Patients seeking financial assistance for $750k Biogen drug must sign away PHI

For patients with spinal muscular dystrophy, affordable treatment comes at a cost.

Biogen offers a financial assistance program for its treatment Spinraza but there's a catch: patients must sign away their protected health information to the company, reports the Waco Tribune-Herald.

Here are five things to know.

1. Spinraza, approved in December 2016, is the only treatment for spinal muscular dystrophy on the market. The drug costs $750,000 for the first year of treatment and $375,000 annually for following years.

2. To join Biogen's financial assistance program, patients must sign a wide-reaching privacy authorization form, giving the drugmaker access to their PHI for a decade, according to the report.

3. By signing the form, patients agree to let Biogen use their PHI for patient support services, marketing, research and "other internal business activities," according to the report. The form also says the information may be used to help Biogen develop new products, services and programs, according to the Waco Tribune-Herald.

4. Bonnie Kaplan, PhD, a bioethicist at New Haven, Conn.-based Yale Interdisciplinary Bioethics Center, criticized Biogen's privacy authorization form, saying patients have no choice but to sign it.

"These drugs are necessary to someone's health and well-being, perhaps to someone's life. Almost no one can afford them at these prices, so people who need these drugs have little choice," Dr. Kaplan told Waco Tribune-Herald via email. "Their consent really cannot be given freely."

5. Biogen spokesman Todd Cooper said the program is optional and that patients' personal information is used to help get the drug covered by insurers, according to Waco Tribune-Herald.

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