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

Author: Richard Howard/Friday, April 10, 2015/Categories: Weekly News

 

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

 

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.

 

Spondylitis Awareness Matters – Instagram/Twitter Campaign

Spondylitis Awareness Matters – Instagram/Twitter Campaign
From WalkYourASOff

April 8, 2015

Spreading awareness for a disease helps in all sorts of ways. Ask the ‘ice bucket’ people. For Spondylitis, awareness improves lives. Everyone ‘walking their AS off’ already understands this and has their own story to share.

April is Spondylitis Awareness Month

Saturday, May 2, 2015 is World AS Day

Please join the Spondylitis awareness campaign this month 

and have a chance to win an ipad mini! 

 

In my position at SAA and as a support group leader, I’m exposed to a lot of reasons why awareness matters.

What happens when people are unaware?

1. People ‘self medicate’ with alcohol and drug abuse.
2. People break their neck with a roller coaster ride (or a ‘simple’ fall).
3. People have permanent vision damage including loss of eyesight.
4. People are considered whiners, lazy & antisocial.
5. People think it’s normal ‘growing pains’ when a child on the floor crying from hip pain.
                                    
6. People have spine or hip surgery, merely to have the pain return.
7. People (docs) mistakenly diagnose patients with mental illness instead of referring to a rheumatologist.
8. People (docs including chiropractors) are confused why their patients are not getting better.
9. People (radiologists) don’t notice ankylosing spondylitis on the x-ray and MRI.
10. People forget to donate to this pretty common, painful and often permanently disabling disease.
11. People are undiagnosed to the point that it’s too late for treatments to be effective in stopping permanent damage to the spine.
12. People don’t know why they are angry and short tempered.
13. People may never fully trust doctors again.
14. People lose out on having close, long term relationships with their parents, spouses and children.
15. People don’t know that their digestion, vision, small joint pain, back pain, fatigue and limited range of motion, osteoporosis, sciatic pain, heart and lung issues are all related.
16. People feel isolated, alone, depressed.                    
17. People don’t know what can be done to feel better.

Seronegative spondyloarthritides, more commonly called spondyloarthritis or simply spondylitis, refers to a group of auto inflammatory diseases that primarily affect the spine and other joints.

 

The CDC estimates at least 2.7 million adults in the USA have axial spondyloarthritis. That’s not rare. Men and women get this. Rheumatologists diagnose and treat this disease. There is a genetic component and so there is a tendency to occur in more than one family member.

 

There is no definitive blood test and diagnosis is not simple. Incredibly, people can be relieved to hear that they have this painful, incurable disease… because they have been living in pain without any medical answers for years and years.

 

Common factors used to diagnose spondylitis include:

• Onset usually under 45 years
• Pain persists for more than 3 months
• Back pain and stiffness worsen with immobility, and eases with exercise
• NSAIDS usually help

A lot of progress has been made in the 30 years the SAA has been around. There is a network of support. There are researchers improving lives and seeking a cure. There is reliable, evidence based information in a magazine, website, email newsletters, at seminars and just a phone call away.

There is advocacy work being done. Visit www.spondylitis.org for more information.