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Vaccination is especially important for those who have a greater risk of developing serious complications from viruses like COVID-19. This includes people living with underlying medical conditions, like autoimmune and inflammatory rheumatic diseases (AIIRD), that may weaken the immune system due to disease or medications. Because of that, researchers are looking into understanding the patient perspective on receiving vaccines.

During the 2022 annual meeting of the American College of Rheumatology (ACR) Convergence, research on vaccine hesitancy uncovered the concerns of rheumatology patients who had not yet received the COVID-19 vaccine. Their primary worry revolved around the lack of available long-term safety data. Furthermore, the research revealed that among those who had received the initial vaccination but had not yet received a booster dose, the most prevalent reason cited was the absence of a recommendation from their health care provider.

Now, a new study, presented at ACR 2023, titled “COVID-19 Vaccine Uptake, Hesitancy, and Flare in a Large Rheumatology Practice Network,” looks into the factors contributing to COVID-19 vaccine hesitancy among patients with rheumatic diseases. Additionally, it explores the risk of disease-related flare-ups following vaccination in this population.

“We wanted to see what COVID-19 vaccine and booster uptake was like among patients with AIIRD compared to patients without these conditions, and what possible reasons for vaccine hesitancy might be,” says study author Kelly Gavigan, MPH, Director of Data Management and Analytics at the Global Healthy Living Foundation (GHLF). This data holds significant relevance because individuals with AIIRD “are at a greater risk of infection in general as well as COVID-19 related complications because of their conditions and the medications they take to treat their conditions,” she continues.

The study focused on rheumatology practices who were members of the Excellence Network in RheumatoloGY (ENRGY) practice-based network who treat patients with autoimmune and inflammatory rheumatic disease.

About the Study

Study participants completed a tablet-based survey that included questions about COVID-19 vaccine status and why they might not receive a vaccine or booster. Based on their answers, they were then asked more questions about why they did not get a vaccine, or their plans to get additional shots. This information was then analyzed to understand the differences between vaccination status and vaccine/booster hesitancy while also comparing AIIRD to non-AIIRD patients.

Key Findings on Vaccine Hesitancy

Out of the more than 61,000 participants in the study, 89 percent reported having received at least one dose of the COVID-19 vaccine, and 68 percent reported having received at least one booster shot.

Patients with AIIRD were found to be 32 percent less likely to have received the initial vaccine dose and 10 percent less likely to have received a booster shot compared to individuals without AIIRD. Among those who expressed hesitancy, their concerns primarily centered around safety (28 percent) and potential side effects (23 percent). The primary reason for booster hesitancy among this group was the absence of a recommendation from their health care provider.

It’s important to note that not all individuals who initially expressed vaccine hesitancy remained hesitant. Among those who were initially hesitant about receiving the vaccine, 12 percent ultimately went on to receive a dose, and for those who were initially hesitant about getting a booster shot, 39 percent later reported receiving one.

Gavigan encourages open conversation between patients and their providers about vaccination. “It’s important for patients with AIIRD to speak with their doctor about their vaccine concerns,” she says. “Among the people who were booster hesitant, the top concern was that they had not been told by their doctor to get a booster dose, so it’s also important that doctors are initiating these conversations with their patients as well.”

Key Findings on Disease-Related Symptoms Post Vaccine

The researchers also aimed to better understand the patient experience following a vaccination, specifically whether the vaccine triggered any disease-related symptoms. Among those who received the COVID-19 vaccine, 23 percent reported experiencing a flare-up of their disease. The study’s findings also revealed that there were no heightened odds of a flare-up or worsening symptoms observed, regardless of whether individuals had a rheumatic disease or not.

“It was encouraging to see from this data that AIIRD patients did not have an increased likelihood of reporting a flare or worsened disease activity after receiving a COVID-19 vaccine or booster compared to non-AIIRD,” says Gavigan, noting that concern about the vaccine causing a flare was a top concern among people who were hesitant about getting the vaccine.

What This Means for You

Research like this provides important information to improve future vaccination efforts to better understand and protect patients.

Talk to your doctor if you have questions about vaccine safety or efficacy. “Shared decision-making with your doctor is very important when it comes to vaccines among AIIRD patients,” says Gavigan. “It’s important for the patient and the doctor to talk through the pros and cons, the concerns, and the data so that a decision is made that is informed and best suits the needs of that unique patient.”

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Rheumatoid arthritis (RA) can be a challenging condition to manage due to its often unpredictable flares, which severely impact patients’ quality of life. It is nearly impossible for patients to schedule doctor’s appointments around these increases in disease activity because of the unpredictable nature of this disease. Therefore, it is crucial to develop ways to support patients outside of the clinical setting.

Telehealth, which become more common due to the pandemic, provides a way for patients to receive virtual care without having to visit the office in person. It’s important to note that telehealth is not accessible to all individuals. Some may lack the necessary technology or internet access, while others may face barriers related to health insurance coverage.

Additionally, remote therapeutic monitoring (RTM) has emerged as a way for patients and physicians to track daily and weekly disease activity and experiences related to their condition.

RTM typically requires that patients provide real-time data about their disease via metrics such as pain, fatigue, and physical activity on a consistent basis. This allows patients to monitor and track their experience and helps doctors determine disease progression and the need for additional support.

To further investigate the utility and feasibility of these tools in patient disease management, researchers at the Global Healthy Living Foundation (GHLF), in collaboration with partnering experts and institutions, conducted three studies, to be presented at the annual meeting of the American College of Rheumatology 2023 (ACR Convergence) in San Diego.

The first study, titled “Developing a Guided Joint Self-Exam for Rheumatoid Arthritis Patients to Use in Telehealth-Delivered Care,” involved creating a tool for RA patients to conduct a 28 tender and swollen joint count exam from home. The tool was pilot tested by RA patients who provided feedback to improve the success and ease of use. The hope is that this tool will provide a simple and accessible way for patients to perform this exam from wherever they are. “As we move further into the era of telehealth, we wanted to develop a patient-facing training video for patients so that they can perform a joint self-assessment and compare its accuracy with an in-person clinician joint exam (the gold standard),” said Kelly Gavigan, MPH, Director, Data Management and Analytics, at GHLF and co-author of the study.

To encourage the adoption of RTM, GHLF researchers explored the feasibility of collecting daily and weekly data to monitor RA patients starting on a new medication in a study titled “Patient Engagement and Adherence to Digital Study Tasks: WEARable Activity Tracker Study Exploring Rheumatoid Arthritis Patients’ Disease Activity using Patient-Reported Outcome (PRO) Measures, Clinical Measures, and Biometric Sensor Data.”

Over several weeks, they collected patient reported outcome (PRO) data from nearly 300 people with RA, with moderate or high disease activity who just started a new treatment. The PRO data included everything from disease flares to social activity experience, along with additional data from a wearable tracker.

Researchers determined that collecting weekly PRO data and daily wearable data was a feasible undertaking and did not present significant challenges for participants. However, it was observed that the daily collection of PRO data might be somewhat burdensome for some individuals due to the frequency of reporting. This study will help to better inform how this information can be used by patients to better monitor their disease outside of the doctor’s office.

“Importantly, when combined with clinical data the combination may provide a more holistic picture of overall disease,” says study co-author Laura Stradford, MPH, Epidemiology, Senior Project Manager, Patient-Centered Research, at GHLF.

The final study, titled “Use of Digital Health Tools to Evaluate Change in Clinical and Patient-Reported Outcomes Among Patients with Rheumatoid Arthritis Initiating Treatment with a JAKi or TNFi” aimed to validate the concept of RTM by comparing patients reported to clinician reported data for patients starting new medications for their RA. Researchers found that patient data corresponded with clinician data, demonstrating the useful tracking patient reported data for those starting new medications.

“Patient-reported data plays a crucial role in helping individuals who are starting new treatments take charge of their treatment journey and helping individuals who have already been diagnosed to stay on top of their disease. These validated measures can also provide great insight to clinicians when combined with clinical data especially on what matters most to patients,” says Shilpa Venkatachalam, PhD, Director, Patient-Centered Research Operations and Ethical Oversight.

This contributed to the growing body of literature supporting the ability and utility of tracking patient disease experiences outside of traditional doctor’s office visits.

Be a More Proactive Patient with PatientSpot

PatientSpot (formerly ArthritisPower) is a patient-led, patient-centered research registry for people living with chronic conditions. By joining, you can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and you can share this information with your doctor. Learn more and sign up here.

Osteoporosis is a condition that often occurs with age as you naturally start to lose bone mineral density and bone mass, which impacts the structure and strength of your bones. As a result, this condition increases the risk of broken or fractured bones. For some people, the first sign of osteoporosis is a bone fracture. Unfortunately, once you have one fracture, your chances of having another one (secondary fracture) increases.

Osteoporosis treatments can help protect and preserve your bone health. Some treatments aim to prevent further bone loss while others can even help build bone back.

In a recent study presented at The American College of Rheumatology (ACR) Convergence in San Diego, CA, researchers, including some from the Global Healthy Living Foundation (GHLF), look into what matters most to patients when it comes to osteoporosis treatment. They are using this information to build a treatment-decision making tool that will make it easier for patients to explain these preferences to their doctors. With this information at hand during a future appointment, patients and health care providers can work together to make shared decisions about which osteoporosis treatment is best for the individual patient.

The study, titled “Osteoporosis Treatment Attributes and Levels for an Online Decision-Making Tool for Patients: Findings from Adaptive Choice-Based Conjoint Analysis” was conducted in two parts.

For part one, researchers conducted a survey of more than 300 osteoporosis patients to gauge how they ranked the importance of six specific osteoporosis treatment attributes:

1. Efficacy to prevent spine fractures
2. Efficacy to prevent hip fractures
3. Way the osteoporosis medicine is given (e.g. orally, via injection, etcetera)
4. Risk of serious side effects
5. Time in between doses of medication
6. Risk of non-serious side effects

Researchers found that out of all six osteoporosis treatment attributes, the three most important attributes for surveyed patients were efficacy to prevent hip fractures (31%) followed by the way medicine is administered (17.5%) and the risk of serious side effects (16.6%).

According to Kelly Gavigan, Director of Data Management and Analytics at GHLF, and study researcher, the fact that the score is nearly double that of the other characteristics shows that people specifically want medication to protect from a hip fracture. Gavigan mentioned that patients’ strong preference for preventing hip fractures is revealing and could be for a variety of reasons — from hip fractures being one of most discussed fractures when learning about osteoporosis to patients viewing hip fractures as especially debilitating.

Responses to this survey informed part two of the study, in which patients participated in a refined version of the survey through an online osteoporosis treatment-decision making tool. The tool expanded the descriptions of the six treatment attributes. After the participants answered the tool’s questions, it generated a tailored report for each patient based on their responses about treatment attribute preferences.

When it comes to making treatment decisions, Gavigan emphasized the importance of patients being able to grasp their preferences based on what the medications can actually do. “We wanted to make sure the [medication] attribute [preferences] were not hypothetical,” she says. By doing so, the tool produces information for the patient that they can realistically use in conversation with their doctor about their preferences on real functions, effects, and methods of use of various osteoporosis medications.

The study’s findings are helping to improve the online tool, which will soon be widely available to osteoporosis patients.

What This Means for You

Understanding your osteoporosis treatment preferences is crucial and can help you take a more active role in your bone health. When you know what you value most in a treatment (and what is less important), you can have more meaningful conversations with your doctor. It’s not just about following advice; it’s about making choices together that fit your life. That’s the aim of shared decision making, and it can lead to a personalized treatment plan that not only protects your bones but also your peace of mind.

Stay tuned for more updates on the launch of GHLF’s treatment decision-making tool and visit GHLF’s StrongBonesAndMe.org site to learn more about osteoporosis, fracture prevention, and after-fracture care options.

Be a More Proactive Patient with PatientSpot

PatientSpot (formerly ArthritisPower) is a patient-led, patient-centered research registry for people living with chronic conditions. By joining, you can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and you can share this information with your doctor. Learn more and sign up here.

I’ll never forget the first time I connected with others who understood what I was going through when I was diagnosed with rheumatoid arthritis (RA). It was as if a weight had been lifted, and suddenly, I didn’t feel so alone. That moment made me realize that connecting with individuals facing similar challenges was a crucial step towards acceptance and finding solace amidst the emotional turmoil that followed my diagnosis.

Living with a rheumatic condition brings forth unique concerns, particularly related to mental and social health. Struggling with fatigue, anxiety, depression, and isolation while simultaneously coping with chronic pain and the challenges of being immunocompromised has been my reality since my RA diagnosis nine years ago.

The challenges imposed by the COVID-19 pandemic have exacerbated these concerns for individuals like myself, taking a significant toll on our overall well-being.

Recognizing the growing demand for support, I took the initiative to establish an in-person support group tailored for people with arthritis, with a focus on those aged 25 to 55, although we warmly welcome participants of all ages. This specific age group often lacks programs designed to cater to their unique needs.

With the generous backing of the Arthritis Society Canada’s Community Action Grant, and leveraging my experience and network as a patient advocate, I brought “The Arthritis Social Hour” to life. I’m proud to present my findings through a Patient Perspectives Poster entitled “You Can’t Get This From a Doctor – The Role of a Support Group for Young Adults with Rheumatic Disease” at the American College of Rheumatology (ACR) Convergence 2023.

The Purpose: Sharing Support, Knowledge, and Resources

The goal of this support group was to create a secure haven for individuals living with any type of arthritis. Here, they could freely voice their concerns, share their personal journeys, and gain insights from both peers and qualified professionals. All of this was achieved within a lively, comprehensible, and engaging setting.

Peer support groups, where individuals with arthritis can meet face-to-face, have proven to be a highly effective strategy in addressing the issues of anxiety and loneliness prevalent within our community.

The majority of my appointments are limited to just 20 minutes, which often falls short when it comes to having deep conversations about topics that are important to me. The opportunity to sit for two hours talking with other patients and professionals provided me with an invaluable amount of information and resources from my local community, which has broadened my abilities to self-manage my condition.

A key objective of The Arthritis Social Hour is to offer support to marginalized communities, including those in the LGBTQIA+ community, newcomers to Canada, Indigenous populations, individuals with low income, and those living with disabilities, all while dealing with their arthritis.

Our support group sessions featured an array of professionals, including yoga therapists, kinesiologists, physiotherapists, occupational therapists, registered dietitians, expressive arts therapists, rheumatologists, and a diverse group of patient advocates, each contributing their unique expertise and insights.

What I Did With The Grant

I successfully applied for and received the grant in both 2022 and 2023, securing a total of $10,000 CAD to fund a distinctive project.

Our sessions covered a wide range of topics, including exercise, art, parenting, COVID-19, Nordic Walking Poles, relationships, advocacy, yoga, nutrition, mental health, work, medications, and fatigue.

With the grant funds, we acquired various supplies, including exercise equipment, art materials, non-perishable food items, beverages, storage solutions, marketing materials, patient resources, and honorariums for our guest speakers.

The Response: You Can’t Get This From a Doctor

As individuals with lived experience, we share a unique language that can’t always be found elsewhere. Connecting with others who navigate similar experiences can lead to transformative moments in our journeys with arthritis. These connections foster a sense of belonging to a community that understands and empathizes with the challenges of living with arthritis, particularly among younger and middle-aged adults.

The impact of this support group has been significant. Some patients had never met others in their age range living with arthritis, including one individual who had been coping with RA for three decades. Additionally, some attendees had their first encounters with occupational therapists and physiotherapists during our sessions. These professionals offered valuable, long-term guidance on effectively managing arthritis and maintaining a healthy exercise routine.

Patients new to Canada, lacking previous connections and medical support for their arthritis, received valuable guidance on where to access care.

Guests were invited to complete an anonymous survey following their participation in The Arthritis Social Hour, where we gathered their feedback on the support group. The overwhelming majority of attendees had a highly positive experience, expressing feelings of enjoyment, satisfaction, and gratitude for the valuable opportunity to connect with others. Remarkably, all participants expressed their eagerness to attend The Arthritis Social Hour again.

As a result of the event, a significant percentage of those in attendance reported feeling more connected to the arthritis community. A small minority indicated they were still in the process of establishing those connections. Additionally, newcomers to Canada, who previously lacked connections and medical support for their arthritis, said they received valuable guidance on where to access care.

The key takeaways from the event included the reassuring realization that they are not alone in their journey, the recognition of the importance of exploring functional medicine, and the value of sharing experiences and perspectives through thoughtfully moderated discussions.

How It Helps Me

Hosting a support group reminded me how important it is for patients to connect with each other, to support each other, and learn together. Since hosting the event, I have been able to reduce my own feelings of isolation and loneliness as a person living with arthritis.

As a person living with arthritis, I often found that my appointments with health care providers are limited to short durations, insufficient for in-depth conversations about the topics that matter to me. The opportunity to spend two hours talking with patients and professionals has provided me with a wealth of information and resources from my local community.

The Arthritis Social Hour is now a growing monthly gathering, connecting more individuals in need of support. As a leading patient advocate, I am proud to witness the increasing popularity and impact of this group. It serves as a testament to the importance of patients connecting with each other, supporting one another, and learning together.

Be a More Proactive Patient with ArthritisPower

ArthritisPower is a patient-led, patient-centered research registry for people living with chronic conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.

A new study, “Social Listening Analysis of IgG4-Related Disease Social Media Discussions,” which is being presented at the annual meeting of the American College of Rheumatology 2023 (ACR Convergence) in San Diego, CA, is providing insight into the patient experience of those living with Immunoglobulin G4-Related Disease (IgG4-RD).

A rare chronic immune-mediated fibroinflammatory disorder, IgG4-RD can present itself in several ways, but some of the most common are tumor-like masses or painless enlarged organs. IgG4-RD can affect up to 10 to 12 organs. Depending on which organ(s) is affected, symptoms and disease activity may vary. Many patients go months to multiple years without any symptoms.

Despite the lack of symptoms, unrecognized organ damage can still occur, resulting in the need for immediate medical attention. It is often treated with glucocorticoids (prednisone), although rituximab is frequently used off-label as an investigational therapy that involves B-cell depletion. Several drugs are under clinical trial for IgG4-RD.

About the Study

The study, which was conducted by The Global Health Living Foundation and TREND Community, used machine learning to analyze underlying emotions behind words used by people participating in conversations on YouTube and Reddit from January 2017 to March 2023.

For YouTube, 314 words were analyzed across seven videos.

The words were limited to comments on videos specifically about IgG4-RD resulting from the search “IgG4-RD” or “IgG4-Related Disease.” The videos were primarily posted by rheumatologists, but also included verified accounts focused on providing videos about health topics, including but not limited to IgG4-RD. The nature of these videos was educational. They provided reliable information about the disease, including prognosis and treatment.

Analysis of Reddit conversations using the same search terms included two groups: posts and comments. Reddit analysis included eight posts, with 753 words from the original post, and 585 from the comments section of those posts. Those who submitted posts to the r/Autoimmune subreddit had either recently been diagnosed with IgG4-RD or sought information on getting a diagnosis.

Words were generalized into positive or negative sentiment. Within each sentiment, a word could be assigned one of four emotions.

Key findings on YouTube included:

• Just over half (53%) of words had a positive sentiment, with the emotion trust (37%) being the most frequent emotion associated with the words.
• Words such as advice and intelligence were words used multiple times that evoked positive sentiment.
• Other than trust, anticipation (25%) and joy (20%) were common positive emotions.
• The most common negative emotion was sadness — pain and suffering were a few words associated with the emotion.

Key findings on Reddit included:

• Among the 753 words on posts, 71 percent expressed negative sentiment — significantly higher than both YouTube and Reddit comments. Much of that was due to words like anxiety, discomfort, and irritation being frequently used to evoke emotions such as sadness (42%) and fear (34%).
• Reddit comments in response to these posts were similar in sentiment (51.5% positive) to that of YouTube.
• Trust was also the most frequently associated emotion (42%).

Trust emerged as the most common emotion across all platforms and groups. On YouTube, trust likely stemmed from patients having confidence in the individuals who published the videos, like rheumatologist or verified health accounts.

Trust on Reddit was related to finding a community of people with similar lived experiences. However, the negative emotions portrayed by those posting on Reddit while looking for this community demonstrates an urgent need for patient-centric information about the disease journey for those living with IgG4-RD.

What This Means for You

If you or someone you care about is living with IgG4-RD, it’s important to acknowledge that, compared to other autoimmune diseases, there are limited conversations that exist online. However, these findings are helpful in understanding how patients in the IgG4 community think and feel about their experiences.

“Social listening is a powerful tool for researching rare diseases because it allows us to tap into the collective wisdom and experiences of patients,” says co-author Kelly Gavigan, MPH, Director, Research and Data Science, at GHLF. “In the world of chronic illness, community is everything. It’s where we find understanding, support, and hope.”

The negative sentiments expressed in the Reddit posts suggest there is an unmet need in this community when it comes to resources available to guide them in their journeys. Specifically, patient-centered information about common symptoms, diagnosis, and treatment can help people living with IgG4-RD (and their loved ones) ease their fears and questions regarding how the disease can potentially affect their lives.

On the other hand, the positive sentiment found in YouTube videos underscores the value of the doctor-patient relationship in enhancing the patient experience.

“By considering both the negative and positive sentiments, we gain invaluable insights that will inform the development of patient-centered education and support materials,” says Gavigan. “We uncover valuable insights that can shape research, improve trust with providers, and ultimately, bring people with IgG4-RD closer to a better quality of life.”

The Health Advocates

Listen to Niki C. Beamon share her 17-year journey toward an IgG4-RD diagnosis on the latest episode of The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. Listen now.

Yaideliz Acevedo can vividly recall sitting in her doctor’s office with her one-month-old baby in his stroller, when her doctor said, “You have rheumatoid arthritis.” She was just 21 years old, and didn’t really know what that meant. Unfortunately, her primary care provider didn’t take the time to explain it to her.  

It wasn’t until she saw a rheumatologist for the first time that she realized RA was a big deal. Though he left the room before she could ask any questions about her condition. She was left without any guidance or support, so she made the choice to forgo the medication he prescribed, hoping that her condition would go away on its own. However, things got worse, to the point where she couldn’t take care of herself, let alone her son. 

Yaideliz was motivated to seek answers and take charge of her health. She began researching on her own, finding articles and personal stories on CreakyJoints.org and CreakyJoints Espanol that inspired her to take more control over her diagnosis. She connected with a new rheumatologist, who not only took her concerns seriously but also took the time to address her questions. For the first time, she felt heard. The rheumatologist stressed the importance of following the treatment plan, marking a significant turning point and sparking a desire to become proactive in her health care. 

Finding Her Voice

Now, five years later, Yaideliz is proudly presenting her poster “Finding Gratitude in Adversity: The Impact of Finding the Right Rheumatologist” at the 2023 American College of Rheumatology (ACR) Convergence in San Diego, California.  

Through CreakyJoints, she discovered patient advocacy opportunities and ArthritisPower, a patient-centered research registry now called PatientSpot.  

Inspired to be a voice for others facing similar challenges, she embraced the chance to advocate for the rheumatoid arthritis (RA) community. Yaideliz became a Patient Governor with the Global Healthy Living Foundation to represent the needs of other patients and to take part in discussions about research.  

By fostering a closer relationship with her doctor, she gained better control over her flares and realized that a fulfilling life with this disease was possible. Lifestyle changes and the insights she gained from her experiences allowed her to manage her RA effectively. 

With more control over her health, Yaideliz can now take care of her child while pursing her career as a certified medical assistant at a cancer facility and master’s degree in psychology.  

Representing Other Patients at a National Conference

Here, we talk with Yaideliz about her experience submitting a patient poster for ACR and what she hopes others will take away from her learnings. 

CJ: Tell us about your poster.
Yaideliz: “It’s a tool I wish I had when I was first diagnosed. I wish someone could have guided me and let me know that it’s ok not to feel ok. I found my voice. It’s the reason why I reached out to learn about my diagnosis.”  

CJ: Why was this topic important to you?
Yaideliz: “I want others to know they’re not alone. There are resources. I felt like I wasn’t heard because I was so young. It’s important to find your voice. Just because a doctor is a professional, it doesn’t mean they are the right professional for you.”  

CJ: Why is it important to showcase this poster at a forum like ACR?
Yaideliz: “To the rheumatologists out there: Listen to your patient. You are there for your patients. One patient is not the same as the next. Each patient is different. Some doctors are not used to seeing patients so young. It’s important for doctors to make their patients feel like they have a voice in their care.” 

CJ: What are you most looking forward to at ACR?
Yaideliz: “I’m looking forward to hearing and reading about other patients’ stories and being part of meeting new people, socializing. Seeing it come to life is very exciting.” 

Key Takeaways to Gain More Control of Your Health

Yaideliz has advice for anyone newly diagnosed — and especially younger — who feel their doctor may not be the best match.  

• Don’t let your age define your disease. In the first few months, Yaideliz was in denial. She believed she would recover on her own at 21. However, her condition worsened, almost leading to hospitalization due to delayed treatment.
• Advocate for yourself. “The decisions about your treatment plan should be made with your doctor, not by your doctor.”
• Ask questions. If you feel like something is not settling right at the doctor, ask questions. “When I was first diagnosed, I was made to feel like only the doctor had the knowledge and I didn’t know anything,” says Yaideliz. 
• Don’t be afraid to change your doctor. “You can find someone who works for you,” she says. 

Be a More Proactive Patient with ArthritisPower

PatientSpot (formerly ArthritisPower) is a patient-led, patient-centered research registry for people living with chronic conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.

Fifteen years ago, patient advocate Vanessa Patino Lydia, PhD, received diagnoses of psoriatic arthritis (PSA) and fibromyalgia. Then, over a decade later, she was diagnosed with non-radial axial spondyloarthritis, following a severe flare-up that significantly affected her mobility, making it challenging to navigate stairs, enter or exit a car. This diagnosis had a profound impact on her quality of life, leaving her with a pessimistic view of the future. 

Vanessa turned to complementary techniques, alongside medical treatments, to help alleviate her symptoms. She tried meditation, massage, journaling, and aqua therapy. She even made career adjustments, reduced commitments, and switched up her diet to cut out gluten and sugar.    

While these complementary approaches were beneficial, the profound transformation occurred when she shifted her mindset…“ I made a mental shift from thinking of my condition as ‘something I have to fix or change’ to ‘something that I have to make peace with,’” says Vanessa. 

Using Mindfulness Does NOT Imply Your Symptoms Are All in Your Mind

On the recommendation of both her rheumatologist and a trusted friend, Vanessa enrolled in a Mindfulness Based Stress Reduction (MBSR) class. She took the course, which typically takes eight weeks to complete, over six months, taking her time to observe the changes in her quality of life. 

She tested many aspects of mindfulness along the way by watching videos, reading, reflecting, and practicing the following activities: 

• Body scanning and breathwork 
• Building awareness and slowing down 
• Perspective changing 
• Responding vs. reacting 
• Not judging, self-love (loving kindness) 
• Individualized choice 
• Asking for what I need from family, from doctors 

Mindfulness allowed her to accept her body and live in the present, reducing fear about the future. Vanessa emphasizes that mindfulness is a coping strategy, not a cure, and it has helped her navigate the emotional aspects of chronic illness.  

She wants to advocate for mindfulness as a tool for others who need to connect with their bodies and hopes that rheumatologists will recognize its value in improving patients’ quality of life. Vanessa will present her story at the American College of Rheumatology (ACR) Convergence in San Diego, CA, where she plans to bring mindfulness to the forefront for rheumatologists and other patients with chronic conditions.  

Her poster “Practicing Mindfulness to Improve Quality of Life” showcases how she became more aware of how she uses tools she practices to cope with life’s stressors. She will also present her research to her fellow peers in the Patient Governor group, which consists of patients representing the diverse backgrounds, perspectives, and experiences of the CreakyJoints Community. 

“It is important for providers to acknowledge that pain is part of chronic illness and that mindfulness strategies can ‘help cope’ with the pain,” says Vanessa, adding that mindfulness does not implying that pain is all in the mind and, therefore, mindfulness/therapy can “fix” your mind.  “I do not want patients to feel shamed or blamed like they wouldn’t feel pain if they did more of XYZ…It is part of my treatment plan. It’s a coping strategy.” 

In Her Own Words

Here, we talk with Vanessa about her experience submitting a patient poster for ACR and what she hopes others will take away from her learnings: 

CJ: Tell us about your poster.
Vanessa: “I do a lot of reading and research. I wanted to know what strategies could help me to connect with my body. A very close friend who passed away was a real proponent of mindfulness. My rheumatologist has a very holistic approach and asked about trying mindfulness. I took the course; I took my time. It was part of a New Year’s resolution. I wanted to show what changed in my quality of life in terms of how I was navigating myself through the world. The poster is a replication of what some of the strategies are and observationally what changed. Mindfulness is about accepting where you are and living in the present — and when you live in the present, the future isn’t as scary.”  

CJ: Why was this topic important to you?
Vanessa: “I want to advocate for mindfulness for people who need tools and strategies to connect with their body. It may work best for people who have done some work on themselves already. It has helped with the grieving that chronic illness creates.”  

CJ: Why is it important to showcase this poster at a forum like ACR?
Vanessa: “First, it’s important for rheumatologists to see these complementary strategies and know that they can share these resources. They need to see that some people have tried mindfulness and it could be an option for patients. Second, I want my poster to be seen as an education component for rheumatologists to see that quality of life is more than clinical. There’s more than just the physical aspects of chronic illness — there’s the emotional component. If we don’t acknowledge that, it is a disservice to patients.   

Using Mindfulness When You Live with Chronic Illness

Here are a few lessons Vanessa learned along the way about mindfulness.

• Connect with your body. “Meditation is less about fixing something but it’s more about befriending your body,” she says. “It’s about being able to see the bigger picture and feel less isolated.” 
• Advocate for yourself. “When you see yourself differently, you can say ‘no’ intentionally and consciously.” 
• Use it as coping strategy. “Mindfulness helps you cope with chronic illness. Mindfulness is not a cure, rather it’s a means of coping with chronic illness and bringing your body back into the present.” 
• Make it a practice. “If you practice mindfulness, you’re making a choice to strengthen the connection between your body and yourself,” she explains. “Mindfulness helps with many aspects of stress.”  
• Expand your toolbox. “I still wake up in pain” says Vanessa, “but now the difference is I have better tools because of practicing mindfulness exercises. It makes me more aware to be able to connect with my body to bring me back to the present. The 45-min body scan — it’s like a detox. It feels like a full-on cleansing.”  

Be a More Proactive Patient with ArthritisPower

ArthritisPower is a patient-led, patient-centered research registry for people living with chronic conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.

Almost 12 years ago, following my rheumatoid arthritis (RA) diagnosis, I clung to the hope that the initial biologic disease-modifying antirheumatic drug (DMARD) would halt the progression of my RA and ease my symptoms.  

Over the next decade, I embarked on a medication-switching journey in search of better options, often using corticosteroids between biologics to maintain a reasonable quality of life. This path led to rapid and persistent weight gain, accompanied by gastrointestinal issues like microscopic colitis. However, a diagnosis of non-alcoholic fatty liver disease (NAFLD) was the turning point that led me toward a healthier lifestyle. 

It felt like good timing when ACR released the 2022 American College of Rheumatology (ACR) Guideline for Exercise, Rehabilitation, Diet, and Additional Integrative Interventions for Rheumatoid Arthritis. In the guideline, a Mediterranean-style diet is conditionally recommended for those with RA as a means of decreasing inflammation that can cause pain and discomfort. I decided to embrace this nutritional plan and meticulously track my symptoms along the way. 

Since 2015, I’ve been monitoring my pain, sleep, and fatigue through the ArthritisPower app (now called PatientSpot). In 2020, amidst increased isolation due to moving and the onset of the pandemic, I also began tracking my satisfaction with social activities.  

Managing celiac disease and intolerances already required a gluten-free and dairy-free diet, but in January 2023, I noticed discomfort after consuming high-inflammatory foods like processed foods. I decided to make an additional dietary change. I switched to a Mediterranean-style diet, and began tracking my pain, fatigue, and sleep.  

I’m proud to present my findings through a Patient Perspectives Poster entitled “Saved by Plants: How a Necessary Lifestyle Change Led to a Happier Life with Decreased Rheumatoid Arthritis Pain and Fatigue” at the American College of Rheumatology (ACR) Convergence 2023. 

What Is a Mediterranean-Style Diet?

The emphasis of this type of diet is on the intake of vegetables, fruits, nuts, seeds, whole grains, and olive oil, with moderate amounts of low-fat dairy and fish. It requires the avoidance of added sugars, highly processed foods, sodium, refined carbohydrates, and saturated fats. 

A week into adopting the Mediterranean diet, I experienced significant transformations in my body: increased energy and reduced fatigue. Over a four-month period, the results were striking: my pain, fatigue, and sleep disturbances notably decreased. What’s more, my motivation to connect with friends and engage in social activities significantly improved. 

Focusing on a diet rich in healthy fats while avoiding inflammation-triggering foods has been instrumental. Prior to this dietary change, I felt unwell, even though inflammation markers like C-reactive protein (CRP) and erythrocyte sedimentation rate were at their lowest. I learned that relying solely on blood work doesn’t provide the full picture. 

Overall, adhering to this diet has led to significant enhancements in my quality of life. I have normal liver levels, increased energy, reduced fatigue, less pain, and a greater willingness to socialize with family and friends.  

Key Takeaways

I learned that managing RA involves more than just effective medications; patients may also need to make lifestyle adjustments to complement their treatment plan. And having a visual representation of my overall health — including my dietary changes — can help me better communicate to my doctor whether my meds are working effectively.  

 Here are a few more tips I’ve learned through switching my diet and tracking my symptoms:  

• Use a panoramic view of your health. Take a birds-eye view of your treatment plan and think beyond medications. The nutritional changes I made did not replace my medications, exercise, or other aspects of my treatment plan, but adjusting my diet was a missing piece to support refining my health goals. 
• Seek support from others. As you embark on a new nutritional routine, it’s helpful to have allies who are in your court.  
• Hit the reset button. If you get off track, it’s relatively easy to get back on. I recommend having a meal every now and then that includes food choices outside of the plan to avoid binging on high-fat foods.  
• Know the purpose of your nutritional plan. The Mediterranean-style diet is strong in healthy fats, but it is not necessarily a “weight-loss diet” so daily exercise and eating in moderation is important if weight is a concern.  
• Access to fresh fruits and vegetables is not accessible to all. I’ve been growing my own vegetables and hitting the farmer’s markets as often as possible. Fresh fruits and veggies are not cheap. Frozen fruits and vegetables work well, too, so consider these options when searching for produce. 

Be a More Proactive Patient with ArthritisPower

ArthritisPower is a patient-led, patient-centered research registry for people living with chronic conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.

When Ashley, 39, was diagnosed with psoriatic arthritis (PsA) nine years ago, she believed her running days were over. Her love of running, which had been with her since high school, was a cherished part of her daily routine, providing mental clarity and physical vigor. With a family history of heart disease and diabetes, consistent exercise was important to Ashley. 

However, PsA brought painful joint inflammation, seemingly dashing her hopes of continuing her running routine. Her rheumatologist recommended gentler activities like yoga and tai chi, which she incorporated into her routine.  

Still, Ashley missed the feeling of running and the “runner’s high” it provided, so she set out to find a way to run that wouldn’t tax her joints. After conducting extensive online research, she discovered run-in-place exercises on a rebounder, a mini trampoline that offered reduced impact on her feet, ankles, knees, and hips. Eager to determine if this approach could replicate the benefits of regular running, she purchased a rebounder and began practicing.  

As she grew more comfortable with running in place, she expanded her rebounder workout to include exercises like jumping jacks and squats. She also designed a high-intensity interval training (HIIT) routine using a free Tabata timer app. 

Ashley shared her rebounding routine with her rheumatologist, who approved it, encouraging her to wear proper running shoes on the rebounder, stay hydrated, pay attention to her body’s signals, and adjust her pace as needed. Through these efforts, Ashley successfully reintroduced running into her life without causing additional stress to her joints. 

In terms of maintenance, she gradually incorporated weights and core training into her regimen. She also extended the duration of her HIIT routine and included yoga and Pilates on a weekly basis. Her future plans involve increasing the duration of her HIIT routine and using heavier weights. 

Ashley was finally able to get back the joy of running she cherished before her PsA diagnosis. “You get a good cardio rush from it,” she says.   

The rebounder also offered Ashley a sense of control over her body, even as PsA continued to introduce new challenges. “My rebounder taught me that I could still have autonomy over my body, even when PsA continues to occasionally surprise me with new physical and mental disruptions,” she says.  

Now, Ashley is excited to present her routine in her poster “Bouncing Back: How I Found My Running Shoes Using a Rebounder for My Psoriatic Arthritis” with other patients and providers at the 2023 American College of Rheumatology (ACR) Convergence. 

What Ashley Learned That Could Help You Too

Here, we talk with Ashley about her experience submitting a patient poster for ACR and what she hopes others will take away from her learnings: 

CJ: Tell us about your poster.
Ashley: “At the core, it’s about finding an exercise routine that is fun, that you can enjoy, and that gives you a decent workout with low impact on joints. I can involve my whole body and not feel the impact on my joints from it.

CJ: Why was this topic important to you?
Ashley: “Exercise is so important for people with autoimmune conditions — we are always told “motion is lotion” but to go low impact. There are people who don’t have access to swimming or to take a brisk walk around the neighborhood. Some people cannot do that due to weather conditions and safety issues. You can still get a good cardio workout that’s moving your muscles that’s low impact. It helps with core, too.”

CJ: Why is it important to showcase this poster at a forum like ACR?
Ashley: “A lot of times we get a linear focus so doctors won’t have a lot of time to coach patients on proper nutrition and proper exercise. When health professionals suggest walking or swimming, those activities require people to plan for these activities. It’s not feasible for everyone to be able to get out the house all of the time. I hope this is more accessible than swimming or just a brisk walk might be. I hope it helps others think outside of the box of things we already know.” 

Key Takeaways for Exercising with Chronic Illness

Here are a few more lessons Ashley learned along the way about exercising with PsA.

• Create a balance of workouts. Ashley was consistent with the rebounder but not as consistent with yoga and Pilates, and now she’s noticing her flexibility has diminished somewhat. “The combination is necessary to build flexibility and stretch muscles,” she says. 
• Balance the types of exercises you do. Switch up your routine with a combination of practical exercises that meet your needs. Ashley avoids redundancy by varying her workouts with Pilates, yoga, walking, weightlifting, and using a rebounder trampoline. 
• Be creative in your routine and have fun. “It’s really about what you’re comfortable doing but also pushing yourself a little outside of your comfort zone,” she advises. “Running on a treadmill could be boring so find that exercise passion.”
• Choose how you manage your health. “I hope people see that even though you have this chronic illness and you’ll live with it forever, you can choose how to manage it,” she says. “You might not be able to do everything exactly as you did prior to your diagnosis, but you can adapt. Resilience is hard to maintain with a chronic illness.” 

Be a More Proactive Patient with ArthritisPower

ArthritisPower is a patient-led, patient-centered research registry for people living with chronic conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.

FOR IMMEDIATE RELEASE  

MEDIA CONTACT

Susan Jara

Phone: 201-406-7756

Email: sjara@ghlf.org

UPPER NYACK, N.Y.–(BUSINESS WIRE)–ESI and CVS Health continue to expose hundreds of thousands of patients to the risks of taking medicines their doctor did not prescribe, according to an existing peer-reviewed and updated study, and new research by the Global Healthy Living Foundation (GHLF).

The updated research found that more than half the exclusions (57%) had questionable medical or economic benefits for patients. The original peer-reviewed research and its update, which is not yet published, focuses on ESI, the second largest pharmacy benefit manager in the United States.

The new study includes CVS as well as ESI and looks at three drug classes — cardiovascular, neurologic, and dermatologic — to try to further quantify the number of potential patients harmed when drug availability is restricted, a practice known as formulary exclusion.

Profits Over Patients

“All studies exposed concerning trends in pharmacy benefit manager (PBM) formulary exclusions that prioritize more profitable drugs rather than those originally prescribed — putting profits over patients’ well-being and underscoring the need to enhance transparency and accountability in health care,” said lead author Robert Popovian, PharmD, MS, Chief Science Policy Officer at GHLF, Senior Health Policy Fellow at the Progressive Policy Institute, and Visiting Health Policy Fellow at the Pioneer Institute.

“Formularies were originally meant to help patients get cost-effective treatments and generic equivalents, but now they prioritize PBMs’ profits through rebate contracting schemes, often mandating substitution with a non-equivalent medication,” Mr. Popovian added.

“This means patients may not get the best treatment options, leading to mortality, morbidity, or worsening in quality of life.”

Co-author Anne M. Sydor, PhD, Director of Research Development and Communications at GHLF, said “We know that when certain medicines are excluded, it affects hundreds of thousands of patients, making them sicker and sometimes even putting their lives at risk. This forced switch to different medications also adds to the challenges patients and their caregivers face, and it ends up costing more for everyone involved in health care — patients, caregivers, employers, and the government. Ensuring that the well-being of patients takes precedence over corporate profits in health care decision-making is a paramount concern.”

For Catherine Hicks, who lives with JIA and epilepsy, formulary exclusions have stopped progression of care and needlessly worsened her condition. “Formulary exclusions almost killed me,” she said.

“Being without my medication that we knew worked, and going through the process of appeal and starting stop-gap measures such as steroids and trying other medications, made me extremely ill and landed me in the hospital for 10 days with acute pneumonia that teetered briefly into sepsis.”

For more information about these studies, please contact the lead author, Dr. Robert Popovian (rpopovian@ghlf.org).

GHLF will host a webinar concerning formulary exclusions and their impact on patients on November 9 at 12 pm EST. Click here to register.

About Global Healthy Living Foundation

The Global Healthy Living Foundation is a 501(c)(3) nonprofit organization whose mission is to improve the quality of life for people with chronic illnesses (such as arthritis, osteoporosis, migraine, psoriasis, inflammatory bowel disease, and cardiovascular disease) by advocating for improved access to health care at the community, state, and federal levels, and amplifying education and awareness efforts within its social media framework. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the international digital community for millions of arthritis patients and caregivers worldwide who seek education, support, activism, and patient-centered research in English and Spanish through our ArthritisPower® (ArthritisPower.org) Research Registry. In response to the COVID-19 pandemic, GHLF started a Patient Support Program, informed by a patient council made up of people living with a wide range of chronic illnesses, that now serves more than 46,000 subscribers. Via CreakyJoints, GHLF also hosts PainSpot (PainSpot.org), a digital risk-assessment tool for musculoskeletal conditions and injuries, eRheum (eRheum.org), for telehealth and virtual-care support, and a constantly refreshed library of podcasts via the GHLF Podcast Network. Visit ghlf.org for more information.