This will be a highly-charged opinion piece for me…so as you read what I am writing, please know that I am seething and upset and just needed to vent.
A study of Elagolix (aka Orilissa) hit my inbox recently and I just opened it today. It was run by Abbvie, of course. And it compares Elagolix to Lupron to see which is more cost-effective in possibly giving women with Endo a greater quality of life. So, it’s win-win for Abbvie since they make both of those drugs…
Last week I wrote about the CMS site that shows what payments healthcare providers have received from companies (2013 through 2017). It was kind of eye-opening for a lot of us.
Then, one of our local EndoSisters asked if I could put it in a format to compare the local doctors here in California that many of us go to. Of course, I chomped at the bit for any excuse to make a spreadsheet…
And it was even more eye-opening. I gathered the data from the CMS site, compiled it all into a visual format for each of the doctors that we’ve recommended (or not recommended) to each other in our private Bloomin’ Uterus support group. I’ve shared this data with my girls, but wanted to also share it with you guys. Not every one of our doctors showed up on the list (yay!).
I encourage you to look up your physician on the CMS OpenPaymentData site. Look at each year. Analyze the payments: was it for food, consultations, research, or education? Feel free to jot down notes and ask your physician what the payments were for. And decide if, based on their answers, you feel like continuing your care with them.
Why is this so important to me?
As a woman who suffers from Endometriosis, our prescription treatment options are limited and chock-full of side effects. Birth control pills, IUDs, Lupron Depot, Orilissa, Letrozole: medications that only mask symptoms and do nothing to stop the progression of the disease. And some of the physicians that we go to seem to have been paid a lot of money by pharmaceutical companies for consulting, research, and other fees.
…which leads me to think their treatment plans may be biased. But that’s just me being a conspiracy theorist and (without having spoken to these physicians) assumed it can be a sign of their integrity; or lack thereof.
BUT I wanted to share the spreadsheet with YOU! Again, all of the data was taken from the Open Payments Data webpage. There’s a “Master” tab to view all of the entries of our physicians, then each doctor has their own individual tab so you can see the breakdown of payments from companies, as well as the percentage of what those payments went to (food, lodging, speaking, research, etc.). The “Payee” column has hyperlinks to the companies, so you can find out what they make (and figure out why they were reaching out to your healthcare provider). Many are pharmaceutical companies, but some are also medical device manufacturers, surgical equipment vendors, etc. And many of the payments to physicians are purely for food and beverage, but a few of the physicians have giant chunks of pay for research, funding, and consulting. I again encourage you to talk to your provider to find out what these payments may have been for…and if it influences their treatment of your symptoms.
And to those of you who don’t want to spend the time scrolling through a spreadsheet (especially if you’re on your smartphone), here’s the breakdowns of the doctors our Bloomin’ Uterus San Diego & SoCal girls have seen (and either recommended…or not recommended):
There’s a site available where we can now look up our physicians to see what they’ve been paid by companies for their time at speaking engagements, travel, training, and even research.
Why is this helpful?
It might not be. But it’s a wonderful way to get a snapshot of what companies may be lining the pockets, and possibly influencing the choices, of your doctor. (Yes, that’s the conspiracy theorist in me coming out).
Open Payments Data is run by the Center for Medicare and Medicaid Services has a searchable database where you plug in your physician’s info and it brings up their data for the past few years. Or you can search by company! According to CMS, the site was created “to provide the public with a more transparent healthcare system.”
For example, the image above is a breakdown of the top 10 physicians paid by Abbvie, Inc. in 2017 for speaking at events, consulting fees, grants, royalties, education, travel, food, and lodging.
A further breakdown of payments is available, telling you how much a physician was paid for each category (speaking, food, lodging, etc.). If you have questions about what the payments were for, it’s best to reach out to your physician and ask. The site doesn’t provide specifics; just data.
I’ve already looked up my excision surgeon, my colorectal surgeon, my primary care physician, and a few other surgeons I’ve heard of. It’s been fun! Have at it…and strike up a conversation with your physician if you feel so inclined.
Here’s the 2017 general payments breakdown for my excision surgeon, Dr. Mel Kurtulus:
And here’s the 2017 general payments breakdown for a popular Endometriosis physician down here in San Diego, Dr. Sanjay Agarwal:
Notice the difference? I sure did…
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
You may have seen news articles and press releases flying around the Internet since yesterday regarding a new drug released to manage Endometriosis pain. I wanted to share this with you because, although I’ve no intention of taking the drug myself, I know that it may help women who suffer. And it may help better educate you on your decision.
I’ve been following it for a while and you can read my thoughts about AbbVie’s SpeakEndo commercials and website, as well as their expedited application for FDA approval, and the track records of other drugs that have done the same. And according to Business Insider, Orilissa may cost approximately $850 per month, or roughly $10,000 per year for prescriptions (I’m assuming those figures are calculated without health insurance). Orilissa is estimated to hit markets for prescriptions in August of this year.