Amgen Takes The Pledge To Respect Patient Privacy

In response to criticism Amgen appears to have greatly tightened its corporate privacy policy regarding patient information. The company has published a “privacy pledge” to US patients” and says that it will  soon modify the authorization agreements that required patients participating in the company’s drug copay programs to surrender rights to their personal and health information.

The move appears to be in response to an “uproar” of criticism sparked by my earlier story reporting on a previously little known Amgen requirement involving the Repatha copay program.

An Amgen representative said that after an assessment of the patient authorization form “we recognized that some patients may forgo important patient support services because of privacy concerns, so we created an updated patient privacy authorization across our product portfolio.”

In its statement Amgen said that it “respects patients and customers and takes the protection of their privacy very seriously.” Responding specifically to concerns that data acquired by Amgen could be sold to third parties, the pledge states that “Amgen does not and will not sell or rent patient information to marketing companies or mailing list brokers.”

In its pledge the company also states that it will only use “personal identifiable information for the purposes stated in our Privacy Authorization for our Patient Support Programs and as necessary to provide the services and/or programs the patient or customer chooses to enroll into.”

An Amgen representative told me that the new authorization agreement will more clearly explain the purposes for which the company collects personal information. For instance, the new language will state:

“I authorize Amgen and its contractors and business partners (“Amgen”) to use and/or disclose my personal information, including my personal health information, only for the following purposes…”

The representative gave an example of an outside contractor such as a nurse-educator helping a patient give a self injection.

I asked Amgen to elaborate about some key remaining uncertainties. The Amgen representative, Kristen Neese, told me that “Amgen only collects the information that is necessary to operate the programs a patient enrolls into and only shares patient information with our business partners/contractors who support the services and programs for which a particular patient has enrolled.”

For the Repatha copay card program, she said, “we only collect name, contact information and whether the patient has a Repatha prescription (and information to confirm eligibility).”

I also wondered whether patient information gathered by the program could be used for the purposes of either scientific or marketing research. “No,” Neese told me, “we only collect or use patient identifiable information for the purposes listed in our authorization, scientific research and marketing research are not included in the authorization.” In addition, she said, patients “have the ability to opt out of all programs.” (As I reported last month, Amgen and other companies, including its rivals Sanofi and Regeneron, have adopted innovative new data-mining strategies to ease the identification of candidates for their new cholesterol drugs. It now appears that the copay program will not play a role in that initiative.)

 

The Amgen representative also said that although the authorization agreement allows the company to disclose information that would otherwise not be permitted under HIPAA, the company wants to let patients know that it is not asking patients to give up all their rights. The new agreement will contain the following text, which includes the legally required statement that federal privacy laws may no longer apply:

“I understand that once my personal health information has been disclosed to Amgen, federal privacy laws may no longer apply and protect it from further disclosure.  Amgen agrees, however, to protect my personal health information by only using and disclosing it as stated in the Authorization or as otherwise allowed or required by law.  I understand that Amgen does not and will not sell or rent my information to marketing companies or mailing list brokers.”

 

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