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.
One of the things that pharmacy benefit managers (PBMs) do is prohibit pharmacists from telling patients when they could save money by paying cash rather than using their insurance plan. In fact, according to a recent NBC Nightly News segment, pharmacists can be fined thousands of dollars for telling patients they can save money. According to the New York Times (as reported by the Dallas Morning News here) much of the difference between the lower “cash” price and the higher “insurance” price goes directly into the pockets of the PBMs.
Fortunately, state lawmakers are taking aim at these so-called “gag clauses,” helping ensure that patients are informed of the lowest price for a medication. The Alliance for Transparent and Affordable Prescriptions (ATAP) reported that Virginia is the latest state to have passed a bill addressing the PBM practices. Virginia’s HB 1177, currently waiting for the governor’s signature, ensures that PBMs allow pharmacies to tell patients when a more affordable option is available and to sell them the more affordable alternative when requested.
Virginia joins Connecticut, North Carolina, Georgia, Maine, and North Dakota that currently have enacted similar laws and a dozen other states are considering legislation to prohibit gag orders.
As discussed in my earlier post, PBMs wield an incredible power when it comes to both access to and cost of medications. PBMs are the organizations that basically set the rules for drug insurance plans. PBMs decide, for example, if medications are even covered (in formulary), at what tier (cost level) they’re covered, and whether other drugs must be taken first (step therapy). These practices have come under scrutiny as whether they might actually be harmful to patients by delaying or even denying access to needed treatments.
On the other side of the discussion is the Pharmaceutical Care Management Association which represents PBMs and which, among other activities, has filed suit to keep these laws from being enforced.
I understand that managing pharmacy benefits is a highly complex business. Like any other supply-chain model there are elements of supply and demand and the need to balance margins across an incredible array of highly sophisticated medications. But medicine needs to be about the patient and purposefully deceiving patients about the cost of their medications does not meet this critical standard.
This is my first attempt at typing since surgery six days ago, so you can get over any expectations that this post will be error-free. 🙂
Not sure where to start. Surgery went well. Recovery so far has been rough, but all of this is expected. I told a friend I expected to be hit by a freight train so when it turned out only to be an 18 wheeler, it was a delightful surprise.
I’m not actually one for surprises, so finding out the afternoon before surgery that we were shifting gears to a reverse shoulder replacement (instead of a traditional, anatomical one) kind of threw me for a loop. I’ll explain when I’m more recovered but it’s a better option given my rotator cuff issues. The reverse basically means they switch where the ball/socket components are located. Here’s a picture of my new shoulder:
Recovery will be slow, but I think I’m on track. I can tell the new joint will be better than the one it replaced. There have been some expected and unexpected things. For example, I’m allergic to tape and, of course, I was taped from my neck to my elbow, but my doctor let me ditch the bandages, which was great. They did a brachial nerve block to help the pain and when I woke up I could neither feel nor move my entire arm, which was a bit concerning. Then the nerve block wore off (about 18 hours later) and I was wishing for it back.
The hardest part is just dealing with being left-handed. Not good at it and my left hand gets really tired of doing all the work. But if that’s the worst that happens, then I’ll be great.
I guess the point of this procedure is that I can recover from surgery, but I was never going to recover from the joint damage in the shoulder. That gave the decision a lot of clarity.
So that’s it for now. My follow up appt is in one week. If I don’t update before then, I’ll check in afterward.
I’m having my right shoulder replaced in a couple of days and it’s amazing what needs to be done beforehand! Part of the problem is that my right arm will be in a sling for a while and I can barely scratch my nose with my left hand. So in addition to rearranging all kinds of schedules I have to do a bunch of home stuff while I can still use my right hand.
This is my fourth joint replacement (and my second shoulder replacement) since my RA diagnosis not quite 10 years ago. I keep telling my husband that I’m getting younger instead of older since I have all these new parts.
I also tell him that when I die that instead of burying me, he should just turn me into a hardware store and make a bit of money.
At any rate, I go in for surgery 2/15 and will be in the hospital for at least a couple of days. I’ll try to update as soon as I can, but typing is going to be a challenge for a while.
Looking forward to being back online! 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/.
Since my last post, I’ve gotten some questions about alternate day fasting (ADF), specifically what I eat on my “skinny” days. As a quick recap, ADF is just that. You eat up to 500 calories on every other day. I do a modified version where I eat 500 calories on Monday, Wednesday and Friday and then eat whatever I want to on the other four days. It’s weird that I don’t feel deprived on my skinny days, but I’m starting to appreciate the large quantity of food on the plate on the “regular” days, especially when we go out to eat. I can no longer finish a restaurant meal.
You can actually get a lot of food in 500 calories if you do it right. For example, two Hershey’s kisses is about 44 calories — or about the same as an entire cup of watermelon, and a cup of watermelon is much more filling. So my goal is to get the most food for my calories so that I neither feel hungry nor deprived. And you can eat whatever you want on the skinny days. If you absolutely MUST have some chocolate on skinny days, then the 22 calorie Hershey’s kiss is probably a good, satisfying, low-calorie idea.
I generally keep my breakfast to 100 calories and my lunch and dinner to 150 calories each. That gives me 100 “flex” calories during the day if I want a snack (celery) or I can save them for a short glass of wine in the evening. (Chardonnay has about 120 calories …) My typical day (below) is a bit heavy on the carbs, but a lot of that is fiber which keeps me from being hungry. And at 500 calories, that’s only 100 carbs for the whole day if I ate nothing else. But it’s important (at least for me) to get some protein in every meal to help keep you full.
Here’s a typical skinny day:
Breakfast: 1 cup (5.5 oz) of cantaloupe (56 calories) along with either a slice of turkey bacon (40 calories) or some scrambled Egg Beaters (45 calories worth).
Lunch and Dinner: To make life easy, I typically eat a turkey sandwich for both meals. I use two slices of low-cal wheat bread (40 calories each), 2 oz. of sliced turkey breast (about 50 calories), about a tsp. of spicy mustard on both slices of bread (10 calories total), then I load it down with another 30 to 50 calories of sliced tomatoes, cucumbers, and spring mix. I have substituted a lean protein (chicken, shrimp, fish, etc.) and a salad for the sandwich when I’ve gotten bored. You can really have whatever you want as long as you stay within the calorie limit. For example, Lean Cuisine has a great Steak Portabella dinner that’s not only low-calorie (160 calories), it’s also fairly low carb and has 15 grams of protein. I’ve eaten one of those, especially during cold weather when I want something hot.
I use MyFitnessPall.com to track all my food (skinny and regular days). And I lost 10 pounds in January even eating pretty badly on many of my regular days (pizza, Mexican food, etc.).
If I do get hungry or hit a low point on a skinny day, I just remember that the next day I can eat whatever I want. I figure I can do anything for a day. I think that’s one of the reasons people fail on regular diets — there’s no end to it.
While my version is not necessarily anti-inflammatory, or gluten-free, or Paleo or other structured diet — there’s no reason why it can’t be. One of the great things I’ve found about this is that it’s completely flexible because you can eat whatever you do or don’t want. You just eat less some of the time.
I hope this answers your questions. Like anything else to do with your health, it’s a good idea to talk to your doctor about your diet. Mine has seen the results and is delighted. My labs (cholesterol, glucose, etc.) look great, so my doctor has no problem with my staying on it.
I hope whatever your health goals are, that you’re successful and happy reaching them. Thanks for checking in.
I have news. All of it’s good in its own way.
I’ve been making progress on my New Year’s non-resolutions. Following the alternate-day fasting (ADF) eating plan, I’ve lost 10 pounds this month! I keep to 500 calories on Monday, Wednesday, and Friday, then eat normally the other four days. It’s actually been remarkably easy to stay on. I get my labs done next week so we’ll see if there has been positive impact on cholesterol, glucose, etc.
In other news, I am now scheduled for my second total shoulder replacement surgery on February 16. This is my fourth joint replacement (the others being hip, knee, and other shoulder). This shoulder has had two rotator cuff surgeries already. The doctor doesn’t believe that doing a scope surgery will provide enough improvement.
Of all the surgeries I’ve had, shoulder replacement was the hardest recovery. This is also my dominant hand, so I’m going to be struggling to do anything until I recover enough to use it.
So that’s all for now. Thanks for checking in.
Thanks to our brilliant family photographer (my husband) pics from our recent transatlantic voyage are now posted here: https://jwktexas.smugmug.com/. We left out of Southampton, UK and journeyed on to Lerwick in the Shetland Islands, Scotland; then to Reykjavik, Iceland; St. John, Newfoundland, Canada; Portland, Maine; finally ending our voyage in New York City. There are lots of pics from other adventures as well, so enjoy!
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.