(NewsNation) — Doctors got $11 billion in speaking fees, meals, and research and consulting allowances from medical device and pharmaceutical companies last year, and a new law in California aims to help patients break down who is getting what.
Starting this month, doctors must now tell their patients about an online database that tracks payments health professionals receive from medical device and pharmaceutical companies, giving patients information to better inform their medical choices.
Wendy Knecht is the driving force behind California’s new law, after she found out a faulty implant was manufactured by the same company that paid her doctor hundreds of thousands of research dollars.
Knecht’s journey started when she underwent a preventative double mastectomy and subsequent breast reconstruction after learning she was a carrier of a gene that could lead to breast cancer.
“From the very beginning, I had something in my mind that (said) this is not right,” Knecht said.
After the surgery, she was in substantial pain.
“I knew that I should expect some pain from something like this major surgery, but it was way more than I ever thought,” Knecht said. “And then it never got better. “
It was the result of a failed medical device her doctors implanted during surgery, she said, adding that it was put there without her knowledge or consent. The company that made that device paid the doctor who performed her breast reconstruction surgery more than $500,000.
“Unbeknownst to me, he was doing research and being paid for this device that he used in my reconstruction that failed,” Knecht said. “And the only reason I found out is because the device failed, causing extreme deformity pain and needing a lot of extra surgeries.”
Knecht realized her doctor’s relationship with the medical device company after discovering the Open Payments database.
Established in 2014 through the Affordable Care Act, Open Payments allows patients to research their providers’ relationship with drug and medical device companies.
“I just went to my computer, put in my doctor’s name … and hundreds of thousands of dollars came up in payment from the Open Payment site,” Knecht said. “I was like, wow, this explained a lot.”
Upset by what she learned, Knecht sued her doctor, alleging malpractice and conflict of interest. The lawsuit settled for $1 million and her doctor admitted no wrongdoing.
“Had I known about the relationship and that this device was experimental, I would have been able to ask the right questions,” she said.
Knecht, however, remained compelled by her worry that others might find themselves in a similar position. She reached out to her local assemblymember, Adrin Nazarian, who shared her outrage.
“As I was learning and understanding the plight and the challenges that she was going through, one of the key components and the easiest one to fix was just to make sure that the rest of the public is aware of this website, and can make informed decisions,” Nazarian said.
After the two met, Nazarian authored and pushed through Bill AB1278, which took effect last week, that requires health care providers to disclose the Open Payments database to their patients.
“I myself was not aware of this website,” Nazarian said. “I only became aware of it because of my constituent and the work that we did together on this bill.”
The assembly member has since learned Knecht was hardly alone in her experience.
“Quite a few more people have come forward,” Nazarian said. “And interestingly, and sadly enough, almost all of them have been women, which tells you how disproportionately the absence of better information by and large impacts women.”
Oftentimes, the relationship between pharmaceutical companies and doctors allows the companies to better understand what treatments should look like and if there are better ways to address patients’ needs, Nazarian said.
“A great majority of the time, these payments do not pose a conflict,” Nazarian said. “But in rare occasions, they may.”
Oculoplastic surgeon H.B. Harold Lee said the law is a “good first step,” but could afford to go further.
“I think a physician who receives financial compensation from a pharmaceutical device company should have to obtain written consent from a patient about those disclosures,” Lee said. “Certainly, there’s a value amount that would be necessitated, whether it’d be $1,000 or $5,000 … that would be the proper way to obtain true informed consent for a patient.”
Knecht agreed the process could be more transparent still, and she would like to see a future where the onus isn’t on the patient to research the doctor, she said.
The California Medical Association fought the legislation and called it burdensome. NewsNation reached out for comment but did not receive a response from the group before this story was published.
Knecht has since recovered, but the yearslong process has left her cautious, she said.
“I use that database religiously,” Knecht said. “Most people think, of course, you’re going to know if your doctors are being paid by a device company. Of course, you’re gonna know if they’re promoting something, but they don’t always tell you.”
The Open Payments database is available to everyone in all 50 states. To look up your doctor, go to openpaymentsdata.cms.gov