Significant Numbers of RA Patients Don’t Receive Recommended Care | Rheumatoid Arthritis Warrior

Significant Numbers of RA Patients Don’t Receive Recommended Care

Understanding the reality of the disease is only half the battle

sign in cabWe are making progress. Although there’s still a long way to go, patients are playing a part of advancements toward more complete understanding of Rheumatoid Arthritis as a disease. We might suppose that once RA is more widely understood to be a systemic disease, it will be treated as such with various needs of patients (some listed below) being addressed.

At that point, we might think things will promptly fall into place. But we’d be wrong if we assumed that.

We will accomplish these goals, and the new Rheumatoid Patient Foundation will work to achieve them. However, improving medical care depends on other factors beside patients’ needs being known. E-patient Dave’s post (with cool slide show) shows one reason that information might not always be enough to create change.

Study shows patients with more active RA receive less adequate care

Look what investigators found recently regarding whether the 2008 American College of Rheumatology (ACR) treatment recommendations for RA made a difference: “Publication of the recommendations did not significantly change treatment patterns for those with active disease… Substantial numbers of RA patients with active disease did not receive care consistent with the current ACR treatment recommendations. Innovative approaches to improve care are necessary” (Prescribing practices in a US cohort of rheumatoid arthritis patients before and after publication of the American College of Rheumatology treatment recommendations).

But there’s more. The study of 1632 U.S. patients also found that the care was more consistent with recommendations in patients with low disease activity. In each group, it was the patients with poor prognosis indicators who were not receiving care consistent with recommendations.

I was stunned when I read Medscape writer Janis Kelly’s description of why: “They suggest that a contributing factor might be lack of awareness of the patient’s disease activity at the time of the visit” (RA Treatment Still Lagging Behind ACR Recommendations). Stunned only because this is something I’ve written and said so many times. Yes, problems in RA treatment are becoming apparent, even to the medical community.

New 2012 RA treatment recommendations may not take effect for years

Finally, this month, the ACR updated those 2008 recommendations for treatment of RA with DMARDs and Biologics. It seems more comprehensive and more aggressive, a good step. Yet, we have to ask how much it will help patients since “more than half of patients with RA who have moderately or highly active disease still do not receive care consistent with the guidelines, mostly because they are undertreated” and treatment recommendations tend to “typically require 17 years to affect routine patient care” (Medscape).

What do you think can be done to reduce the 17 years? How can we move the ball farther in this decade? This will be the mission of patients.

Footnote:

Some needs of RA patients

  • Monitoring and treatment even for non-joint aspects of the disease (Comprehensive RA care)
  • Extensive range of therapies to preserve use of joints.
  • Broad information about the disease and treatments for newly diagnosed patients
  • Better accommodations to keep people working as long as possible
  • More research leading to better treatments and a cure
  • Improved access to disability assistance

 Recommended reading

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

24 thoughts on “Significant Numbers of RA Patients Don’t Receive Recommended Care

  • April 30, 2012 at 9:03 am
    Permalink

    I have always been a pretty tough lady but RA is a pretty tough disease.I think that I have learned to cope, adjust my sails etc. then find some new level of pain or frustration. The key for me is balance but it can be hard to achieve. I do wish that there was more understanding & better treatment available…especially for people younger than I am. It is a disease that would do well with a much more wholistic approach. My diagnosis was a long time in coming…easy to think it’s just you. 🙂 I hope that there will be many advancements in diagnosis & treatment in the coming years.

    Reply
  • April 30, 2012 at 5:21 pm
    Permalink

    I think a big change that needs to be made in regards to aggressive treatment is the treatment of those of us who have seronegative RA. I’ve been syptomatic for >5 years, and the only medications I’ve been treated with are NSAID’s, prednisone bursts, and a few very short courses of sulfasalazine. I’ve been told that since my bloodwork doesn’t scream “RA” that it’s better to leave it untreated than take drugs that might have risky side effects. I’m 19 years old, and getting progressively more disabled every day. I think that there’s a widespread misunderstanding in rheumatology that seronegative means that the disease is not active or doing any harm. If my rheumy could spend one day in my body, maybe his perception of “no harm” would change…

    Reply
    • May 1, 2012 at 3:04 am
      Permalink

      I agree with you. Boy, have I fought for treatment! I am on my third rheumatologist. She knew from day one I was fighting for treatment and that is why I was there. She said she would do something the other two wouldn’t. Let me try methotrexate as a trial. It helped! But in no time at all I max out on it and I am going to add humira. I am stil having to beg for vectra DA test, but I am further along than I thought I could get; I am being treated. Things you can try. Ask for a trial run of a med. Document any changes. Try a different rheumatologist and ask them for a trial med. Ask for the Vectra DA test. What area are you in? Maybe another RA warrior can suggest someone to try.

      Reply
  • April 30, 2012 at 6:39 pm
    Permalink

    I just found this website blog today and had to comment. I believe that patients don’t receive recommended care because so many of their symptoms or conditions have been diagnosed separately (or misdiagnosed), that they are skeptical at first of this diagnosis and subsequent recommended treatment.

    I have several health conditions which are being treated separately.For years I have complained about a cough, hoarsness, lump in my throat and occasional voice loss. After numerous doctors’ visits and numerous tests, it was determined that they were caused by a combination of asthma and a swallowing condition. After learning from one of the blogs on this site that RA causes voicebox problems, I’m now wondering if all of my symptoms were really a manifestation of RA. By the way, I only got diagnosed with RA about 5 months ago, even though I think my symptoms started around 10 years ago. Primary Care Doctors are not schooled to recognize seemingly unrelated symptoms as possibly RA symptoms. Both doctors and patients need to be better informed.

    Reply
  • April 30, 2012 at 9:41 pm
    Permalink

    I read this and am not surprised. I have a very physical job, and was pain free while on mtx for 7 full months doing all my usual routine untill a flare this week that started in my shoulder and went to my knees that advil wont touch. Unbelievable pain, couldnt sleep, had to sit up every hour on the edge of the bed to alleviate it. It was a relief to wake up. Yet when I spoke to my dr. today about a pred burst to knock it down, the first question out of his mouth was how long the morning stiffness lasts. Umm, never had it much really, and the morning was a relief for me cause I didnt have to lie there in pain anymore. The question, for me, was so out of place/context. Also, we spoke about going on biologics if my xrays show erosion progression. Well, I have had hand and feet xrays, but my major problem is in the shoulders and knees,and I have not had xrays on those, so how will they know?? I asked him, he was flummoxed by that question, said it is hard to tell erosion on the shoulders and knees. Well?? I actually dont have health insurance, so under a free program I see a second year fellow at a teaching instution with an attending full rheum doc once in a while. I like the young guy, he listens, he’s nice, he’s funny, but absolutely can’t think outside the box. It’s the teaching they recieved I think. At least I gave him a run for his money on the way he thinks about things… Keeps telling me I’m atypical.

    Reply
    • May 1, 2012 at 3:18 am
      Permalink

      They can’t think outside the test books! One of the top docs in Sacramento (which is a drive for me) told me I can not get damage without swelling. On here, many reply, yes you can and some have. He refused to put me on anything without swelling. My current doc doesn’t think my swelling that she has seen counts, so I guess I would have still been waiting. It doesn’t sound like you have other choices. 🙁 What about bringing in factual stuff to educate? I was told that since my hands, feet show no erosion (but I do have calcification on one heel and that can be connected to RA) that I have nothing systemic. Without even thinking I blurted out, “Are you sure?” Doc hesitated and said something like well, you probably don’t. Good for you challenging your doc. What about the vectra DA test? They have assistance for it. Would he agree to a trial? If a biologic helps, stay on it. If it doesn’t, he takes you off of it. Course that is tricky because not every med works for every person. I was nervous as heck when I was put on mtx as a trial because if it didn’t work, I would be without anything. Thankfully it worked! I wish it lasted longer for me though (6 months and then maxed out and not enough benefit). Of course if I went off of it I would get worse.

      Reply
  • May 1, 2012 at 10:41 am
    Permalink

    Wow, thanks for this post Kelly, and everyone’s great responses. I was finally diagnosed with RA in 2010, and getting care that meets my needs has been next to impossible. In this short time, I’m on the second Rheumatologist, and the second Biologic medicine (after failing Humira). While I appear to be doing better by the test numbers, my pain, fevers, sleep, brain fog have increased at least four-fold since starting treatment. At every rheumatologist visit, I’m told that I’m too heavy (no duh, the meds are making me gain exponentially) and that’s why I’m in such pain. He looks at my joints, doesn’t see any obvious swelling, tells me he’s cutting my prednisone dose by half. And the pain spikes and I end up doing five day steroid packs to get it back down. Last time he told me I was depressed—and who wouldn’t be when I am suddenly without a career due to this disease AND my own doctor isn’t helping me at all. Like MJ said—I have no health insurance and only receive care via an assistance program. They only took x-rays for hands and feet, meanwhile my knees are huge and my shoulders keep me from sleeping at night. This is the first time in my life I have been without insurance (because I cannot work) and I must say that I’ve been treated horribly by doctors when they see my lack of coverage. It’s like they rush through every visit so they don’t waste valuable resources on me. Perhaps I’m just bitter, but I don’t think so.I had a physical job, I worked in the landscape/nursery industry. And almost overnight, I’m disabled. I think I’ve got a lot of reasons to feel bummed out, frustrated, and helpless. What is wrong with our health care system in this country? Why are patients being failed by these providers and our health being slowly destroyed as a result?

    Reply
    • May 1, 2012 at 9:24 pm
      Permalink

      same experience Jackie, and I’m in the same profession. Pushing through the spring at the moment, thankfully I have a couple good employess that were able to cover the heavy stuff the last few days. It just sucks, I wish doctors would just listen, and if they don’t have answer, at least don’t make something up, like tell me that nothing definitive can be told from shoulder and knee xrays. Someone must know something concrete, it’s freaking science for cripes sakes! Why else are they paying 300k for school and then making 300k after?? I’m just so sick of this casual mentality when it comes to someones job. I don’t act like that, but I sure seem to encounter it everywhere these days.

      Reply
  • May 1, 2012 at 11:38 am
    Permalink

    I do not get the care i need with state insurance no rheummys within 100 miles of me who take the insurance. it just sucks i have to see a gp who knows near to nothing about RA to treat me and my son.. who is 16 years old. we deserve better..

    Reply
  • May 1, 2012 at 1:29 pm
    Permalink

    The needs list on this post is so accurate I want to keep working but the end is getting closer and closer. I like so many others would really like to find a treatment that provided results that wasn’t just steroids and pain meds. I have a great doctor especially compared to the majority but there are just not enough options out there. The thought of getting off the steroids and recongnizing the face in the mirror as mine would be amazing. 17 years is a depressing thought but this blog and getting the word out will decrease that. Thank you Kelly for this post and all your others.

    Reply
  • May 1, 2012 at 6:44 pm
    Permalink

    I have no insurance at all. Not officially diagnosed yet, second rheumy appt next week.

    Reply
  • May 4, 2012 at 8:45 am
    Permalink

    Wonderful article. Can’t type too much because of my fingers. Thanks for trying to get the word out. it helps to not feel so alone sometimes with this disease.

    Reply
  • May 4, 2012 at 12:39 pm
    Permalink

    This is a great post Kelly, I am in Vancouver, BC, Canada – I am considered early diagnosis and I guess I am fortunate in that my rheumy is being aggressive and from day one, which has only been three months, that I am being treated with DMARDS and Biologics … I was unaware that this was not the protocol everywhere, but have learned through reading posts, that for some people, they are not getting this type of aggressive treatment. In my area, we also have a program for Rapid Access for Early Diagnosis for RA, however, the way our health care system works, that was 2 months for me to get into see a rheumatologist, which was a very painful 2 months, and at one point I landed in the Emergency Room and was able to see the rheumy on call at the hospital, who started me on prednisone to get me through the 2 weeks until I saw my specialist ….

    Reply
  • May 10, 2012 at 4:21 pm
    Permalink

    This Comment is in response and agreement to Megan Elaine response, “I think a big change that needs to be made in regards to aggressive treatment is the treatment of those of us who have seronegative RA. I’ve been syptomatic for >5 years, and the only medications I’ve been treated with are NSAID’s”..My doctor here in Sault Ste. Marie, Ontario refuses to give out anything but NSAID’s. Then she tries to put me on past medications that I have bad side effects to. Now I am without a doctor, because shes a quack, and needs to go back to school, because of all the things that she says RA cannot have….I wish I could prove her wrong, that or I wish there was more than one RA doc here, with a population of 75,000 ppl. Im moving to AB, Ontario soon and hope to get a proper RA doctor in Calgary,Ontario. Does anyone have any recommendations? Ones with a Muscular Skeleton Ultrasound machine, and one that has a great bed side manner?? Im getting worse and all i have are IBProfens for pain.

    Reply
    • May 11, 2012 at 12:40 pm
      Permalink

      I’m so sorry to hear that, Rosy. I hear that a lot & it’s very sad. Don’t give up. Can anyone help you to afford to travel to a better dr? I know some who come down to the states a couple times per year – Of course, we have our share of uninformed dismissive docs too – but hopefully you will find a good one somewhere!

      Reply
  • May 18, 2012 at 1:18 pm
    Permalink

    I just turned 50 and was diagnosed with RA a few months ago. Looking back, I can see I had signs and bouts with the disease years ago. I was in the lawn maintenance and landscaping field also, and I wonder if I perhaps pushed myself too hard and that had helped to bring on the disease. I have learned that drinking beer(I think its the yeast)makes the pain much worse. I too am without insurance, so all I am using are steroids(prednisone). However, please do research on any drug they prescribe, and be sure its from an RA Specialist. Prednisone over long term use has been known to cause Diabetes. Another drug thats common causes Psoriasis of the liver if you consume moderate alcohol. Humira also is very expensive, and has its own side effects. I shudder to think where I will be in ten years, and I can’t help but wonder if RA is brought on by factors like foods we eat or even perhaps the flouride that is put in our water that is known to be bad for the body. Food today is processed, meat is shot with hormones, and our milk is contaminated with steroids and enzymes. Glad I found this thread and will be checking back from time to time. God bless you all.

    Reply
    • May 18, 2012 at 1:57 pm
      Permalink

      Thanks for commenting, Keith. If you do need Humira or one of the similar treatments, the companies do have programs to help pay for the drugs. They have websites for patients to help you qualify. Also, if a specialist prescribes methotrexate (the most common treatment for RA), it is pretty cheap to buy – I know the blood tests & dr appts are expensive too. I’ve been uninsured before also.

      Reply
  • December 4, 2012 at 5:02 pm
    Permalink

    Wow, after reading some of these posts, I feel very fortunate. It was less than a year from the first onset of my disease to full diagnoses and aggressive treatment. Although it seemed to be the longest year of my life, with many misdiagnoses, expensive and in hindsight, unnecessary exams, I am well on my way to recovery. I am very fortunate to have found a Primary care Dr that I love and trust, and so far everyone he has sent me to have been top notch and would recommend to anyone. I am now only seeing my primary and RA doctors, i am on methotrexate and humira. With the help of the the humira help plan if is very cheap and affordable. I have also changed to a mostly vegetarian diet and have cut out all alcohol as it is a known inflammatory and does not mix well with many of these drugs. My journey in this battle is far from over, but i can now see some light at the end of the tunnel.
    Thanks, and Namaste!

    Reply
  • December 4, 2012 at 7:20 pm
    Permalink

    I’m with you Ed, even though I do not havevinsurance, I still feel somewhat lucky. I have an awesome, kind Doc who referred me to a great Rheumy, as soon as she suspected RA. The “tests” that I’ve been able to afford so far are negative, but the Rheumy says she’s sure I have RA and possibly Scleraderma. She’s giving me discounted office visits, and put me on Prednisone and now MTX. I go back in Jan and she said if needed we’d start on a biologic. She said aggressive treatment is necessary. I’msaving formoretests. I feel so thankful for her.

    Reply
  • December 5, 2012 at 9:36 pm
    Permalink

    Where did you get that photo of “please tip me / and carry your own danged luggage, while you’re at it”??

    Reply
    • December 5, 2012 at 9:38 pm
      Permalink

      I took that photo in a cab.
      As a blogger, I’m always shooting something so I can make a connection w/ it one day! 🙂

      Reply
  • December 6, 2012 at 1:31 pm
    Permalink

    RA is a pretty tough disease, I have been dealing with it under no medical supervision for over 1 1/2 years. When I lost my health insurance my Rhuemy refused to see me as a patient. I qualified for my Orencia to be free but it would be $283 a month for the IV to be administered. In Buffalo, NY there is only a handful of Rhuemitologist to chose from. With all the laws changing about pain medications I can’t even get a script written to quiet the pain down. Im in a visious cycle no job , no health insurance, just daily living in pain. Just want my life back.

    Reply
  • December 6, 2012 at 11:14 pm
    Permalink

    Kelly, in what delightful city did you find that taxi sign?

    My dad (always a good tipper) used to say that if you have to BEG for a tip, you probably don’t “get it” in the first place (tips being all about good service).

    Recently on an airport shuttle I saw a big cup taped up near the driver with a sign saying YOUR GENEROUS TIPS ARE APPRECIATED. Not a soul dropped anything in. 🙂

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *


“imaware™
    Advertisement
Would You Like Free Email Updates?
Stay in touch with RA Warrior.
We respect your privacy. Your email address will never be shared.