This week’s video is different. I’m sharing a personal story about something I’ve been struggling with this year—Step Therapy—in hopes that you’ll relate… and that you’ll join me in fighting this awful practice: Step Therapy.
So it’s a longer video, a more passionate stance, and a request. Please take some time to watch it all the way through… it comes from deep in my heart.
*AWAP = As Well As Possible
Now it’s your turn:
Have you gone through Step Therapy or something similar? How did you fight back? What worked, and what didn’t? I wanna know! Join the conversation in the comments below, share your experience and ask for advice from our community.
Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has more than 10 hours of guidance, advice, and bloopers.
Is there a question I can answer for YOU? Add it to the comments below, or shoot me an email.
Until we meet again: Be AWAP! Smooches!
Hi! I’m Jenni Prokopy of ChronicBabe.com and today is AWAP Wednesday (that stands for As Well As Possible).
Each week, I offer you my personal favorite tips and techniques to help you craft an incredible life beyond illness. Yes! I know you can.
Subscribe to the ChronicBabe YouTube channel today to make sure you never miss another video, OK?
Today’s AWAP Wednesday is a little different, my friends. I have a personal story to tell you, and a request I hope you’ll honor. Here we go…
The past four months have been absolutely hellish here at ChronicBabe HQ, and I want to tell you why. I’ve been pretty quiet about the details, but today I want to explain it all to you—because I bet many of you are going through the same challenges. If my story helps you feel like you’re not alone—and if my outrage helps motivate you or anyone you know to advocate for folks like us—then this video could possibly change lives.
I’ve been taking an FDA-approved fibromyalgia medication for many, many years, with great success. The change it made in my life was enormous. You know me as someone who, despite fibromyalgia and a host of other chronic conditions, is able to run her own business; maintain an active social life; be part of a committed romantic relationship; volunteer for both local efforts like my community garden, and national efforts like patient advocacy; and much more.
Right? That’s the Jenni you know: spunky, lively, upbeat, even in the face of deep struggle.
This year, my new insurer took away my fibromyalgia medication through a process called Step Therapy. (link to us pain doc) For those who don’t know, Step Therapy is cost-saving policy used by many insurance companies that involves taking away medications that you already know work for you, and making you take “steps” to prove you’re worthy of that costly medication—namely, trying one or more other medications and “failing” on them. Once you have “failed first” (#failfirst) on those meds, then you can appeal to try to get back on the original medication that worked for you.
You can read up on Step Therapy at this link in a statement by the U.S. Pain Foundation.
That’s what I did. Despite my doctor’s strong opposition and multiple appeals, I had to go through Step Therapy. And it wrecked me.
My insurer put me on a different drug, one that isn’t even FDA-approved to treat fibromyalgia. The result was almost instantaneous and disastrous.
I developed excruciating pain and debilitating fatigue—I was sleeping up to five hours per day, in addition to 10 hours at night. I had gastrointestinal distress that kept me in the bathroom for hours most mornings. I lost cognition, which meant I couldn’t complete sentences, remember people’s names, or process complex problems. I stopped driving almost completely, because I was afraid I wasn’t safe on the road. I stopped working almost completely, which is a huge danger to me; I am self-employed, and my clients depend on me to follow through… or I don’t get paid. I went days without bathing; I had to cancel almost all social activities. I cried all day, every day. I felt like my life was absolutely over. I experienced a ton of anxiety, and I slipped into a deep depression. I lost hope.
I managed to keep my ChronicBabe Secret Club subscription service going, but just barely—and good thing I did, because otherwise I would have had no income for the past few months. That saved my hide.
After six weeks of this, I saw my doctor for a check-up. He was astonished at how bad I had gotten. He ordered me to start back on my medication, and luckily I had a stash left over from last year, so I was able to start back immediately.
In the weeks since, I’ve gotten better and better. I’m still not at baseline, and every day is like learning all over again what I’m able to do. I’m like a baby fibromyalgia patient all over again. This has given me renewed insight into what it’s like to be newly diagnosed (I mean, it had been almost 20 years ago for me) and girl, it has FIRED ME UP for advocacy again.
The way Step Therapy is supposed to work is once you fail on your steps, the insurer is supposed to give you back your medications. But my insurer rejected my third appeal. Then finally, they approved my fourth urgent appeal—but still haven’t filled my prescription, and it’s been more than a week. Pretty soon, I’ll run out of my stash of medication, and I’ll have to pay out of pocket for my meds—at the tune of $375 a month—even though I am technically approved by my insurance.
And I and my doctor and his team are spending countless hours calling, faxing, emailing and appealing. We’ve played their game but they’re still withholding my medication, and can’t offer me any explanation.
This is outrageous. This is criminal. In fact, in some states it IS criminal! Many states now have laws banning this practice, or limiting it—just not Illinois. YET.
Does this sound familiar? I bet it does, because countless people are impacted by Step Therapy every year. And this policy affects our most vulnerable populations, taking away medications from people who could literally die without them—because they’re too expensive.
So, I ask you, and my insurer: What’s more expensive: paying for my monthly medication, or my health going down the toilet and me losing my company because I can’t work and then not being able to afford my health insurance premiums and becoming uninsured, and going on disability? I mean, seriously, which is more expensive? Because that’s what happens to countless people each year. They lose access, and they lose their lives—their work, their relationships, their homes.
I’m really lucky. So lucky. I have a loving partner who supports me and keeps us safe in a comfy home. I have a kick-a$s support network who believes in me. I’m well-educated, and I’ve got a great healthcare team who fights for me. English is my first language. I have years of experience in patient advocacy and I know the healthcare system backwards and forwards.
Yet, I still don’t have my medication. Imagine how hard this is for people who aren’t lucky enough to have the kinds of resources I have? Imagine the hell they go through? I do, I can imagine it—and that’s what just positively breaks my heart.
These people need a voice. We need a voice. That’s why I’m sharing my experience today, because I want you to know that the longer I’m back on my meds, the more energized I am to advocate to outlaw this terrible practice that cripples people across our country. (Oh, wait, maybe my insurer knows that I’m a fighter and they’re trying to keep me down by withholding my meds? Naw, I’m just another number to them.)
I don’t want to be bitter. And I want to channel my anger (which is a really unhealthy emotion for me) into advocacy, educating people about this practice and its effects, and turning everyone I reach into advocates for change. That’s why I’m bringing you this impassioned message today.
You can help. You can speak up. Here are some things you can do:
You can share this video on Facebook, Twitter, and through email to everyone you know, explaining why this cause is important to you.
You can contact your elected officials (I put a link down here to make it easy for you to find them) and tell them why this cause is important to you, and ask them to make change happen.
You can add a comment below, telling me and the world why you think Step Therapy is criminal and sharing your story.
You can give me a “thumbs up” at this video at the YouTube page, which helps it get shared more widely to more people.
You can reach out to national organizations that represent people with your illness and ask to get involved in their efforts to fight Step Therapy.
You can get loud. You can tell your story. You can talk about this to everyone you know. The more you explain how you’re impacted—how WE are impacted—the more advocates you’ll create for our cause.
You may feel hopeless and beaten down—I understand—but you are not powerless in this fight.
Advocates are working across the country to fight this shameful practice, and in many states, there has been meaningful change. There is almost nothing as powerful as a personal story when it comes to convincing lawmakers to make change. If you get loud, they will listen. And together, we can end this positively criminal practice.
…Thanks for watching today! Help spread the word by taking the actions I mentioned, and please share your experience in the comments here or head on over to the blog at ChronicBabe.com to join the conversation—I want to hear what YOU have to say.
If you liked what you saw today, subscribe to our channel—and watch another one of my favorite videos right now. I think you’re gonna like it! It’s pretty upbeat because babe, I’ve cried enough today!
Until we meet again, be AWAP! Smooches!