Poster by Israeli association for RMDs patients Mifrakim Tze’irim (עמותת מִפרקים צעירים)

September 28, 2022

The Israeli association for RMDs patients Mifrakim Tze’irim developed the IN MY HANDS arthritis self-management course for members of their association in collaboration with the Association of Arthritis and Rheumatism – Malta (ARAM) and Malta’s Health Ministry, assisted by a grant from EULAR PARE (People with Arthritis / Rheumatism across Europe). A pilot course was successfully held in 2019 and as of June 2022 over 50 members completed the course.

This image presents the syllabus of the course. Please click here to access the poster.


 

EULAR 2022 highlights

September 27, 2022

New Population-based Studies Show Increased Risk of Dementia and Depression in RA

Growing evidence from observational studies indicates that patients with RA have a higher risk of developing dementia. The occurrence of depression is also increased. New research shows depression is linked to increased mortality in this population. Clinically active RA was also associated with an elevated risk of dementia. Further studies are warranted to identify mechanisms of increased risk of dementia in RA patients.

See news release:

https://www.eular.org/sysModules/obxContent/files/www.eular.2015/1_42291DEB-50E5-49AE-5726D0FAAA83A7D4/new_population_based_studies_show_increased_risk_of_dementia_and_depression_in_ra.pdf

Data support the idea of a treatment window in the pre-arthritis phase of early RA

Currently, methotrexate is initiated as first-line treatment when arthritis becomes clinically apparent with joint swelling. However, disease processes begin long before patients develop symptoms. New research published at the 2022 EULAR Congress in Copenhagen suggest that there is potential for a treatment window in the pre-arthritis early phase of RA, where limitations can be just as severe as at the onset of clinical arthritis. But it is also important to consider people’s socioeconomic factors, which may also have a bearing on progression to inflammatory arthritis.

See news release:

https://www.eular.org/sysModules/obxContent/files/www.eular.2015/1_42291DEB-50E5-49AE-5726D0FAAA83A7D4/data_support_the_idea_of_a_treatment_window_in_the_pre_arthritis_phase_of_early_ra.pdf

Gaming for Adherence to Medication: Using virtual care in RA

Effectiveness of treatment for RA is limited by inadequate adherence. Medication adherence can be influenced by implicit attitudes of personal medication needs and concerns about adverse events. The GAMER study targeted these attitudes using a serious puzzle game.

See news release:

https://www.eular.org/sysModules/obxContent/files/www.eular.2015/1_42291DEB-50E5-49AE-5726D0FAAA83A7D4/gaming_for_adherence_to_medication_using_e_health_in_ra.pdf


Global RA Network launches Rheumatoid Arthritis Dashboard

The new advocacy tool identifies gaps in the delivery of RA care and treatment around the world

Image of a screenshot of the RA Dashboard

Copenhagen, June 1, 2022 – The Global RA Network (the “Network”) today launched a new powerful advocacy tool – the RA Dashboard – as part of its initiatives to improve models of care for people with rheumatoid arthritis (RA). Developed in collaboration with leaders from 18 RA patient organizations, the Dashboard presents key data about the disease and the delivery of RA care and treatment in Europe and the Americas.

RA is the most common autoimmune inflammatory form of arthritis and affects approximately one in 100 persons worldwide. RA reduces a person’s quality of life and is one of the world’s leading causes of disability. Despite its prevalence and costs to societies, the RA models of care vary from country to country and many gaps and inequalities exist.

“Improving RA models of care across Europe and the Americas requires collaboration between stakeholders, including patient groups, policy experts, government and industry, alongside robust RA data. The RA Dashboard is an easy-to-use tool for visualizing the current status of RA care and for monitoring progress on key components of a country’s RA model of care,” explains Cheryl Koehn, president, Arthritis Consumer Experts, which serves as the Global RA Network’s Secretariat.

Koehn added: “Several countries in the Network reported not being able to access key RA statistics in their country for the Dashboard. In those countries, governments are either not collecting data on RA or are not making it public. If governments are not collecting and sharing data on people living with RA, they will not know the magnitude of the problems or how to fix them.”

“As we’ve learned during the pandemic, data is the evidence that drives sound health care decision-making. However, in Romania, nobody knows exactly how many RA patients there are and what RA’s socio-economic cost is. RA data that is accessible in Romania is often extrapolated from general European data but may actually not reflect the actual numbers in our country,” explained Rozalina Lapadatu, president, Asociației Pacienților cu Afecțiuni Autoimune in Romania. Accessible via the Network’s website at https://globalranetwork.org/ra-dashboard, the Dashboard is currently available for 10 countries. The Dashboard data have been researched and collected by member associations and the Network’s Secretariat using local publicly available literature and existing open data sets of government agencies and research organizations as well as results from the Network’s international survey on models of RA care.

“The Dashboard provides an immediate picture of RA in a country like Italy and how our RA care system fares in comparison to other countries in Europe. No standardized RA model of care exists today in Europe or the Americas. This disparity leads to frustration and disappointment for RA patients whose very lives depend on getting a timely and accurate diagnosis, timely access to rheumatologists, and adequate reimbursement for medications, among other critical elements of an effective RA model of care,” commented Antonella Celano, President of Associazione Nazionale Persone con Malattie Reumatologiche e Rare (APMARR) in Italy. “For example, we’ve found 17% of RA patients in Italy waited more than three months for a first visit with a rheumatologist which is significantly above the recommended time between referral and first appointment with a rheumatologist of no more than four weeks.”

People are encouraged to join the conversation about RA, the need for more data about RA and improved RA models of care on Facebook and Twitter @GlobalRANetwork and by using #RADashboard.

About the Global RA Network

Founded in 2016 by rheumatoid arthritis patient organizations and leaders from 18 countries, the Global RA Network was formed to build international relationships and identify and work on common goals and initiatives to improve the lives of people living with RA around the world. The Global RA Network developed a survey that was launched in 2017 called: “Patient experiences of rheumatoid arthritis models of care: An international survey.

The first crowd-sourced research of its kind designed by RA patients to better learn what their care experiences are like in their country, the global survey highlights self-reported gaps and delays in all five key elements of a standardized RA models of care, including significant delays to diagnosis and specialist access in the countries surveyed, patients not meeting their arthritis specialist often enough, and the need for education/information to increase patients’ confidence to describe RA and improve their ability to care for themselves.

To learn more about the initiatives of the Global RA Network, visit https://globalranetwork.org.

Media contact:

Isabelle Troïtzky – Program Manager, Secretariat of the Global RA Network

Mobile: +1 (514) 220-0085

Email: secretariat@globalranetwork.org

Kelly Lendvoy – Vice President, Communications & Public Affairs, ACE and member of the Secretariat, Global RA Network

Mobile: +1 (604) 379-9898

Email: lendvoy@jointhealth.org


 

ACR Key RA research takeaways – 2021

December 13, 2021

This year’s American College of Rheumatology’s annual scientific meeting, which took place November 1 to 10, included more than 2,000 abstracts and expert presentations from over 320 clinicians, researchers, and health experts. More than 14,000 rheumatology professionals and patients from 110+ countries attended the virtual conference online.

Here are some key RA research updates:

ACR Banner

Rituximab increased odds of COVID-19 hospitalization vs. DMARDs for RA patients

Patient use of rituximab compared with conventional synthetic disease-modifying antirheumatic drugs was associated with worse COVID-19 outcomes in patients with rheumatoid arthritis (RA), according to a presenter at ACR Convergence 2021.

“The COVID-19 pandemic led to several questions regarding the safety of DMARDs that patients with rheumatic diseases use for their management,” said Namrata Singh, MD, MSCIFACP, assistant professor at the University of Washington.

Among different DMARDs, rituximab (Rituxan, Genentech) has a unique mechanism of action with depletion of B cells that can last for several months. Dr. Singh and his research team considered this in their study with the aim to shed light on the comparative safety of rituximab compared with other DMARDs in patients with RA.

“Interestingly, in our study, we did not find an association between rituximab use and mortality from COVID-19,” explained Singh. “This contrasts with a few other studies that did observe an association. We speculate that this could be because prior studies did not adequately adjust for COVID-19 treatments, especially those used during COVID-19 hospitalization, as we did in our analyses.”

No DMARD use was also found to be associated with significantly higher odds of hospitalization in patients diagnosed with COVID-19, according to the study.

“Findings from our study can guide patients, providers and policymakers regarding the increased risks associated with rituximab use during the COVID-19 pandemic,” the researchers said in the presentation.

The data also highlight the need for continued close monitoring of patients on rituximab, the need for COVID-19 vaccination and boosters, and continuation of the other preventive measures, including masking, social distancing and avoiding unnecessary travel.

Black and Hispanic RA patients have higher disease activity than white patients

New research presented at the ACR annual meeting found that racial and ethnic disparities for disease activity persist in people with RA. Black and Hispanic RA patients often had higher disease activity and lower self-reported functional status (basic activities of daily living, e.g., feeding, bathing, dressing personal hygiene and walking) when compared with white patients.

Research has shown that there are differences in disease activity and clinical outcomes for people with RA across different racial and ethnic groups in the United States. These disparities exist across the healthcare system, and these inequities impact both patient experience as well as patient clinical outcomes. However, this has not been studied as extensively in RA as in other disease areas, so there is still a need to understand the magnitude of health disparities in RA. The authors conducted this new study to learn more about these disparities and how they may have changed over time.

According to the presenter of the study, Jacqueline O’Brien, ScD, a clinical epidemiologist:
“The study tells us that, in a population of people who have access to a clinic, have access to treatment, that we’re seeing a lot of differences between the racial and ethnic groups. I think the findings can serve as a reminder to clinicians that it’s important to be mindful that patients are coming from diverse racial and ethnic backgrounds. They may have different needs to achieve similar levels of success with advanced therapy.”

There are many factors that contribute to health inequality, including access to care, socioeconomic status, systemic racism and other social determinants of health (non-medical factors that influence health outcomes).

Dr. O’Brien added. “Certainly, more research is needed to understand how these factors interact and result in different clinical outcomes for racial and ethnic groups. We need to identify where the disparities exist, so that we can better target therapy and improve care, for all patients.”

A key long-term goal is really recruiting diverse populations into future research. RA research has focused predominantly on white populations, and we need more information on the epidemiology of RA (determinants, distribution of diseases), the disease course, the patient reported outcomes in patients of different racial and ethnic backgrounds, and ultimately a complex multifactor solution is going to be needed to address health disparities in RA.”

Going deeper

The underrepresentation of Black, Indigenous People and People of Colour (BIPOC) patients in RA research is a very important finding in and of itself. It suggests that racial minorities are generally being excluded from networks in the arthritis patient community. This means the voices and experiences of BIPOC people living with RA are largely going unheard. This is a particularly significant problem because BIPOC people are more likely to experience negative health outcomes (due to systemic racism) in RA.

A May 2021 study published in Arthritis Care & Research examined 65 ACR and EULAR practice guidelines and recommendations and found a troubling lack of clarity regarding race information, an “urgent need” for standardized race reporting and research with insufficient racial diversity that was used to make race-based recommendations for Black patients.

Higher risk of breakthrough COVID-19 infection in RA, gout, vasculitis patients

Patients with rheumatoid arthritis, gout, vasculitis and those with multiple autoimmune of inflammatory arthritis diseases were at greatest risk for breakthrough COVID-19 infection, despite full or partial vaccination, compared to those without autoimmune disease.

“People with rheumatoid arthritis, gout, vasculitis and multiple autoimmune diseases were significantly more likely to have breakthrough infections compared to people without immunosuppressed conditions,” said Jasvinder A. Singh, MD, MPH, of the University of Alabama at Birmingham, in his presentation at ACR Convergence 2021.

Dr. Sing concluded: “This data, we believe, is important information to guide patients, providers and policymakers. Although more research is needed, these findings support the use of a third vaccination in immunosuppressed patients.”

Vitamin D, omega-3 supplements reduced risk for autoimmune disease, including RA

The use of vitamin D3 or omega-3 fatty acid supplements over a 5-year period may reduce the incidence* of autoimmune disease (including RA) in older adults by 25% to 30%, according to data presented at ACR Convergence 2021.

*(Incidence is a measure of disease that allows us to determine a person’s probability of being diagnosed with a disease during a given period of time. Therefore, incidence is the number of newly diagnosed cases of a disease.)

“In past studies, inflammatory bowel disease, multiple sclerosis and type 2 diabetes have been shown to be more prevalent at northern latitudes, where circulating vitamin D levels are lower,” Karen Costenbader, MD, MPH, director of the Lupus Program at Brigham and Women’s Hospital, told attendees at the ACR meeting. “Both vitamin D and high residential UV exposure were associated with a decreased risk for rheumatoid arthritis among women in the Nurses’ Health Study in our past work.”

However, to date, no prospective randomized trials have tested the effects of vitamin D or omega-3 fatty acid supplementation on the incidence of autoimmune diseases over time, Costenbader noted.

“The reduced incidence of RA is very important for rheumatology,” Costenbader said. “The more pronounced effect after 2 to 3 years of use with vitamin D makes sense biologically and supports long-term use. There is an ongoing extension study confirming incident cases in further follow-up. The clinical importance of these results is very high given that these are well-tolerated, non-toxic supplements, and that there are no other known effective therapies to reduce incidence for autoimmune diseases.”

Glucocorticoid use in RA patients increases cardiovascular risk

According to data presented at ACR Convergence 2021, 30 days of glucocorticoid use in 6 months for RA patients is associated with 15% increased odds of major adverse cardiac events (MACE) in the next 6 months. Glucocorticoids medications are man-made versions of glucocorticoids, which are steroids that occur naturally in your body, and are very effective at reducing inflammation and suppressing the immune system.

“Up to half of RA patients in the United States use long-term glucocorticoids, despite previous work suggesting they increase major cardiovascular events,” said Beth Wallace, MD, MS, of the University of Michigan Medicine and the U.S. Veterans Affairs Ann Arbor Healthcare System.
“Earlier research suggests long-term glucocorticoid use is common among RA patients with traditional MACE risk factors, like hyperlipidemia, diabetes, hypertension and smoking, but we know little about the incremental effect of ongoing glucocorticoid use on MACE risk in RA, particularly as traditionally predisposed comorbidities might confound its assessment.”

Dr. Wallace added: “For example, RA patients who take steroids may be more likely to develop diabetes or hypertension, which, if not adjusted for, could confound an association between glucocorticoid exposure and MACE.”

The study results saw that just 30 days of glucocorticoid use in a 6-month period, even if discontinuous, is associated with a 15% increase in odds of MACE over the following 6-month period. This association appears not to be related to a patient’s baseline MACE risk, or to biologic and methotrexate use.


 

Key rheumatoid arthritis presentations from EULAR 2019

September 20, 2019

The Annual European Congress of Rheumatology 2019, hosted by the European League Against Rheumatism (EULAR), featured more than 14,500 attendees from 120 countries coming together to hear the best in rheumatology research and clinical advances. The scientific programme included presentations carefully selected from 4,900 abstracts submitted.

This week, EULAR published it’s The EULAR 2019 Report providing the highlights of some of the best presentations, focusing on the clinical and therapeutic findings that are able to change the way rheumatologists and other health professionals practice medicine.

How does it relate to the work of the Global RA Network?

As part of the work of the Global RA Network, our members have defined key elements of a RA model of care that address the complex, life-long issues facing patients and include all points of contact across the health care system.

At EULAR 2019, numerous presentations were related to the Global RA Network’s RA models of care key elements during the patient’s disease journey:

  1. Global RA Network Model of Care element: Medical Management

 As defined by the Global RA Network, the management of RA is complex and requires consistent and frequent monitoring with an arthritis specialist to ensure the effectiveness of treatment and care.

 Here are some highlighted EULAR research presentations on “medical management” for RA patients:

 EULAR revises its RA management recommendations

 The most notable recommendations to RA management discussed at the EULAR conference include:

  • no change to designating methotrexate as the first disease-modifying medicine to prescribe, before any biologic medicine;
  • no adoption of imaging criteria to determine whether a patient is in remission; and
  • no preference is to be given to biologic DMARDS over target synthetic DMARDS

Read more about EULAR revisions to RA management recommendations here: https://www.eularcongressnews-digital.com/eularcongressnews/eular_2019_report?pg=9#pg9

Understanding why some RA patients do or don’t respond to methotrexate. Some newly diagnosed RA patients respond well to the disease-modifying drug methotrexate and others do not. Preliminary EULAR research found that there were differences in how bacterial genes functioned in people who did and did not respond to methotrexate. More research is needed to validate this work and to see whether the model applies to other patient populations. But the research does provide “the first step toward predicting methotrexate response in new-onset RA patients,” according to EULAR Congress News. See the abstract of the oral presentation: https://ard.bmj.com/content/78/Suppl_2/133.3

New JAK inhibitor gets closer to RA approval. JAK inhibitors are targeted oral medications that can treat inflammatory autoimmune diseases.  Phase III clinical trial results for a new JAK – filgotinib – were presented at EULAR. The data showed that filgotinib helped prevent radiographic progression and improved physical function among RA patients who didn’t respond to methotrexate. More patients who took filgotinib achieved an improvement of at least 20 percent in American College of Rheumatology criteria (ACR20) after three months compared with patients on a placebo. “Its effectiveness and ease of use make it a potential monotherapy,” said investigator Bernard Combe, MD, PhD, from Montpellier University in France. He predicted that the drug could be on the market within two years. See the abstract of the oral presentation here: https://ard.bmj.com/content/78/Suppl_2/77.3

It may be safe to taper prednisone in RA patients doing well on tociluzumab (Actemra). A new trial found that more than two-thirds of RA patients in remission or with low disease activity who tapered prednisone down to 0 mg/day over the course of six months while taking tociluzumab did not experience disease flares or experience adrenal issues (which can happen while weaning off steroid medication). “Tapering glucocorticoid treatment with an aim for complete discontinuation is worth considering for all patients once they achieve disease control in line with treat-to-target recommendations,” Gerd R. Burmester, MD, director of the department of rheumatology and clinical immunology at Charité-Universitätsmedizin Berlin and Humboldt University of Berline, said in the EULAR Congress News. See the abstract for the oral presentation: https://ard.bmj.com/content/78/Suppl_2/84

It may be safe for RA patients doing well on tofacitinib (Xeljanz) to taper methotrexate. RA patients taking the JAK inhibitor tofacitinib (Xeljanz) plus methotrexate who achieved low disease activity may be able to stop taking MTX without worsening their disease activity. “These results may be used to inform treatment guidelines regarding optimal approaches for discontinuation of methotrexate in patients with rheumatoid arthritis,” study author Stanley Cohen, MD, of the University of Texas Southwestern Medical Center in Dallas, told MedPage Today.

Disease remission associated with 80% reduction in risk of cardiovascular outcomes in RA patients

RA patients who are in remission are 80 percent less likely than those with active RA to have a heart attack or stroke or develop congestive heart failure, according to new Italian research that analyzed data on nearly 900 patients. This is very encouraging news for patients who hear and worry about various RA complications because it indicates that controlling disease activity can reduce the impact of systemic inflammation on other organs. It also highlights the importance and the challenge of getting more RA patients into remission in the first place. Read more about the research: https://www.eular.org/sysModules/obxContent/files/www.eular.2015/1_42291DEB-50E5-49AE-5726D0FAAA83A7D4/03_abstract_op0090_atherosclerosis_in_ra_final.pdf

Preventing gum disease may help manage RA symptoms. A large Japanese survey of rheumatoid arthritis patients found that those with periodontitis (inflammation of the gums) had significantly higher disease activity scores, worse physical function, and greater rates of infection than patients without gum disease. “Oral care is important for patients with rheumatoid arthritis because it appears to improve disease outcomes in clinical settings,” according to Ryoko Sakai, MD, of Tokyo Women’s Medical University, in EULAR Congress News.

  1. Global RA Network Model of Care Element: Shared Care

As defined by the Global RA Network, treatment decisions should be made through agreement between the patient and the healthcare team, and there must be adherence to the treatment regime.

image of healthcare team

Here are some research results presented at EULAR 2019 that focus on “shared care” for RA patients:

Patient-healthcare provider relationship key factor if patients take methotrexate as prescribed. Serbian researchers found that patients were more likely to be “non-adherent” to methotrexate if they reported needing better communication with their doctor about RA treatment. About one-third of patients in the study were considered non-adherent to MTX.  Patients have many questions about taking methotrexate. It may be the case that improving doctor-patient communication could alleviate some patient concerns. View the abstract here: https://ard.bmj.com/content/78/Suppl_2/1677.1

Doctors working with patients to manage their fatigue. In a session at EULAR titled “My Joints Hurt and I’m Overwhelmingly Tired: Fatigue in Rheumatoid Arthritis”, doctors reviewed how to recognize, assess, and treat fatigue in inflammatory arthritis patients.

“Fatigue remains a difficult-to-address patient concern,” says Maria Danila, MD, a rheumatologist at the University of Alabama Birmingham, who attended the session. Fatigue affects 40 to 80 percent of patients with rheumatic and musculoskeletal diseases, so it was encouraging to see clinicians making this topic front and center at EULAR 2019. See the speaker abstract: https://ard.bmj.com/content/78/Suppl_2/15.2

Doctors helping patients are making exercise a key part of the treatment plan. In a session at EULAR called “Exercise: More Than a Wonder Drug”, attendees discussed “how to help and motivate patients to make [exercise] a habit so they can reap its long-term rewards.” Rheumatologists were advised that although their time with patients is limited and focused on assessing disease activity and reviewing medication management, they should also find the time to encourage physical activity with their patients. See the speaker abstract: https://ard.bmj.com/content/78/Suppl_2/16.5 

  1. Global RA Network Model of Care Element: Patient Self Care

As defined by the Global RA Network, the RA patient should be fully educated about their medical conditions and the importance of closely following the treatment regime.

Here are some EULAR research highlights on RA patient self-care:

Obesity and smoking could be leading factors in RA patients not achieving remission in the first year of treatment. Canadian researchers sought to understand which factors contributed to RA patients receiving guideline-based care not achieving remission in the first 12 months of treatment after being diagnosed. They found that obesity in women and current smoking in men “were the strongest predictors of not achieving remission in the first 12 months” followed by non-use of methotrexate, higher baseline inflammation and longer symptom duration. Researchers suggested that lifestyle interventions such as “smoking cessation in men and weight reduction in women, and optimising methotrexate use may facilitate rapid reduction of inflammation, an essential goal of treatment in early RA.” Read the abstract: https://ard.bmj.com/content/77/Suppl_2/103.2

Mediterranean diet may help RA patients, but more research is needed. There’s scant evidence to support specific diet recommendations to prevent or manage inflammatory arthritis, but many nutrition experts advise patients to follow a Mediterranean-style diet because of other data that links this style of eating to lower risks of heart disease, type 2 diabetes, and certain cancers. One French study from EULAR found that following a Mediterranean diet helped lower the risk of developing rheumatoid arthritis in women who used to smoke. An Italian study found that among people already diagnosed with RA, there was a correlation between following a Mediterranean diet and lower disease activity, although it was not statistically significant. Adhering to the Mediterranean diet was linked with lower rates of high blood pressure and better general health. Read the abstract: https://ard.bmj.com/content/78/Suppl_2/1409


 

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