A bill passed its second California Senate committee this week that would give an ever-wider circle of companies access to Californians’ private medical information. SB 1096 by Senator Ron Calderon would allow pharmacies to give patients’ medication histories to third-party marketing companies, without the patient’s knowledge or consent.
(Here’s our letter of opposition to the bill, and a story in the Whittier Daily News.)
If anyone wants a look at my medical records, they should have to get through me to do it. That’s the way I like to think it works. But the recent LA Times investigation into how a laundry list of celebrities had their medical records snooped at UCLA just reminded me how vulnerable my private health information really is. This is especially true as more and more data is stored electronically and can be instantly collated and cross-referenced to give whoever has access a complete picture of me and my health.
When I testified against the bill on Tuesday, Senate pro Tem-elect Darryl Steinberg argued (before giving the third vote needed for the bill to pass out of committee) that the reason for sharing the medical information – the marketing company would send mail to patients reminding them to keep taking the drug they were prescribed – should override any mere “principle” of privacy. But nothing is more sensitive than information about my health. It should be my prerogative to decide who knows I have cancer, or AIDS, or arthritis for that matter. That’s personal, not principle.
In any case, this supposed “patient service” is likely to do more for the pharmaceutical company by giving them direct access to advertise than it would do for the patient.
The marketer drug companies hire is likely to encourage a patient’s continued use of their company’s drug. But how is the marketing company supposed to know the course of treatment laid out by a physician? I’ve had instructions from my doctor that didn’t match the directions on the prescription bottle. Will a patient listen to her doctor’s instructions to taper off the medicine once symptoms go away, or follow the marketing company’s reminders to get a refill?
Who knows if the bill’s sponsor could provide relevant, or even safe, advice to patients. If they can, great, but every patient should have a chance to decide whether they want their records shared to receive that information in the first place — before the information is out there and possibly already compromised.