Would You Give Up Your Privacy for Free PCSK9 Copay Card?

This is what Amgen is asking people to do and for a very few, this might be something to consider. For the rest of the people, privacy should be carefully guarded. Amgen feels that its extremely expensive new cholesterol drug, Repatha, is worth surrendering your privacy.

“Doctors, pharmacists, patients, and others are now starting to learn that in order to receive financial assistance from Amgen for its expensive new cholesterol drug Repatha, patients are being required to surrender rights to their personal information, including their personal health information. The information will be freely available, with few restrictions, not only to the company, but to unspecified third parties.”

Marilyn Mann, a respected patient advocate who has family members who have familial hypercholesterolemia, suggests the policy be revised so that patients in financial need can receive assistance without having to agree to such a wholesale waiver of their privacy rights.

The Repatha copay program is part of the larger Repatha Ready program, which supplies "support services to help you start and stay on Repatha." They don't want to lose their lucrative profits. The supposedly most important part of the program is a copay card which gives patients access to the drug for only $5 a month. The program includes email reminders and a free needle-disposal (sharps) container. For patients to receive this, they must first sign over their rights to privacy to Amgen to use their personal information.

Some of the language should scare you. “I understand that Amgen may use my personal information, including my personal health information, for 10 years once I accept this Authorization or for a shorter time period if required by state law.” The agreement specifically states that by agreeing to the terms, patients may lose federal HIPAA protection. Further, the company specifically warns that there is nothing to prevent it from sharing your information with third parties:

Copay cards are normally used by patients to offset their out of pocket costs, and the companies used them as promotions to gain and maintain market share for the long term to maintain profitability.

The Amgen plan seems to be taking a different approach. They are seeking market domination and a novel data source. The use of patient data might well be part of the broader strategy to find more patients by mining new sources of data. This move by Amgen represents the next step in the merger of digital technology and biotechnology, i.e., if you' re not paying for the product, you are the product.

With your personal information, they can sell this to other companies looking at patient data-mining and you, as the patient will be bombarded with information to convince you that you need their products.

To this, I say – NO THANKS!

You may want to pass this information on to friends who may be at risk for diabetes.