This changes the health care culture of how the prescription is used.”
Proponents of the California project hope it will demonstrate the cost-effectiveness of including medically tailored meals as an essential health benefit covered by Medi-Cal, California’s Medicaid program.
“This is potentially transformative because the health care system has been designed to cover acute services, and not many prevention programs are covered,” said Dr. Hilary Seligman, an associate professor at the University of California-San Francisco, one of two physician researchers who will evaluate the project by tracking participants’ medical records.
“For someone with congestive heart failure, their lives depend on their capacity to eat a lower salt diet,” Seligman said. “Making the food as appealing as possible is very important.”
Some legislators are skeptical about government moving into new food delivery systems.
“We need to feed the children who are hungry now. We need the backpack programs in school, the free and reduced-price breakfast and lunches to make sure that nobody is hungry today,” said North Dakota’s Lee, chairwoman of the state Senate Human Services Committee, at a food is medicine session at the National Conference of State Legislatures (NCSL) Hunger Partnership conference in July.
“But then we need to take those same children and help them learn how to do those things for themselves,” Lee said. “Let’s have a short-term solution: Let’s feed people. And then let’s have a longer-term solution: Help them feed themselves.”
Everyone in her state could have a garden, even apartment-dwellers, and they can learn to cook, she said, adding that cooking is a skill that’s been lost since schools there dropped home economics.
“Kids can learn and a parent can learn how to make a meal,” Lee said in an interview. “I’d rather figure out a way to give them cooking lessons with food. We’re not helping children become functional adults by giving them three meals a day.”
It’s not government’s job to provide every meal, she said, adding, “That’s the good news about North Dakota, compared with the Northeast and California.”
Georgia state Sen. Renee Unterman, a Republican and chairwoman of the state Senate Health and Human Services Committee and co-chairwoman of the NCSL hunger partnership, suggested at the food is medicine session that a community garden with a medical purpose in her state — and started by a child — could be a model.
Village Community Garden manager Janya Green was 12 when she started on the community garden as her 4-H Club project three years ago on 5 acres donated by the town of Sylvester, population 6,000, about 170 miles south of Atlanta. Anyone can pick free vegetables and fruit whenever they like. The garden features cabbage, carrots, kale, okra, bell peppers, squash, sweet potatoes, blackberries, blueberries, muscadine grapes and even bananas. Herbs are next.
A pond is stocked with fish, so residents can reel in healthy protein as well. A local county commissioner gave lumber for a 20- by 60-foot stage.
Phoebe Worth Medical Center installed an outdoor kitchen in the garden for chef-taught cooking classes. Darrell Sabbs, governmental affairs specialist at the medical center, hopes researchers from Emory University or the University of Georgia will study the health statistics of the neighborhood and gauge the garden’s health effects.
Dr. Marilyn Carter, an internal medicine physician who also trained as a pharmacist, lives in Sylvester and volunteers at the garden. She and a nutritionist wrote up health benefits of the produce for signs that will help people make smart choices.
“We’re in the stroke belt,” Carter pointed out, adding that many of her patients have heart disease and diabetes. People eat a typical Southern diet of fried foods and foods out of boxes that are high calorie and high fat, she said.
“I want people to know, ‘If I eat more kale and less white rice, my blood pressure will be better,’” she said. Her name for the garden: the Farmacy.
The Harvard Law School Food Law and Policy Clinic is welcoming a new clinical fellow to the team.
Brian Fink joins the clinic in September 2018 as a Clinical Fellow. Brian was the Farm and Food Legal Fellow at Yale Law School. In that position, Brian oversaw the launch of a legal services program that connects income-eligible farmers and food entrepreneurs to pro bono attorneys. Also while at Yale, Brian worked closely with students on legal and academic projects related to food-system matters.
During law school, Brian worked on agricultural, food, and environmental issues as a fellow at the Resnick Center for Food Law and Policy and as a legal volunteer at the Sustainable Economies Law Center. He earned his J.D. from UCLA School of Law, where he was an editor of the UCLA Law Review and president of the Food Law Society, and his B.A. in Journalism from University of Washington.
The Harvard Law School Food Law and Policy Clinic (FLPC) announces a new report, Cottage Food Laws in the United States. Building on its 2013 report, FLPC’s new report examines trends in cottage food laws and provides recommendations to strengthen these laws that allow food entrepreneurs to sell their homemade foods. FLPC has found that since 2013, several new states now allow cottage foods, and many states have updated their cottage food rules to expand the types of products or scale of production that is allowed under their provisions.
Under the laws in every U.S. state, food generally must come from regulated and inspected food establishments. In recent years, however, almost every state has created exceptions to these requirements for certain “cottage foods” (homemade low-risk foods such as baked goods, jams, and granola). These laws balance food safety concerns with local business development by allowing home cooks to make and sell certain low-risk foods without undergoing the full inspection and other regulatory requirements of certified kitchens.
Currently, laws in forty-nine states and Washington, D.C. allow for cottage food sales, but these laws vary widely as to what types of foods, producers, and sales they allow. Cottage Food Laws in the United States offers a primer on cottage food laws and their function in our state and federal food safety systems. It also documents and explains trends in the differences between states’ cottage food laws regarding:
The types of foods that may be sold;
Where those foods may be sold;
Registration, licensing, permitting, or inspection requirements;
Labeling requirements; and
Tiered systems for different types of foods, producers, or sales.
Cottage Food Laws in the United States also includes recommendations to strengthen cottage food laws. Key recommendations include making cottage food laws easier for producers to find and to understand, lowering barriers to entry, and broadening the types, venues, and scope of cottage food sales in ways that allow local food businesses to thrive while protecting food safety.
In response to the many requests we received after our 2013 report for more information on each state, the updated 2018 report also includes a detailed appendix that documents and explains the cottage food laws in every state and shares citations and links to state materials. This resource provides a starting point for producers and anyone curious about cottage foods to locate information that is often scattered across statutes, regulations, and guidance documents in each state.
Across the country, food entrepreneurs, lawmakers, and regulators are all part of a cottage food movement that is bringing homemade foods to market and supporting small-scale food producers. FLPC’s new report provides a starting place for cottage food producers to learn about what they are allowed to do in their states as they are planning their new businesses. The report also helps cottage food producers, lawmakers, and advocates compare and contrast the varying requirements and provisions among states to see how they can improve their state laws in the future.
This blog post was written by Amy Radding Hoover, summer intern with the Harvard Law School Food Law and Policy Clinic.
In July, Diné Food Sovereignty Alliance (DFSA) convened advocates from across Navajo Nation to discuss Farm to School — programs that connect kids to healthy foods in school. In the two-day Healthy Kids, Healthy Learning Symposium, an energized group of educators, farmers, resource providers, and other community advocates shared their ideas and innovations to advance Farm to School programs in the Navajo Nation.
A wide array of advocates brought energy and resources to the event. DFSA, which works to restore the traditional food system and foods on the Navajo Nation while addressing true food sovereignty, provided vision and direction. Community Outreach and Patient Empowerment (COPE), a Native-controlled non-profit working to eliminate health disparities, brought food system expertise and a network of partners, including the Harvard Law School Food Law and Policy Clinic (FLPC). Schools, farmers, other local organizations, and community members also joined in with their experiences, challenges, and goals.
Throughout the symposium, each of these groups presented on their efforts. A local school presented on its Farm to School experience so far. A Farm Board representative told the group about work to help farmers access water and resources to grow food for schools. A farmer spoke about the challenges and opportunities he has faced selling into local markets. Several attendees also presented on some of the resources that are available to support local farm to school efforts; FLPC shared Farm to School policy recommendations for Navajo Nation, developed in partnership with COPE.
Building on the wealth of resources in the room, Gloria Begay of DFSA led the group toward a vision and plan to develop Farm to School programs and advance food sovereignty in the Navajo Nation. First, attendees listed the challenges they face in implementing farm to school programs. But the group didn’t get bogged down in the challenges. Instead, advocates immediately set to work brainstorming ideas, resources, partnerships, and plans to surmount those challenges and expand farm to school programs.
By the end of the symposium, the group’s notes captured a plan that touched on all three core aspects of Farm to School: growing school gardens, educating students about food, and serving local fresh food in school cafeterias. Current school garden managers shared a plan for growing a school garden program that would enable schools to start small, build capacity, and replicate successes. The group addressed food education as a way to help restore traditional food systems in Navajo Nation, part of ongoing work to bring Navajo language and culture back into schools. To improve procurement in cafeterias, farmers and advocates brainstormed ways to overcome transportation, water, and other barriers that can make it hard to farmers and schools to connect.
In addition to developing a plan, the symposium also fostered the partnerships that will sustain and expand Farm to School efforts in Navajo Nation. At the event, partner organizations reconnected on and recommitted to the work they can do together. And, one of the most impressive products from the symposium was a list of potential partnerships that spanned three huge pages.
As one educator reminded the group, Farm to School efforts are going to take time. The plans developed at the symposium will turn into action over the next months, years, and even decade. But with the plans, partnerships, energy, and excitement for Farm to School coming out of this symposium, participants left ready to move this important work forward.
The Center for Health Law and Policy Innovation (CHLPI) welcomes Rachel Landauer to the team as a Clinical Fellow!
Rachel graduated from UCLA School of Law in May 2016 as a member of the David J. Epstein Program in Public Interest Law and Policy, and with a Master of Public Health degree from the UCLA Fielding School of Public Health. During law school, she worked with projects and organizations including the American Civil Liberties Union’s Reproductive Freedom Project, the National Health Law Program, and the Los Angeles HIV Law & Policy Project, and co-chaired UCLA’s Health Law Society. Immediately prior to joining the Center, Rachel was an associate at Sheppard, Mullin, Richter & Hampton LLP, focusing on health care regulatory and compliance matters.
This blog post was written by Kyla Kaplan and Tess Pocock, summer interns with the Harvard Law School Food Law and Policy Clinic.
On Wednesday, July 19th, FLPC interns Kyla Kaplan and Tess Pocock along with their clinical instructor Nicole Negowetti, presented to attendees of the Delta Regional Forum as part of the Panel on Land, Food Systems, and Policy. The presentation, titled “What’s at Stake for Mississippi in the 2018 Farm Bill,” provided an overview of the structure of the farm bill as well as how changes to farm bill programs and funding will impact Mississippi and the Delta at large.
The purpose of the presentation was to provide a history of the Farm Bill, an overview of the Farm Bill Law Enterprise (FBLE) (including the four published reports), and snapshots of current Farm Bill programs that significantly impact Mississippi and the Delta region, including: SNAP and Nutrition, Conservation, and Support for Minority and Women Farmers. The presentation also discussed opportunities and challenges these programs face during the reauthorization process of the 2018 Farm Bill.
The Supplemental Nutrition Assistance Program (SNAP) is the nation’s largest food safety net, helping 41 million individuals access food annually. Currently SNAP serves 537,000 Mississippi residents, or 18% of the state population (1 in 6 individuals). Since SNAP serves so many in Mississippi and the Delta region as a whole, the added work requirements and physical barriers to access SNAP will greatly impact individuals.
Since the mid-1980s, the farm bill has contained conservation programs aiming to address the impact of agriculture on natural resources and the environment.These programs support anything from relieving land of production to supporting conservation practices on land currently being used. Two of the most important conservation programs–the Environmental Quality Incentives Program (EQIP) and the Conservation Stewardship Program (CSP)–play a major role in the Delta region. For example, in Mississippi, the top 13 funded counties receiving EQIP and CSP were located in the Delta.
Minority and women farmers have had disproportionately less access to credit under decades of racist and sexist lending practices in USDA programs. As a result, many have lost the opportunity to own land and to transfer land to successive generations. Criticism surrounding USDA practices caused the agency to confront its structural inequities in cases such as Pigford. In response, the USDA has implemented programs that support beginning, women, and minority farmers, including the Beginning Farmer and Rancher Development Program, the Section 2501 Program, and the Microloans Program. In 2013, the year the Microloans Program was implemented, Mississippi was the number one state in the country to receive microloans.
The presentation concluded by discussing opportunities for the Delta region in the 2018 Farm Bill, including: enhancing SNAP, improving access to loans for socially disadvantaged producers, strengthening insurance programs for diverse production systems, and increasing USDA transparency in its lending practices.
Originally published by Modern Healthcare on July 19, 2018. Written by Virgil Dickson.
The CMS may soon restart making billions of dollars in risk-adjustment payments to insurance companies with plans on the individual market via a new rulemaking. The agency on Wednesday sent an interim final rule related to the payments to the White House Office of Management and Budget for review.
It’s unclear what exactly the rule will do. However, health policy insiders say there are clues in the rule’s name: “Ratification and Reissuance of the Methodology for the HHS-operated Permanent Risk Adjustment Program under the Patient Protection and Affordable Care Act.”
“It appears from the title of the rule that CMS is attempting to resolve the issue and resume the retrospective payments,” said Phil Waters, a clinical fellow at the Center for Health Law and Policy Innovation at Harvard Law School.
The CMS does not comment on pending regulation under review at the OMB, according to a spokesperson.
The agency halted the payments earlier this month, citing a federal judge’s ruling in New Mexico earlier this year. U.S. District Judge James Browning determined the agency did not adequately justify its payment methodology for the payments and it needed to do so via rulemaking that’s subject to public comment.
The CMS has said that until that legal conflict is resolved it can’t make the payments or receive adjustments from insurers. All in all, the agency was slated to shift $10.4 billion among exchange insurers for 2017.
The CMS likely is addressing the procedural deficiencies that the court cited as a basis for its decision, Waters said.
Since the payment freeze, patient advocates accused the agency of attempting to sabotage the ACA exchanges by not making the payments.
Legal experts argue that the agency could have just paused payments in New Mexico while the legal challenge remained unresolved rather than halting the program across the country. The accusations have bothered CMS Administrator Seema Verma. “We really are in a tough spot,” Verma said to reporters at an event hosted by Alliance for Health Policy on July 12. “I think there has been a lot of discussion about whether the Trump administration made a decision, but we weren’t. The court told us what to do, and we have to follow what it said.”
Christopher Condeluci, an employee benefits lawyer who used to work for Republicans on the Senate Finance Committee, said he believes the agency when it says it was not attempting to sabotage the exchanges. He noted that administration officials have not repeated their usual rhetoric that Obamacare is a failure. Instead, they say they are looking for ways to fix the problem.
“I truly believe this was an instance where HHS lawyers were erring on the side of being conservative, not politically, but legally,” Condeluci said.
Sabrina Corlette, a research professor at Georgetown University’s Center for Health Insurance Reforms, had worried that consumers would have trouble gaining coverage due to the payment halt. It was unclear whether some companies would leave the individual market without the funds.
“I really hoped it was a temporary glitch and not an active attempt to undermine the marketplace,” Corlette said of the CMS’ decision to halt the payments. “I am even more hopeful today.”
Chris Coleman, an attorney for the Tennessee Justice Center, an advocacy organization, said he was holding off on celebrating until the CMS fully resolves the issue. Before CMS made its announcement, at least two plans were going to be on the marketplace for each county in his state and premiums in many areas were slated to decrease. Coleman hopes that doesn’t change while the rule is reviewed.
“It’s a good sign, but I will suspend judgment until I see final rule in place and payments flowing again,” Coleman said.
Originally published by ProPublica and NPR on July 17, 2018. Written by Marshall Allen.
To an outsider, the fancy booths at last month’s health insurance industry gathering in San Diego aren’t very compelling. A handful of companies pitching “lifestyle” data and salespeople touting jargony phrases like “social determinants of health.”
But dig deeper and the implications of what they’re selling might give many patients pause: A future in which everything you do — the things you buy, the food you eat, the time you spend watching TV — may help determine how much you pay for health insurance.
With little public scrutiny, the health insurance industry has joined forces with data brokers to vacuum up personal details about hundreds of millions of Americans, including, odds are, many readers of this story. The companies are tracking your race, education level, TV habits, marital status, net worth. They’re collecting what you post on social media, whether you’re behind on your bills, what you order online. Then they feed this information into complicated computer algorithms that spit out predictions about how much your health care could cost them.
Are you a woman who recently changed your name? You could be newly married and have a pricey pregnancy pending. Or maybe you’re stressed and anxious from a recent divorce. That, too, the computer models predict, may run up your medical bills.
Are you a woman who’s purchased plus-size clothing? You’re considered at risk of depression. Mental health care can be expensive.
Low-income and a minority? That means, the data brokers say, you are more likely to live in a dilapidated and dangerous neighborhood, increasing your health risks.
Insurers contend they use the information to spot health issues in their clients — and flag them so they get services they need. And companies like LexisNexis say the data shouldn’t be used to set prices. But as a research scientist from one company told me: “I can’t say it hasn’t happened.”
At a time when every week brings a new privacy scandal and worries abound about the misuse of personal information, patient advocates and privacy scholars say the insurance industry’s data gathering runs counter to its touted, and federally required, allegiance to patients’ medical privacy. The Health Insurance Portability and Accountability Act, or HIPAA, only protects medical information.
“We have a health privacy machine that’s in crisis,” said Frank Pasquale, a professor at the University of Maryland Carey School of Law who specializes in issues related to machine learning and algorithms. “We have a law that only covers one source of health information. They are rapidly developing another source.”
Patient advocates warn that using unverified, error-prone “lifestyle” data to make medical assumptions could lead insurers to improperly price plans — for instance raising rates based on false information — or discriminate against anyone tagged as high cost. And, they say, the use of the data raises thorny questions that should be debated publicly, such as: Should a person’s rates be raised because algorithms say they are more likely to run up medical bills? Such questions would be moot in Europe, where a strict law took effect in May that bans trading in personal data.
This year, ProPublica and NPR are investigating the various tactics the health insurance industry uses to maximize its profits. Understanding these strategies is important because patients — through taxes, cash payments and insurance premiums — are the ones funding the entire health care system. Yet the industry’s bewildering web of strategies and inside deals often have little to do with patients’ needs. As the series’ first story showed, contrary to popular belief, lower bills aren’t health insurers’ top priority.
Inside the San Diego Convention Center last month, there were few qualms about the way insurance companies were mining Americans’ lives for information — or what they planned to do with the data.
The sprawling convention center was a balmy draw for one of America’s Health Insurance Plans’ marquee gatherings. Insurance executives and managers wandered through the exhibit hall, sampling chocolate-covered strawberries, champagne and other delectables designed to encourage deal-making.
Up front, the prime real estate belonged to the big guns in health data: The booths of Optum, IBM Watson Health and LexisNexis stretched toward the ceiling, with flat screen monitors and some comfy seating. (NPR collaborates with IBM Watson Health on national polls about consumer health topics.)
To understand the scope of what they were offering, consider Optum. The company, owned by the massive UnitedHealth Group, has collected the medical diagnoses, tests, prescriptions, costs and socioeconomic data of 150 million Americans going back to 1993, according to its marketing materials. (UnitedHealth Group provides financial support to NPR.) The company says it uses the information to link patients’ medical outcomes and costs to details like their level of education, net worth, family structure and race. An Optum spokesman said the socioeconomic data is de-identified and is not used for pricing health plans.
Optum’s marketing materials also boast that it now has access to even more. In 2016, the company filed a patent application to gather what people share on platforms like Facebook and Twitter, and link this material to the person’s clinical and payment information. A company spokesman said in an email that the patent application never went anywhere. But the company’s current marketing materials say it combines claims and clinical information with social media interactions.
I had a lot of questions about this and first reached out to Optum in May, but the company didn’t connect me with any of its experts as promised. At the conference, Optum salespeople said they weren’t allowed to talk to me about how the company uses this information.
It isn’t hard to understand the appeal of all this data to insurers. Merging information from data brokers with people’s clinical and payment records is a no-brainer if you overlook potential patient concerns. Electronic medical records now make it easy for insurers to analyze massive amounts of information and combine it with the personal details scooped up by data brokers.
It also makes sense given the shifts in how providers are getting paid. Doctors and hospitals have typically been paid based on the quantity of care they provide. But the industry is moving toward paying them in lump sums for caring for a patient, or for an event, like a knee surgery. In those cases, the medical providers can profit more when patients stay healthy. More money at stake means more interest in the social factors that might affect a patient’s health.
Some insurance companies are already using socioeconomic data to help patients get appropriate care, such as programs to help patients with chronic diseases stay healthy. Studies show social and economic aspects of people’s lives play an important role in their health. Knowing these personal details can help them identify those who may need help paying for medication or help getting to the doctor.
But patient advocates are skeptical health insurers have altruistic designs on people’s personal information.
The industry has a history of boosting profits by signing up healthy people and finding ways to avoid sick people — called “cherry-picking” and “lemon-dropping,” experts say. Among the classic examples: A company was accused of putting its enrollment office on the third floor of a building without an elevator, so only healthy patients could make the trek to sign up. Another tried to appeal to spry seniors by holding square dances.
The Affordable Care Act prohibits insurers from denying people coverage based on pre-existing health conditions or charging sick people more for individual or small group plans. But experts said patients’ personal information could still be used for marketing, and to assess risks and determine the prices of certain plans. And the Trump administration is promoting short-term health plans, which do allow insurers to deny coverage to sick patients.
Robert Greenwald, faculty director of Harvard Law School’s Center for Health Law and Policy Innovation, said insurance companies still cherry-pick, but now they’re subtler. The center analyzes health insurance plans to see if they discriminate. He said insurers will do things like failing to include enough information about which drugs a plan covers — which pushes sick people who need specific medications elsewhere. Or they may change the things a plan covers, or how much a patient has to pay for a type of care, after a patient has enrolled. Or, Greenwald added, they might exclude or limit certain types of providers from their networks — like those who have skill caring for patients with HIV or hepatitis C.
If there were concerns that personal data might be used to cherry-pick or lemon-drop, they weren’t raised at the conference.
At the IBM Watson Health booth, Kevin Ruane, a senior consulting scientist, told me that the company surveys 80,000 Americans a year to assess lifestyle, attitudes and behaviors that could relate to health care. Participants are asked whether they trust their doctor, have financial problems, go online, or own a Fitbit and similar questions. The responses of hundreds of adjacent households are analyzed together to identify social and economic factors for an area.
Ruane said he has used IBM Watson Health’s socioeconomic analysis to help insurance companies assess a potential market. The ACA increased the value of such assessments, experts say, because companies often don’t know the medical history of people seeking coverage. A region with too many sick people, or with patients who don’t take care of themselves, might not be worth the risk.
Ruane acknowledged that the information his company gathers may not be accurate for every person. “We talk to our clients and tell them to be careful about this,” he said. “Use it as a data insight. But it’s not necessarily a fact.”
In a separate conversation, a salesman from a different company joked about the potential for error. “God forbid you live on the wrong street these days,” he said. “You’re going to get lumped in with a lot of bad things.”
The LexisNexis booth was emblazoned with the slogan “Data. Insight. Action.” The company said it uses 442 non-medical personal attributes to predict a person’s medical costs. Its cache includes more than 78 billion records from more than 10,000 public and proprietary sources, including people’s cellphone numbers, criminal records, bankruptcies, property records, neighborhood safety and more. The information is used to predict patients’ health risks and costs in eight areas, including how often they are likely to visit emergency rooms, their total cost, their pharmacy costs, their motivation to stay healthy and their stress levels.
People who downsize their homes tend to have higher health care costs, the company says. As do those whose parents didn’t finish high school. Patients who own more valuable homes are less likely to land back in the hospital within 30 days of their discharge. The company says it has validated its scores against insurance claims and clinical data. But it won’t share its methods and hasn’t published the work in peer-reviewed journals.
McCulley, LexisNexis’ director of strategic solutions, said predictions made by the algorithms about patients are based on the combination of the personal attributes. He gave a hypothetical example: A high school dropout who had a recent income loss and doesn’t have a relative nearby might have higher than expected health costs.
But couldn’t that same type of person be healthy? I asked.
“Sure,” McCulley said, with no apparent dismay at the possibility that the predictions could be wrong.
McCulley and others at LexisNexis insist the scores are only used to help patients get the care they need and not to determine how much someone would pay for their health insurance. The company cited three different federal laws that restricted them and their clients from using the scores in that way. But privacy experts said none of the laws cited by the company bar the practice. The company backed off the assertions when I pointed that the laws did not seem to apply.
LexisNexis officials also said the company’s contracts expressly prohibit using the analysis to help price insurance plans. They would not provide a contract. But I knew that in at least one instance a company was already testing whether the scores could be used as a pricing tool.
Before the conference, I’d seen a press release announcing that the largest health actuarial firm in the world, Milliman, was now using the LexisNexis scores. I tracked down Marcos Dachary, who works in business development for Milliman. Actuaries calculate health care risks and help set the price of premiums for insurers. I asked Dachary if Milliman was using the LexisNexis scores to price health plans and he said: “There could be an opportunity.”
The scores could allow an insurance company to assess the risks posed by individual patients and make adjustments to protect themselves from losses, he said. For example, he said, the company could raise premiums, or revise contracts with providers.
It’s too early to tell whether the LexisNexis scores will actually be useful for pricing, he said. But he was excited about the possibilities. “One thing about social determinants data — it piques your mind,” he said.
Dachary acknowledged the scores could also be used to discriminate. Others, he said, have raised that concern. As much as there could be positive potential, he said, “there could also be negative potential.”
It’s that negative potential that still bothers data analyst Erin Kaufman, who left the health insurance industry in January. The 35-year-old from Atlanta had earned her doctorate in public health because she wanted to help people, but one day at Aetna, her boss told her to work with a new data set.
To her surprise, the company had obtained personal information from a data broker on millions of Americans. The data contained each person’s habits and hobbies, like whether they owned a gun, and if so, what type, she said. It included whether they had magazine subscriptions, liked to ride bikes or run marathons. It had hundreds of personal details about each person.
The Aetna data team merged the data with the information it had on patients it insured. The goal was to see how people’s personal interests and hobbies might relate to their health care costs. But Kaufman said it felt wrong: The information about the people who knitted or crocheted made her think of her grandmother. And the details about individuals who liked camping made her think of herself. What business did the insurance company have looking at this information? “It was a dataset that really dug into our clients’ lives,” she said. “No one gave anyone permission to do this.”
In a statement, Aetna said it uses consumer marketing information to supplement its claims and clinical information. The combined data helps predict the risk of repeat emergency room visits or hospital admissions. The information is used to reach out to members and help them and plays no role in pricing plans or underwriting, the statement said.
Kaufman said she had concerns about the accuracy of drawing inferences about an individual’s health from an analysis of a group of people with similar traits. Health scores generated from arrest records, home ownership and similar material may be wrong, she said.
Pam Dixon, executive director of the World Privacy Forum, a nonprofit that advocates for privacy in the digital age, shares Kaufman’s concerns. She points to a study by the analytics company SAS, which worked in 2012 with an unnamed major health insurance company to predict a person’s health care costs using 1,500 data elements, including the investments and types of cars people owned.
The SAS study said higher health care costs could be predicted by looking at things like ethnicity, watching TV and mail order purchases.
“I find that enormously offensive as a list,” Dixon said. “This is not health data. This is inferred data.”
Data scientist Cathy O’Neil said drawing conclusions about health risks on such data could lead to a bias against some poor people. It would be easy to infer they are prone to costly illnesses based on their backgrounds and living conditions, said O’Neil, author of the book “Weapons of Math Destruction,” which looked at how algorithms can increase inequality. That could lead to poor people being charged more, making it harder for them to get the care they need, she said. Employers, she said, could even decide not to hire people with data points that could indicate high medical costs in the future.
O’Neil said the companies should also measure how the scores might discriminate against the poor, sick or minorities.
American policymakers could do more to protect people’s information, experts said. In the United States, companies can harvest personal data unless a specific law bans it, although California just passed legislation that could create restrictions, said William McGeveran, a professor at the University of Minnesota Law School. Europe, in contrast, passed a strict law called the General Data Protection Regulation, which went into effect in May.
“In Europe, data protection is a constitutional right,” McGeveran said.
Pasquale, the University of Maryland law professor, said health scores should be treated like credit scores. Federal law gives people the right to know their credit scores and how they’re calculated. If people are going to be rated by whether they listen to sad songs on Spotify or look up information about AIDS online, they should know, Pasquale said. “The risk of improper use is extremely high. And data scores are not properly vetted and validated and available for scrutiny.”
As I reported this story I wondered how the data vendors might be using my personal information to score my potential health costs. So, I filled out a request on the LexisNexis website for the company to send me some of the personal information it has on me. A week later a somewhat creepy, 182-page walk down memory lane arrived in the mail. Federal law only requires the company to provide a subset of the information it collected about me. So that’s all I got.
LexisNexis had captured details about my life going back 25 years, many that I’d forgotten. It had my phone numbers going back decades and my home addresses going back to my childhood in Golden, Colorado. Each location had a field to show whether the address was “high risk.” Mine were all blank. The company also collects records of any liens and criminal activity, which, thankfully, I didn’t have.
My report was boring, which isn’t a surprise. I’ve lived a middle-class life and grown up in good neighborhoods. But it made me wonder: What if I had lived in “high risk” neighborhoods? Could that ever be used by insurers to jack up my rates — or to avoid me altogether?
I wanted to see more. If LexisNexis had health risk scores on me, I wanted to see how they were calculated and, more importantly, whether they were accurate. But the company told me that if it had calculated my scores it would have done so on behalf of their client, my insurance company. So, I couldn’t have them.