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DES: I Want to Trust My Medicines…

Suzanne B. Robotti
Suzanne B. Robotti Executive Director
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… But, sadly, I don’t. As a DES daughter and as a mother who hasn’t received forthright answers on drugs prescribed for her son, I’m cautious. Through my own experience I’ve learned there are two issues: one is that a pharmaceutical company can market a drug before proving that the drug’s long-term effects will do no harm; second, perhaps worse, is that some health care providers are offered and accept money or other incentives that result on more prescriptions being written for a particular drug.

I wrote about the issue of unknown long-term effects on 1/11/2013, Eli Lilly Pays for DES Damages…Again. Today I learned about an Act within the Affordable Care Act called the Physician Payments Sunshine Act. In the various articles I’ve read about it, it calls for transparency for all payments from drug, device or medical supply company to a physician. Categories of payment include (but are not limited to) gifts, entertainment, research funding, honoraria, and consulting fees. it also calls for reporting of ownership or investment interest, royalties, license fees, dividends, profit or stock distribution and charitable contributions made. It takes my breath away that there are that many ways for a pharma to syphon off money to a physician.

Why should you care? Because your physician might be swayed to prescribe one drug over another more because of the financial incentive than the specific benefits. As reported in Kaiser Health News, “Other physicians acknowledge that donations from industry – even small ones – can create conflicts of interest. “There is extensive literature suggesting that gifts can influence behavior,” says Dr. Robert Steinbrook, adjunct professor of medicine at Dartmouth Medical School.” know, my doctor wouldn’t do that either. Until the Sunshine Act becomes effective we have Dollars for Docs, a web site from ProPublica.orgthat 12 companies disclose speaking fees, consulting fees, research, travel fees and meals on. Not every dollar paid to doctors is tainted, some speaking fees are legitimate, research needs to be conducted. But it is worth taking a look at the total amount of fees and gifts your physician accepts.

Many years ago, while pregnant with me, my Mother’s doctor received direct payments from a pharmaceutical company to give her a drug that had already been proven dangerous for pregnant women. In the 1980s my attorney told me she found my Mother’s doctor’s name on a list of doctors paid to “test” DES. My Mother was never told that she and I were being treated as lab rats (with all due thanks to lab rats).

The 40 or so drug companies who made DES paid out millions in damages to women with reproductive anomalies and rare cancers. There was no admission of guilt. There was no one put on trial for the murder of those women who died of clear cell adenocarcinoma. I asked my lawyer to sue my Mother’s doctor, who had benefited prescribing and dispensing DES. I was told doctors are completely protected, even though he had to know that he was giving my Mother a drug that put her pregnancy at risk.

A couple of weeks ago Eli Lilly started payouts again in a second wave of lawsuits, DES daughters with breast cancer caused by DES exposure in utero. Again, no admission of guilt and no justice for those women who have and will die from breast cancer brought on by DES exposure.

Could this DES nightmare ever happen again? We the people need to be able to trust that the drugs prescribed to us by our health care providers are the best choice for our condition — separate from the influence of drug company advertising, continuing ed trips and free samples. Not to mention money. It’s shameful that, at least in the past, some doctors were offered and accepted money from drug companies either in the form of consulting fees or other, it was clearly tied to prescribing a particular medicine. It will be more shameful if we don’t  take this opportunity to shed light on the payments.

Here are links to a couple of the articles I referenced:

MedPage Today, Jan. 16, 2013
American Medical Association, Sept. 20, 2012
Kaiser Health News,April 26, 2010
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