Nov 25, 2015 ยท 25 minutes

Seven percent.

According to his doctors, those were the odds Webb Smith, Jr. had of surviving the next 24 months. The diagnosis was stage 4 colorectal cancer – an extraordinarily rare condition for a 44-year-old man like Smith. Although colorectal cancer is the second most common cause of cancer deaths in America, the median age for those afflicted with the disease is 69.

“The day before I’m diagnosed, I’m at church, and I think I might have Crohn’s after there was bleeding in my stool,” said Smith, who lived with his wife and two daughters in the small coastal town of Delray Beach, which is located about an hour’s drive north of Miami. “You just don’t think it’s going to be you.”    

In November 2013, when Smith learned of his diagnosis, he was among the 40 million other nonelderly uninsured Americans in 2013 who “didn’t think it was going to be them.” And with a pre-existing condition as severe as his, Smith said he would have likely faced insurance premiums and medical bills upwards of $20,000 a month – that’s if he were able to obtain an insurance plan at all. Throughout his initial diagnosis period, Smith’s only recourse was to make regular emergency room visits – visits which had cost him $25,000. As the proprietor of a local window treatment company living “paycheck to paycheck” with little savings, these bills threatened to cripple his family financially. What’s worse, the only thing he had to show for that $25,000 was a diagnosis of cancer and an even grimmer prognosis from doctors who, after discovering 22 separate cancerous legions in his liver alone, told Smith he was “not a good candidate for surgery” – not that he could afford it anyway.

At that point, the issue became less about “how to beat the cancer” and more about minimizing the extraordinary amount of pain Smith would face in his final months. Smith was forced to come to grips with the likelihood that he would never get the chance to walk his two daughters, aged 19 and 22, down the aisle; that he would never play with his future grandchildren.

With only a modest income and with 15 more years before he would be eligible for Social Security or Medicare, it would seem that the timing and conditions surrounding Smith’s diagnosis couldn’t be worse. There was, however, one circumstance working in Smith’s favor: the first open-enrollment period facilitated by the Affordable Care Act – known pejoratively as ObamaCare – had begun just one month earlier. Moreover, one of the most important features of the new law was that it made it illegal for health insurance companies to deny coverage to an individual or family due to a life-threatening pre-existing condition - like Smith’s.

By January 1, 2014, Smith – despite suffering from a disease that would have made it impossible or prohibitively expensive to sign up for a new healthcare plan – became one of the 9 million formerly uninsured Americans who was now covered thanks to the Affordable Care Act. His treatments, which involve regular flights to New York’s state-of-the-art Sloan Kettering Cancer Center for chemotherapy and surgeries, still weren’t cheap – Smith estimates that he’s spent about $10,000 a year on premiums, deductibles, prescriptions, and other related expenses. But when compared to the $25,000 he already owed for emergency room visits, along with the estimated $20,000 a month his local insurance agent said he would be charged without insurance provided by the Affordable Care Act, his plan was a bargain.

Not that any price could be put on Smith’s life - but that's precisely what his ACA plan gave back to him. Last May, thanks to his treatment, Smith’s cancer was in complete remission. The cancer recently re-emerged in one of his lungs, but thanks to a recent round of chemotherapy, that tumor is “pretty much dead,” Smith tells me.

“If I make it another two weeks I’ll be in the 7 percent club.”

* * * *

When we hear about the Patient Protection and Affordable Care Act – widely referred to as ObamaCare – it’s often mentioned in conjunction with words like “socialism” or “death panels” or “government takeover.” Recent polls indicate that only 43 percent of Americans approve of the law, and as many as 87 percent of Republicans oppose it. In fact, up until he was diagnosed with cancer, Smith – a lifelong conservative - was one of these opponents.

One of the most common complaints about the Affordable Care Act is that it is notoriously long, and that lawmakers - despite it being the exact reason they exist - could not have been expected to read all of it. The text of the law totals 906 pages, plus there are an additional 10,535 pages of final regulations associated with it. Indeed that amounts to a byzantine alphabet soup of federal legalese that should not be taken lightly. Even its proponents think the law is imperfect, though many of them – like Democratic presidential candidate and Vermont Senator Bernie Sanders – believe that’s because it does not go far enough.

But as Smith’s story illustrates, the heart and soul of the law, and the most crucial and positive effect it’s had on the lives of Americans, is simple: People with pre-existing conditions can no longer be denied health insurance. This key component is also fairly uncontroversial. A Reuters/Ipsos poll conducted last May found “broad support among both parties” for the law’s ban on denying coverage based on pre-existing conditions. And even before his diagnosis, Smith agreed that such prohibitions should be in place.

But if insurance companies are barred from denying coverage to those with pre-existing conditions, what’s to stop Americans from only buying insurance when they contract a life-threatening illness? On its own, such a law would decimate the healthcare industry, depriving it of the premiums paid by healthy individuals on which the core concept of health insurance is built. This leads to the more controversial, so-called “socialist” part of the law: The mandate that every American sign up for insurance, along with the subsidies that help poorer citizens afford it. (Smith’s insurance, despite his financial hardships, is not subsidized, he says).

In short, unless the government requires Americans to have health insurance, it cannot guarantee coverage to those with pre-existing conditions. That, in the most basic terms possible, is how “Obamacare” works and why it exists.

But now there’s a group of companies which, through shady information gathering techniques that sometimes brink on harassment, could potentially offer a way for insurance carriers and brokers to skirt this ban. And in doing so, they might depriving people like Smith of much-needed coverage and threatening to undermine the very nature of the Affordable Care Act and the value it provides - a value that even most Republicans support, as long as we want to live in a country that doesn't leave for dead everyone but the wealthiest one percent.

* * * *

Sean Sullivan has a laudable goal: To make signing up for health insurance less of a living nightmare.

In a simpler world – or in Canada or the United Kingdom or one of the many other countries where healthcare is provided through a “single payer” system – there might be little reason for Sullivan’s company, HealthNetwork, to exist. But in the United States, where healthcare is provided through an intertwined system of entities both private and public, and via mechanisms operating at both state and federal levels, identifying the most affordable and suitable coverage plan can breed more headaches than the eventual coverage would alleviate. Through its website and telephone hotline, HealthNetwork helps insurance buyers answer questions like, “Do I qualify for subsidies?” or “Do I live in one of the 14 states that operate their own healthcare exchanges?”

That’s not to say Sullivan’s outfit is a charity, or an educational foundation – HealthNetwork is a for-profit company that operates in the space known as “lead generation” (Sullivan prefers to describe what his company does as “health care marketing.”)

Through a network of sites that consumers largely find through paid and organic search results, HealthNetwork collects a very basic battery of personal information – zip code, date of birth, gender, family income, and family size – and then attempts to find the most appropriate plan for that individual at the best price. If the consumer wishes to move forward with a suggested plan, HealthNetwork passes the customer onto an insurance carrier to finalize enrollment or, in many cases, a company known as an insurance broker. Zenefits in one example of an insurance broker, which operates as a middleman between consumers and carriers, negotiating rates and other terms of coverage plans, theoretically with the consumer’s interests in mind.

Finally, Sullivan says that HealthNetwork does not make their money by selling consumer information nor even by passing it along to relevant parties. On the contrary, HealthNetwork only gets paid when a visitor to one of its sites enrolls in an insurance plan. That gives HealthNetwork an incentive to connect consumers to the plan that’s most appropriate – both for the consumer and the carrier.

“We sacrifice revenue to help people,” Sullivan tells me, insisting that if a consumer’s best option is, say, Medicaid, that is the course of action HealthNetwork will recommend – even if that means it won’t be able to collect any commission for its recommendation.

All this is to say that HealthNetwork, as Sullivan describes it, is a good example of how “lead generation” is supposed to work.

Assuming Sullivan is describing HealthNetwork accurately, it’s also a very rare example: The exception, not the rule, in a space filled with horrible actors that would rather take advantage of, harass, and deprive of care people with life-threatening illnesses like Webb Smith, Jr, than to help them.

I know this because, after Sullivan told me about some of the bad behavior used by others in the healthcare lead gen industry, I decided to try it out for myself.

Here's how the racket works: First off, although these sites possess ugly, low-rent URLs like, they expend huge amounts of money and effort to ensure that when consumers search for key terms related to the Affordable Care Act, their sites are the first to appear in Google results.

For example, if you search for ObamaCare, you might expect the first site on Google to be the Wikipedia page for the piece of legislation or perhaps, the much-beleagured – though much-improved – official website consumers can use to sign up for insurance through federal exchanges. But no, the very first site is one called If you search for “Affordable Care Act,” is the second site listed, after the more legitimate healthcare resource Oscar.

There a few things worth noting about perhaps most tellingly, the site is owned and operated not by a healthcare firm but by a Los Angeles based startup named Katch, which vows to offer “the only software platform that enables brands to engage and monetize every buyer who comes to their website – even those that don’t transact.” 

That may sound like an acceptably skeezy tactic for a retail company or perhaps a social media platform, but why should health insurance companies ever “monetize” a person who comes to their website but doesn’t find their resources sufficiently helpful to enroll in a plan? And how could they?

They do so by selling the highly sensitive health-related data that they routinely request from consumers. But while the data collected by ethical outfits like HealthNetwork - date of birth, zip code, and household income - isn't necessarily all that valuable or difficult for companies to come by, most lead generation sites collect far more sensitive information than that., for instance, collects a consumer’s height and weight, which can be used to determine their Body Mass Index and along with it a host of risk assessment factors. That site also asks consumers whether or not they use tobacco, and whether they suffer from a dozen different pre-existing conditions, including AIDS/HIV, cancer, diabetes, muscular dystrophy, and lupus.

This is a really crucial point - and not only because it’s pretty gross to collect and sell such highly personal information without offering anything of value in return. The bigger reason this data collection matters is that, as stated earlier, the entire core of “Obamacare” is based on the premise that health carriers cannot deny coverage to a person because of a pre-existing condition. The law states that health carriers are prohibited from even requesting this information prior to a consumer applying for and enrolling in a plan, and therefore to do so would be illegal. The whole purpose or the Affordable Care Act, after all, is not to launch a "government takeover" of healthcare as its critics claim, but to enable people like Webb Smith Jr who need it most receive coverage despite any pre-existing conditions.

It is not illegal, however, for lead generation sites like ObamacareUSA and Katch's other web properties like to ask for this information and then sell it to other healthcare stakeholders like the aforementioned insurance brokers. If carriers and brokers were bold - and unethical – enough, they could theoretically take indirect steps to delay coverage of these individuals or to otherwise make it more difficult for them to sign up for health insurance.

“It’s entirely possible that lead generation companies could essentially create a list of ‘who to avoid,’” Sullivan tells me.

Granted, even Sullivan admits that it’s “very dangerous” for insurance carriers themselves to go anywhere near this information on pre-existing conditions. And when I contacted the US Department of Health and Human Services about these lead generation companies, a representative said she was “looking into it” but later stated that the department didn’t have “any additional information to provide at this time” other than a couple public documents it had prepared to warn prospective enrollees about consumer fraud.

The question remains, though, if insurance decisions can no longer be informed by a knowledge of pre-existing conditions, what do these sham websites by obtaining it?

Sullivan says that while carriers aren’t likely to risk accepting this information, brokers are another story. The way most of these sites operate is that, after answering the questions put forth by these quite invasive forms, consumers become inundated with calls – more on that later –many of which come from massive robo-dialing call center operations that are merely fishing for more information about the consumer. But some of the calls come from legitimate, licensed brokers.

These brokers could, theoretically, only call back consumers that meet certain health standards in an effort to create the healthiest book of business possible. And if carriers became aware of these tactics – in the most hush-hush sense possible – they would be incentivized to work more closely with these brokers than with others. After all, the insurance industry is still, at its core, “a giant gamble,” Sullivan says, wherein carriers can only hope that as high a number of their premium-paying customers stay as healthy as possible for as long as possible.

Any edge carriers can find to improve these odds – especially now that the ACA prohibits them from directly collecting information on pre-existing conditions – is one we might expect at least some carriers to pursue in time, particularly considering that this information is still being collected as aggressively as before the new healthcare laws passed. If these tactics are adopted by even one of the major insurance carriers, then it could very easily cost people like Webb Smith, Jr. their lives down the line.

Nevertheless, there’s a more straightforward, less nefarious reason this information is perhaps being collected: The vast majority of carriers, brokers, and lead generation firms simply haven’t bothered to change their marketing tactics despite the unprecedented overhaul of healthcare laws in the US. This fact is much harder to dispute. And after running my own experiment with one of the worst offenders in the lead gen space, it’s clear that the industry’s lazy and negligent refusal to evolve its hostile marketing techniques are just as harmful to consumers who need insurance to comply with the law – and, in many cases, to survive another year – as any potential conspiracy to deny sick people coverage.

* * * *

As mentioned above, when I Googled “Obamacare,” the first result was the Katch-owned ObamacareUSA – a site that is more concerned with invasively collecting consumer information than it is with helping people buy health insurance. The second was a site specifically for New Yorkers called healthfirst, and its lead form required only the most basic contact information and therefore appeared to function as a legitimate resource for consumers. The third, however, the suspiciously hyphen-heavy, boasted what might have been the worst customer experience I have ever been party to. I don’t mean something on the order of a waiter being rude to a diner. I'm talking about an experience involving immensely invasive questioning and literal harassment, none of which brought me any closer to becoming insured. If I were a real prospective insurance customer and didn't know any better, I'd likely give up my efforts to buy insurance entirely - putting myself and my family at risk of financial ruin, or worse.

The experience began like so many other lead generation inquiries: A form demands a battery of inappropriate information and features an itemized list of pre-existing conditions for consumers to check yes or no against, including: diabetes, high blood pressure, high cholesterol, kidney disease, and the all-encompassing “other / not listed.” Because Sullivan warned me that these companies use highly aggressive marketing tactics, I downloaded an app called Burner which allowed me to provide a number that would forward calls to my regular phone, but which I could delete or switch off at any time. As I would soon discover, it was a good thing I used that app and not my regular phone number.

After submitting my personal information off into the digital ether, I clicked on a button that read, “Get my quote.” A more naïve web user might then expect to see a quote for insurance materialize on their screen. But having already tangled a bit with these “lead gen” companies, I knew better. Instead, I was presented with links to even more sites just like that promise free quotes – but deliver nothing of the sort – along with the note, “Click at least 2 to 3 companies below to find the best rate!” (This incestuous feeding frenzy of consumer information between lead gen sites is all too common; other variations of the same “exit page” read, “Important: Most people click at least 3 results before making a decision.”)

“If someone filled out the lead form,” Sullivan said, “then clicked on three of the ads, they could have given their information to 32 different parties.”

At this point - assuming I wasn’t about to be fooled twice into providing my personal information to some faceless website that offered me nothing immediate in return – there was nothing to do but wait for a call back. And assuming my life vitals were sufficiently robust to warrant it, the site promised me I would receive a call from a “Senior Market Sales” agent from a company called InSphere. Well, that’s something, I thought, though this line helpful information appeared but in a small banner at the bottom of the screen which my brain could have easily mistaken for a meaningless advertisement.

Here’s where things turned from inconvenient and invasive to invasive and harassing: Over the next 24 hours I was called 24 times at that number, which I hadn’t shared with anybody else yet. Almost all of them were “robo-calls” – meaning that an automated system dials the number then, if a human voice picks up, the call is routed to a representative often sitting in a call center. I could tell because I let the vast majority of the calls go to voicemail, where they filled up my phone’s memory to capacity with one message after another, each made up only of silent, dead air. That means, as opposed to agents calling customers with their specific needs in mind, agents with a predetermined set of products have a firehose of clients funneled into their earpieces which, while perhaps unsurprising, does not reflect the promise of personalized quotes these sites offer.

But the quality of the agent experience is secondary to the fact that – again – I received 24 calls in 24 hours. The calls persisted even after I asked to be removed from the call list after the initial 24-hour period – albeit at a slower pace of around three calls a day. But again, I only gave my number to one source for experimental purposes. If consumers fill out the forms as recommended by these sites – that is, two to three forms at a time – even 3 calls a day from each form could inundate a person’s phone. I typed in one of the numbers to the unknown caller database 800 Notes and found pages of consumer complaints.

As for the company these agents shilled for, InSphere is the type of “boiler room” sales call centers that have existed more for the benefit of salespeople than consumers for decades. (Communities from Ripoff Report to Glassdoor sport their own pages of complaints from employees).

But what about the companies behind the lead gen sites? Katch’s ObamacareUSA was bad enough, but who’s behind the abysmal, invasive, and useless form that led to 24 calls in 24 hours?

Sullivan says he did his own testing on the two sites mentioned above plus two others and received a whopping 191 calls in less than 24 hours. Two of the sites – including the one I tested above and another called that routinely ranks in the top 3 Google results - are part of a large network of lead generation sites owned and operated by an Austin-based company called All Web Leads. One might imagine – judging at least by the quality of the websites and the unethical call centers they partner with – that these firms are bottom-of-the-barrel outlets with little sophistication or legitimacy. But they are doing big business selling personal information and sale leads. For instance, earlier this month All Web Leads agreed to acquire Bankrate’s insurance division,, for $165 million. According to a press release announcing this deal, All Web Leads is “the largest private company in the industry,” pulling in $110 million in annual revenue and employing 400 employees in its home office in Austin. (Days before publishing the story, I contacted by phone and email All Web Leads, Bankrate, and Genstar Capital, a private equity firm that counts All Web Leads as one of its portfolio investments. All three failed to give me a response).

The idea of sleazy salespeople taking advantage of people through websites that look like they were created or sanctioned by the government is not unique to healthcare. In 2013, Salon’s Andrew Leonard wrote about a ”thriving industry of lead generators” that used shady, official-sounding websites to market for-profit colleges like the University of Phoenix to online consumers seeking, for example, help with securing federal tuition reimbursement under the GI Bill. One of these lead gen operators, QuinStreet, agreed to pay a $2.5 million fine after attracting the attention and ire of attorneys general in 20 states.

That means there is some precedent for a legal crackdown on lead generator sites. Unfortunately, there are some significant differences between what QuinStreet did and what companies like All Web Leads and Katch do. By explicitly targeting military veterans looking to cash in on federal education funds made available by the GI Bill, QuinStreet was effectively diverting taxpayer money – money that’s intended for the reimbursement of legitimate education resources – to for-profit schools with pathetically low graduation rates and massive marketing budgets that ensure a constant influx of fresh bodies but leave little money left over to use in actually teaching students.

On the contrary, companies like All Web Leads aren't exactly redirecting federal funds to the coffers of illegitimate institutions. But they do have an incentive to deprive consumers of much-needed federal funds by not recommending subsidized plans or Medicaid – even if that’s all a customer can afford.

An agent at InSphere, for instance, where employees report having to pay for their own leads while living commission-to-commission, is not going to recommend the most affordable insurance plan – rather they’re going to recommend the most expensive one the consumer is willing to pay for, even though there’s a very clear reason why subsidies were baked into the Affordable Care Act and why Medicaid still exists to help ease the burden of healthcare costs for the poor.

Again, the ACA only works when everyone has insurance. But when the industry still uses the same shady marketing techniques and partners it always has, it threatens to create a huge number of Americans who are overpaying for health insurance – when it’s possible they shouldn’t be paying anything at all. And when those Americans can suddenly no longer pay their premiums and deductibles, many are likely to drop out of the system altogether, thinking they can’t afford it. That’s bad news for the health of families and for the health of the post-ACA insurance industry as a whole, which needs everyone’s involvement in order to thrive.

* * * *

As opponents of the ACA are fond of saying, the full set of changes to U.S. healthcare regulations thanks to the law totals over 11,000 pages. And yet, despite this massive overhaul, insurance carriers and brokers haven’t changed their marketing techniques in the slightest – except to make them even more aggressive to meet the increased demand for health insurance mandated by the law, and to rely on lead generation sites that carry a strong illusion that they are affiliated with the United States government. As a result, consumers who search for “Obamacare” or “ACA insurance” – many of whom are underprivileged and looking only to follow the law of the land by signing up for health insurance – are being funneled (with a big assist from Google which is accepting big bucks from these sites in the form of ads) to shady websites that take their information, spam them with a harassing barrage of phone calls, and, assuming the consumer hasn’t already been illegally pre-screened for a pre-existing conditions, offer them insurance plans that are not in the best interest of the consumer.

From any number of perspectives, this is deeply unethical. But the part that seems to bother Sullivan most surrounds the gathering and selling of a consumer’s personal health information.

“Consumers are shocked and outraged when there are data breaches at insurance carriers or big corporations,” Sullivan said. “But the ironic part is, they’re giving away a lot of data that cybercriminals are trying to get access to; just giving it to insurance brokers when they have no reason to.”

The sorry state of lead generation and health insurance marketing in America is simply one of the many consequences of the current mess of private and public pressures in U.S. healthcare. A product that is required by the government, and sometimes sold through government-operated channels, is still being marketed by private companies that still think of healthcare as a product to be shilled, like the wares of a door-to-door vacuum salesman, instead of as a public good. And as such, the United States has a responsibility to crackdown on these sites, as they not only hurt consumers; they also threaten the very solvency of our new healthcare system by providing unsuitable sales channels – in particular for poor consumers who desperately need subsidies or Medicaid to afford coverage – and potentially offering a loophole wherein brokers and carriers could jeopardize the ability of those with pre-existing conditions to obtain health insurance, even though it is now guaranteed to them by law.

And that’s where the real scandal lies. Scamming and spamming customers are tactics as old as the system of bartering goods is itself. However, with the passage of the Affordable Care Act – along with the Supreme Court’s recent decision to uphold it – lawmakers and judges have spoken: Healthcare is a public good. And yet, when Americans moves to a new town they aren’t required to come into the local police department and negotiate a protection deal – nor are they expected to go without it if they don’t have any money but do have a pre-existing condition that requires them to need this public good even more than anyone else. And while this may not seem like a big deal to the strong and young and healthy among us, you could wake up tomorrow faced with Webb Smith, Jr.’s situation – only, it may not be exactly like Smith’s. No, instead of being a part of the seven percent who, thanks in large part to having health insurance, was able to survive two years, you may be part of the 93 percent, and it may be because of companies like All Web Leads.

And if you do suddenly receive a nightmare diagnosis, by all means, sign up for "Obamacare." Just don't Google it first.