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