Impedimed ethical concerns

lunakin, thanks for reading and posting.

This behavior by impedimed is a serious concern: Binney alerted the NLN who have spoken to the company's leaders about deceptive marketing and the liability of soliciting patients' private histories to post on the internet, and the fact that their site is created to look like a support group and is wholey owned by impedimed so is really marketing.

I've spoken the Lymphatic Research Foundation, and they've also expressed their concerns to the same people

And, guess what--nothing has changed!!!

Binney found that women she knew posted on their facebook page and alerted them, and I posted comments that they promptly removed.

I had some researchers check into the utility of bioimpeance in LE and it's limited: the patients have to empty their bladder, rest for a while, no exercise, no caffeine, and it is of no value if there's any fibrosis. And serial, accurate measurements need to be done.

I'm so disappointed in the Avon White paper--as it was clearly sponsored by impedimed.

Also, I heard from a LE therapist that they had an inservice from impedimed who offered up lymphconnect.com as a "resource" and didn't admit they own it and post women's stories on Facebook.

As I found on breastcanceraction: http://bcaction.org/2011/06/16/spinning-science-a-case-study-in-conflict-of-interest/

Ultimately it is patients, not pharmaceutical companies, who pay for the advertisements masquerading as scientific publications, the duplicate publications, the over-counting, and the spinning. They pay with their money, their health, and their lives. Conflicts of interest may undermine the credibility of journals, authors, and science itself, but it is patients who, in the end, suffer the consequences.

Well, we've tried, but I doubt anything will change, except that hopefully some women will figure out that marketing has prevailed over science here, and it could impact our treatment, diagnosis and insurance coverage.

Kira

I know this thread doesn't generate a lot of discussion, but here's why it's important to all people with LE:

Impedimed has marketed their product, the L-Dex via the use of "thought leaders"--prominent researchers in LE who have inadvertantly (or advertantly) marketed the device via "scientific literature"

Here's a Wall Street Journal interview with a physician who wrote on medical ethics "White Coat/Black Hat" http://blogs.wsj.com/health/2010/09/15/health-blog-qa-white-coat-black-hat-author-carl-elliott/

JAMA reviewed the book and said (12/28/11)

More nefarious is the use of "thought leaders"-physicians who have influence over other physicians at conferences and other venues. These opinion leaders can either be high-end academics or the creation of pharma. 

What does it meann for us?

1) Bioimedance is being pushed as the ultimated diagnostic tool for LE--and all the evidence says it can be one of the tools, but has significant limitiations --there is a diclaimer that the L-dex is not intended to diagnose or predict LE on its website.....Yet the message was that they could diagnose LE at an early enough stage to reverse it--and who of us doesn't want our LE reversed??

2) Impedimed has "corrupted" the LE literature--the Avon White Paper used some very prominent LE researchers and orgainizations--the NLN, the LRF to endorse what is not scientific literature but really a marketing tool --the conclusion is that everyone should work to get insurance coverage for bioimpedance

3) They created a fake website pretending to be a group of patients and solicited private medical histories that they put on facebook, with no honesty about who funded the site or any respect for medical privacy.

The lack of an objective manner to diagnose LE is a real problem and we all face it every day--when we're denied care/coverage. Biompedance, if performed correctly--may help support the diagnosis of LE, but unfortunately it's not the answer to our problems. And it has significant limitations.

When our handful of researchers and organizations are hoodwinked into supporting poor science by a company that is marketing its device, it has the potential to harm us all.

When we post our personal medical histories on a site that has no privacy, we're violated.

Why did only Binney and I make the connection? With the help of the women on this forum--we posted about the lymphconnect site and got the advice that it was marketing.

Once the LRF and the NLN and the authors of the study were informed, they were uniformly upset. As was the LANA board.

We need real breakthroughs in diagnosis and treatment, not false marketing.

This impacts all of us with LE.

Kira