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: email@example.com. You can also write a letter to the editor to Michelle Poblete: firstname.lastname@example.org.
Below is my email to a reader and excerpts from her emails to others on which she cc’d me:
My response to 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.
Excerpts from Xxx’s last email
On 12/23/12 12:18 AM, Xxx xx wrote:
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:
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.
- 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