Posts Tagged ‘American College of Rheumatology’

The American College of Rheumatology (ACR) diagnostic criteria incorporate four main areas – joint involvement, RA related blood tests, general inflammation blood tests, and duration of symptoms.1According the ACR,

Joint involvement refers to any swollen or tender joint on examination, which may be confirmed by imaging evidence of synovitis.”2

Physical examination is the starting point for identifying joint involvement. But confirmation by actually looking inside the joint with imaging techniques remains a critical part of confirmation.The synovium is a sac-like lining around certain joints. It provides nutrients and lubrication for joint soft tissues. During the disease processes involved with RA, the synovium swells and thickens, becoming permeated with inflammatory cells and chemicals. Ultimately, cartilage and bone tissue erodes leading to the classic joint damage associated with RA.3 The synovial fluid can be taken from a joint and analyzed for chemicals and cells associated with RA.4 This can be done via needle biopsy or surgery. During an ankle surgery I had several years ago, the orthopedic surgeon sent a sample of tissue to a laboratory for analysis – the results came back positive for RA related synovitis. Medical imaging procedures can be used in as a noninvasive technique for examining a joint.

Read the rest of the article at http://rheumatoidarthritis.net/living/medical-imaging-diagnosing-ra/


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I’ve been on seven – count them – seven different biologic medicines since being diagnosed with rheumatoid arthritis. I started with several anti-TNF biologics and then moved to several others even bouncing back to try another anti-TNF before eventually trying Rituxan. I’ve self-injected with auto-inject pens, self-injected with needles, and seems like I’ve had every type of infusion possible. This is probably something of a record although similar stories emerge on discussion boards from time to time. With some of the biologics, I would respond for a period of time and then it would stop working. With others, there was never a response. With yet others, there would be some adverse side-effect causing cessation. This is not all to unusual as it is widely know in the rheumatology community that upwards of 30% of RA patients do not positively respond to anti-TNF biologic medicines.

Read the rest at … http://rheumatoidarthritis.net/living/switching-ra-medicines-dont-wait-long-try-many/

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A recent article in the online publication for doctors called Rheumatology Network calls into question the commonly used outcome measures used in RA. The article, titled RA Outcome Measures Made Simple (or Not?), makes the argument that simpler measures of RA activity are needed.

Over the years, numerous measurement tools have been developed to help doctors determine extent of disease activity. These measures include the HAQ, DAS 28, CDAI, ACR 20, and RAPID 3 among others. These survey-type tools usually focus on joint activity, swelling, pain levels, disability. Some, like the DAS 28 (28 refers to 28 joints – the number of RA affected joints), include blood tests in the assessment. An online DAS 28 tool is available for doctors and patients. If you are a RA patient, your rheumatologist may have used one or more of these tools for diagnosis and to monitor treatment effectiveness. These tools are also used for drug development and testing.

Over the years, these measurement tools have been the target of much research in terms of validation and correlation with the disease (e.g. Radner, et al, 2014). Because they have been shown to provide a modicum of usefulness, they remain in vogue by the rheumatology community. However, in spite of their usefulness and relationship with RA disease components, the ability of these surveys to accurately and completely paint a picture of the disease remains in question. A recent study by Cheung et al (2013) demonstrated that doctors and patients sometimes agree, and sometimes disagree on some of these measures. Sometimes doctors and patients completely disagree (see Castrejón, et al, 2014). In a research paper that I helped present at the American College of Rheumatology conference last year, it was found that the commonly used HAQ tool did not always adequately capture disease impact and activity in patients.

When it comes to subjective measures like impacted joints and bodily function, it’s oftentimes difficult to develop tools that measure variables with 100% accuracy. One would like to think that measurements of biological chemicals involved in disease processes would be more accurate, But that is not always the case and they are also difficult to develop with 100% accuracy (see this article). The bottom line is that researchers need to continue to work on developing useful and accurate measures for RA disease activity. Only then can diagnosis and treatment options be maximized.

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There are several blood tests that rheumatologists currently use to diagnose and monitor rheumatoid arthritis disease activity. Rheumatoid factor (RF) is an antibody identified with RA and other autoimmune diseases. A newer test specific to RA called anti-cyclic citrullinated peptide, or anti-CCP, has been found to have more predictive value than rheumatoid factor tests.1 Since RA involves inflammation, general tests of systemic inflammation including erythrocyte sedimentation rate (ESR) and c-reactive protein may be used. These tests are not specific to RA and are used for a variety of diseases and conditions. But these tests are not completely accurate and they may fail to identify disease activity.

Read more at …http://rheumatoidarthritis.net/living/better-diagnostic-and-individualized-tests-for-ra-needed/

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ACR 1I recently had the privilege to attend the annual meeting of the American College of Rheumatology. Considerable time was spent in the exhibit hall since, in addition to presenting a research paper, I was also volunteering at the booth of the Rheumatoid Patient Foundation.

The exhibit hall was overwhelming and the cavernous room was dominated by pharmaceutical companies. There were dozens of exhibits from large to small companies including, but not limited to, the following who provide many of the major biological treatments for RA:

ACR 2These pharmaceutical companies commanded the majority of the space and had professionally designed exhibits replete with multimedia presentations, large colorful signs and displays hanging from the ceiling, leather lounge chairs, espresso bars, snacks, colorful print materials, conference rooms, and an army of 20-30 sales representatives each. The rumor floating around was that these traveling exhibits cost upwards of $100,000 each in addition to the staff and other associated costs. They replace them every year. It is evident that the big pharmaceutical companies, especially those with expensive biological drugs on the market for RA, have vast amounts of funds to spend on sales and these exhibits. Based on this level of spending, it is obvious that this is big business and it is important for these companies to interact with the doctors and other health care providers who attend this conference in an effort to increase the sales of their drugs.

I enjoyed free espressos from Genentech/Roche each day – the manufacturer of my current RA medication Rituxan. One day while drinking my coffee and looking over research materials on Rituxan, a sales representative approached me obviously expecting me to be a doctor. I told her that I was a patient advocate who was actually taking Rituxan. She literally took a step backwards and told me that she was sorry and hoped I felt better. I laughed and said thanks and grabbed some print materials on clinical trail results and side effects. This awkward moment drove home the potential disconnect between the company sales force and patients. In spite of this brief and awkward interaction, the pharmaceutical companies must be commended for several things.

ACR 3Most of the research and development (R&D) behind these biological treatments for RA were paid for by the pharmaceutical companies. Oftentimes, the basic research, paid for by government or private foundation money, starts with a university-based researcher. These basic ideas lead to potential new treatments and the drug companies take over the onerous and lengthy task of developing and trying out new drugs. For biological drugs, this process may take years. And for every drug that makes it to market, there may be dozens that fail. Such development processes are extremely expensive and those costs are passed onto the patient in the cost of the drug. During the conference I was able to speak with several companies about RA treatments that are in Phase III Clinical trails (the last phase before seeking government approval). The concern is about who is going to pay for the R&D once pharmaceutical companies go over the so-called patent cliff in the next few years when their patents run out and they start to loose market share and profits.

Another patient benefit provided by the pharmaceutical companies for expensive biological treatments for RA are co-pay assistance plans. All of the companies listed above have such plans and they pay out millions of dollars each year helping patients be able afford treatments that can cost between $16,000 – $40,000 a year. This assistance, while extremely beneficial to those who need it, also demonstrates the large profit margins built into the “retail” costs of the drugs.

During the conference, I also met several consultants who are contracted by pharmaceutical companies to conduct research related to patient reactions and opinions about their products. While one may cynically infer that the companies are simply trying to increase their market share by pressuring the patients to ask for their drug, it was clear from the consultants that they genuinely want to increase the positive interactions between patients and the pharmaceutical companies in an effort to improve patient care and future drug development.

Yes, pharmaceutical companies are huge for-profit entities with a major goal of making money for shareholders. And the companies with major biological treatments for RA make enormous profits (Humira sales alone for the 4th quarter of 2012 were $2.7 billion). But they also bear the brunt of the R&D process, help with co-pays, and appear to seek patient interaction. As the patent cliff approaches, time will tell how it will impact these companies and the future of RA drug development.


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photoI made it back home after a wonderful three days at the American College of Rheumatology conference in San Diego only to have an MRI on my right elbow today (more on that later).

The highlight of day 3 was a research paper that a team presented. The research team was led by Kelly Young from the Rheumatoid Patient Foundation (RPF) (who also blogs at RA Warrior), Dana Symons from RPF (who also blogs at The Water’s Edge), myself, and Cindy Crowson from the Mayo Clinic. I ran the statistics on the data.

The goal of this study was to obtain greater understanding of the nature of RA as experienced by patients. This was done by giving a patient survey that contained some questions related to consequences of performing certain physical tasks and whether a recovery period followed. The survey also contained and some questions directly from the Health Assessment Questionnaire (HAQ) which is a common assessment tool used to gauge disease impact. The hypothesis was that the HAQ fails to adequately gauge the real impact of RA in activity.

Below are some highlights from the findings and discussion.

In addition to the HAQ question: “Are you able to climb up five steps?” survey respondents were asked a corresponding question related to this activity: “If you climb a flight of stairs, will you be able to continue to walk, climb stairs, or move around afterwards just as well as before climbing the stairs?” After climbing stairs, only 17% said they would be able to move normally as others do or as before having RA. 54% would move with SOME increased difficulty because of having climbed the stairs, and 29% said they would have more difficulty each time they continue to do such activities in the same day.

Seventy-eight percent of respondents reported often (51% “always” and 27% “usually”) having a recovery period when they are less able to be physically active after physical activity. The majority reported being unable to do chores such as vacuuming or yard work on the same day as running errands or shopping. People who are more likely to require a recovery period are less likely to engage in multiple activities.

The survey items were statistically deemed to be measuring similar, yet different aspects of impact of the disease on daily activity.

The results of this study suggest an aspect of disease impact on physical functional that is not detected by the HAQ – a common assessment tool used by doctors and researchers during clinical trials of new drugs. Several results of this survey indicate the existence of a “recovery period” after physical activity in people living with RA. The survey data also indicate that patients modify activity to manage consequences rheumatoid disease.

Patient responses on the HAQ may reflect a higher health-related quality-of-life score than patients actually experience due to lifestyle adaptations, the failure of the HAQ to detect consequences of physical activity such as a recovery period, and the failure of the HAQ to consider essential context of activities in real life. Within the context of real life, patients have lower functional capacity after performing tasks described in the HAQ, and may not be able to repeat such tasks with the same level of difficulty. Patients also modify tasks, which may not be detected by HAQ responses. Further investigation is needed to develop ways for patient outcome measures to more accurately assess rheumatoid disease activity.

Here is a link to the entire poster abstract if you are interested in reading – http://rheum4us.org/wp-content/uploads/2013/10/Abstract-Poster-HAQ.pdf.

It was exciting to participate in patient-driven research about RA and the goal is that such efforts will continue to inform clinicians and researchers so that diagnosis and treatment will improve.

As I digest and process information about the conference in general over the next few weeks, I will write blog posts describing what I learned from the conference.

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espressoToday was another great day at the American College of Rheumatology (ACR) conference in San Diego.

I enjoyed another espresso courtesy of Genentech/Roche who are the makers of Rituxan, one of my current RA meds. I guess I paid for that coffee many times over! In addition to working the Rheumatoid Patient Foundation booth, I attended several excellent sessions and browsed the poster presentations. Here are several keys ideas I gleaned from the day and more details will follow over the next few weeks as I digest information.

  1. Dr. Atul Butte from Stanford University gave a brilliant talk about how the information age stands to completely transform medicine and drug development.
  2. There is a “patent cliff” coming soon where many current pharmaceutical companies will loose patents on drugs (see this earlier post). The question remains about who will develop new drugs after this happens.
  3. Huge online databases may be able to help identify genes connected to diseases (diagnostics) and be used to develop new drugs (therapeutics).
  4. Patient self-assessments of RA symptoms align with rheumatologist assessments about 50-70% of the time. Questions remain about where they disagree.
  5. There are several new RA drugs in phase III clinical trials that may make it to market soon.

Another update will come after tomorrow.


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