Wendy Knecht is fighting hard to help pass a proposed California bill that would require doctors to let patients know about a free government website called Open Payments through the Centers for Medicaid and Medicaid Services.
“We didn’t know about that and my husband’s a doctor!” Knecht said.
The site lets users track how much money a doctor or surgeon has accepted from drug companies or device manufacturers each year.
In 2015, Knecht had a double mastectomy, and she says her doctor never told her the device she was about to receive wasn’t FDA approved in that situation.
“[The doctor] just said, ‘This is what I used,’ and we had no idea that it was not meant for that purpose, nor that he was doing studies at the same time, and he was the highest paid researcher in the country for this device by Allergan,” Knecht said.
Immediately after the operation, she began experiencing severe pain and later learned the mesh device had malfunctioned.
“All these little silk particles were just floating around in my chest,” Knecht said.
She sued, which eventually settled for $1 million.
“It just seems preposterous that a doctor doesn’t have to tell you that they’re using something, either a drug or a device that they’re being paid for by the company to use,” Knecht said.
She reached out and got the attention of her Assembly member Adrin Nazarian, who ended up authoring AB 1278.
“There are a lot of wonderful government programs that exist, but if we don’t know about them, how are we going to access them?” Nazarian said.
Both Knecht and Nazarian argue more transparency and disclosure can only improve the patient/ doctor experience and that the bill is not meant to stifle innovation.
“There are some doctors that have invented life saving devices and who are receiving royalties. Obviously, if you’re aware of this, there’s nothing wrong,” Nazarian said.
“If I had those facts, I would have made a completely different decision,” Knecht said.
The California Medical Association did not respond to our request for comment, but has previously stated it opposed the bill because it “… only adds to the litany of unnecessary burdens that divert physicians away from what they should be doing — providing care to their patients.”
Nazarian and Knecht disagree and say the financial effects are minimal, basically the cost of printing paper or an electronic notification.
“I think if she was better informed about the amount of payments her surgeon had received, it would have triggered more questions,” Nazarian said.
“If I’m an informed consumer, how many other people are in the same position that I’m in?” Knecht wondered.
For her and thousands of other patients across the state, the law would bring peace of mind, knowing they’re getting the best information, regardless of a doctor’s personal interests.