FB Live With Two of My RA Heroes

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Two of my RA heroes, Cathy “Cateepoo” Kramer and Lene Anderson are having a Facebook Live discussion this Wednesday. This session is not to be missed!

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Oh I See About OIC

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*This is a sponsored post. Salix Pharmaceuticals compensated me for this post. All opinions are my own. Certain product information has been included to meet regulations.

I recently found myself at an urgent care facility. It wasn’t that I was having issues with my chronic rheumatoid arthritis. The problem was the opioid medications I’d been prescribed to manage my pain had seemingly put my digestive system on hold. It was one of the more painful and embarrassing times of my life.

The problem, better known as opioid-induced constipation, or OIC, managed to hijack my life even though I had been taking a fraction of the opioids that I had been prescribed. It was initially a very distressing 24 hours followed by a week of careful diet and even fewer pain tablets before OIC stopped being a major part of my life.

By sheer coincidence, I had just been invited by Salix Pharmaceuticals to attend a forum that brought together patients and health care providers (HCPs) to discuss pain and specifically some of the unwanted issues of treating it – such as OIC. I was unable to attend the forum due to some scheduled surgery but instead got to do some (unexpected and unwanted) first-hand research into the subject. (I’d have rather gone to the forum, trust me!)

If you’ve read my blog for very long, you know my frustration with the current environment that seems to punish patients for needing pain relief. This environment is a backdrop that may make patients reluctant to discuss pain and related topics like OIC with their doctors. This means that many patients who are already suffering from a chronic condition may also suffer needlessly from OIC. I haven’t seen any study results, but I suspect that some people may actually be afraid to complain about OIC in case that is used as an excuse to reduce or discontinue their prescription opioids. In a survey of OIC patients sponsored by Salix in partnership with the US Pain Foundation, 77 percent of the patients reported suffering with OIC for at least a year and 43 percent said they had suffered for more than three years. After my recent 24 hours of misery with OIC, I can’t even imagine this. Continue reading

Patient Data is Patient Property. Period. (Question Mark?)

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It’s hard to miss and even harder to ignore the headlines on the war against opioids. (Shouldn’t it be a war against addiction instead???) MedPage Today reported that the second bundle of opioid-related bills — 32 in this bundle, for a total of 57 — had passed committee and was on its way to the House for consideration.

One of the bills, The Overdose Prevention and Patient Safety Act substantially changes the confidentiality standards for substance abuse. According to the MedPage Today article, “Specifically, the act would allow anyone involved in treatment, payment, or healthcare operations — e.g., healthcare providers, health plans, and healthcare clearinghouses — access to patient information without first requiring a patient’s consent.”

I don’t even know where to begin.

This means we are stripping patients of a basic right to privacy about their medical records. And notice the word “anyone” would have access. When you extrapolate what this means, this is such a broad spectrum of access you might as well post the information on Facebook (which is looking to get into medical records, anyway).

Unfortunately, I think this merely a symptom of a much larger disease of which most of us are unaware.

At the end of April, Dr. Elizabeth Lee Vliet wrote an excellent article exposing major threats to patient privacy in wake of the disclosure that Facebook was exploring the medical records business. (This is worth reading.)

In addition to Facebook involving itself in our private lives, in 2014 the TARP (Troubled Assets Relief) act was passed. While this was a stimulus act to help the economy, it had a seemingly unrelated provision. In support of Medicare and Medicaid programs, it required physicians to adopt electronic medical records. (We’ve all had varying, interesting experiences with those.) What most people don’t realize that these records are then required to be sent electronically to the federal government — without further patient consent. As Dr. Vliet points out, this is patently unconstitutional.

The medical information compiled in the database would then be used to decide which treatments would be allowed based on such factors as age, weight, health condition, life expectancy, and “quality adjusted life years” (QALYs). In effect, your own medical data is then used against you to deny medical treatment you may need but the government decides is “unnecessary” or too costly.

But wait, it gets better.

On May 6, a 10-year federal government program was launched called “All of Us.” It’s goal is to compile your personal medical and lifestyle information. It isn’t just focused on medical treatment you may receive, as specified in TARP. This project seeks ALL of your personal health and lifestyle information: medical records, psychiatric records, drug abuse/addiction treatment, lifestyle, personal habits, your physical measurements such as blood pressure, weight, lab results, all health care visits, medications you are taking, AND even your DNA.

Theoretically this information is going to be used for research. Research for what? By whom? Will it be used as global data showing trends or will you be specifically targeted because your DNA indicates you may be at risk for certain diseases or personality traits?

When I think of all those HIPAA forms I’ve signed in countless doctors’ and medical facility offices telling me how they are safeguarding my privacy, I don’t know whether to laugh or to cry. I feel like Dorothy in The Wizard of Oz being told not to pay attention to the man behind the curtain. In this case, the man behind the curtain is the federal government accumulating, using, and sharing our personal patient data.

We’ve been — and are being — robbed and we didn’t even know it. Worse, there are no cops to call.

In writing this post, I have borrowed heavily from Dr. Vliet’s excellent article. I am grateful to her for the research and opinions she provided.

 

 

 

The PBM Policy Meeting and Why You Should Care

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I reported earlier that through the generosity of RheumatoidArthritis.net and credentials from IFAA,  I was able to attend the recent Pharmacy Benefit Manager (PBM) Policy Forum in Washington, DC. Describing the conference in one word, the word I chose was “disturbing.” I have provided a more complete report on this meeting and its consequences for patients here: https://rheumatoidarthritis.net/living/pbm-policy-forum/.

I have been somewhat outspoken about PBMs and their practices in previous posts which you can read here:

Note that in a couple of the referenced articles, I make reference to President Trump’s drug pricing speech scheduled for April 26. While he had time to visit the NRA annual convention on May 5, he hadn’t yet had time to speak to the country about drug pricing (which he finally did on May 11). I apologize for the incorrect date references. I was just quoting what the President promised.

Thanks for checking in.

 

The FDA Wants to Hear from Patients Regarding Pain

In a world where wonders never cease, FDA Commissioner Scott Gottlieb, MD wants to hear from patients (and only patients — not doctors or lobbyists or pharma or others — just patients) about the quality of their pain care. (In the United States, only, please.)

You can read the news story here: https://www.painnewsnetwork.org/stories/2018/5/14/fda-commissioner-listening-to-pain-patients

You can post your comments here: https://www.facebook.com/PainNewsNetwork/posts/2025783414363568

This is our chance to be heard! Please share your story and pass along to others.

 

I Don’t Feel $16,000 Better

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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/

Awareness of an Invisible Disease

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Taking the risk of repeating myself, I think this previous post regarding our invisible disease and Arthritis Awareness Month expresses my thoughts. Please enjoy:

May is Arthritis Awareness Month. Usually starting in April I get inquiries from various groups asking my help in raising awareness of RA and other arthritic conditions. I don’t mind helping out a good cause, but I tend to point out (rather obviously, I think) that people who read my blog are already aware of arthritis. We don’t need reminding. In fact, what most of us want is to become UNAWARE of arthritis. We want all the pain, stiffness, fatigue and other symptoms and especially medical bills to just disappear so we are completely unaware that we’ve ever had the disease.

(This reminds me of the story of Johnny Cash when he played Folsom Prison. He was told not to sing any songs that reminded the men that they were in prison. His wry reply was along the lines of, “Why? Do you think they’ve forgotten?”)

Most of us are caught in the dichotomy of wishing people understood our disease better and going to great lengths to keep it invisible to other people. It’s a tough balance.

I do what most of us do. I show up when I’d rather lie down.

Invisibility is important to many people for lots of reasons. But awareness is crucial for a lot of important reasons, too.

I don’t necessarily want to repeat myself fully here, but in honor of Arthritis Awareness Month, I invite you to read a favorite post of my entitled, “Being (In)visible” at RheumatoidArthritis.net. https://rheumatoidarthritis.net/living/invisible/

Thanks for checking in.

Can You Help in May? It Won’t Cost Anything

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I’m sure you’re aware that I volunteer for a number of arthritis-related causes. While I’ve never asked you to support these causes, one of my favorites has a way to help without costing you any money. For every picture you upload, Johnson & Johnson will donate $1 to IFAA (International Foundation of Autoimmune and Autoinflammatory Arthritis). You can upload one picture each day during the month of May. The picture can be of anything. It can be existing or one that you take that day. The goal is $15,000 – or 500 people taking a picture for 30 days. More information about this is below. You upload the picture via an app, which will remind you daily to upload a picture.

If you’d like to help, but participating in the daily ritual is not your cup of tea (or you live outside the US), you can donate directly via credit card or PayPal here. It’s a small organization so every $ counts. Anything you can do to help will be greatly appreciated. I don’t ask for help often (if at all), but I believe in this organization and their work, so I’m asking now. Please help if and however you can.

Thanks! Carla

You know you’re going to take selfies, photograph your dinner, snap a shot of your pets – so why wouldn’t you share them online through the FREE Johnson & Johnson Donate a Photo app and help the International Foundation for Autoimmune & Autoinflammatory Arthritis (IFAA) raise $15,000 towards driving global awareness about autoimmune and autoinflammatory arthritis?

GET READY:

Download the FREE Johnson & Johnson app on your iPhone or Android device NOW then you will be ready to go on May 1*.

GET SET:

  • Set up your account on the app*. It takes just 5 minutes.
  • You can link your social media accounts (Facebook, Twitter, Instagram) so your photo automatically posts there, too!

GO!

  • May 1 – May 31, when you share ANY photo online, post them through the app and earn $1** for our cause.  To learn more about this campaign, including how to set up a company, school, or group team, please visit our Donate a Photo page.

Trump Drug Pricing Announcement on April 26

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I just came back from the PBM Policy Forum 2018 in Washington DC. (A PBM is a Pharmacy Benefit Manager – more about this below). Among the more than 140 companies, organizations and government offices participating, there were several notable state and federal speakers including Scott Gottlieb, the Commissioner of Food and Drugs for the FDA.

I use the term “speakers” very loosely because the government speakers managed to say a lot without saying much of anything (or at least anything new). Part of the reason for this is that President Trump is slated to speak this Thursday, April 26 on his drug pricing initiatives and the speakers from the federal government were loathe to potentially give any indications of what would be in the speech. Speculation abounds including this commentary from Marketwatch.

I will provide a more thorough update on what I learned at the meeting. However, there were 10 presentations in about five hours on very diverse topics and I’m trying to wrap my brain around how to condense this information into some meaningful content.

But there is no question that I have been outspoken about some of the PBM practices. Please see the previous few posts below and stay tuned for the update from the meeting:

Thanks for checking in.

 

Reverse vs. Anatomical Shoulder Replacement

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Believing in the truism that a picture is worth a thousand words, I’ve merged the X-rays of my left (anatomical) and right (reverse) shoulder replacements together.

right (reverse) and left (anatomical) shoulder replacements

The left/anatomical replacement is so named because it mirrors the body’s natural anatomy. There is a socket in the shoulder that a ball joint — attached to the arm — fits into.

The right/reverse replacement is just the opposite. As you can see from the picture, the ball joint attaches to the shoulder with a disk/socket attached to the arm.

And I don’t understand the technical aspects of why this is, but the primary difference between the two is that my rotator cuff on the left/anatomical side is a primary force in moving the arm/shoulder. However, on the right/reverse shoulder, the rotator cuff is basically bypassed and the deltoid muscle moves the arm. As I have had two previous rotator cuff surgeries on the right shoulder, the reverse replacement was the wiser choice. If they had done the anatomical replacement and I’d had future rotator cuff problems they very probably would not only have had to repair the rotator cuff (again), but remove the implant and do a reverse replacement anyway. Better to start there and avoid the issue altogether.

I hope whatever position your shoulders are in, that you’re both healthy and happy.