RA is a serious situation and requires making a lot of tough decisions. After having just gone through my fourth joint replacement, I look back at almost a decade of having RA and discuss those things I rely on to help me make decisions. The article is on RheumatoidArthritis.net, here: https://rheumatoidarthritis.net/living/clarity-in-making-ra-decisions/
First of all, thanks to everyone for the support, virtual hugs, and actual prayers sent my way. I believe that these contributed in a major way to my great progress so far.
I saw the doc for my first post-op visit yesterday, and things are looking good. The things that were making my life miserable (major pain, tape allergies, OIC, etc.) are pretty much behind me. I still get tired easily, although I try to get up/stay up during the day. But mainly my challenge now is just slogging through another month in the sling before I can start serious work rebuilding strength and flexibility. (And start driving again. You cannot live in Dallas without a car!!!!)
So thanks so very much, and thanks for checking in.
I used to be a world-class sleeper. Thanks to RA I not only DON’T hold that title, there are a lot of nights I barely sleep. If you share this issue, you might want to read more of my story and efforts to find sleep on RheumatoidArthritis.net: https://rheumatoidarthritis.net/blog/seeking-sleep/.
Today CVS Health issued a news release announcing their Transform Rheumatoid Arthritis Care™ program. At least they were honest. In the first sentence, it clearly states that the purpose of this program is to “help the company’s pharmacy benefit management (PBM) clients better manage care and costs for rheumatoid arthritis (RA).” At least they didn’t lie and say it was for the benefit of patients.
For those of you who don’t know what a PBM is, they are the organizations that insurance companies use to determine such things as what drugs are covered and for how much and whether step therapy is required before approval. They exert an amazing amount of control over what drugs are available to patients and what those drugs cost. In a previous post, I debunked one of the major PBM’s assertions where they misstated the American College of Rheumatology treatment guidelines for their own purposes.
It’s a known fact that RA drugs – particularly biologics – are some of the most expensive medications prescribed. I acknowledge that we need to manage these costs as much as possible – but I disagree that it should be at the expense of patient care or interfere with the doctor’s right to design the best treatment plan possible. Even the National Institute of Health (NIH) has stated, “The treatment of RA has been transformed in the last decade with the introduction of several targeted biologic agents. Although biologic agents are more costly in the short term than conventional disease-modifying antirheumatic drugs, drug-specific costs may be offset by significant improvements in RA symptoms, slowed disease progression, and improved physical function and quality of life for patients.”
What are some of the key points CVS Health’s new program that I think may be directly or indirectly harmful to patients?
- It encourages the “use of lower-cost therapies”. Translated into patient language, that means that patients may not have immediate access to biologic medications until first “failing” on older, less costly treatments such as triple therapy (sulfasalazine [a sulfa drug], hydroxychloroquine (Plaquenil), and methotrexate).
- Under outcomes-based contracts, pharmaceutical companies might be penalized if patient targets or goals are not reached. Most patients are prescribed an anti-TNF drug as their first biologic. It’s a well-documented fact that approximately 30% of patients fail on their first TNF biologic within the first year. How will penalizing the manufacturer (1) help the patient or (2) lower drug costs (the program’s goal)?
- Changing to an indication-based formulary. This means that instead of a certain class of drugs being covered for a condition, medications are placed on the formulary (payment scale) based on the specific drug. For example, all anti-TNF drugs (the most commonly prescribed RA biologics) might not be covered. According to CVS’s Carefirst statement the following, commonly prescribed RA drugs have been removed from the formulary for rheumatoid arthritis: Actemra, Cimzia, Kineret, Orencia (infused), Simponi, and Xeljanz/XR. This can severely limit the affordable treatment choices for patients.
- According to the news release, a PBM could save up to 5 percent on RA drugs. That translates to $500,000 over 100,000 patients – or about $5 a patient. First of all, I will gladly pay the $5 to be given access to the drugs that my doctor thinks is the best treatment plan. And second – back to the patient – while this might save the PBM money, there is no indication that these health care savings will be passed to the patient.
For me, there are two inescapable conclusions. The first is that these types of pharmacy programs border on practicing medicine by dictating what treatments are available on an affordable basis to the patient. The second is that all the focus is on saving money while apparently no thought is given to the debilitating effects on patients who are denied effective treatments.
I’ve been searching my archived posts for some information and, in doing so, ran across the article below. I hope you don’t mind my sharing it again. It struck a chord with me as we start the new year with new resolutions and hopeful expectations.
My husband is an architect. In the context of this blog, that’s fairly meaningless information except that all of our significant others (spouses, partners, kids, parents, close friends) impact our lives in ways both subtle and dramatic. For example, while most people have travel journals filled with pictures of sunsets and scenic vistas, mine are filled with various close-ups of architectural details like cornices and columns and downspouts (oh my!).
One of the other effects being married to architect is watching an inordinate amount of Discovery and History channel programs on architectural and engineering marvels.
One recent such program I [really wasn’t] watching was being moderated by the lead engineer in charge of maintaining one of our famous structures. I honestly don’t remember whether it was the Golden Gate Bridge or the Empire State Building. However it was a significant structure and one that even those people who can’t find South Dakota on the map have no doubt heard and could possibly guess its location.
The moderator made a very striking comment – one that has stuck with me while the rest of the program quickly faded from my memory. He said that structures are like the human body. The human body doesn’t fail all at once. First one system — eyesight, muscular-skeletal, pulmonary, circulatory, whatever — starts to fail, then other systems follow. Structures — specifically buildings — are the same way. Given the lack of outside influences (like earthquakes), a building doesn’t just become decrepit — first a system — like plumbing or electrical or HVAC — will fail and need to be fixed, then something else will have problems, and on and on. (Those of you who are homeowners are sitting there nodding your heads, aren’t you?) Further, when one system has problems, either the faulty system itself or the repair of the system can cause issues elsewhere. For example, leaky plumbing can cause foundation issues. Fixing the foundation can damage the exterior of the building (not to mention one’s budget).
I’d never considered this before. I’d always just assumed that as I aged, my entire body aged at the same rate or started to malfunction at the same time — my skin would wrinkle, my hair would turn grey, I’d lose some of my eyesight and hearing, and eventually some of my mental and physical abilities.
But much like the building with the haywire plumbing, those of us with RA have one system (our immune system) that is not only haywire itself, but it is causing havoc for the rest of our bits and parts — like our joints. And besides that, efforts to stem the damage by using powerful drugs, has its own set of destructive mechanisms on otherwise innocent bystander bodily functions and parts.
And while we have our own maintenance engineers (doctors, pharmacists, physical therapists, to name a few), we have one great advantage that buildings and bridges don’t have. Humans are self-healing. We have the ability to make lifestyle changes — diet, exercise, rest, mental health — that counteract or impede the ravages of both time and disease.
In an earlier blog, Do What You Can, I pointed out the success I felt at finally going to a water aerobics class and how doing anything is better than doing nothing. So this weekend, do a little self healing. Walk an extra few steps, eat a little healthier, get some good rest, hug someone you love, and find a reason to laugh.
Thanks for checking in.
With the prevalence of social media, I can’t help but wonder if RA patients are actually getting the important information available to them via these channels.
Having spent my career in corporate communications, I have seen firsthand the enthusiastic embrace of the internet and social media as mainline channels for distributing information. With computers on our desks, tablets in our backpacks and smartphones in our hands, there is instant access to information. There is a lot of important material on new treatments, research, and patient experience that is being shared through computers.
But are RA patients getting the message?
A critical component of any communication project is to understand your audience. That means not only whether they will be interested, but how they receive their information. I found a couple of very enlightening sites that provide research into who uses social media (the links are below — you should check them out). Given the CDC states the highest prevalence of the onset of RA is over 60 years old (about 10 times the number diagnosed between the ages of 18 and 34), I’m not sure that information disseminated through popular social media sites is reaching RA patients. Note the following usage:
Facebook: 11% of users are >55 years old
Instagram: 26% of users are >50 years old
Twitter: 31% of users are >50 years old*
LinkedIn: 44% of users are >50 years old
*Note that 79% of Twitter users are outside the U.S.
Beyond that, across all age groups, in a study focused on science news, about twice as many social media users distrust science posts on social media as trust them.
Based on the above statistics, it’s apparent that information made available via social media has limited reach to a large portion of RA patients. In addition, the majority of people don’t trust science-related information they receive via social media.
I am not suggesting that medical organizations, patient support groups, research teams, or pharmaceutical companies stop using these channels. In addition to the users over 50, there is a significant percentage of patients that are diagnosed at an early age who use them as primary sources. These people not only need critical information related to diagnosis and treatment, they need ongoing support when dealing with issues such as family planning and handling a career with RA, which are not as relevant to the >50 group.
But what needs to happen is a better understanding and usage of the media channels that the majority of RA patients actually use, and these patients are over 50.
I believe that valid information is the most powerful tool that we, as patients, have in our arsenal against RA. We need to have this information delivered in formats we use and trust.
Here are the social media usage research sites I used. They’re pretty interesting.
I hope the information you receive through this site and others that you trust helps empower you to take more control of your treatment and your life. I wish you health, happiness, and many blessings in the coming New Year. Thanks for checking in.
After I thought of all the things RA can do, I came to a realization of what RA can’t do.
See the video at: https://rheumatoidarthritis.net/video/ra-can-ra-cannot/
As biosimilars become more of our treatment landscape, we’re learning more about how patient (and physician) education has on the perceived effect of these new medications. A nocebo effect (unlike a “placebo”) is when a patient has a negative view of the treatment which impacts the outcome. The nocebo effect is showing up with biosimilars. Read more about this in my article for rheumatoidarthritis.net here:
Nothing says “holidays” like tradition. My 12 Days of RA is the one of the few holiday traditions I still maintain. I hope you enjoy it. Wishing you all the best for whatever holidays you celebrate this time of year (or avoid as I do). May the new year bring all of us health and happiness.
On the twelfth day of Christmas, RA brought to me:
12 joints a-flaring,
11 scripts a-filling,
10 toes a-throbbing,
9 copays pending,
8 workdays missing,
7 doctors billing,
6 X-rays to be taken,
5 hours sleep!
4 side effects,
3 new tests,
2 swollen knees,
And a new D-M-A-R-D.
“And God bless us, every one.” Tim Cratchit, A Christmas Carol by Charles Dickens
Things are looking up — or at least not looking bad medically in my life at the moment. Updates since my last personal post:
- Really, really good news! I went to a different infusion center (this one at the hospital) to see if they could start an IV so I could get my Simponi Aria infusion. I haven’t had a full infusion since July because they haven’t been able to get an IV started (though Lord knows they’ve tried). I’ve managed with Simponi injections along with my weekly MTX injection and the occasional prednisone tablet. While it’s the same medication in both the injection and infused forms, the injection is not the right dose for me, so I haven’t had the full benefit treatment. The good news is that they were able to start the IV (after three tries) and administer the infusion. I feel better already! This also means that we won’t have to install a port (at least not at this point).
- More good news from the MRI on my spine. My close friend paraphrased the news as my “… evolution into an invertebrate is coming along swimmingly.” The happy news is that I was afraid that I would need surgery, but that’s not the case. I tend to gloss over the questionable news that my spine does show major arthritic degeneration and there are several levels where the disc is either completely gone (bone against bone) or is barely there. But because nothing is bulging into my spinal cord or impinging on any nerves, I don’t need surgical intervention. I’ll just evolve into a spineless wonder (as my friend pointed out). The degeneration is caused by RA and I am doing what I can to combat that.
- The esophagus situation is one of those things I’m just going to live with and work around. We increased a medication but with little effect. I’ve just learned to eat carefully as well as avoid a lot of carbonated beverages. I can’t, for example, eat things with a lot of bread content — like a sandwich on ciabatta bread — because it literally gets stuck. But with a little thought about what I eat and being careful about how I eat it, I’m managing. In fact, this might be a blessing in disguise.
Famous last words, but right now life is fairly calm in my world. I am hopeful for a calm holiday season and not too many extra pounds. May your hopes and wishes for this coming holiday also come true. Thanks for checking in.