The pharmaceutical companies that’s who. I am blown away as I watch some evening TV that almost every second ad is for drugs for some sort of autoimmune disorder or disease. We are a captive audience with an endless need for their expensive drugs. Not pred of course because it’s gone past the deadline and has become a generic drug. Not so for the others. I was just getting infused today with a drug that for the two treatments I get costs almost $10,000. I was talking to a wonderful lady who has a friend who HAS to take a medicine that has a half-life of 2 minutes and needs to be administered intravenously so she has a permanent pic line and the drug sits on a fanny pack – her drug that keeps her going costs $6,000 per month. I was also talking about a mutual friend who’s wife has an autoimmune disease and can’t get drugs because they can’t afford them and don’t have insurance. Her husband has to watch his wife in pain and sit there knowing he is hog tied by Big Pharma and can’t do anything about it. With other diseases the expensive drugs are administered in a relatively short period of time with the hopes of eliminating the disease. With autoimmunity, which is often if not always chronic, the drugs are administered to maintain a quality of life and possible remission, but the disease is with you for ever in most cases and you are a slave to the therapy.

Still don’t believe me? Check this out –

Here’s a little bit on Humira:

Here’s a report from AARDA ( I really like that group )

2 thoughts on “Who not to ask for help in spreading the word

  1. Thank you Julia, I’ve gone to Wegohealth and have joined (I’m still waiting for a response but I’m sure it’s coming soon). I’ll check out Jennifer’s blog today. Thanks so much for the links. I hope that you and Julia can get on the ‘find the common thread’ train. I can totally see how more of us autoimmunies with a ‘pushy’ for lack of a better word attitude about all of this can really make things go far and fast.

    Thanks and I look forward to chatting with you. Let’s change the world together. Start an infection in your part of the world.

  2. Hi Marta – thanks for checking out my blog and contacting me! I agree that autoimmune diseases as a whole need more awareness and support but mostly more significant research. Good luck with your pajama day! Unfortunately, I spend far too many days in my jammies, so there’s a good chance on that day I will still be in mine.

    I wanted to introduce you to someone who seems remarkably similar to you – she has Sjogren’s syndrome among other autoimmune diseases. She is passionate about spreading awareness both on the web but also in her workplace and other events in “the real world”. Her name is Jennifer Pettit and her blog is entitled Understanding Invisible Illnesses found here:

    I would invite you to also check out a site entitled WEGO Health. It’s a group of health oriented bloggers who consider themselves health activists, not simply patients. For the members, and it’s free, there’s many ways to be connected with other like minded bloggers as well as opportunities to participate in panels, group e-conferences, etc. It really is an interesting organization.

    You can find it here:

    Both Jennifer and I are members of Wego and I strongly suspect that you would enjoy participating there, too.

    Keep in touch. – Julia

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