Let’s say you were recently diagnosed with a serious medical condition — depression, for instance. Your doctor thinks medication is the way to go, but says it may take some experimentation to find the right drug. The first try: Paxil.
For two weeks, you don’t notice a difference. But then suddenly you can’t sleep and you’re suffering from headaches. So you call your doctor, who tells you to stop taking the meds and come in to discuss your condition further. In the meantime, you get an unusual mailer from Walgreens, your local pharmacy, saying "please remember to take your medication." Perplexed, you wonder if your pharmacist knows something your doctor doesn’t, and you consider resuming the Paxil. Then you take another look at the mailer.
In fine print, you see that the message wasn’t sent by Walgreens, but by a company called Adheris. Since you’ve never heard of Adheris, you call your pharmacist for an explanation. The pharmacist tells you that Walgreens has been selling your prescription information to outside companies, which are contracted to send you these "reminders."
Sound creepy? Well, that’s the scenario that came within a hair’s breadth from becoming a potential reality recently via a state bill that would have eroded California’s strong medical privacy laws. The legislation passed the state Senate May 29 before dying in the Assembly June 17.
The bill, SB 1096, was sponsored by Sen. Ron Calderon (D-Montebello) and would have allowed pharmacies to sell patients’ prescription and medical information to third-party entities — including Adheris, Inc., the bill’s main business backer. The ostensible goal behind the bill was to allow Adheris and other similar marketing companies to mail "reminder" notices to patients so they wouldn’t forget to take their medication.
The Mental Health Association of California, the National Association of Cancer Patients, and other important health advocacy organizations supported the measure, saying they believed it would improve compliance and save lives. But the bill’s opponents, which included the California Medical Association and many consumer groups, asserted that the legislation was not really about helping patients.
Jerry Flanagan of Consumer Watchdog led the fight against the bill. Flanagan called the legislation "insidious" and "dishonest" because it was really about marketing pharmaceuticals and "boosting drug company profits." Adheris does receive funding from the pharmaceutical and retail pharmacy industries, and Flanagan pointed to a Wall Street Journal article from 2002 revealing that Adheris was essentially created to help drug companies ensure consumer loyalty to expensive, brand-name pharmaceuticals. Furthermore, Flanagan’s records show that Calderon received more than $89,000 from the drug and retail pharmacy industries over the past few years.
Sen. Calderon did not reply to specific questions, but pointed to a statement on his Web site saying he was "deeply disappointed" with the demise of his bill, and with critics who "completely mischaracterized [its] intentions." The statement asserted, "SB 1096 was about protecting patient health and reducing health care costs."
Pam Dixon, executive director of the California-based nonprofit World Privacy Forum, also opposed the bill. She said that in addition to its shortcomings, the measure was poorly timed. "What’s really tragic is that just as California is pushing new electronic initiatives — e-prescribing, assembling a diabetes registry, digitizing more and more information — we have a politician trying to give a marketing company a bite of the apple. Now is when we need to be protecting the exceptionally strong privacy laws we have, not weakening them."
So why would such a bill surface in perhaps the most pro-privacy state in the nation? Perhaps because in other states, pharmacies can already do this. No other state has the equivalent of California’s Confidentiality of Medical Information Act, so there is nothing to prevent pharmacies from selling patient information. And they’re selling that information, although not without controversy. Indeed, Adheris is still fighting a class-action lawsuit in Massachusetts for allegedly violating consumers’ privacy through just this type of campaign.
But what about federal law? Doesn’t the Health Insurance Portability and Accountability Act of 1996 (HIPAA) prevent this?
No. HIPAA was enacted by the Clinton administration to safeguard medical information. But according to Peter Swire, who was Clinton’s chief privacy counselor and helped draft the legislation, the law permits pharmacies to contract with outside firms to engage in reminder campaigns. As originally drafted, the law included an opt-out. But the George W. Bush administration ditched it in 2002, weakening the law. Swire said Calderon’s bill appeared to be an attempt to "shift California law to the federal standards."
Dan Rubin, CEO of Adheris, said California’s strict law hurts patients. He cited a 2003 World Health Organization study suggesting that "increasing adherence [to prescription drug regimens]… may have a far greater impact on patient health than any improvement in specific medical treatments." But to many in the health care community, the debate wasn’t about whether adherence was a problem — they all agreed it was — but about how to best address it.
Dr. Jack Lewin, former CEO of the CMA and current chief of the American College of Cardiology, said that although patient compliance is a "critical" issue, Calderon’s bill was a "Band-Aid solution." Lewin pointed out that non-adherence usually stems more from personal choice or denial than forgetfulness.
Dr. Sharon Levine, associate executive director of the Permanente Medical Group, said the problem with SB 1096 was that it was not "evidence-based."
"The science of non-adherence is in its infancy," she added. "We just don’t know what kind of effect, if any, a mailed piece of information is going to have."
But thanks to Flanagan of Consumer Watchdog, among others, Californians won’t need to worry about such mailings — for now, anyway. When asked if the bill was dead for good, Flanagan warned of the need for continued vigilance. "It can always come back," he said, adding that a similar bill, AB 1587, is being presented to the Assembly Judiciary Committee this month.