Can’t see the audio player? Click here to listen.
When Stephanie Wittels Wachs found out that health insurance in Texas didn’t cover hearing aids for kids, she lobbied to change Texas law. And she won. But the process took more than two years.
“You’re constantly just like bugging everyone you know, like, ‘Please call! Please text! Please call! Please email!’” Wittels Wachs said. “You just become like this broken record.”
It was a grind, but along the way, Wittels Wachs found surprising allies. The bill’s sponsor in the state Senate was Lois Kolkhorst, a deep-red Republican with family members who are deaf.
“You end up getting into bed with people who, you’re like, ‘They’re the worst!’ But you find out they’re not the worst,” Wittels Wachs said.
Season 3’s Episode 1 of “An Arm And A Leg” unveils the moment when Sen. Kolkhorst made an emotional pitch to her fellow lawmakers. It worked. Texas now requires health plans to cover medically necessary hearing aids and cochlear implants for children.
Wittels Wachs has a daughter born hearing-impaired, and she was shocked to learn that the hearing aids her daughter needed would cost $6,000, and not be covered by her health insurance.
But her activism didn’t come from financial need; it came after a personal tragedy. Wittels Wachs’ brother, Harris Wittels — a comic who wrote for TV comedies like “Parks and Recreation” — died of a heroin overdose around the time Wittels Wachs’ daughter turned 1 year old.
“I just needed a place to put a lot of my inability to bring my brother back, my inability to change the fact that my daughter couldn’t hear,” Wittels Wachs said. “All of these things happened at once that I couldn’t fix.”
Wittels Wachs is the host of “Last Day,” a new podcast about the opioid crisis and the author of “Everything Is Horrible and Wonderful,” a memoir about grieving her brother.
Season 3 is a co-production of Kaiser Health News and Public Road Productions.
To keep in touch with “An Arm and a Leg,” subscribe to the newsletter. You can also follow the show on Facebook and Twitter. And if you’ve got stories to tell about the health care system, the producers would love to hear from you.
To hear all Kaiser Health News podcasts, click here.
And subscribe to “An Arm and a Leg” on iTunes, Pocket Casts, Google Play or Spotify.
In one picture, Hannah — or, as her 133,000 Instagram followers know her, @__justpeachyy — reclines in a car, her blue vape accenting the matching tattoo ink on her arms. Her curls are messy by design, and eyes heavily lined. (The post has more than 1,300 likes.)
In another, she gazes at the camera, her hair brushing against her right eye, her blouse slightly unzipped. You swipe left to see the vape juice she’s using today: a mix of strawberry custard, sugar cookie and vanilla custard, paired with, this time, a black device (2,994 likes as of Nov. 2).
As Washington scrambles to crack down on the nascent vaping industry — particularly how it courts young users — so-called influencers, like Hannah, whose online personas exist in a haze of glamour and celebrity, are exposing critical gaps in how government officials regulate the marketing of electronic cigarettes. (Hannah did not respond to requests for an interview.)
Tobacco marketing researchers and anti-smoking advocates say regulators — namely the Food and Drug Administration and Federal Trade Commission — are ill equipped, relying on rules and standards that fail to understand modern marketing.
Eschewing the glossy magazines and television ads favored by tobacco giants, brands like Juul, Logic and Myblu have leveraged sophisticated internet campaigns, relying heavily on Instagram, the photo-sharing platform used by about three-quarters of American teenagers. They have marketed from their own accounts but now benefit from the free advertising provided by influencers: seemingly unaffiliated people who promote vapes to their sizable online audiences.
Their reach is global — a complication, since American regulations don’t necessarily apply abroad.
Liam Gunther of Calgary, Alberta, has 49,000 followers on his account @chufflord. One video post, scored to the Etta James song “At Last,” depicts his morning ritual. He runs his fingers through his bed head, turns to the right and smiles. In the next shot, the objects of his affection are on the nightstand: his Canadian flag-clad vaping pod system and e-liquid (both of which he promotes in the caption). “HOW VAPORS WAKE UP,” it reads in all caps. “DO YOU GRAB YOUR PHONE OR VAPE FIRST??” (Gunther also declined to provide an interview.)
“All the rules for limitations on tobacco were written before social media existed,” said Dave Dobbins, chief operating officer at Truth Initiative, which advocates for enhanced tobacco regulations. “It didn’t even contemplate social media.”
It’s a gaping hole, especially since science increasingly suggests that nicotine vapes may harm young users’ brains — and are serving as a transition to actual tobacco. Young users are more likely to adopt e-cigarettes when they engage with social media-based advertising.
Some influencers use the hashtag #nominors, which has over 10,400 posts and, in theory, sets a boundary. In practice, it can do the opposite and attract underage traffic.
The hashtag #vaping alone has more than 9 million posts, featuring elaborate smoke tricks, e-juice flavors, attractive models and stylish vaping devices.
While federal agencies play catch-up, researchers worry it’s too little, too late.
In theory, a couple of rules govern marketing. Regardless of platform, e-cig advertisements cannot include demonstrably false statements — including unproven claims that the devices help people quit smoking, an argument often deployed by manufacturers and vape hobbyists. And on the internet, any marketing post must include a warning statement that says nicotine is addictive.
But, in practice, these restrictions mean little, researchers said.
“It’s been kind of a free-for-all on social media with vaping companies,” said Linnea Laestadius, an associate professor of health policy at the University of Wisconsin, who studies e-cig marketing. “Nobody’s really touched it yet.”
Prominent vape companies are savvy about skirting restrictions, said Dr. Robert Jackler, a physician at Stanford University who researches cigarette and e-cigarette advertising — which often suggests that vapes will help smokers quit, without being explicit.
“They advertise that they’re useful in transitioning from traditional cigarettes to vaping products, often with proxy terms,” Jackler said. “They use clever alternatives, like ‘switch’ or ‘alternative’ — without saying, switch from what.”
That’s one issue. The bigger factor is that the limited rules around social media haven’t anticipated how, precisely, a service like Instagram works.
The big companies aren’t posting much anymore — Juul’s account has been closed for almost a year, and Myblu hasn’t posted since last October. They don’t need to.
Instagram users often trust influencers more than they do brands, research suggests, and their posts are more effective in recruiting young users. They sport tattoos, ear gauges and piercings. Models are pretty, slim and perfectly made up. The most popular accounts have tens of thousands of followers, views and likes.
Some are certainly independent enthusiasts. But many have contracts with major vaping companies, receiving money or free products in exchange for posts featuring particular products. Juul alone has recruited thousands of influencers, according to an investigation by the House of Representatives’ Oversight Committee. (The company contests those findings, saying it has worked with fewer than 10 adult influencers.)
The FTC stipulates that any poster with corporate sponsorship must clearly disclose that relationship. But that rarely happens in a meaningful way.
Analyzing a random sample of 1,000 Instagram posts, Laestadius found that fewer than 10% of industry-backed influencers noted corporate sponsorship in their individual posts. Many simply mention the relationship in the bio of their profile page — easier to miss if you’re just scrolling through a feed.
Federal authorities are now trying to crack down. The FDA and FTC sent warning letters this summer to four companies that it said had paid influencers for marketing but failed to follow federal guidelines. According to information provided by the FDA, such letters are the first step in taking enforcement actions, which could include financial penalties.
Many experts said it’s unclear, though, whether these agencies have the bandwidth to enforce the existing rules — citing the number of accounts to follow and the sheer volume of activity. In fact, since Juul shut down its account, the number of Instagram posts with the company’s hashtag has continued to climb. (As of publication, there were more than 624,000.) And that’s only one of the relevant hashtags. Vapers use #vgod to share tricks — with 1.4 million posts and counting. There are 2.5 million posts under #cloudchasing, many of which are focused on vape tricks, and about 783,000 at #improof.
The sheer volume sparks another series of regulatory challenges.
Companies can disavow those posts as separate from their marketing strategy — even if they “lit the fire and fanned the flames” of that online community, Jackler said.
When asked about influencer-based marketing, Austin Finan, a Juul spokesman, said the company’s social media team works to find “inappropriate social media content” and remove it from the platform.
“We agree these types of social media posts are a serious problem,” he said.
Plus, the First Amendment makes it harder to craft regulations around marketing. Individual posters have specific protections that big companies lack. They could have more freedom, for instance, to say electronic cigarettes helped them quit smoking, Laestadius said, which Juul’s account legally couldn’t say. (E-cigarettes haven’t undergone the FDA’s process to be approved as medical quit aids.)
One example — from Hannah, @__justpeachyy: “I watched smoking destroy the health of my family, claiming lives that should be here today,” she writes in one post. “When I found a way to quit, all I wanted was to see more lives changed, and helped others drop the habit too.”
These challenges underscore why health officials and anti-smoking advocates are moving in another direction: to police platforms rather than posters by recruiting tech companies like Facebook (which owns Instagram), Snapchat and TikTok to remove content promoting vaping.
The American Medical Association in October asked Amazon, Microsoft, Instagram, Facebook and LinkedIn to prevent vape sales on their platforms. Matthew Myers, president of the Campaign for Tobacco-Free Kids, said his organization has had “constructive conversations” with Facebook and Instagram.
But none of those companies are legally required to make any changes — and, historically, have done so only in the face of public pressure, Jackler and Laestadius both noted.
“It’s a really complicated environment. It’s not as cut and dry as big tobacco,” Laestadius said. “It’s a combination of the big internet companies and the products — and our legal system isn’t designed to handle this yet.”
Russell Desmond received a letter a few weeks ago from the American Kidney Fund that he said felt like “a smack on the face.”
The organization informed Desmond, who has kidney failure and needs dialysis three times a week, that it will no longer help him pay for his private health insurance plan — to the tune of about $800 a month.
“I am depressed about the whole situation,” said the 58-year-old Sacramento resident. “I have no clue what I’m going to do.”
Desmond has Medicare, but it doesn’t cover the entire cost of his care. So, with assistance from the American Kidney Fund, he pays for a private plan to cover the difference.
Now, the fund, which helps about 3,700 Californians pay their premiums and out-of-pocket costs, is threatening to pull out of California because of a new state law that is expected to cut into the dialysis industry’s profits — leaving patients like Desmond scrambling.
The letter portrayed the fund as helpless. “We are heartbroken at this outcome,” it read. “Ending assistance in California is the last thing we want to do.”
But supporters of the new law are calling the threat a scare tactic. State Assemblyman Jim Wood (D-Healdsburg), the author of AB-290, said there is nothing in the measure that prohibits the fund from continuing to provide financial assistance to patients.
“AKF has simply made a conscious decision, without merit, to leave the state despite the many accommodations I made by amending the bill in the Senate to ensure that it can continue to operate in California,” Wood said in a written statement.
What’s behind this dispute is the tight relationship between the American Kidney Fund and the companies that provide dialysis, which filters the blood of people whose kidneys are no longer doing the job.
People on dialysis usually qualify for Medicare, the federal health insurance program for people 65 and older, and those with kidney failure and certain disabilities. If they’re low income, they may also qualify for Medicaid, which is called Medi-Cal in California.
But dialysis companies can get higher reimbursements from private insurers than from public coverage. And one way to keep dialysis patients on private insurance is by giving them financial assistance from the American Kidney Fund, which helps nearly 75,000 low-income dialysis patients across the country.
The fund gets most of its money from DaVita and Fresenius Medical Care, the two largest dialysis companies in the country. The fund does not disclose its donors, but an audit of its finances reveals that 82% of its funding in 2018 — nearly $250 million — came from two companies.
Insurance plans, consumer advocacy groups and unions have accused the American Kidney Fund of helping dialysis providers steer patients into private insurance plans in exchange for donations from the dialysis industry. Wood said his bill is intended to discourage that practice.
American Kidney Fund CEO LaVarne Burton denied the accusations and said her group plays no role in patients’ coverage choices.
Starting in 2022, the new law will limit the private-insurance reimbursement rate that dialysis companies receive for patients who get assistance from groups such as the American Kidney Fund to the rate that Medicare pays. The rate change won’t apply to patients who are currently receiving assistance as long as they keep the same health plans. The bill will also address a similar dynamic in drug treatment programs.
To determine which patients receive financial aid, the law will require third-party groups to disclose patients’ names to health insurers starting July 1, 2020.
These disclosure requirements are spurring the American Kidney Fund’s decision to leave, Burton said. She argues that they conflict with federal rules and violate patient privacy.
“AKF has no choice but to leave or seek legal relief,” Burton said.
Brian Carroll says he had to move back in with his parents in 2016 after dialysis treatment because it left him too weak to work. Without premium assistance from the American Kidney Fund, he says, he’ll face even more financial strain. (Ana B. Ibarra/California Healthline)
In mid-October, the fund started sending letters to its financial aid recipients in California warning of its departure. And Nov. 1, it joined two dialysis patients in filing suit against the state, asking a U.S. District Court to rule the law unconstitutional.
Gov. Gavin Newsom cautioned against such actions when he signed the bill, and urged “both opponents and supporters to put patients first.”
But as the threats and legal battle play out, patients are caught “squarely in the middle,” said Bonnie Burns, a consultant with California Health Advocates, a Medicare advocacy group.
Their options may be limited, she said. Those who don’t work won’t have access to employer-sponsored coverage to make up the difference. And in California, Medicare recipients under age 65 are not eligible to purchase supplemental insurance known as Medigap.
The state Department of Managed Health Care offers a fact sheet for affected patients, directing them to programs such as Covered California and Medi-Cal.
DaVita and Fresenius said insurance counselors and social workers at their clinics are working with patients to find other options.
“We will continue to treat all patients, regardless of insurance status,” said Paige Hosler, vice president of insurance management at DaVita. Hosler noted that some patients may qualify for DaVita’s charity care program.
Dialysis companies have been at the center of recent legislative and ballot-box battles, and have spent big to defend their bottom lines. Last year, they poured a record-breaking $111 million into a campaign to defeat Proposition 8, a ballot initiative that would have capped their profits. The measure failed.
The industry also spent about $2.5 million in California on lobbying and campaign contributions in the first half of this year to oppose Wood’s measure.
Desmond said he understands why lawmakers targeted the dialysis industry but can’t fathom why they did so at the expense of patients.
Desmond was laid off from his job as a computer programmer in Massachusetts in 2009 and moved to California to join his brother. One year later, he was diagnosed with kidney failure.
He lives off his Social Security Disability Insurance benefits, which come to about $2,000 a month after his Medicare premiums are deducted. Medicare pays for 80% of his care.
He also qualifies for Medi-Cal coverage that comes with high out-of-pocket costs, so he relies instead on a private Aetna insurance plan to cover the remaining 20%. The American Kidney Fund has been paying the premiums for his private plan since 2015.
“What they did is take away our life raft and left us to drown,” he said of lawmakers.
Brian Carroll, 40, of Sacramento, has been on dialysis for five years. He moved back in with his parents in 2016 because, he said, dialysis left him too weak to work.
“I am now completely depending on other people,” Carroll said. The American Kidney Fund pays the $270 monthly premium for his private insurance plan that covers what Medicare doesn’t. “That’s an entire month of groceries and gas for me,” he said.
Carroll said he supported Proposition 8, even though dialysis companies argued it would force them to cut back services and shut down clinics.
In this situation, he’s not sure whom to blame — the lawmakers, who passed the law with no backup plan for patients, or the fund, which is essentially holding patients hostage.
“What I do know is that you can’t just leave dialysis patients like this,” Carroll said. “It’s cruel.”
This KHN story first published on California Healthline, a service of the California Health Care Foundation.
Julie Rovner, the chief Washington correspondent for Kaiser Health News, was on the air Tuesday discussing current health politics and marketplace enrollment issues. She joined New York Times reporter Margot Sanger-Katz to talk with Radio Times host Marty Moss-Coane to break down Democratic presidential candidates’ debate on “Medicare for all” plans and other health initiatives.
She also was on WDET, the NPR station in Detroit, with Detroit Today host Stephen Henderson to help answer consumers’ questions about the Democrats’ health care debate and buying insurance through the Affordable Care Act’s marketplaces during open enrollment.
Samuel Shem's 1978 novel, The House of God, was a sardonic look at U.S. medicine through a young doctor's eyes. Shem's new fiction checks in with the same crew in the age of medicine by smartphone.
(Image credit: Catie Dull/NPR) More
Media outlets focus on these public heath topics and others health care issues. More
Media outlets report on news from Arizona, Missouri, Kentucky, Kansas, Maryland, North Carolina, California, Iowa, Massachusetts, Florida, Georgia, Texas, Louisiana, Tennessee, and New Hampshire. More
While three of the deaths on the University of Southern California campus were suicides, officials still haven't determined some of the causes. School administrators have faced a balancing act, trying to share adequate information with students without overloading them with unnecessary details. More
While the number of crimes dipped slightly compared to 2017, Brian Levin, co-author of the report said, "We're seeing a leaner and meaner type of hate crime going on.'' The majority of hate crimes were motivated by bias against race and ethnicity, religion, and sexual orientation. More
Planned Parenthood's acting president, Alexis McGill Johnson, says that as states passed laws to limit abortion access, Planned Parenthood’s clientele became increasingly desperate for information. “Restrictions have just been coming so fast and furious,” she said. The new tool will direct patients to the closest Planned Parenthood facility that is able to accommodate the procedure. News on abortion comes out of Michigan and Florida, as well. More
Stigmas over discussing health and injuries or questioning team doctors are changing according to a story by The New York Times. “This is the age of empowerment, they feel emboldened, and you’ll see more and more veterans standing up for themselves,” said James Acho, a lawyer who has represented NFL players. More public health news is on the late Rep. Elijah Cummings' rare cancer, flu vaccine research, a questionable Army discharge, dementia, mental health, septic shock, disadvantages for black newborns, and workouts for arthritis pain, as well. More
Childhood vaccines are often subsidized in the poorest countries. , but not for those moving up the wealth ladder.
(Image credit: Hannibal Hanschke/Picture Alliance/Getty Images) More