Consumer Reports’ Absurd Best Buy Rheumatoid Arthritis Drug List
RESPONSE TO Consumer Reports Health Best Buy Drugs; Evaluating Prescription Drugs Used to Treat the Symptoms of Rheumatoid Arthritis: The Biologics
Warrior to Washington: Next week, I’m going to D.C. to make an oral presentation to the “Arthritis Advisory Committee” at a hearing about a new Rheumatoid Arthritis treatment, tofacitinib. I want you to know why I feel it’s important and necessary for the patient voice to be heard. Erroneous public perceptions about Rheumatoid Arthritis or RA treatments can best be corrected by authentic patient testimony. Watch for my next report, but meanwhile, let’s look at why its needed.
Evaluating the Evaluator: How Consumer Reports got it so wrong on Rheumatoid Arthritis
The Symptom: ridiculous articles in the media like Consumer Reports’ “The Biologics”
The Problem: a complete lack of understanding of RA and its treatment guidelines
The Solution: patient voices bringing accuracy and context to the conversation
The Consumer Reports report on biologic response inhibitors is only a symptom of a wider problem. Rheumatoid Arthritis and its treatments are misreported more ways than Kraft serves cheese. We’ve covered some of the gems over the past few years (see partial list below).
I’ll point out some errors in the report, but I don’t want you to lose sight of the bigger picture. It’s not just Consumer Reports or ABC News or Woman’s Day. The problem is with Rheumatoid Arthritis being a disease that is misnamed and misunderstood. This is the reason for its longtime “Loser disease” status and the paltry research dollars.
Reading “The Biologics” in Consumer Reports might lead one to believe that current treatments for Rheumatoid Arthritis are effective for a majority of patients or that research and new treatments are not urgently needed. Here are 20 reasons I hated it enough to spend a whole day writing this:
- “If left untreated, it can lead to irreversible joint damage” (page 2) implies that treatments prevent damage. While only 18% of patients we surveyed have no damage at all, 94% have taken DMARDs and/or Biologics. While there is evidence some treatments can slow disease progress in some patients, implying that treatment prevents damage is an overstatement.
- “If those therapies fail to provide you with enough symptom relief, then it may be time to try a biologic” (page 2). This is not about symptom relief. The pyramid system, renamed as “step-up” therapy, is not as effective as aggressive treatment at reducing damage. Many opinions have been written about the data from the TEAR trials, but patients who respond to aggressive use of biologics (see chart page 28) fare best.
- “We have chosen the following as Consumer Reports Health Best Buy Drugs: (1) Adalimumab (Humira); (2) Etanercept (Enbrel); (3) Abatacept (Orencia)” (page 2). Are you wondering whether I ever made it to page 3? Or what kind of dunce award I have for this journalism? Unfortunately, no one can predict which biologic will work for which patient (see Yacizi quotes here) and the choice of which one to prescribe at a particular time is a decision doctors should make with respect to the complex medical circumstances of each individual. Only 20% ever find a treatment that brings 70% improvement; it is a long shot. Thinking that a “best buy drug” list for RA is even possible is absurd.
- Page 3 contains a chart with a list of the “Generic Names” of each Biologic. These are not generic names; they are the names of the actual compounds contained in the products. Enbrel contains etanercept. The editors should have caught this discrepancy since other sections of the report bemoan the fact that no generic exists in the US, increasing costs.
- “Actemra” is misspelled on page 3. I know it’s trivial, but I’m a teacher. And they claim to be the expert judge that consumers should trust. They should at least proofread.
- “Other treatments for rheumatoid arthritis often used with biologics include pain relievers or nonsteroidal anti-inflammatory drugs (NSAIDs) — for example, ibuprofen…” (page 4). Lesson one when discussing Rheumatoid Arthritis medications: do not confuse disease treatment with symptom-reducing medications. NSAIDs do not “treat” RA.
- I had problems reviewing page 5 since most every sentence contained some type of inaccuracy. The teacher in me wants to take a red pen to write “Do over;” but here goes: “Rheumatoid arthritis is characterized by pain, swelling and inflammation of the joints.” RA is more than inflamed joints; it’s a systemic disease.
- “It most commonly starts in the small joints of the hands and feet” (page 5). No. I’m sure the writer read that somewhere, but there is no evidence that it’s true.
- “Eventually all joints can be affected” (page 5). All joints can be affected from the very beginning, not eventually. Several patterns of progression exist, including full-blown onset with every joint affected.
- “Your joints can feel stiff, particularly in the morning” (page 5). RA morning stiffness is like “morning sickness” with pregnancy: most women are nauseous, but it’s limited to mornings only in a rare few. Or in textbooks.
- “Symptoms often come and go, and are often accompanied by fever or feeling tired or unwell” (page 5). There are various patterns of disease activity; this describes one of them. Others have more constant symptoms.
- “As the disease progresses, sufferers can experience severe joint damage and fatigue, making it difficult for them to complete everyday tasks” (page 5). Damage can be immediate or slow. Fatigue is often present before diagnosis. Most patients have difficulty with daily tasks early in the disease, prompting them to seek medical treatment.
- Blood tests for “inflammation” or Rheumatoid factor (Rf) are emphasized and the anti-CCP test is not even mentioned. While 40% of patients have normal “inflammation markers” and about a third have normal Rf, the unmentioned anti-CCP is more likely to be positive. And there are other options to view inflammation such as ultrasound or nuclear bone scan.
- “(C)ommonly prescribed medications include pain relievers such as ibuprofen (Advil, Motrin, and generics), naproxen (Aleve, Naprosyn, and generics), and steroids such as prednisone and methylprednisolone (Medrol), which reduce inflammation and pain and slow joint damage” (page 6). Advil slows damage? They should add that to their television ads.
- “Studies show that exercise programs improve the function of people with rheumatoid arthritis” (page 6). I’m certainly aware of the debate over the exercise myth. Asking patients, we have seen about an 80-20 divide between patients about whether physical activity increases or decreases disease activity (80% noting physical activity causes or exacerbates damaging flares). Patients with milder RA or who respond to treatments tend to feel better with activity. More to come on this thorny topic.
- “(S)ufficient relief from your rheumatoid arthritis symptoms” (page 7). The entire article focuses on symptom relief. The authors seemed to have no idea that Rheumatoid disease kills people. I know that’s not popular to discuss, but it’s still the truth.
- The comparison of different biologics on page 7 is silly. These studies are usually sponsored by the companies who sell the drugs. It’s not reasonable to compare different patient groups in different treatment settings and different countries. More reasonable comparisons have been made by literature analyses which compare several studies at once. I recommend Yazici’s editorial on the subject.
- Page 8 is more silliness. Most people with RA can’t choose a treatment based on side effects. Only 20% of patients ever have a 70% improvement as a treatment response. There is no way to predict who will have which side effects and patients are often desperate to find reprieve and get some of their lives back. While treatment side effects are bad, the effects of the disease itself are usually much worse. That perspective was missing from the article.
- Page 10 is a chart: “Important Considerations for Choosing a Biologic” which reads like we’re choosing a vacation spot. Most RA patients do not have the luxury of considering anything besides availability/cost and effectiveness. Finding an effective RA treatment is akin to winning a lottery, so other matters pale in comparison.
- I’m not going to pick apart page 11 about choosing by effectiveness of a biologic because I’m tired and I’m sure you are too. Effectiveness is the most critical issue in choosing a treatment. Most RA patients do not have an effective treatment: About 30% improve 20%; about 34% do not respond; the remaining 36% experience from about 50 to 70% symptom improvement.
With regard to discussion above of whether Consumer Reports would stand by this story today, here is an update: The biologics “report” is still being promoted on their website in spite of the numerous errors, and it does appear that CR stands by the story. The following page was created on Feb 21, 2013:
http://www.consumerreports.org/health/best-buy-drugs/rheumatoid_arthritis.htm It contains a story about which 3 biologics CR recommends as a result of this report, and an error-laden video. The fact that a magazine with the resources of CR could publish and then stand by such blatant errors makes this incidence a valuable example of media errors with regard to rheumatoid disease.
Noting some media gems covering RA:
- From AF: Rheumatoid Arthritis Natural Treatment: The Beachcomber Article
- “25 Years in Arthritis” – an Article on Rheumatoid Arthritis by ABC News
- Claiming RA doesn’t affect typing: Rheumatoid Arthritis Pain Is Not Our Only Pain
- The Woman’s Day problem
- 3 Reasons Why the Public Image of RA Is So Rosy
This was such an irresponsible article, it just makes me sick. They would no more write this type of “best buy” article for Breast Cancer patients or Heart Disease patients. What in the world would give them any indication that it is ok for RA Biologic meds to be assessed this way??!! I have never liked them because of their garbage reporting and this has pretty much cemented my eternal boycot of anything they do.
Thank you Becky!! I made the exact same statement on the Facebook page. Imagine if we substituted the term Breast Cancer evry time CR uses the term RA. There would be an uprising! This is not just irresponsible journalism; it is downright egregious. I’ve shared this both on my personal wall (where all my healthy friends will ignore it) and on my AIA wall on FB. I urge everyone to share this and get the word out that we do not appreciate CR misinformation.
Who are they to determine treatment paths for doctors?? “If you have been newly diagnosed with rheumatoid arthritis, studies show that other, less costly and safer medications work just as well as biologics, so you should try these first. These include ibuprofen (Advil, Motrin, and generics, naproxen (Aleve, Naprosyn, and generics), corticosteroids, such as prednisone, and nonbiologic DMARDs, including hydroxy chloroquine(Plaquenil), sulfasalazine (Azulfidine), minocycline (Dynacin, Minocin), and methotrexate(Rheumatrex).” Why didn’t they just include asprin and gold injections while they were at it?? GGRRRRRRRRR!!!!!!!!!!
I thought advil was the modern version of aspirin anyway. Not much different… as far as disease treatment goes.
Get ’em, Kelly!!!!!!!
What a great find, Kelly. Unfortunately people take Consumer Reports seriously and some folks may think this simplistically (and erroneously) about treatment choices. There is so much food for fodder, but it would take much too long to correct the “report.”
“The full DERP [drug effectiveness review project] review of the biologic drugs to treat rheumatoid arthritis is available at http://derp.ohsu.edu/about/final-documentdisplay.cfm. (Note that this is a long and technical document written for physicians and other medical researchers.)”
Too bad that long and technical document [not intended for weak-minded patients] does not seem to be available for viewing.
Thanks, I’ll ask if a friend can get that for us. I had this pdf on my to-do list for a while. Seemed like it shouldn’t go unanswered.
Kelly, you are amazing with everything that you keep up on for the rest of us. You are an angel.
I am so disappointed in Consumer Reports for this terrible article. There is already enough bad information. Why are they adding to it??
Kelly, I am sputtering right now, and I wish I had time to write you a more lengthy note of support! Suffice to say, your hours of work were worth it, and if you were here in town anywhere near to us, I would go out in this awful rain to give you a hug for all the time and heart you put into your response—as always,you’re our rock! Thank you!
Consumer reports is horrible. Just because they review appliances etc they think they can review a disease-disgusting and irresponsible.
Kelly thanks for everything especially Number 19.
Did the same reviewers at Consumer Reports who review toaster ovens write this article? Is not telling us which biologic we should choose practicing medicine without a license? It appears CR has replaced our rheumatologists. The article is beyond appalling. Also the premise of “Best Buy” is ridiculous. Few if any of us pay ‘out of pocket’ the enormous costs of these drugs. It’s hard to even comment on such an absurd and dangerous article.
That’s how I felt Jay. That’s why it took me so long to figure out what to say. And I thank anyone who waded thru this with me! yuk.
Amazing stuff. How can a “consumer report” if they aren’t a consumer of the disease or treatment? Have they run out of things to report on? Remicade can have it’s dosage adjusted by weight while others cannot. They failed to consider so many important things. But they aren’t consumers of these medications so how would they know what may or may not be important? Health care decisions are between a patient and a doctor, it is individualized. When they recommend a car it is because they test drove all of them in the class and selected the best buy. The folks who wrote this article neither test drove the disease or the medications. How ridiculous.
great point! I wish I’d said that! 🙂
Excellent points Debbie! Consumer Reports gives us, unfortunately, a great example of how to do terrible reporting. High school level research papers are more thoroughly written than this article.
Excellent work Kelly. Why exactly does it take until the last paragraph of page four for them to finally (almost) call RA a disease? “This report focuses specifically on the use of biologics used to treat rheumatoid arthritis, though it is worth noting that some of the biologics have multiple uses and are also approved for treating other diseases such as ankylosing spondylitis, Crohn’s disease, psoriasis, and ulcerative colitis.” In the first three pages RAD is simply a “condition”. Stick to your bad reviews of cars and MP3 players Consumer Reports! I’ll let you tell me how to treat my wife when you let me come and tell you how to run a magazine.
rawarrior Do you know what issue this was in? Just curious as Kim’s parents are subscribers. I see it was from 2010, but was it reprinted?
I don’t know Eric. I saw it was being tweeted by someone a couple months ago & I saved the link to write a response.
Kelly, just READING this fries me! Oh, poor little hypochondriac, it seems to be saying. If you don’t “get relief” from one of these wonderful drugs, then it’s all in your head! Like most of us on RA Warrior, I’ve been on so dang many biologicals that it would make a normal person’s head spin. NOTHING works all the time or forever. We may get relief for a few months or years, but then RA seems to be able to figure a way around whatever you’re taking and a new treatment has to be found. Sometimes I wish I could “bless” people who are arrogant enough to think they have all the answers to one full day(and night) of RA THEN they can write their little know-it-all articles!
I’m not much of a complainer, but RA IS NOT like Osteo! It affects lungs, eyes, heart, gut as well as joints! (not to mention the brain fog!)
The ignorance of some people is simply amazing!
Kelly, thank-you so much for your fight for all of us with RA! I know how much it can take out of a person just to try to live a normal life. You do that PLUS be such a fantastic advocate for us! All I can say is bless you!
The linked pdf is dated June 2010. The information is two years old. I wouldn’t assume it would be written exactly the same at this time.
Have you see anything more current on the biologics, like the Q4 AERS update from AdverseEvents.com?
I disagree with that “assumption.” The same 9 treatments are the ones approved for RA. We knew then what we know now about advil. Most of the issues I took with the “report” are with respect to its treatment of the disease (RA) itself. Having read thousands of pages online about RA over the last few years, I can say it appears that the report was written using superficial reading of descriptions of RA, which abound on the internet. These are the kinds of things that led me to build this site. Where all kinds of views are heard, including that of honest patients who just want an accurate story told.
I just double-checked and you’ve made 10 previous comments that I see, all of them of this same tenor or worse, even criticizing choices I make for my own children. I’ve never deleted them, but it’s odd that you would still be reading when you find everything I write (or other posters write) to be objectionable. If you mistrust what it is written here, I’m not sure why you’re still reading.
I’m sorry if you take 10 comments as being critical of everything posted here. I usually ask a question for clarification and it is never answered. I was genuinely concerned about your son’s situation and hoped you wouldn’t inadvertently cause a delay in his treatment by focusing too much on one type of diagnostic testing. Or add more to your plate with long distance travel for care – something we have had no choice but to do and I know from experience can be extremely stressful. I hope he is doing well now.
I’m surprised that you would consider deleting comments simply because they voice a different opinion or ask a question of your opinion. I’ve never been vulgar, profane, or spammed anything. I’m just a mother who has read thousands of pages, too.
The policy of this blog is obvious: to post everything, including contrary comments (clearly so, since all of yours remain in place).
The point of my statement was missed: if a reader only posts critical, negative comments of a certain tone, 11 times in a row, then it indicates a definite trend.
In my experience, most websites do not post negative comments, but this one obviously does. (However, as the disclaimer makes clear, spam and personal attacks are not allowed.)
You’ve obviously disagreed with my decisions as a parent as well as my perspectives as a writer. For several reasons, I’m not going to spend time defending them to you . I hope we can agree to disagree and leave it at that.
When you consider that I do not personally have RA, I’m not sure how much of this blog it would be appropriate to comment on (to agree or disagree).
I think any legitimate blog posts all comments. Readers want to hear all sides, don’t they?
@Suzanne,
I work with the media, and I have to tell you, I doubt this report would be any different in 2012. The issue here is that reporters, on this and many other topics, do not conduct thorough, investigative research over months or years. They are assigned or select a topic, put out a query to experts to get the information they need to report about it, write the article, and off it goes.
Consumer Reports is known for “independent and unbiased testing.” However, CR stated that this report was based on a scientific review of previous studies and clinical trials, which—as admitted by Consumer Reports—are very limited and on a short-term basis. How is that responsible? If Consumer Reports is going to slap its endorsement on something, which it is doing just by publishing the report, the information *should* be thoroughly tested and correct.
Personally, what I find most irresponsible is that the report does not clearly report on the difference between 1) symptom relief, and 2) postponing joint (and other organ) destruction. To say that NSAIDs are just as good as biologics is completely irresponsible. What about newly diagnosed patients who may stumble upon this report? There’s enough bad information out there as it is. I have Psoriatic Disease/Psoriatic Spondylitis/Psoriatic Arthritis, which is closely related to RA. I remember the pit-in-my-stomach feeling when my rheumatologist confirmed that, no, NSAIDs do NOT stop the progression of the disease. I might feel a little better, due to loading up on NSAIDs over a long period of time, but the disease could easily be marching on in the background, destroying even more of my joints. Patients need to know and understand this.
I also found the use of “Best Buy” to be, well, just terrible. They should have used “CR Recommended,” if anything at all. Like @Becky said, you would never slap that on a cancer treatment. Come on, Consumer Reports.
@Kelly, great work, as always.
The title of the article is “treating the symptoms of RA”. I’m not sure what more you expect from the data available in 2010.
I also do not think this was published in a monthly edition. It appears to be part of their Health subscription.
Carolyn, what do you mean by you “work with the media”? You state, “I work with the media, and I have to tell you, I doubt this report would be any different in 2012. The issue here is that reporters, on this and many other topics, do not conduct thorough, investigative research over months or years. They are assigned or select a topic, put out a query to experts to get the information they need to report about it, write the article, and off it goes.”
Is this how you think ALL members of the media operate? This is very unfortunate.
I handle public relations for organizations in the for-profit and non-profit sectors. I’m certainly not saying ALL journalism has gone this way. There are many examples of fantastic investigative reporting out there. However, I can’t tell you how many times I’ve sent information to a journalist—with the offer to arrange an interview with an industry expert—and later find this information printed verbatim, without the reporter contacting me or the expert at all. Blame it on the Great Recession (news outlets going belly up) and the insatiable need for online content, I suppose, but it happens far more than it should.
I was going back to footnote the CR article for another purpose and took a screenshot of this on pg. 3 of the report: “This report was published in March 2013.”
Although CR may have originally published something in 2010, the link in this post has been updated so that they are standing by this report as of March 2013
My point is even more valid today. If what CR attempted were at all legitimate, then large groups of top medical experts would not be convened every few years to issue recommendation reports like this one:
Singh JA, Furst DE, Bharat A, Curtis JR, Kavanaugh AF, Kremer JM, Moreland LW, O’Dell J, Winthrop KL, Beukelman T, et al. 2012 Update of the 2008 American College of Rheumatology Recommendations for the Use of Disease-Modifying Antirheumatic Drugs and Biologic Agents in the Treatment of Rheumatoid Arthritis. Arthritis Care Res. 2012 May; 64(5): 625–639
I was married to a Chiropractor for many years. Consumer Reports was vicious for decades in its comments about how Chiropractic was quackery and parroted the AMA’s party line until just a few years ago. Suddenly, its recommending Chiropractic as part of your health team. This article is suspect just because its from Consumer Reports.
I have really thought about this over the last day and half. First a consumer’s best buy list for treating life threatening chronic illness is absurd. What this really demonstrates is the commercialization of most medications outside the realm of cancer. It has become a powerful and lucrative business.
Unfortunately for us as patients, it is a slap in the face and again gives the general public the notion that if we only did x or y we would be fine. The picture for me unfortunately does not fit into this mold or does it appear it ever will. That is not me being negative at all. It is the reality that me and my rheumatologist are facing. The face of my disease turned life threatening and that fact alone has changed my perception on articles like these and the entire commercialization of these treatments. For the people that these drugs work for I have nothing but happiness for. But to assume that these are the end all for everyone is a grave mistake.
This community that we have all become a part of is not one of doom and gloom. It is a community of reality, support, advocation and information for those that are suffering from a complex and serious disease. And it is often due to articles and advertisements that the general public is misinformed. This is why we as patients have to have our voices heard. It is why we are frustrated, and it is why we come here, where there are others who understand, who have had success and are those like myself who are still looking for success, answers from othere and not willing to give up hope. Rolling the Stone of Sisyphus back up the hill one more time.
David
Kelly, I understand your ire at this report – the areas where they talk about NSAIDS in the same breath as DMARDS as if they were the same thing just reeks of ignorance but I think they actually did a decent job of comparing the biologics on the market for safety profiles and effectiness profiles and they did talk about lack of response in many (40%) of patients. I agree, it’s a terrible thing to have any dangerous misinformation out there, but it is true that MTX is safer than the biologics – if it works for you. This article is halfway to something we really need – an easy to understand complete discussion of treatment options so people with this disease can make good sound decisions. Consumer reports probably shouldn’t write it. And it shouldn’t contain these glaring errors. But think about having to make a decision with better comparison information that was easy to understand? NSAIDS can help pain and inflammation but don’t stop joint damage. Steroids can help with this too and there is some evidence that they do slow joint damage but they have a very dramatic side effect profile when used long term – a good discussion of this would help. A discussion of traditional DMARDS and how they compare in joint damage control and symptom relief – has anyone ever put this together? I am currently trying to decide between Humira and Enbrel and was leaning towards Humira – once every two weeks instead of once a week, but let me see – Humira gets a 50% response in 24% to 95% of users and Enbrel gets a 50% response in 49% to 100% of users? I don’t know if those numbers are accurate – based on the errors in the rest of the report – but I am sure going back out to their websites to try to puzzle out those danged ACR numbers so I can play the odds! Boy I hate those ACR numbers – are they ever misleading! Can’t you just give me a straight answer! Anyway, off topic, my point is that I think we could use an article like this – not looking for a best buy like we are buying a car – but providing solid easy to read information in one place that could help guide you through your treatment decisions and understand the medications and compare them.
“Rheumatoid arthritis is characterized by pain, swelling and inflammation of the joints.” – Suggests that all three must be present at the same time.
Good job!
I think maybe Suzanne works for consumer report….or a pharmecutical company who makes biologics or….or…or….just saying
I have been taking 15mg of Prednisone everyday since 2007….if I don’t, within 4 days I dont walk. Iam fortunate in that I do not gain weight from it at all….nor do I experience any other side effects (time will tell I suppose). I tried Metho/Plaquenil/Sulfaleazine and couldnt handle side effects. While I understand all too well the pain and fatigue of RA (my left wrist doesnt bend anymore…fused all on its own….my “common sense” has always told me to run from biologics. As far a Im concerned these drugs give desperate people a false hope….they claim to help “SLOW” the progression….not “STOP” it just slow it down..your still going to progress…just slower….we all know the stats on who it works for and eventually stops working and your on to another one…meanwhile…you now possibly have cancer, infection after infection and all the other horrible side effects that go with them….Im sorry but I have RA I dont want anything else….I realize Prednisone just masks the disease but so do alot of drugs out there I mean insulin doesnt cure diabetes but it helps them live from day to day. I think in the next five years were going to see alot of those legal commercials on TV…you know the ones…..”Have you or a loved one suffered from this RA drug?…you may be eligible for compensation”…..I cant stand the biologic commercials on tv…and there are soooooo many….everyone says to me “Oh look Karla…you should go on that”……of course there like most of the world when it comes to our disease……ignorant.
Yep Karla, ignorance.
Yes, this ‘best buy’ list for RA biologics is a load. I don’t know anyone who has an extra $4000 (+/-) lying around for a months worth of Enbrel, Humira, Remicade, etc. Let alone $40,000 for a years worth of them.
I can’t believe the complete lack of integrity displayed in this article. But, hey – it’s all about PROFIT anyway!!
American College of Physicians and Consumer Reports have announced a new collaboration to produce educational resources and videos on a variety of topics. Hmmm…Comments?
http://www.acponline.org/pressroom/high_value_care_ed_materials.htm
Re.: Consumer Reports and the “Best Buy” RA drugs
Your patience and determination in commenting on the Consumer Reports article about RA drugs are impressive and appreciated. In recent years, CR has oddly decided that a magazine designed to evaluate cars and appliances has the resources and sophistication to advise readers on every subject and product imaginable. In doing so, it has displayed increasingl incompetence and egotism. Unfortunately, as a popular magazine, it influences far too many people to ignore its misinformation. If you can convince their executives to sit down with you to learn about RA, and to write a follow-up article expressing a greater appreciation for the disease, its true effects, and treatment perspectives, you would do us all a great favor. I wish you the best of luck in your efforts.
Thanks for your invaluable work,
Harry Kluger
York, Maine
Thank you Harry. I will try. It still stuns me that they produced this garbage. As with Woman’s Day, the Wall Street Journal, USA Today, and others, it makes me doubt everything they publish now.
Kelly, thank you so much for all that you do. I honestly don’t even know how you do it, for so many reasons. I was just wondering if you sent this response to the magazine? Sadly, not that it would make much of a difference I would imagine. I am just curious if you did, what sort of response, if any did you get?
With regard to discussion above of whether Consumer Reports would stand by this story today, here is an update:
The biologics “report” is still being promoted on their website in spite of the numerous errors, and it does appear that CR stands by the story. The following page was created on Feb 21, 2013:
http://www.consumerreports.org/health/best-buy-drugs/rheumatoid_arthritis.htm
It contains a story about which 3 biologics CR recommends as a result of this report, and an error-laden video.
The fact that a magazine with the resources of CR could publish and then stand by such blatant errors makes this incidence a valuable example of media errors with regard to rheumatoid disease.
Kelly: Thanks for the energy and effort you spent on this. Consumer Reports did help clarify some of the info about biologics, and they apparently follow what appears to be the code of silence out there on how few RA people are helped. I have been through the MTX, Anakinera, Enbrel [did relieve my symptoms for 4 years], Humera, Remicade, Leflunimide, Actrema, Xeljanz, and now Orencia and Plaquenel. I am in that 30-40% who have no relief since Enbrel wore off. I am doing Minocycline per Dr Brown’s protocol, but cannot find an MD willing to dose me up with the initial splurge of Clindamycin, IV to get the kick-start.
Any news? I have seen the NYC med school has a Reumatology effort with our internal backteria, but nothing in the past year.
I am into my 11th year of rapid onset and not doing well,
Wib Smith
there has been some study of triggers in the lungs and mouth as well – but still no clear single cause to point to for this disease. Possibly, there are sub-types and likely there are multiple possible triggers – all of which make it more difficult to discover treatments that work for everyone (or a majority).
“Code of silence” is a good way to put it. There is definitely a party line.
This is a very enlightening article. Of course when it comes to media these days, they seem to think if they get 3 words in a row correct they are doing outstanding journalism. It is clear this is a misunderstood disease and the idea of a “best buy” that relates in any way to RA seems completely absurd.
I would love to see a campaign to have RA ‘s name Changed .
I haven’t figured out what would describe the wide range of symptomology that is lumped into RA.
Also Re: your stellar article on the Consumer Reports debacle ,
It seems many doctors got their training from the same sources as Consumer Reports.
I’d like to add that some doctors are taught smoking is a factor to RA.
My Rhumy asked me twice , was I sure I don’t smoke ?
I haven’t for 30 years
For me , as you noted major fatigue & a unwell feeling as if I were dieing were my most prominent symptoms.
Maybe we can call this the Zombi Disease , The Walking dead.
Thanks for all you do , Karen