Measure would let drugstores pass prescription information to bulk mailers

I must say that despite the disappointment of SB 1096 passing the Senate by a single vote last week, the continuing press attention on the bill does give reason to be hopeful.

As you may remember, SB 1096 (Calderon) - sponsored by a drug marketing firm currently being sued for privacy breaches - would allow the sharing of a patient's confidential medical information regarding prescription drugs among a pharmacy, third party corporations and pharmaceutical companies.

For more information on the bill see previous posts, beginning with this one.

Before I get to the article by consumer rights champion David Lazarus of the Los Angeles Times - which now faces an Assembly vote next week - I want to direct everyone to CFC's Action Alert opposing this bill. Tell your Assemblymember (and the Governor) to protect patient prescription records!!

David Lazarus writes:

Under legislation that quietly passed in the state Senate on May 29 and is making its way through the Assembly, drugstores would be free to share patients' prescription records with companies that specialize in bulk mailings.Money would change hands along with people's personal data, but, as you'll see, it's not exactly clear who's paying whom.

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The reality, critics say, is that this is an effort by pharmaceutical companies to help ensure that patients stick with expensive name-brand drugs and not stray toward cheaper generic alternatives. They say it also could lead to privacy violations."Your private medical information is being transferred from one database to another," said Jerry Flanagan of Santa Monica-based Consumer Watchdog. "Once that genie's out of the bottle, it's very hard to get it back in."

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SB 1096 is surprisingly murky when it comes to who is supposed to benefit from the legislation. The bill lists its "source" as Adheris Inc., which describes itself as "the leader in prescription-drug patient behavior modification."Adheris used to be known as Elensys Care Services Inc.

The company changed its name after it came to light in 1998 that CVS and other pharmacies were sending people's personal medical information to Elensys without their permission. A related lawsuit is pending.As Adheris, the company remains in the business of reminding people to take their meds. But critics such as Consumer Watchdog's Flanagan say Adheris' emphasis is on promoting name-brand drugs and keeping patients loyal to specific brands.

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Calderon's bill appears to anticipate that mailings may be paid for by drug makers or companies such as Adheris and not just by drugstores. It says disclosure is required "if the written communication is paid for, in whole or in part, by a manufacturer, distributor or provider of a healthcare product or service."I pointed this out to Calderon."I'm not familiar with that," he replied. "I've never seen that part of the bill."This is his bill, remember.

SB 1096 would allow people to opt out at the pharmacy counter from receiving any mailings from Adheris. But it's unclear whether you could opt out from the company accessing your records. The bill says the opt-out covers "receiving a written communication from a pharmacy." It's silent on whether your private data would still be sent to Adheris' computers.

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If the reminder mailings are so useful, why not just ask people to opt in? That way you'd be giving your permission upfront, rather than requiring people to cancel a service they may not have been aware of in the first place."The problem is that opt-in doesn't work," Calderon said, saying that other states have found that if you ask people to sign up for reminder programs, they usually decline. Tells the whole story, some might say.

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Since 2002, Calderon has received at least $89,000 in contributions from drug companies and pharmacy chains, according to public records.

The Sac Bee also covered the bill today:

Privacy concerns have been raised about a bill moving through the California Legislature that would let pharmacies partner with drug companies to send out letters reminding patients to refill their prescriptions. Senate Bill 1096 by Sen. Ron Calderon, D-Montebello, is sponsored by a medical information company facing an invasion of privacy class-action suit that alleges some practices the legislation would make legal.

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The main sponsor of SB 1096 is Adheris Inc., a Massachusetts company that has been named in class-action lawsuit in San Diego Superior Court.

The suit was filed on behalf of patients who allege their privacy was breached when they received letters from the company encouraging them to buy more medication or switch to an alternative prescription drug made by the same drug company.

Privacy advocates allege SB 1096 would open the door for pharmaceutical companies to promote their products in the guise of reminder letters.

"The bill sponsor is a marketing company employed by drug manufacturers to increase the sale of prescription drugs," Jerry Flannigan of Consumers Watchdog said in a prepared statement.

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It also would let pharmaceutical companies pay for the mailings, but require pharmacies to disclose that if they were compensated for the mailings. "That's what this is about – allowing pharmacies to increase their marketing," said Jeffrey Krinsk, an attorney who is representing plaintiffs in the San Diego lawsuit.

I also highly suggest you check out this outstanding analysis by a blogger of the bill, who incidentally got contacted by Calderon's office himself to debate the issue (just as I got a call from an Adheris lobbyist for the same purpose).

I want to post a few choice clips from Brian Leubitz's piece here too, as he is actually put in the position of defending a quote I made in the Chronicle. More than that, is his clarity in regards to the various semantic tricks proponents of this bill are so proficient at utilizing:

I described the purchasers of this data as "pharmaceutical marketers." The accuracy of that description is incontrovertible; clearly the people buying this data can be fairly described as marketers. Mr. Rushing (Calderon's office) was quite keen on saying that the data wasn't going to the manufacturers but rather to these third party data brokers. Now, that might be true in practice, but there is no limitation in the bill as written which would stop the manufacturers from attaining this data to send these letters themselves.

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...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. Retroactive immunity is in vogue these days I suppose. (Note: It's not clear that this would moot the court case, that would have to be resolved by the courts.)

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But to the greater issue, that of privacy. Mr. Rushing 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 warehousers shouldn't have access to every morsel of information about us. As my mother always said, just because everybody else is doing it doesn't mean that we should too. We needn't join that race to the privacy floor that HIPAA provides. Our privacy laws are, and should be, a model for other states.

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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.

With all that said, let's join together and make sure members of the California Assembly understand that our medical records and our civil liberties are not for sale.