I think (or at least hope) we’re all diligent about being aware of potential side effects of medications and supplements that we use. Occasionally, though, something will fly in under the radar. This happened to me. Read all about it in my article for rheumatoidarthritis.net here: Attack of the Stealth Intruder Steroids!
-graphic courtesy of rheumatoidarthritis.net
There is a lot of discussion about rheumatoid arthritis and obesity. But have you ever wondered if RA (or its treatments) are actually contributing to the issue? I have and discuss this exploration in my new article published on rheumatoidarthritis.net, here:
I was recently at a meeting that included a number of other RA patient advocates. Over lunch, conversation turned (not unexpectedly) to various treatments and side effects. One of the others, who had long, luxurious dark hair, said, “It’s not fair. I was losing hair by the handfuls from my head but I still had to shave my legs.”
She was talking about her experience with methotrexate (MTX) which is the first medication prescribed for many RA patients. Being young, pretty, and single, hair loss was a non-starter for her and she quickly talked to her doctor about switching treatment plans.
To read the rest of this article including my own “hair-raising” experiences with RA treatments, visit rheumatoidarthritis.net here: https://rheumatoidarthritis.net/living/hair-not-musical/
Below is a screen shot from my phone. It shows the sleep tracking from my Fitbit. The red parts are when I was awake. It’s pretty easy to tell from this picture when I got up, took two (more) Tylenol®, and finally got some decent sleep.
We’ve all been there. All those little aches and pains that we don’t notice (or simply ignore) during the day when we’re busy seem to magnify themselves in the dark quiet of the night. That slightly sore ankle, knee, hip or shoulder suddenly takes over your whole attention and will not let you get comfortable and go to sleep.
What I didn’t realize is that it’s a two-way street. According to the research, sleep complaints are present in up to 88 percent of chronic pain disorders and at least 50 percent of individuals with insomnia—the most commonly diagnosed disorder of sleep impairment—suffer from chronic pain.
Read the rest of this article here: https://rheumatoidarthritis.net/living/pain-and-sleep/
It was a dream job. One of those once-in-a-lifetime opportunities to do meaningful work you enjoy with people you respect at a generous salary. Those jobs are rare to begin with but when you’re, like me, at the end of your career, they are all but nonexistent.
I truly tried to figure out how to do it. I had even convinced myself that I could do it even if it occasionally meant the 70 to 80 hour week, frequent travel and high levels of stress. I liked the person who would be my boss. I appreciated the talent and dedication of my fellow co-workers. I could make a difference. It would pay incredibly well. I really, really wanted that job.
There are two recent proposed changes to insurance and Medicare that can have a major impact to your wallet and potentially make insurance unaffordable for millions.
People with Pre-Existing Conditions Could Be Denied Coverage or Charged Exorbitant Amounts
There was a critical time in my life when I was self-employed and needed to get a private insurance policy from the marketplace. I was incredibly thankful that “Obama-Care” had recently been enacted and that people with pre-existing conditions (1) could not be denied insurance coverage and (2) were not required to pay higher premiums than healthier people. As it was, I was paying more than $1000/month for insurance coverage just for myself.
My home state of Texas, along with 19 other states, has sued to have these provisions revoked. The political intricacies are better explained in this Medpage Today article. According to the article this could impact 52 million people. A joint statement from five leading health organizations included the following statement: “Should this case be successful, people with cancer, heart disease, diabetes and any serious or chronic condition are likely to be denied coverage due to their pre-existing conditions or charged such high premiums because of their health status that they will be unable to afford any coverage that may be offered … Without access to comprehensive coverage patients will be forced to delay, skip or forego care. This was often the case before the law took effect and would likely be the same should these essential protections be eliminated.”
The US Department of Justice (DOJ) has declined to defend these provisions (meaning the DOJ didn’t object to them) so the lawsuit is continuing on. However, if this carries through, those of with RA, will certainly be included in the “pre-existing conditions” list. In the not-to-distant future we, and others who need insurance coverage the worst, may be denied access to it.
Infused Medications May Come Under Drug Plans Rather than Medical Plans
In an earlier post I described that how you receive your RA treatments affects how much you pay. Medications that are administered at home (pills, injections, lotions, etc.) normally come under the pharmacy insurance plan. Covered medications are generally assigned a “tier” with approved generics being the lowest cost and costlier medications (such as biologics used to treat RA) are the highest tier and, if covered at all, usually requires the patient to pay a significant portion of the cost.
On the other hand, medications used in treatments done at a facility such as a doctor’s office, infusion center, or hospital, are covered by the medical part of the insurance. this would include, for example, RA medications given at an infusion center. In this scenario, a patient will have a co-pay which may be considerably less expensive than they would pay for a medication under the pharmacy plan.
This breakout generally applies to both Medicare and private insurance.
To provide a personal example, I am covered by Medicare and have an infused biologic that is currently covered by the medical coverage. It costs me $0 out of pocket for my infusions. The medication I take also comes in an injectable form. If I used the injection instead of the infusion, it would cost me $6,283 each month.
The current drug plan proposed by President Trump would move drugs used in treatment settings from the medical coverage to the pharmacy coverage for Medicare patients. If this were to happen, I could no longer afford treatment. (To add insult to injury, patients like me who are on government-sponsored plans such as Medicare or Tricare, are not eligible for patients assistance programs.)
Right now this proposed change is limited to Medicare patients, but the plan is being promoted by Pharmacy Benefit Managers who also manage drug plans for commercial/group/private insurance companies. It’s not much of a stretch to think that if they can make this change for Medicare, then other plans aren’t far behind.
Not only are those of us with drug plans at risk, there is an estimated 9 million people on Medicare who do not pay the extra premium for drug coverage. There has been no proposal so far as to how these people would pay for their medications.
I used to think that the uncertainty surrounding the current administration’s drug policies was unnerving. As these plans become unveiled, I think the reality is much, much worse than the uncertainty ever was.
Thanks for checking in. I wish I had better news to share.
I am in august company as Healthline has selected “Carla’s Corner” as one of their 2018 Best Blogs for Rheumatoid Arthritis. Some of my favorite sites (which include some written by my favorite people) also made the list. Please check them out at:
Thanks not only for checking in for all the great support that you’ve provide to me over the years.
(Hugs from me, too.)
Biologic treatments for rheumatoid arthritis are some of the most expensive medications on the market. Do you ever wonder if they’re worth it? Do you ever daydream about what you’d do if you could just take the money instead of the treatment? Read my ramblings on the subject on rheumatoidarthritis.net here: https://rheumatoidarthritis.net/living/i-dont-feel-16000-better/