I'm as mad as hell and I'm not going to take it anymore!

By Anonym

Friday, April 10, 2015

Frankly, this isn't something that I get "mad as hell" about. Perhaps I should.

2015 Legislative Session Activity

2015 Legislative Session Activity

Decisions are being made about which medicine you have access to. It's not based on science. It's not based on evidence. It's not your doctor's decision. You do have a choice. Your choice is 'take it or leave it.'

If you can afford to pay nearly $20,000USD a year for medicine, then you have more choices. 'Advocacy' and 'public policy' doesn't usually stir much anger or emotion from me. Perhaps they should. In states across America, elected officials are voting how to handle biosimilars (think generic for TNFis). We know that some TNFis work well for some people, some do not. Some only work well for a while. My point is that each TNFi is different and each biosimilar will also be different. Biosimilars, along with other types of medicines in the pipeline, is a chance for us to have lots of choices.

Choices are 'chances' for feeling better. Chances to have a better life.

Don't let your elected officials or some health insurance back room deal limit your choices. This is very real. In January, thousands of people received letters from their insurance company stating that their insurance only covered 1 of the 5 TNFi available. The patient was welcome to stay on their current TNFi and pay out of pocket for the entire amount.

Some States are deciding that after you and your doctor decide on a medicine, it's then okay for it to be switched at the pharmacy without telling you. It can be switched to a medicine that was tested for Crohns disease, but not for Spondylitis. It can be switched without telling your doctor.

A good number of people in the pharmacy retail industry think the name of a biosimilar should be the same as the original because it's easier for them that way. It's nearly impossible for researchers to know what works and what has side effects.

And don't even get me started on why 'specialty tier' copay prices were invented. How is it fair that some meds are cheaper to use than others? Patients didn't choose which disease to get or what type of medication is effective. Isn't that the point of health insurance, to spread the risks and costs? Perhaps I do have the potential to be 'madder than hell'. Are we going to sit back and take whatever is more profitable for the insurance company?

A few years ago, Spondylitis on a medical record meant that the person was excluded from being able to purchase private medical insurance. That changed because of people advocating for change.

I suspect the vast majority of politicians have never heard of Spondylitis. They certainly won't know there could be a difference between one TNFi and another.

It's time to step up! So, even if you're not mad as hell, let your representative know how you feel. Even if this doesn't affect you personally, do it for your community of spondies who need to be in charge of their choices. Join SAA in being an advocate for people living with spondylitis.

*Originally written for the Walk Your AS Off blog.


Stay Informed



Visit our careers page for available positions

Contact Us

Spondylitis Association of America

16360 Roscoe Blvd.  Ste. 100
Van Nuys, CA 91406



Information Requests

(800) 777-8189 U.S. only
or (818) 892-1616
*Please note: This is not a Crisis Hotline. If you are in a life-threatening crisis, please dial 911 for immediate help in the US. Please follow this link for crisis intervention resources.

Give With Confidence

Click to verify BBB accreditation and to see a BBB report for Spondylitis Association of America