Welcome Kevzara®, the Latest RA Biologic!

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Late Monday, May 22, the FDA gave approval to Regeneron Pharmaceuticals, Inc. (NASDAQ: REGN) and Sanofi’s new biologic RA treatment, sarilumab, under the U.S. brand name Kevzara. It is the latest addition to the Interleukin Inhibitor (IL-Inhibitor) class of drugs that also includes Kineret and Actemra. The medication comes in an auto-injector and is administered every two weeks. The primary focus for this drug are patients that have “failed” on at least one other biologic. It can be used with or without methotrexate. The news release from the company can be read here: http://investor.regeneron.com/releaseDetail.cfm?releaseid=1027419

I am personally thrilled that there is a new option for RA patients, especially those like me who have been on numerous treatment plans that eventually quit working. Like other products, such as computer processors, each new product holds promise of improvement over the ones that came before it.

Actual availability for patients is, of course, dependent upon getting supplies out, educating physicians as well as patients. and navigating the quagmire of insurance and Medicare/Medicaid approvals. This last item is very important because, although I haven’t seen any “official” pricing, news stories peg the price at $39K/year. While expensive, this is actually less costly than some of the established biologics on the market.

So thank you, Regeneron and Sanofi, for the new drug. And thank you for checking in.

#ArthritisFoundation Holds Walk for My Birthday

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This isn’t exactly fake news. There are actually two true things about that headline.

The first is that my birthday happens to be Saturday. The second is that the Dallas Chapter of the Arthritis Foundation is holding their Walk to Cure Arthritis on the same day. Here’s the link. http://www.kintera.org/faf/home/default.asp?ievent=1166058&_ga=2.77723220.1915340304.1494277390-42033948.1448375354

They’re a bit short of their money-raising goal, so if you haven’t gotten my birthday present yet, you can still walk or donate or both!

(Okay, so they’re not exactly having the walk to celebrate my birthday. But if you’re one of those people who believe there are no coincidences — well, there you go.)

Hope whatever you do on Saturday brings you both health and happiness. Thanks for checking in.

 

Sticks and Stones Aren’t the Only Things That Hurt

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The physical pain of a chronic illness is bad enough, but there’s a lot of emotional pain involved as well. A good amount of this is caused by remarks made by other people. Sometimes this is well-meaning (but uninformed) and other times it’s more malicious. After almost a decade with the disease, I’ve come up with some personal tactics to deal with these.

Read about them here: www.rheumatoidarthritis.net/living/sticks-and-stones-arent-the-only-things-that-hurt/

#Medicare Monday

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Nothing scares someone with a chronic illness more than changes in health insurance. So I have to admit that I’m terrified.

Today I start Medicare. 

This doesn’t sneak up on you. About six months before you’re eligible, you start getting mail and emails and phone calls from insurance companies trying to get you to sign up for all the supplemental policies that come along with the government-provided coverage. But sorting it all out, trying to figure out what you’ve got and what’s going to be covered, is a bit of a nightmare.

I take about a dozen prescription medications, not counting my biologic infusion. I searched carefully through the 25 or so prescription plans available to me until I found one that covered most of these meds for a premium that wouldn’t bankrupt me (at least not immediately).  As it was, I couldn’t find a plan that covered two of my drugs. One is a blood pressure medication, which is no big deal because there are loads of those. The other is the one that I consider critical because it provides amazing relief for my Sjogren’s symptoms. There is only one substitute that I can find and it doesn’t work as well and it has considerably more side effects. And even though it’s “covered”, it will still cost me more than $100/month.

The really scary part is that I can’t get anyone to tell me whether or not my biologic infusions are covered. I’ve talked to Medicare and they tell me that the fees for giving the infusion will be covered, but they won’t tell me if the drug (which runs about $15,000 retail) is covered. They need to speak to my doctor or the infusion company or both. Even if it is “covered”, if it’s a high-tier drug, it might only be covered at something like 50% — which is well beyond my capability to afford.

Right now I’m doing better than I have in years. My biologic, Simponi Aria (along with methotrexate), is working amazingly. I do not want to go backward. I would like to continue to feel almost human again.

I’ve been given assurances by a wide range of people including my rheumatologist, the infusion company, and even the great folks at Janssen (who manufacture the drug), that it should/will be covered. But I won’t know probably until a few days before my next infusion in June.

Sigh.

The interesting thing is that I consider myself lucky. Given the current uncertainty in the health insurance industry and the chaos that is going on in our legislature about replacing Obamacare, I’m glad I don’t have to face those challenges. At least I have a clear definition of what I’m facing.

I hope whatever you’re facing today brings a smile to you and those you love. Thanks for checking in.

Amazing Study on Expressive Writing – Thanks Galloping Grandma!


I want to thank thegallopinggrandma.wordpress.com for this intriguing story about the healing power of expressive writing.

Whilst lying dozing in my bed at the end of my day listening to the radio (because of the effort of watching television at that time of night ) I was suddenly aware of the mention of Rheumatoid Disease on a BBC programme called “All in The Mind”, so dragged myself into a sitting […]

via THE CURIOUS CASE OF THE HEALING POWER OF EXPRESSIVE WRITING — thegallopinggrandma

#HealtheVoices17

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This time last week I had the great privilege of being part of the opening session of HealtheVoices 17. This was the third year that Janssen has sponsored the convergence of online health advocates that represent a wide variety chronic illnesses.

There are times that I think my blog actually does some good (rather than just being a conversation with myself). But I was truly amazed at all the incredible work done by the 105 advocates who attended the conference. There were people with radio shows and podcasts and videos and who head up non-profits and speak before congress and sit on peer review panels for medical trials. The list goes on.

But the important thing is that this conference helps empower those who work daily to make the patient’s voice heard in the health care industry.

With all the important issues facing our nation today, none (IMHO) is more important than health care because everyone is touched by it. And like the canary in the mine shaft, those of us with a chronic illness are impacted the earliest and the most when changes in healthcare occur. We need to initiate the conversation about how proposed changes affect the quality and even the quantity of patients’ lives.

I’m in here, really.

I was very honored to be selected to attend and to gain so much knowledge and energy from both the other attendees as well as the amazing sessions I attended. But this is just a small handful of people and the American healthcare system is huge. We all need to make our voices heard, however we can in whatever manner works for us as individuals.

Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.