Patients Confront USA Today: More Media Mess on Rheumatoid Disease
We fight the battle against Rheumatoid disease on several fronts including scientific research, improving clinical care, supporting patients and caregivers in their search for information and support, and creating general public awareness that will contribute to all of the above. Our main weapon has always been the truth. The logo is a spear – made from a pen.
We’ve had success in several cases, including apologies and articles being changed or deleted, for example:
- Greenbaum’s Kiss My… piece is NOT listed in the blog archives at Rheumatology News
- The Emaxhealth doctor who changed his “Take aspirin instead of biologics” “Rheumatoid uterus” post numerous times in response to our (mostly deleted) comments
- The Woman’s Day journalist (NOT the editors)
- Women magazine
However, misinformation about Rheumatoid disease is a continuing battle and some have dug in for a long time, such as with the Woman’s Day editors, who claim patients are mistaken since the Arthritis Foundation stands behind the piece.
The current battle with USA Today
Over the past 10 days, I’ve gotten several email updates from a reader named Xxx who made it her personal mission to expose the latest misreporting about Rheumatoid disease. She wrote letters, made phone calls, inspired blog posts, and politely refused to take no for an answer. USA Today has changed the original article, so it is now less offensive. However, the article still seems to imply that the experience of a minority with RA (in remission and biking hundreds of miles) is actually a majority. And uses the dreaded “eventually” with regard to loss of function.
What can you do?
You can join me in asking USA Today to produce a more suitable article about Rheumatoid Disease, getting input from patients and consulting with the Rheumatoid Patient Foundation (RPF) for accuracy? If you’d like to write, Brent Jones is the Editor for Accuracy: accuracy@usatoday.com. You can also write a letter to the editor to Michelle Poblete: mpoblete@usatoday.com.
Below is my email to a reader and excerpts from her emails to others on which she cc’d me:
My response to Xxx:
Dear Xxx,
Thank you for your diligence regarding this article; I’ve read your emails and the comments at USA Today. I agree this is a matter of critical importance to people living with Rheumatoid disease. As you must have realized, misrepresentation of matters related to Rheumatoid disease has been a problem for many years. In the past few years, our community has faced this challenge numerous times with such publications as Woman’s Day, ABC News, Consumer Reports, Prevention, and Arthritis Today, and others.
Over the past four years, I’ve had tens of thousands of points of contact with patients. While I’ve read hundreds of studies or journal articles, I can tell you the one thing I have learned above all is that the disease patients actually experience does not satisfactorily correspond to what is reported or discussed. For this reason, and in response to the outcry of patients across the country and across the world, we founded the Rheumatoid Patient Foundation (RPF) nearly two years ago to address the needs of this vast community.
We have had great success in educating the people about facts and statistics related to Rheumatoid disease. We believe that misinformation will end because the public refuses to stand for it, and because people such as you are faithful to continue to speak out against such articles as Ms. Lloyd’s USA Today piece.
There is one obvious next step to this current situation: USA Today ought to produce an accurate article on the topic of Rheumatoid disease, consulting patients to ensure completeness. As President of the RPF, I will publicly call upon them to do so.
Kind regards,
Kelly Young
Excerpts from Xxx’s last email
On 12/23/12 12:18 AM, Xxx xx wrote:
Hello,
Here is the comment I left on the USA Today website following the minor revision of the Lloyd article:
It is good to see that the Editors of USA Today, likely the author, and perhaps the rheumatologist revised this article. Unfortunately, it appears only a minor revision was completed. The article still contains factual errors (Enbrel and Methotrexate are not new RA drugs, “remission” is not defined and is used rather loosely). The many MANY comments either asked the authors to provide a broader representation of those with RA and their varied response to treatment and/or to include research FACTS. I don’t see that these suggestions were taken to heart. So many of us had higher hopes that our comments would be taken seriously and a major re-write would be completed or the article would be eliminated.
From Xxx’s original letter to USA Today:
Hello,
It was a pleasure to speak with you on the phone today and to receive a call back from Brent Jones, Editor for Accuracy at USA Today. I have rheumatoid disease causing eventual disability. My symptoms are not controlled by treatment at this time even with excellent medical care.
I appreciated our discussion about Janice Lloyd’s article New Treatments Put Rheumatoid Arthritis in Remission posted December 18, 2012 on the USA Today website and the reasons why the article has inaccuracies. As I mentioned, I understand the article might be an attempt to feature one person’s positive response to treatment for her rheumatoid arthritis. In this respect, her response to treatment at this point in time is likely accurate. In the broader context of rheumatoid disease, the author unfortunately provides inaccurate and misleading information. Here are just a few of the errors:
- It is unclear why Ms. Lloyd has chosen a 75% remission rate as representative of all patients’ response to treatments.
- The biologic agent (Enbrel) she refers to has been on the market for many years and is not new.
- One person’s response to treatment at one point in time does not represent the range of people with rheumatoid disease nor accurately reflect the likely disease process.
Postblog: Please think of RPF in your tax-deductible year-end giving. You can become an individual, professional, or corporate member today – click here. Finally, a voice for Rheumatoid patients.
Edit 1:27pm 12/27: Name removed to protect the writer of the letter.
Recommended reading
MEDIA SECTION WITH DOCUMENTED MYTHS, TRUTHS, & FACTS – click here
- Rheumatoid Arthritis Awareness: Sugar Coat Cookies Please, Not a Disease
- I Fight My Pain and Blog
- Mind-boggling! – Aftermath of Tofacitinib FDA Hearing Part 2
Kelly,
Do you have a link to the original article? I would very much like to read it before I comment on any inaccuracy. I think we want to encourage public awareness of the disease and try to make sure that they do so with accurate information, a fine line to walk since so many rheumatologists, theoretically experts, even spread what I would have to consider misinformation. I think back to my original experience and the rheumatologist who told me “You don’t have rheumatoid arthritis; your bloodwork is negative.” I can’t imagine what my life would be like now if I had accepted that and continued in treatment with him. He has a very good reputation locally and I suppose that if I were seropositive I would have received appropriate treatment but I shudder to think of the seronegative patients in his practice and their future. Here is a respected rheumatologist, who TEACHES at a local hopspital, who believes that seronegative rheumatoid arthritis doesn’t exist. I am now currently treated by a doctor at the Cleveland Clinic who believes that as many as 20% of people with Rheumatoid Disease are seronegative and is totally unfazed by my bloodwork and because of this, I am on Humira and am greatly improved, although I am sure that I will NEVER ride a bike again! My knees are howling with how screamingly funny that idea is and I really want to tell USA today that too – and I’m a success story!
The original article has been updated, so that is all you can comment on at this point. Here is the link http://www.usatoday.com/story/news/nation/2012/12/18/rheumatoid-arthritis-pain-treatment/1752241/
There is now a discussion with 38 comments, but I think letters to the editor are still valuable. They need to know that going forward, this will not be accepted by the public.
looks to me like “some improvement” =remmisionin this fairytale
I tried to view the article but was unable to as the screen was covered over. Any attempt to remove the covering and I was redirected to the next article.
I am also a success story even though my RA is not under control. Most likely it never will be. I have resigned myself to this fact. It will get progressively worse as time transpires. I have set my mind to control my life and to not let the RA control me in as much as I can.
It is frustrating when we read or hear about these kinds of articles. They only help to spread the mis-information that abounds regarding RA. Fortunately I do have a good doctor who is well studied on this disease and who treats me based on me and what I am going through not what books or blood work says. Not everyone is so fortunate though.
When I can get a access to the article I will draft a letter to the editor.
Thanks Kelly for all
Thanks for bringing attention to this poorly written article. Here is a response I wrote and sent to the author and editor.
http://livingwithra.wordpress.com/2012/12/19/is-ra-remission-possible-and-permanent/
I really appreciated your blog post, Andrew. Your article is a fine example of what USA Today might consider when writing about rheumatoid disease. I’m so glad Kelly has contacted the Editors of USA Today and will look forward to their reply.
Enbrel was my first biologic, but once we determined that it didn’t work, we went to Remicade (all with a side helping of Metho). Now after six months we are looking at switching to yet another biologic to help slow down the progression of disease. I am thankful that I have such a great rheumatologist who is willing to look at all aspects of RA and listen to me.
While the article is misleading (and boy is it), we need to remember that the drug combo, Enbrel + Metho, worked for the patient and that, at the very least, we should be happy for the slowing down of her RA. I saw very little of that in the comments on the article. That being said, it dismays me to think that my husband or my parents or my children could read that article and have the hope that one day I might go into remission when, frankly, I doubt it will happen as we cannot get the RA under control.
Also, the 75% remission rate mentioned in the article is, I believe, a reference to the Trial of Etanercept and Methotrexate with Radiographic Patient Outcomes (TEMPO). But, as you might have guessed, the percentage claimed in the article does not differentiate between progression and remission at all and grossly misrepresents the findings of that study.
Letter sent to both. Thanks, Kelly.
So, I’m part of the media. My goal is to not goof up with RD as is so common, and with a recent article I wrote, I went through the checklist you have posted of dumb things the media does. Happy to say, I don’t think I did any of them, and my sister-in-law (RD patient) said she doesn’t think so either. Happy day. What I found frustrating was trying to find a rheumatologist who would speak with me. My editor required “a professional’s voice” in my article, and that’s been the biggest challenge. Your blog has been very helpful in offering some guidelines for what an RD article should (or should not) look like. So thank you.
thank you, Lara, for your efforts to get it right, and for being a good sister. I’ve dealt with many reporters and editors in the past few years; some are wonderful, and others have an agenda that conflicts with reality & makes it hard to get it right.
AND, yes you’re right – just as it’s hard for patients to find a good rheumatologist–