Importance of Bringing topics up to your doctors: if it’s ‘off label’, odds are they won’t bring it up to you.

I just wrote this in a comment section in Facebook, in response to a comment about why I suggested IVIg for someone.

Most people don’t understand the legal and insurance company pressures doctors are under every day, and it’s not that they don’t want to offer the best medicine to their patients, it’s often that they feel like they can’t — the insurance company will hassle them or the fear of being sued—

It’s just safer to play the ‘standard of care’ game, even if there are much better options out there…

The only way to know what I know is because I’ve been neck deep in medical industry hell for almost 15 years. This is my way of thanking the world for still being alive—sharing what I’ve learned a long the way 🙂


D Lynn You’re correct, and IVIg isn’t even confirmed as a treatment for myocarditis or pericarditis, I just suggested it as something to consider…we obviously don’t know all the facts of the case, but in my experience with medical professionals, I’ve learned if there is a potential treatment that’s expensive that insurance won’t cover, doctors almost never even mention it for discussion.

(They assume either patients either can’t afford to pay for it, or the doctor doesn’t want to deal with the potential legal liabilities of an ‘unproven’ treatment. That’s why it’s important for people to bring up various treatment options with their doctors—because when we as patients mention different treatment options, doctors will then at least have the discussion with you. And if you trust and know your doctor well, then they might even order it—even if it looks like insurance won’t cover it.)

Most of the general public doesn’t realize that doctors do not bring up all of the various treatment options, partly because they don’t have time, but also because they assume most patients don’t want to hear about 5 different options—especially ones not covered by insurance. That’s why it’s important to initiate conversations, especially for something as critical as inflammation of the heart…

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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