Protecting Your Private, Prescription Drug Records

As I have written about on this blog in the past, the reality that our most private prescription drug records are not in fact private should be of increasing concern to consumers, legislators, and the courts. In fact, this dispute has now reached the Supreme Court. 

Now, I don’t want to belabor this point, particularly being that this is a privacy blog, but its more than just a privacy issue…its about the damage that the drugs themselves can do to people due to a pharmaceutical industry that is concerned far more about profit and deception than they are patient good health.

So when you’re talking about efforts to sell private prescription drug records to third parties, so drug manufacturers can better target their products to you (often times in an invasive and dangerous way), its more than just the violation of privacy – it’s the products themselves that should also be of concern.

So before I get to an LA Times editorial on this big Supreme Court court battle, let me first share just a few of my concerns about our nation’s growing addiction to pharmaceutical drugs in hopes of establishing the importance of strict privacy protections when it comes to our prescription records.

First, recent studies indicate that a whopping sixty-five percent of the country takes a prescription drug. In 2005 alone, we spent $250 billion on them. Another 100,000 Americans die each year from prescription drugs — that’s 270 per day - more than twice as many who are killed in car accidents each day.

Unfortunately, thousands of patients die from prescribed mistakes too, but this study looked only at deaths where our present medical system wouldn’t fault anyone. Tens of thousands of people are dying every year from drugs they took just as the doctor directed. This shows you how dangerous medications are – and why, as you’ll see, privacy is paramount.

Before I get to more of Big Pharma’s marketing strategies to further illustrate the importance of this issue, let me get into what exactly we are talking about in terms of prescription records privacy. For Californians, the good news is we have stricter protections against the selling and sharing of our prescription records than just about any other state (aside from New Hampshire, Maine and Vermont).

It was just a couple years ago that we (Consumer Federation of California) actively opposed (and successfully) legislation that would have allowed the sharing of confidential patient drug prescription information among pharmacies, third party corporations and pharmaceutical companies without a patient's consent. 

Californians rightly expect that their private medical records will be held in confidence by their doctors and pharmacists. But, if we had lost this fight, pharmacies could share prescription information with businesses that provide mailings to the patient – ostensibly reminders that patients should continue to take their medications. The reminder would appear to come from the pharmacy, but in fact it would be paid for by the drug manufacturer. 

The bill's main backer, Adheris Inc., is a subsidiary of inVentiv Health Inc., a drug marketing company currently being sued for privacy breaches related to patient prescription records. 

A patient’s doctor - not a third party marketing company - is the best source for informing a patient about how to manage his or her health condition. By intruding upon and confusing this relationship, this bill could have put patients’ health, as well as privacy, at risk.

For example, a physician might discontinue a prescription if a patient complained of an adverse reaction. Unaware of the changed course of treatment, the drug marketing company would continue sending reminders that appear to come from the drug store, urging the patient to keep taking the old prescription. The bill placed no liability on drug markets that provide bad information to patients.

The victory was an important milestone for California’s landmark medical records privacy law – a fight that is now playing out nationwide and in the Supreme Court.

The issue is a stark one: failing to protect prescription records would be a windfall for corporations seeking to track, buy and sell a patient's private medical records. This would represent a significant intrusion by pharmaceutical companies into the privacy of patients. By opening this Pandora's Box, consumers could wind up receiving mailings designed to look as if they came from the pharmacy yet conflict with what their pharmacist or doctor has recommended. Such a scenario would be a threat to their health.

At the time of this battle, Brian Leubitz of Calitics gave an exceptional description of exactly what we’re talking about. He wrote:

“But nowhere does the bill stop manufacturers from purchasing the data from pharmacies. In fact, the bill explicitly contemplates that "manufacturers and distributors" will be paying for these letters by requiring a disclosure on the letter. Furthermore, I'm not sure having 3rd party data brokers like Adheris (aka Elansys ) having the data is really that much more comforting than having Merck or Eli Lilly having it. In effect, this bill would moot a court case brought against Adheris for doing this already…

But to the greater issue, that of privacy….Mr. Rushing (worked on passing this bill for state senator Calderon) makes the argument that 49 other states have this rule to allow sales of pharmaceutical records, and why is California the outlier? There is a simple response to this: Californians value their privacy. We have the toughest privacy laws in the nation, thank you, Representative Speier, precisely because we feel that data warehousersWe needn't join that race to the privacy floor that HIPAA provides. Our privacy laws are, and should be, a model for other states.

That being said, there are health benefits of reminder communications for chronic conditions. However, they do not need to be sponsored. The pharmacy can send out these mailings now as could the prescribing doctor. In fact, despite whatever arguments the National Association of Chain Drug Stores and the California Retailers Association makes on the policy arguments that this is substantially better for public health (Rushing gave me a $150bn figure for nationwide savings if everybody took their meds on schedule), the fact is that the risk involved in the sales of these records outweighs the benefits. We can already provide reminders without sales of medical records financed by manufacturers or distributors. Even the California Medical Association agrees that we needn't travel this risky ground in the name of possible results.

So that’s a detailing of the fight we had in California, now let’s go to what the LA Times had to say in their editorial Your Rx or your privacy:

IMS Health Inc. operates in the shadows of the healthcare industry, gathering data that drug makers can use to sell medications more effectively. The data, however, are taken from the prescriptions that doctors write for their patients. That information is at the heart of a dispute over how far states can go to protect privacy — a dispute that has reached the Supreme Court, and one that could broaden the reach of the 1st Amendment in troubling ways.

IMS and a handful of market research competitors pay pharmacists for the details contained in prescriptions, including the name of the doctor and the patient, the drug prescribed and the dosage. They compile that information into databases that track individual doctors' prescribing habits, replacing patients' names with "de-identified" numbers. Such databases can be valuable to the public, potentially helping to enforce drug laws, find patterns in the spread of disease and spot variations in how medications are used. But the main use — and the one that pays for the databases — is to help pharmaceutical companies persuade physicians to prescribe more of their products.

That's one of the reasons states across the country have proposed or enacted regulations governing prescription data mining. Drug makers hire legions of sales representatives to pitch physicians in person about new products and new applications for older medications. They pay market researchers millions of dollars for information on individual doctors' prescriptions because it helps them find sick people (chronically sick people in particular) who could be treated with their drugs or who are taking their competitors' medications.

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This month the Supreme Court agreed to consider Vermont's appeal, and we hope the justices will be guided by the dissent written by 2nd Circuit Judge Debra Ann Livingston. As Livingston noted, pharmacies obtain sensitive information about doctors and prescriptions only because the state orders them to gather it for law enforcement reasons. Otherwise, doctors and patients might insist that the data be kept confidential. That information is every bit as sensitive as a hospital chart or a doctor's notes, and should be subject to equally effective protection.

Just because IMS doesn't supply patients' names to drug companies, that doesn't mean they can't be tracked individually. According to Meredith Jacob of the American University Washington College of Law, the databases assign unique numbers to pharmacies' customers that can be used to follow their prescriptions over time, helping drug makers spot the patients most likely to be customers for their new drugs and market those medicines to their physicians.

What's worse, the data about prescriptions could conceivably be combined with other records to reveal some patients' names. That's because "de-identified" data may provide clues that enable it to be matched against names in other databases. In one example of this technique cited in a brief by the Electronic Privacy Information Center, a researcher was able to use public records to name more than a third of the supposedly anonymized victims in Chicago's homicide database.

Click here to read more.

So let me just conclude by once again highlighting the practices and products of the pharmaceutical industry. There’s the cozy relationship they foster with the doctors themselves. For instance, the industry spends hundreds of millions of dollars on physicians every year. In one survey, 9 out of 10 doctors said they had recently taken something of value from the drug industry. And some of those doctors take hundreds of thousands of dollars each year from the industry. 

Melody Petersen, author of Our Daily Meds, discussed some of this, stating:

“The drug companies pay doctors to be their so-called consultants. They also pay them to sit on corporate advisory boards and to give lectures to other doctors. They pay for up to 80 percent of the continuing medical education that doctors need to maintain their licenses. If you ask a doctor if this is a problem, they will more than likely tell you no. But the studies show that even a small gift will sway doctors to write a prescription for a certain drug. The truth is that doctors are no longer independent gatekeepers who keep us safe from drugs we don’t need. Far too many of them are financially tied to the industry. They are writing the prescriptions that their financial backers want them to write.

The industry’s unlimited hikes in prices have helped make health insurance unaffordable. This is also why wages of American workers have stagnated. When health premiums rise, employers must get the extra money.

…The answer is that we really don’t need many of those kinds of drugs, those lifestyle drugs that don’t save or lengthen lives. But the drug companies have discovered there are billions of dollars to be made by selling pills to Americans who worry about getting old, but are otherwise healthy. It’s so easy to fall for the marketers’ claim that a little pill will enhance our lives and keep us young forever. 

It is a common sales tactic in the industry to have sales reps push doctors to prescribe a drug for many uses and patient conditions. The drug companies do this even though it is illegal to promote a drug for anything other than the condition the FDA has approved it for…The drug companies have made Americans believe that almost anything should be treated with a pill.

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The prescriptions are driven by the promotional efforts of the industry. Today, the companies start promoting a drug years before it even goes to the FDA for approval. Some drugs have promotional campaigns funded by more than a billion dollars. It was around 1980 when the big drug companies learned that they could make far more profit by focusing their efforts on marketing rather than on the truly hard work of scientific research and finding new drugs.

In America, if you’re lucky enough to have health insurance, you can easily get too much medicine, too much health care. Many Americans don’t understand that all of health care has risks and that too much of it can actually shorten your life. Is this one of the reasons why we’re falling fast in the world rankings on life expectancy? No one knows for sure. But it’s obvious that all that money we spend on prescriptions and doctors is not giving us an advantage.

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Overall, the biggest problem is that the news media is not objective when reporting on medicines. Much of the news coverage on prescription drugs exaggerates their potential benefits and glosses over their risks. Many news stories about new drugs don’t even mention the side effects. People are getting distorted information on prescription drugs. Many of these news stories are little more than press releases that come straight out of the drug companies’ marketing departments.

With that all said, a pharmacist friend of mine made a point I thought I should reiterate: That being there's no reason to believe that most pharmacists knowingly participate in sharing prescribing information or are aware of how Verispan or IMS gets their data. Chains and PBMs, which make up a majority of the business, are more suspect and don't make it a habit of involving their pharmacy staff.

My point in all this is simply that the LAST THING Americans need is EVEN MORE aggressive drug marketing techniques…and more of their private, prescription records becoming increasingly public – and sold for profit.