I’m mad as hell and I’m not going to take it anymore!
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 that need to be in charge of their choices. Sign up for advocacy alerts at spondylitis.org/advocacy.
4 thoughts on “I'm Mad As Hell!”
Your article really struck a chord with me. I live in Taiwan, where doctors do not like being questioned and where they can change your medication without discussing it with you first. My doctor changed my medications even though I wasn’t in an active flare and had no reason to do so. Consequently, I have been very sick for the past six months because of a drug interaction that my rheumatologist failed to warn me about.
I wrote about my experience here: http://www.myseveralworlds.com/2014/11/27/healthcare-taiwan-patient-safety/
People ask me why I stay in Taiwan, and I truly feel that the benefits outweigh the positives. I have access to Universal Health Care here in Taiwan, and I can get in to see a doctor within an hour or two of arriving at the hospital, so I’m lucky in that respect. But, I’m mad as hell, too!
My choices for medications were taken away from me this year, and I suffered dearly for it. How do you propose would be a good way to get through to doctors? Being more aggressive with a treatment plan doesn’t always work.
Hi Carrie, Yikes! Thanks for sharing and I truly hope that kind of unnecessary suffering never happens again for you. I believe medication decisions need to be made by the doctor and patient in collaboration. Kindest,
This is what i am undergoing right now in ks the have a 14 day precertification process to see if you medically need it but if you loose it because of pain then you are weak its a complete double standard right now my knees wrist and fingers and elbows hurt on top of my inflammation from my upper ribs to my hip on right side but comes from center of back and wraps around the side onto the front you go to er they dont even look at your back send you away with a perscription for pain which made me sicker. Education needs to be in emergency rooms for this condition pain specialist need to be made available as well none in wichita atea take medicaid another fight i have to endure. My legs go numb from time to time so i use a walker to minimize my fall risk i wouldn’t wish this much pain on anyone. But what really enrages me is lack of medical help i got a good rhemoidologist but otherwise its been a true fight uphill for everything.
yes Tasha, I wish it wasn’t such a uphill fight and that more medical professionals were better trained regarding SpA.