My friend Jeanne over at Chronic Healing wrote an article that I simply must describe here.
Her article, titled “Endometriosis Patients Viewed As Cash Cows?“, addresses a rhetorical question that’s been brewing in my own mind for quite some time.
I am subscribed to a number of news alerts, medical journals and publications (as is my friend Jeanne). Every so often, I’ll see something like, “Newly published market report on Hormonal Contraceptives – Since the 1960s, hormonal contraceptives have been widely used as effective birth control in the developed world. Although they are mainly used to prevent pregnancies, they can be used for treating other conditions such as acne, endometriosis, and polycystic ovarian syndrome. In 2008, the hormonal contraceptives market was worth $6.2 billion across the seven major pharmaceutical countries.” (Nov. 27, 2009)… and I’ll think to myself, “Hm! Me being sick sure does make a lot of money for some people! Amazing how I’m still not well, and how these companies are booming!” But then I let it go without bitching about it on my main Living With Endo site.
The latest such news item was titled, “Global Endometriosis Market to Grow to $1.1 billion by 2017 Says Latest Report“, and Jeanne checked her news alerts before I did, and had something to say about it:
Yet another “endometriosis pipeline assessment & market forecast” has been released. Who is looking out for the endometriosis patients in this world of people trying to make money off the backs of endometriosis patients? With 89 million endometriosis patients worldwide, I wish I knew of an endometriosis organization that had my back. Sadly, I don’t feel there is an organization that fits this description.
I took the discussion to my facebook page, where I had an exchange with my friend D.
D: _everyone_ who has a chronic illness is seen by big pharma as a revenue stream. I know this for a horrible fact.
Steph: yes, it is true. Jeanne touched on that in her article, as she has multiple chronic illnesses.
There’s just this wave of people cheering on endo organisations and doctors, without really doing background checks so to speak, and so her article is a wake-up call for people.
D: to expand, I can’t speak to the subject of nonprofit interaction with patients and profit, but from where I’m sitting (…the corporate “for profit” managed care industry…) there is a definite emphasis on “managed care” and specifically not on curing anything. The people running these companies would never outright SAY it, but they have a vested interest in making sure people stay sick, and stay dependent. Cures for ANY of the big life-changing-but-manageable illnesses (Diabetes, Endo, take your pick, theres lots more) would instantly dissolve multibillion dollar businesses PER DISEASE. You can be damn sure the companies running those businesses don’t want that to happen.
I’m not usually one for tinfoil hats, but in this instance, it’s really really hard not to wear one.
D: The magic words are “cure” vs. “managed care”. If you see “managed care” the likelihood is that money comes before wellness.
Of course, if you see “cure” first, then it’s just as likely they won’t have a dime to their names to do the research with…yay American medecine.
Steph: this is why whenever I see anything for my illness and my father-in-law’s illness advertised or discussed from A Certain Corporation, I roll my eyes. I know for damned sure they don’t give a rat’s ass about us getting better.
In fact, the stuff touted for endo care from A Certain Corporation, as well as any private, public, for profit or not for profit joint at this point so far has only been full of people who lie, cheat and steal at our expense, with drugs that only hurt us worse, not help us.
This INCLUDES the biotech firms doing DNA studies on us – they SAY they are doing this for a cure, but you read their quarterly earnings reports or studies published in medical journals (I’m subscribed to several) and all you see is language indicating they want to be FIRST to use the DNA studies to create a new DRUG THERAPY, not a f***ing cure.
There’s two endo orgs slinging mud as we speak, because one got all pissy that the other was first in publishing data. So the other went and did a smear campaign on the integrity of the data. It’s ugly business being so charitable towards us poor, helpless little females with endometriosis.
Then there’s the doctors, who sit on the technical advisory boards for several competing organisations and biotech firms at once.
Hello, conflict of interest? Hello lining your pockets, much?
Lastly, there’s the butchers, making money off of maiming us further (*cough*nezhat *choke*metzger *ahem*there’s more).
It’s slow work, but I’ve got a database going on ALL of these choads.
You are most certainly justified in the tinfoil hat.
Be sure to check out Jeanne’s article, titled “Endometriosis Patients Viewed As Cash Cows?”
If I wasn’t already bitter enough, I went searching for images of a retroverted uterus, because I’m wondering if half the clotting that happens during menstruation is due to the retroverted state of my uterus. While searching the interwebs, I happened across The Household Physician website, which shows the following treatment for a retroverted uterus:
Click to enlarge, and note how the caption specifically says that AIR will hold the uterus in place until a pessary can be placed.
The website of course offered no dating of the material which it espouses, so I did some digging and found the original work over on Google Books, by the same title; The Household Physician
This book was published in 1895. It is important to note that 115 years later, pessaries are *still* being used to “treat” a retroverted uterus.
I guess I should be thankful that leeches are no longer being used.
I’m going to ask if it is possible for my surgeon to surgically correct my retroverted uterus during the laparoscopy.
But honestly, you’d think that in 115 years, the medical establishment would figure out how to help instead of torture women. We remain second class citizens (or worse in some parts of the world) as far as health care goes.
And that is my bitter rant today.