For roughly half my life, I have suffered from debilitating joint pain and inflammation that left me drained, fatigued, and, eventually, struggling to walk. At first, no one knew what was wrong with me. Then I was misdiagnosed. Finally, just as I started my sophomore year in college, my doctors told me I had a severe case of rheumatoid arthritis (RA), an incurable, progressive, and ultimately crippling illness. I was forced to drop out of school for a while. For a long time I could not work full time.
That happened more than 15 years ago. Now, after three surgeries and countless medications, I am able to live what resembles a normal life. But my journey to this long-sought destination hasn’t been easy. Even though I have always had health insurance, I have nevertheless spent years battling my insurance company to get coverage for the treatments my doctors said I needed to stay as healthy as I can be.
I trust my doctors to do the right things and prescribe the medications that allow me to live with rheumatoid arthritis. My insurance companies don’t. They insist on “step therapy” instead.
Step therapy is a practice that requires patients to first try and “fail” an insurer’s preferred treatment before being able to access the therapy their own doctors have prescribed. It’s essentially an insurer’s way of saying, “We know more about drug therapy than your doctor and we need to protect you from his or her prescribing the most expensive drug first.” The insurers’ agents who make these decisions, by the way, are not always doctors.
Step therapy once delayed my ability to get effective treatment for more than a year. As a result, the debilitating effects of my disease continued to worsen while I also suffered the side effects of a drug that did not work for me.
As is common for those diagnosed with rheumatoid arthritis, I was first prescribed methotrexate. It did nothing to stop the pain, fatigue, stiffness, and swelling my RA caused, but it did make me violently ill every time I took it, gave me terrible headaches, caused my hair to fall out, and left me with a skin condition that has never been cured. Because methotrexate didn’t ease my symptoms, I was prescribed others drugs for them, including steroids to combat the inflammation caused by RA.
My condition deteriorated so much that I had to drop out of college and move in with my parents in a different state. I was then assigned a new set of insurance agents who refused to approve the medication my doctors prescribed. I had to repeat the methotrexate “failure” all over again.
It took years before I was prescribed a biologic drug that actually helped manage my disease. The toll that time lag took on my body included (but was not limited to) needing three major surgeries on my knees.
So I can sympathize with the millions of Medicare beneficiaries currently enrolled in Medicare Advantage plans who may soon face access issues of their own because of a new policy allowing plan sponsors to implement step therapy for certain Medicare Part B drugs.
It’s a bad policy, lacking even the most basic safeguards to ensure that step therapy policies are used appropriately. It also fails to provide an accessible process for patients to get an exception to step therapy when their doctors deem it necessary.
Insurers use step therapy as a way to control costs. Requiring patients to first try alternative (meaning cheaper) therapies, they argue, cuts down on unnecessary treatments and helps lower premiums. But that line of thinking doesn’t acknowledge that no two patients are alike and that each person’s body responds to treatment in different ways. That’s why treatment must be carefully tailored to a patient’s individual conditions and needs.
Patients with rheumatoid arthritis, for example, often must try multiple drugs before finding the one that works best for them. While this trial-and-error process has long been part of health care, and is often unavoidable, step therapy unnecessarily draws out the process by forcing patients to try drugs their doctors already know will not be effective. And while patients are trying these ineffective drugs, they suffer. This can even cause permanent damage. For those of us with rheumatoid arthritis, as I can personally attest, this policy can mean irreparable joint damage.
The delays caused by step therapy, not to mention other insurance practices such as prior authorization, have forced me to make hard choices about how to get the treatment I need. I’ve split pills and rationed medications, sometimes skipping doses for a day or two. My family and I have spent hours on the phone with insurance companies — once for nearly eight hours straight — trying to get them to reverse their repeated rejections of my rheumatologist’s recommendations. My doctors have written countless formal letters on my behalf and made countless phone calls to my insurance providers. All the while, my condition worsened. For prolonged periods of time I struggled to walk because my knees were so swollen. I had to wear braces on both of my wrists. I even feared I was going to have to leave my job because the pain, fatigue, and physical restrictions were becoming so severe that I did not think I could continue to be productive.
I am not alone in my struggle with step therapy. According to a survey from the Arthritis Foundation, for which I am an advocate, more than half of all patients reported having to try two or more different drugs because of step therapy before getting the one their doctor had originally prescribed. And, like me, nearly a quarter of them had to repeat step therapy when they switched insurance plans.
In short, step therapy undermines doctors’ professional and clinical judgments in the name of protecting insurance company profits and at the expense of their patients.
Congress needs to step in and ask the Centers for Medicare and Medicaid Services to remove this dangerous policy from Medicare. I join a broad coalition of patients and health care providers in urging Congress to pressure the Trump administration to rescind this policy and ensure adequate guardrails are in place to protect patients from insurers’ overzealous use of practices like step therapy, which are designed to bolster their bottom lines at the expense of people in need of effective medical care — the people they’re meant to serve.
Elizabeth Krempley is a patient advocate for the Arthritis Foundation.
There is a new Congress coming to Washington in January. They will be ethnically diverse and I hope they will be sympathetic and try to reverse this dangerous. They must be made aware and take steps to change this
Hey Dave,
Your quote is proverbial:
“ I will finish by quoting Galen (Claudius Galenus), many centuries ago:” All those who drink of this remedy will be cured, except those who die; therefore, this medicine is effective for all, except for the incurable”.
Where pharmaceutical (medical/scientific) research and by-product drugs/therapies are tested and applicable to selective patient cohorts; it mirrors it when equally distributed over large segments global populations, and individuals, creating parallel statistical effect results.
So EG & Kira are so right on multi party involvement and impact to patient and Medical Profession.
Why do we wonder about Insurance and health stepped prescription process? All systems involved are following same strategy approach until death do all apart.
So it is a good system until it is not and I have experienced it’s impact in many forms and ways.
The stepped drug prescription effect for a non-genetic non-self inflicted, sustein injury, rather than a disease could also be fatal. The general public is not knowledgeable of all such a pre-processes and impact results. “A drug epidemic”, is only one impact of many in our times. based on statistical significance, used within(clinical study) and outside (stepped Rex-prescribed) has decimated a generation in pain.
FDA has taken some measurements lately, to mitigate enabling unapproved drug (at end of life drug) use also; which is an opposite type issue and they by-polar opose each other.
I was glad to see Dave’s response, because I had the same reaction to this article. I am not a doctor, but I’m an RA patient (10 years) with a lot of professional experience in how drugs are tested and brought to market. I am also Canadian, so I have a slightly different perspective based on our different medical system. Many Americans don’t know that although our health care is covered in Canada, there is no national prescription coverage. That said, I am lucky to live in a province with a provincial pharmacare program, which covers the cost of prescription medications once you hit an annual deductible. (I am also lucky to have dual-coverage work insurance, so I don’t even pay that deductible out of pocket.) When I was first diagnosed, pharmacare did require me to go through a 3-step process before I could start biologics. I can’t remember exactly, but I believe it was something like plaquenil, then sulfasalazine, and then methotrexate. I know I needed to be on SC mtx for a minimum time (3 months?) at a minimum dose (15 mg?), before I’d be approved to move to biologics. Although the author seems to think this is a travesty, I see it as responsible use of health care dollars. These drugs, mtx in particular, work extremely well for a lot of people and cost many-fold less than biologics. I don’t think it’s unreasonable to ask people to at least try them before moving on to $25K+ per year medications. Yes, some people will find the side effects intolerable, but this is not true for everyone. My side effects on mtx have never been terrible – unpleasant, yes, but absolutely manageable. I went off it for a while when starting my newest DMARD (Xeljanz – not a biologic but just as expensive!), but my rheumatologist and I eventually decided to add mtx back because it really does help. Many people get terrified by the horror stories and refuse to try mtx, but there’s a reason it’s still considered gold standard. It works, with manageable side effects, for a lot of people.
It’s really important to have a rheumatologist you can speak with openly, and who listens to your concerns and asks the right questions. And I absolutely agree that 2 years of misery being forced to stay on a medication that isn’t working for you, while your disease continues to progress, is totally unacceptable. It’s essential that patients are followed closely to make sure disease progression is being slowed or halted, to prevent permanent damage. (And much of that has to do with being diagnosed in a timely matter – which is a different topic altogether.) But until we have better predictors of what drugs will work for which people, asking people try the cheaper ones first is not an unreasonable request.
Thank you, Jen.
It’s good to see rational practicality hasn’t been completely lost these days. In grade school economics we were taught two basic principles: money makes the world go ‘round and there’s no such thing as a free lunch. Translation, any practical effort needs to be sustainable and cannot rely on funds donated from other sources. These principles I carry with me and apply to my work today on a daily basis despite learning over twenty years ago.
I like your statement: “It’s really important to have a rheumatologist you can speak with openly, and who listens to your concerns and asks the right questions.” This is so very true. Nothing gets most people to remain quiet quicker than to always shout at or condescend to them (luckily for me I’m not like most people in that way). When physicians depend on the information they get from their patients to do their job in the best ways possible, how is it so many default to dictation instead of learning? As EB was quick to demonstrate, he clearly sees himself as the authority and alternative perspectives are quickly assaulted. Not at a single point did he even enquire as to what my education, experience, and knowledge were because he immediately assumes (and states his assumption explicitly) it’s inferior to his own.
I’ve got a PhD in molecular medicine. I’ve spent nearly a decade studying cell signaling pathways and drug mechanisms of action. I have access to millions of health records and some seriously cutting-edge big-data analytic tools. I can see what happens, estimate causes, and anticipate outcomes. I can see that very little due diligence is performed clinically, largely because physicians currently lack the tools to do so and also because personalized medicine is expensive. There is a probability very close to zero that EB is performing synovial biopsies on his patient’s joints, performing cellular and cytokine analysis on the samples, comparing samples before and after treatment, and determining exactly what the etiological factors for the RA inflammation are to declare only he “knows what is best and what his patients need” for success. He likely runs the same labs as everyone else, relies on CRP or ESR to demonstrate general systemic inflammatory load, does a TJC and SJC, and might even use an MDHAQ or similar global assessment. How does he truly know TNFi is necessary? Does he actually know why a patient fails to respond to methotrexate or hydroxychloroquine? Does he care as much as he pretends? It’s hard to say; he only spends 8 minutes with a patient because he is concerned about making money himself. The majority of people don’t have the expertise to know how to ask very probing questions and, if their physicians are anything like EB, I can appreciate the possibility they probably just defer until they can Google something privately.
EB is probably right about one thing though, the best and brightest aren’t flocking to medicine anymore. The traditional MD training programs can’t keep up with demand and a heck of a lot more money can be made in booming technology sectors without the need for 4 years medical school, 3 years for an internal medicine residency, and a 2-year subspecialty fellowship just to get someone to thoughtfully consider your perspectives.
Anyway, I’ll part with this: Jen, some of us are working really hard to find a way to radically change the RA care paradigms for the better. Yes, there are a lot of barriers, but telling your story is the best way we can learn. Get it out there, somewhere, if it isn’t already. We will find it and use it to help everyone.
Dave
Dear Dave, I suspected you were in basic science research or a related field. That is excellent. Your research work is laudable and admirable. I respect it. However, how does that relate to the clinical work busy rheumatologists do in the clinic? I don’t think it does. We work based on state of the art clinical guidelines and what we know at the moment, in 2018. That’s all we can do. For example, injecting arsenic was cutting edge research 200 years ago to treat syphilis. And when did I say anything about trying low dose MTX, e.g., 7.5 mg for just a few weeks, and then jumping quickly to an expensive biologic? I never said any such thing. My point has been that clinical rheumatologists know best about the patient, and that when we want to escalate treatment as we should once the patient does not respond to MTX, Arava, SSZ, or Plaquenil, etc., that our opinion should be respected, not maligned by insurance companies and the like. I am a patient advocate. Enforcing step therapy helps only the insurance company bottom line, not the patient. Our current healthcare system values only metrics, often imperfect, as opposed to common sense, wisdom, and experience. Medicine is science but also an art. It is great that you are doing synovial biopsies and working in intracellular signals. Again, clinically, we are not there yet. Someday we will be, hopefully. At the moment we clinicians don’t have a phenotypic profile just yet to know if a patient’s RA will respond to TNFa inhibition, or another cytokine, e.g., IL-1, or IL-6 or an yet to be discovered kinase or some other pathway. That’s fine. These are not reasons to hold grudges against medicine and its practitioners, and offend and criticize the work of busy and hard-working clinicians. Your other assumptions are wrong as well. I am not in private practice. I am a tenured professor, division director, and program director of a fellowship training program. I see patients only with medical students, residents, and fellows, scheduling no more than 7 patients daily so I can offer the best care I can. I am on a fixed salary, regardless of whether I see 2 or 7 patients daily. However, I recognize and lament the obstacles, hurdles, and daily problems facing rheumatologists on a daily basis, which greatly interfere with our patient care. Step therapy is just one example. I am also the director of a research lab; however, first and foremost, I am a clinician, thinking always in terms of the patients’ best interest. Counting textbook chapters and articles, I have more than 100 publications. For several years I have been elected in the top 10% of America’s physicians. Do you think I would have some authority to emit opinions about the clinical treatment of RA? I care about patients and the future of medicine more so than how many more millions a company’s CEO will make this year. I will be retiring in 1-2 years, or at least slowing down some, and I feel sorry for recent graduates for the world they will inherit. I stand firmly and unequivocally by all the three pieces I wrote in this blog. Read them again, if you will, to get the entire picture of what I am saying. I will finish by quoting Galen (Claudius Galenus), many centuries ago:” All those who drink of this remedy will be cured, except those who die; therefore, this medicine is effective for all, except for the incurable”,
Dear Dave, the medical profession is being destroyed by corporate types, insurance companies, and third party players. We are inundated and overwhelmed with non-sensical and totally impractical and overburdening rules and regulations. Patients see all this, no doubt. What once was a noble and independent profession is rapidly being lost. It is a shame. Who would like to get him/herself into this type of crazy situation? Our young, best and brightest will go into any other field but medicine in the future, given the current poor practice climate. Physicians are retiring at a record pace, while the rate of burnout is also affecting at least 50% of the profession. Fifty percent of the practicing rheumatologists in this country are over the age of 50. The result? Completely mediocre medical care in the not too distant future. Then, you will see what it really is to render substandard medical care. I want to be stereotypical, and I want to stand up for what I believe. I envision a revolution in our profession in the near future, unless something changes, and radically. Physicians should be left to do what they do best, evaluate and treat patients. As I said before, if anybody disagrees and/or bitterly criticizes, please come to the clinic, and we will schedule 10 patients in half a day for you to see and treat, average 8 minutes per patient encounter in order to make ends meet due to poor reimbursement patterns, courtesy of our insurance companies and Medicare. Face treatment denials and rejections right and left. Witness the frustration that patients develop in this process besides not being able to afford needed medications. And then try to implement your benchmarks in the ensuing chaos. It is easy to pontificate from a high chair. I can say a lot more but won’t at this point. Good luck in your teaching people on how to treat RA,
Of course; insurance companies care only about making money; they don’t care at all about patients or their physicians; what else is new? Their CEOs are raking in millions of dollars while denying needed treatment to their insured patients. This problem has been with us for several decades. Is it really ethical to profit from people’s illnesses and misery? Insurance companies should exist to help patients with medical problems, not profit from their suffering!
Your story took place 15 years ago when Enbrel was new, and I think everyone was put through those “steps”. What is the step/ladder now for the auto-immunes?
I should add that some other new biologicals introduced at about that time – turned out to be horrible and were quickly removed from the market (Amevive comes to mind).
Even today we have the issue of brand-name versus generic, and I’m sure the brand-names tend to be better made – often at 5x the cost. But just think of the non-cost issues that raises!
Thank you, Elizabeth, for sharing your opinion. RA is indeed a very enigmatic disease and it causes many persons significant distress in addition to the progressive disability. As someone that has family and coworkers affected by this disease, I am empathetic to your situation.
Unfortunately, I don’t agree with many premises to your argument and you (like many others I’ve met) seem to merely echo the sentiments from one side of the argument: if only insurance companies would just pay for what we (doctors) want to do, you would be so much better off. Except insurance companies do pay for a large number of people (AbbVie posts $17 Billion in global sales of Humira in 2017 alone; more than 50% of the global biologics market is owned by the US; who do you think paid for these?), and just like the clinical trials in which the biologics are compared to methotrexate as monotherapies, the collective data do not support the conclusion that biologics are significantly superior to methotrexate, especially when costs are considered. The real kicker here is that many QALY analyses weren’t even performed by US insurance companies, they were performed by National payors in multiple countries with socialized healthcare programs (e.g. Canada, UK, Italy, Belgium, Netherlands) at thresholds equivalent to $30, $50, or even $100 thousand US dollars. The current EULAR and ACR guidelines take these studies into account when recommending the use of conventional synthetic DMARDs, primarily methotrexate, as a first-line therapy to treat RA.
So what we ultimately have is a scenario where: for some a certain drug works, for some it doesn’t, and for the many it sort of works but not completely and not forever. And, when you have your customers constantly mad about how much premiums cost because 1% of the US population has a disease in which really expensive medications are available without any guarantees they will work or refunds if they don’t, you have to figure out ways to keep things manageable (yes, even if it’s a government healthcare system—try to get Humira as a first-line therapy in the UK and see what they say). Furthermore, this doesn’t even begin to address the topic of patient adherence which you eloquently described: “I’ve split pills and rationed medications, sometimes skipping doses for a day or two.” The whole concept of “taking just part of my drug regimen is better than not taking any at all” is completely bogus. Even before the large clinical trials in which drugs might get FDA approval, several studies evaluating the pharmacodynamics and pharmacokinetics of these drugs are performed to ensure the patients are administered an effective and safe dose for trial. Translation: failure to take this effective dose either means it isn’t available in your body at a concentration or for a necessary duration to be effective. Splitting a dose or skipping doses is akin to not taking the drug at all, so instead of taking half of your regimen, you took nothing. Now, let’s get to the other juicy bits of your opinion…
[At first, no one knew what was wrong with me. Then I was misdiagnosed. Finally…my doctors told me I had a severe case of rheumatoid arthritis (RA), an incurable, progressive, and ultimately crippling illness.
I trust my doctors to do the right things and prescribe the medications that allow me to live with rheumatoid arthritis. My insurance companies don’t. They insist on “step therapy” instead.]
I understand primary care providers have little idea what to look for with RA, and my guess is that it took you a couple years before you were actually referred to a rheumatologist and diagnosed, but I always find it odd that you still trust doctors and vehemently deny trust to insurance companies, even though they also employ and consult with doctors—specifically for this exercise, rheumatologists.
“That happened more than 15 years ago.”
A lot has changed in 15 years. Without knowing more details about your specific case, I’ll refrain from challenging your entire argument based on your anecdotal experience as being largely irrelevant.
“Step therapy is a practice that requires patients to first try and “fail” an insurer’s preferred treatment before being able to access the therapy their own doctors have prescribed.”
The preference for the treatment isn’t determined by the Insurance Company, its written in the EULAR and ACR guidelines as recommendations for first-line and second-line options. For many reasons, methotrexate monotherapy is recommended because it’s largely equivalent to biologic monotherapy at 5-10% the cost (compare a year of MTX at $300 versus a year of Remicade at $30,000 or Humira at $60,000). Don’t believe me on the efficacy bit because of your personal experiences? Look at the clinical trials that actually included a component of a biologic monotherapy (Humira, Remicade, Enbrel, Orencia, Rituxan, Simponi, Kineret) versus methotrexate monotherapy or a combination of a biologic with methotrexate versus Triple Therapy (methotrexate, sulfasalazine and hydroxychloroquine) with glucocorticoid bridge therapy. Trials: TEAR, BeSt, AVERT, IMPROVED, Enbrel ERA, PREMIER, etc. However, admittedly, biologics in combination with methotrexate do consistently improve rates of low disease activity (LDA) and remission versus either therapy alone (but that wasn’t your argument).
“Step therapy once delayed my ability to get effective treatment for more than a year.”
How long did “your doctors not knowing what was going on and eventually misdiagnosing you” delay your ability to get effective treatment? It’s general knowledge that the majority of joint deformation and bone erosions occur quickly, usually within two years of symptoms. These are permanent and contribute cumulatively to worse DAS, CDAI, and SDAI scores.
“…exception to step therapy when their doctors deem it necessary.”
“That’s why treatment must be carefully tailored to a patient’s individual conditions and needs.”
“…forcing patients to try drugs their doctors already know will not be effective.”
These I had to group together because your argument lacks the context I need to ascertain at which point you believe your doctors ‘know’ these things and, while I agree that RA treatment needs to be personalized, we currently lack the companion diagnostics to do so. It is impossible to know beforehand whether a drug will be effective.
I could carry on a long time about this—it’s a complicated issue that cannot be distilled simply to “it’s the fault of the insurance company.” There are several other aspects to RA diagnosis, treatment, and long-term management that go beyond your opinion piece here, as well as my personal gripes as to how RA clinical trials are virtually incomparable to one another for a litany of reasons (baseline characteristics, treatment dosing/duration, duration of follow-up, phenotypic variance) and how so many clinical trials that have concluded far longer than 1 year ago (a deadline set by the FDA) have yet to publish any results. Anyway, keep fighting the good fight young RA warrior.
Pardon my epic arithmetic failure: $300 for methotrexate is 0.5-1% the cost of the biologics.
She split and skipped doses because I’d the COST, not because she was trying to subvert the prescription. Many many people have to do this, sadly.
Yes, of course it was because of the cost. That’s the obvious bit. Apparently, the non-obvious bit is that by doing so she effectively renders two prescriptions useless: the one she paid for and split the doses of and the one she didn’t pay for and didn’t take.
Dave, you know the metrics and the drug trials; however, I doubt you treat patients with RA. Insurance companies are basically practicing medicine without a license, regardless of the ACR/EULAR guidelines. The treating rheumatologist is the only party who knows best what the patient needs. I am a rheumatologist, and encounter these rejections and treatment denials on a daily basis on the part of insurance companies, forcing us to spend hours and hours of our time and the nurses’ with letters, appeals, pre-authorizations, etc. The AMA and the ACR are 2 organizations completely against step therapy. Of course we always start with MTX and Plaquenil. When we start prescribing the biologics is because on our clinical judgment the patients needs to escalate treatment. The most ridiculous statements is “fail the insurer’s preferred treatment”. You know, I am the doctor. I care about my patient. Who cares about the insurer’s preferred treatment? The only reason they do this is to make money for the company, not because they care about the patient (paying regularly his/her premium). If you care about the insurer’s preferred treatment, then have an insurance representative come to my examining room to treat the patient. And they should take the liability as well, if something goes wrong. As a practicing rheumatologist, I don’t care about an insurance company or anybody not seeing RA patients trying to lecture me on how to treat RA.
Hey EG, nice to meet you. Below are my responses to your quoted text.
“The treating rheumatologist is the only party who knows best what the patient needs.”
I agree entirely, unfortunately this is a statement of relatively with poor benchmarks. In RA specifically, we are severely lacking tools to support clinical decisions on an individual-patient basis. So much work needs to be done here and it starts on the primary care level.
“Of course we always start with MTX and Plaquenil.”
For the most part (90%), this is true. However, there is also much room for improvement in the MTX space, particularly related to how much MTX to prescribe from the start and whether rapid titration to a maximum tolerable dose (2 years) for their patients are very similar highlighting the overall fact that the drugs currently available to treat RA don’t actually get at the underlying disease factors, they just treat symptoms.
So what’s the solution? Continually throwing good money after bad or really doing the hard work to figure out exactly what is the problem for every patient that comes through those doors? I can tell you which of those options is widely selected by the only party that knows best what the patient needs.
Something happened during copy+paste, lost the majority of my response. Oh well, sorry EG.
Dear Dave, it is nice too meet you too.
We don’t treat robots or benchmarks, rather unique and individual patients with RA. How do we know the patients is not doing well despite MTX or similar older DMARD? If many joints are swollen, reddish, tender, with morning stiffness lasting 2 hours and an elevated CRP, in the face of seropositivity, that patient needs better treatment. As simple as that. Primary care is totally clueless. They cannot diagnose RA, much less treat it. They never will. It requires a rheumatologist to appropriately diagnose and treat RA. All opinion leaders in rheumatology would agree with me on this, and would vehemently disagree with you on your statements. Pushing MTX for 2 years in a patient not responding to it, means malpractice in this day and age. MTX and the other DMARDS, including biologics don’t just treat symptoms, they have the capacity to alter the natural course of the disease. You emit a few abstract and idealistic principles, and that’s fine. However, we practice in the reality of every day medicine, and when we see a patient not doing well, and not responding to her current treatment, we need to be able to treat that patient with better therapies, without interference from third parties. If clueless bureaucrats, administrators, other non-medical agents, etc., want to opine meaningfully on how to treat RA, they should go to medical school first, do a 3 year residency in internal medicine, and then a 2 year fellowship in rheumatology. Here, I only listen to people who have skin in the game, i.e., practicing rheumatologists with experience, compassion, and an excellent fund of knowledge. These are the people I listen to. Need I say more?
Hey EG,
On my phone, will keep this short. I don’t advocate pushing MTX for two years for someone not responding to it, but by six months you should have at least learned why the patient hasn’t responded. If it’s a metabolism issue, i.e. lack of polyglutamated forms, that’s a different issue than someone merely ‘failing’ three months of 7.5 mg oral where increased dosing or subcutaneous options should be tried. If the patient is metabolising the MTX appropriately and it’s simply insufficient to treat the RA, then yes, I’m inclined to agree that biologics are a great option here provided the MTX is not discontinued. Get the patient to a low disease activity, taper the biologics and see if continued MTX is sufficient maintenance therapy, potentially also tapered over time. I wholly disagree that biologics should be given as monotherapy, the risks of primary and secondary failure are too high. The real world data detailing outcomes over 2 year and longer periods of time really puts this into perspective. Seeing people do three months of MTX then jump straight to Enbrel only to then go on Humira six months later and fail that within a year is frustrating. Hearing the arrogance from physicians declaring no one else is better than them is maddening. They seem to think that if a patient fails it’s because insurance wouldn’t give the right drug on day one, or because it’s just the natural progression of the disease despite the best care possible, never that they didn’t take the time to really do more proactively in the critical first months of treatment, likely knowing full-well the patient should have been treated a year sooner.
PS what’s the deal with letting patients go a year or longer without starting even a csDMARD. Not calling you out, specifically, but not all rheumatologists seem to be the effective doctors they believe themselves to be. Giving a newly diagnosed patient a pamphlet on their way out the door let’s people like Elizabeth here really not appreciate the importance of proper adherence until years later when they start writing biased opinion pieces.
PSS you don’t need to be so angry and condescending all the time, either. It’s just so stereotypical.
It is pathetic that lay-people get to overturn the opinion of educated professional Medical Doctors. A country that meddles with such role reversal (from federal level all the way down) deserves a label such as “Third World”. Or Fourth? Even in tribal societies the members take better care of one another, heeding the Medicine Man. Seems insurances are now assuming a role that they have not earned, nor have rights to.
Lay people? You think government agencies and insurance companies only employ lay people? Wrong. Even within the field of rheumatology there are several contentions regarding what is the most appropriate course of action for patients as a whole and individually. Just because one doctor, specialist or primary care, believes something doesn’t mean that same belief is even held by his or her peers. Read up some personal testimonies of RA patients that have spent years bouncing between doctors until they finally find one that listens to them and treats them like a human being, putting the patient interests ahead of the doctor’s ego. It’s a ridiculous world and there are plenty of anecdotes that mirror Elizabeth’s story but for vastly different reasons.
Kira, I am a practicing rheumatologist, and I completely agree with you,