One of the things I have enjoyed most the last few years as I’ve focused on my health is the opportunity to work with pharmaceutical companies. I’ve met some amazing, talented people who see the future of RA treatment from a very different perspective than I do. This has given me both insight and hope for both present and future people with not only this disease but related autoinflammatory and autoimmune conditions.
The downside of this is I’ve also been accused of “selling out” to big pharma and “being used.” Some of this is simply bias against the pharmaceutical industry but part of it is because patients who participate in these activities are often paid. It’s usually not much — I could make a lot more in the same amount of time in my mainstream consulting business. I do it because I sincerely believe that the patient voice needs to be heard and I’m thrilled that industry is listening.
I just ran across the following article by a cardiologist who has also worked with pharmaceutical companies and shares some of these same concerns. Obviously he works on a much different level than I, as a patient, do. However, his comments and perspective are both well-considered and relevant. I invite you to read it:
Thanks for checking in.
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.
I’m not much for New Year’s resolution, but the start of a new calendar (following the excesses of the old one) is a good time to reflect on ways to make your life better. Here are some of my thoughts as we begin 2018:
- Balance. Since I left full-time employment about two years ago, I’ve been almost exclusively focused on RA advocacy. This has been incredibly rewarding in ways that I couldn’t begin to imagine. But I’ve come to the conclusion that my disease is now dominating my life. I spend hours each day researching, writing, emailing, and on social media. While I intend to maintain the wonderful relationships and existing activities, I have declined some new opportunities and adjusted some other commitments to make more room in my life for other things.
- For better, not for worse. We all have situations or people that cause us varying degrees of stress or grief. This might be an annoying friend or co-worker, a job where we cry on our way to work, or even an abusive life partner. We often “go along to get along” because there are benefits in these situations or perhaps we just don’t want to go through the drama (or trauma) of change. Many years ago, I adopted a strategy I use when I start to think that “enough is enough.” My bottom line assessment is whether my life is better with or without that person/situation. And while this assessment has led me to move, change jobs, and even to divorce an abusive spouse, it has also given me the commitment to work through issues to improve a situation or relationship to where it is rewarding (or at least acceptable). It seems like the last couple of years I’ve fallen into the habit of saying “yes” to temporary things that have morphed into longer-term obligations that do not provide a positive return for me. I have realized that these things are actually robbing me of the time and energy I could use to do things that bring me joy, enrich my life, and feed my soul. As these situations raise their head this year, I am committed to being honest about my feelings and whether they should continue to be part of my life going forward.
- Sustainability. In 2016 I lost 25 pounds. In 2017, I kept them off. It’s time to take the next step toward losing more weight. But I know that I have to do it in a manner that works for me. I started walking in 2017, and that works for me. Basically all I have to do is lace up my shoes and head out the door. While something like water aerobics might be better for my joints, if I have to get dressed, drive to a pool, then take the time to dry off, get dressed and drive home, I won’t keep the commitment. I need an exercise program that is sustainable. Similarly, I’m looking at a temporary diet modification to jump start my weight loss. I have a neighbor who has had amazing results with the GBOMBS plan, losing 28 pounds and relieving his gout symptoms. The Galloping Grandma reports incredible results following Clint Paddington’s eating plan. I know that I would last about one week following either of these highly regimented diets. I’m not saying they won’t work — but they will only work if you adhere to them and I know that I won’t. Rather, for the month of January, I am adopting the Alternate Day Fasting (ADF) where you restrict calories (to 500) one day, then eat normally the next. The 500 calorie days take a bit of planning, but it is actually quite a bit of food if you stick to lean proteins and vegetables. I’m modifying it slightly, doing the fast days on M-W-F which give me two days during the week and the whole weekend to eat reasonably. This schedule also is a bit easier on my husband who has to endure my diet attempts. If this works, and I can do it, I might adopt it for a longer period.
- Kindness. I continue to be amazed at how cruel we can be to each other, especially online. In other cases, we tend to be very self-absorbed (in ourselves, in our phones, in our own desires) that we forget about the other people around us. It’s always easier to criticize (How could you be so stupid?) than say a kind word (That must have been tough for you.) I am continuing my quest to be kind, not only to myself, but to others. I implore you to do the same and, if you can’t actually be kind, at least try being polite. The dividends for you and for those whose lives you touch are amazing.
So happy 2018 to you and yours. May the year be filled with blessings for all of us. I hope whatever you resolve that it brings you health and happiness. 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.
Virginia Hammerle is a local legal expert, lawyer, and columnist for the Dallas Morning News. In today’s column (also on her firm’s blog) she talks about the Texas Lawyer’s Creed that was created to set standards for courtroom behavior. Originally drafted a generation ago to help curtail the “Rambo-like tactics” of certain lawyers, the two highest Texas courts subsequently issued it as a court order, making it binding on all Texas lawyers. This order was reaffirmed in 2013. Who says rambunctious lawyers can’t mind their manners?
Ms. Hammerle has modified it into a Family Creed that, if adopted, could help civility reign at a time that should be joyous but all too often turns into hurtful drama. I encourage you to read the article at the link above.
I am lucky to not only have a family but to also have an extended family of local friends and to be part of a greater social community that includes many advocates that I respect. Unfortunately, in the impersonal world of social media, it’s easy to be aggressive. I have been witness to behavior online that I would have never suspected came from the person I enjoy face-to-face.
For my gift for the holidays, I would like all of us to adopt Ms. Hammerle’s family creed (both in person and online). I won’t reproduce it here, but two of the things that strike me from the creed are:
- I can disagree without being disagreeable.
- I will treat everyone with courtesy and civility.
I have learned through experience (as most hard lessons are learned) that you can only get back the respect that you give. Let us give each other this gift not only for the holidays but going forward.
However you celebrate the holidays (or like me, don’t celebrate) , may you and yours be blessed with health and happiness.
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:
I read this news story and don’t know whether to laugh, cry or be alarmed (probably all at once). I have a dear Irish friend that I’ve accused of only needing air to … Well, better you should read the story for yourself (warning – the link gives the punchline away):