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CreakyJoints Launches ArthritisPower Español

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CreakyJoints Launches ArthritisPower Español

FOR IMMEDIATE RELEASE  

MEDIA CONTACT

Jessica Daitch

Phone: 917-816-6712

Email: [email protected]

 

Free App Will Help Spanish-Speaking Patients Track Their Disease and Participate in Research, Thereby Increasing Understanding of Health Disparities and Pointing to Unmet Treatment Needs

UPPER NYACK, NY (May 3, 2021) – CreakyJoints®, the multi-cultural digital arthritis community for patients and caregivers worldwide and part of the Global Healthy Living Foundation (GHLF), today announced the availability of ArthritisPower® Español, a patient-centered research registry entirely available in Spanish for people living with joint, bone and inflammatory skin conditions, like arthritis. The COVID-19 pandemic shined a much-needed spotlight on health disparities in Hispanic communities (among others), but multiple inequities and inequalities facing Spanish-speaking communities predate the pandemic, including adequate access to healthcare and information. Hispanics are also under-represented in medical research. ArthritisPower Español invites Spanish speakers, many of whom self-identify as Hispanic, to proactively participate in their disease management and contribute to better understanding of people living with arthritis and other inflammatory disease.

“It’s incredibly exciting to offer ArthritisPower Español to our Spanish-speaking community,” said Daniel Hernandez, MD, Director of Medical Affairs and Hispanic Outreach, CreakyJoints Español. “We know that engaged patients – those who are educated about their disease and participate in shared decision making with their providers – have improved health outcomes. ArthritisPower Español is an easy-to-use tool that will help patients monitor the aspects of their disease most important to them and  discuss their data with their doctors.”

Available as a free mobile and desktop application, the ArthritisPower Research Registry first launched in 2015 and now includes more than 30,000 people who track their experience of rheumatic, musculoskeletal and other inflammatory diseases using the same Patient Reported Outcome (PRO) measures used in their health care provider’s office. Patients can select from dozens of PROs to track – ranging from pain, fatigue, physical function, and more – and share such data directly with their doctor. They can also participate in voluntary research studies. Results from previously conducted ArthritisPower studies have been presented at U.S. and international medical meetings and published in peer-reviewed journals. Launching ArthritisPower Español is a deliberate investment by CreakyJoints and their parent organization, the Global Healthy Living Foundation, to encourage people most comfortable communicating in Spanish to proactively contribute to their health data to improve their personal and community understanding of arthritis.

ArthritisPower Español Available to Millions

The latest data available by the Centers for Disease Control and Prevention state that 4.4 million Hispanic Americans live with some form of doctor-diagnosed arthritis. While the prevalence of arthritis among Hispanics is less than non-Hispanic whites, they are nearly twice as likely to become disabled from arthritis and experience joint damage. More than a disease of older adults, arthritis affects millions of people who live with its inflammatory forms, like rheumatoid arthritis,  onset of which can start at any age.

“I’ll be encouraging my patients to download the ArthritisPower app because I want them to select PROs to track that are important to their treatment goals and take advantage of other built-in tools, such as the medication tracker and diary notes where a patient can log anything that may been going on in his/her life that triggered some sort of response, such as taking a vacation or starting a new medication,” says Juan Maya, M.D., a rheumatologist with Rheumatology Center of Palm Beach and a medical advisor to CreakyJoints Español. “The more a patient learns about and understands their arthritis, the better we can collaborate to build an actionable and effective management strategy.”

“Given what we know of the health disparities experienced by Hispanics in the United States, their collective data will be a powerful tool to inform researchers and health providers about the needs of this specific population of the arthritis community,” said Shilpa Venkatachalam, PhD, who is the Associate Director, Patient Centered Research, at CreakyJoints® and the Global Healthy Living Foundation and is a coprincipal investigator of the ArthritisPower® Patient-Powered Research Registry. “We’re excited about expanding the reach of the ArthritisPower Research Registry and look forward to welcoming Spanish-speaking members to our research community.”

Select ArthritisPower Español participants will be invited to join the existing ArthritisPower Patient Governor Group, which is responsible for co-evaluating research study requests in collaboration with clinicians, researchers and CreakyJoints and also contributes perspective on what research questions should be asked in the future in ArthritisPower.

“Part of our mission is to provide patients with opportunities to amplify their voice and feel heard,” said Louis Tharp, executive director and co-founder of CreakyJoints. “We look forward to seeing the continued growth of ArthitisPower, which began with infrastructure funding from the Affordable Care Act’s Patient Centered Outcomes Research Institute, and for users to benefit from the data they collect and share with their provider team.”

Created by CreakyJoints®, ArthritisPower® is the first-ever patient-centered research registry for joint, bone, and inflammatory skin conditions, as well as arthritis and rheumatological manifestations of gastrointestinal-tract (GI) conditions. With tens of thousands of consented arthritis patients, the free ArthritisPower mobile and desktop application allows patients to track their disease and participate in voluntary research studies in a secure and accessible manner. Results from ArthritisPower studies are frequently published in peer-reviewed journals and presented at medical meetings in the United States and around the world. ArthritisPower Patient Governors serve as gatekeepers for researchers who seek to access registry data or solicit the community to participate in unique, voluntary studies. To learn more and join ArthritisPower, visit ArthritisPower.org.

CreakyJoints® is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients in English and Spanish through our popular social media channels, our websites, and the 50-State Network, which includes more than 1,600 trained volunteer patient, caregiver, and health care activists.

Part of the Global Healthy Living Foundation, CreakyJoints also has a voluntary patient-reported outcomes registry called ArthritisPower® (ArthritisPower.org), which includes tens of thousands of consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints publishes the popular “Raising the Voice of Patients” series, which offers downloadable patient-centered educational and navigational tools for managing chronic illness. It also hosts PainSpot (PainSpot.org), a digital risk-assessment tool for musculoskeletal conditions and injuries, and eRheum (eRheum.org), for telehealth and virtual-care support. All programming is free, always. For more information and to become a member, visit CreakyJoints.org.

Find us online:

CreakyJoints: CreakyJoints.org

CreakyJoints Español: CJES.org

CreakyJoints Australia: CreakyJoints.org.au

CreakyJoints Canada: CreakyJoints.ca

Global Healthy Living Foundation: ghlf.org

Facebook: facebook.com/CreakyJoints & facebook.com/GlobalHealthyLivingFoundation

Twitter: @GHLForg, @CreakyJoints, #CreakyChats

Instagram: @creaky_joints, @creakyjoints_aus, @creakyjoints_esp

TikTok: globalhealthylivingfnd

LinkedIn: linkedin.com/company/ghlf

New Global Healthy Living Foundation Publication Shows Existing State-Level Step Therapy Legislation Fails to Protect Most Patients

FOR IMMEDIATE RELEASE

MEDIA CONTACT

Jessica Daitch

Phone: 917-816-6712

Email: [email protected]

Insurer Profit Goals Prohibit Doctor-Prescribed Treatments 

 

UPPER NYACK, NY (April 27, 2021) – Today, the Global Healthy Living Foundation (GHLF) announced a newly published study reporting that despite a well-intentioned investment of time and money to advocate, state-by-state, for protective, patient-centered step therapy laws, the resulting legislation generally protects less than 10 percent of state populations. Further dampening the impact of these laws are a lack of codified penaltiesmeaning that most of these laws cannot be enforced. The Health Economics Policy and Law peer-reviewed study titled “Do Patients Benefit From Legislation Regulating Step Therapy?” is the result of Global Healthy Living Foundation analysis of the structure and language of step therapy laws in 29 states. 

Despite most insurance companies employing step therapy to manage costs, there is no evidence that it improves patient outcomes and, certainly, patients see no cost savings. Rather, patients risk much when their access to prescribed medications is delayed as they wait to “fail first,” trying medications in an order determined by their insurer versus their doctor,” said lead study author Louis Tharp, executive director and cofounder of GHLF. “It was incredibly frustrating to learn that our success working with many other patient and provider groups to advocate for improved step therapy regulations did not meaningfully help our patients. The laws cover too few people and, in many states, are unenforceable because the laws lack penalties, thereby removing any incentive for insurance companies to cooperate. Yet, step therapy is too harmful to patients for us to simply give up. We’ll be going back to the states’ lawmaking bodies to connect with legislators – one by one, if needed — to educate them about why these laws need to be revised.” 

Zoe Rothblatt, MPH, the study co-author, added that “many patients and physicians are not aware of laws that could protect them and insurers are not informing them of their rights when they force patients to fail first.” 

Laws Rendered Moot the Moment They Are Enacted 

As explained in the study, although no state prohibits step-therapy protocols by insurers, 29 states now have laws requiring a process that helps healthcare professionals protect their patients from step-therapy protocols by detailing a list of exemptions that insurers are required to accept. Some of the most common exceptions are obvious but needed to be codified into law because insurers were ignoring them. They include: because a patient has already tried and failed on a firststep drug, the drug is expected to be ineffective by the physician, or the drug will likely cause adverse reaction or harm (to name three). However, the laws vary widely statetostate and provide little protection in practice.  

  • Only six states cover all of the six most common reasons for requesting an exemption; California and Oregon cover none, and Missouri, Arkansas, and Colorado cover only one.  
  • In 10 states, there is no appeal process if an exemption is denied, further weakening these laws.  
  • Some states impose specific time periods within which the insurer must respond, but in nine states, insurers or PBMs have no obligation to respond, at all, making the law meaningless. 
  • In California and Mississippi, because the law states that step therapy that is not clinically effective shall not last longer than 60 or 30 days, the law in practice allows step therapy for a period of time when harm may still occur.   

In addition to the laws lacking teeth, they cover only a small portion of Americans in each state, those who purchase state-regulated health plans. With that in mind, about half of all Americans are covered by employer insurance and employer-provided health plans are under the purview of federal Employee Retirement Security Act of 1974 (ERISA), meaning these cannot benefit from the protection of state step therapy laws. Medicaid covers around another 20 percent, but only seven states include protections for Medicaid beneficiaries under the step therapy legislation and the lack of procedures to enforce the laws, combined with copious paperwork and work requirements, further diminish the benefit.  

Fully insured employees who would ordinarily benefit from state step therapy legislation (unless specifically excluded as in Kansas) may not be protected because of territorial prerogatives and it cannot be assumed that everyone in a fully insured plan is protected by state step therapy laws. Therefore, when considering fully insured, the percentage of state residents covered by state step therapy laws ranges from thirteen percent (North Carolina) to 27 percent (California) for fully insured beneficiaries. In the few states where Medicaid is accounted for, protections range from 14 percent (Kansas) to 34 percent (New Mexico)On average, revised step therapy legislation covers those with nongroup insurance who make up less than 10 percent of state residents. The state with the potentially highest proportion of people protected (~33.6%), California, is one of three states with the weakest step-therapy laws.  

It’s time to shine light on how these insurance protocols are negotiated – secretly – between the pharmaceutical manufacturers, the pharmacy benefit managers and insurers, and, then, enact new laws or revised laws on both the state and federal level to protect patients no matter which of our 50 states or territories they reside, added Steven Newmark, JD, MPA, Director of Policy and General Counsel of the Global Healthy Living Foundation. “In 2021, we hope that the Biden administration will usher in a new bipartisan effort in Congress to help patients mired in step therapy and barrierinducing protocols better access needed medications. A federal law like U.S. Senate bill S.464 (The Safe Step Act) would eliminate the national network of holes in step therapy laws, and uniformly protect patients from this unhealthy policy,” Newmark added. 

In the meantime, Global Healthy Living Foundation recommends that patient and provider groups continue efforts to reform step therapy by:  

  • Committing resources to rule-making assistance for existing state laws, including deploying subject matter experts to consult on revisions to existing laws.  
  • Educating patients, healthcare professionals, social workers, employers, and state government administrators about existing laws to keep legislation from becoming unknown and unused. 
  • Sharing model legislation, such as that created by the Physicians Research Institute (2019), to help legislators shape effective step-therapy regulatory legislation and reduce the cost of advocacy for state laws in those states that do have them yet. 
  • Recommending infrastructure to audit compliance and patient benefit from existing and tobecrafted step therapy legislation.  
  • Engaging in patient-centered medical research projects to create patient-reported outcomes data that provides an objective assessment of patient benefits related to step therapy. 

GHLF will also support the Safe Step Act, first introduced in the 115th Congress (2017-2018)to amend the Employee Retirement Income Security Act of 1974 to require a group health plan or health insurance coverage offered in connection with such a plan to provide an exceptions process for any medication step therapy protocol, and for other purposes.”  

Fail First Puts Patients and Providers Last 

Used to enhance insurer profits, step therapy is the most commonly used coverage restriction for specialty drugs, the kind often used by patients living with serious, chronic conditions. In a step-therapy “fail first” protocol, a person must have tried and found ineffective one or more therapies that the insurance company considers the first-step before they will be reimbursed for a medication considered to be a second or higher step. Steps are based on medication payment negotiations between the insurance company, pharmacy benefit managers, and manufacturers. Therefore, the patients and physicians are not the primary decision makers regarding which medications are accessible, insurance companies are.  

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 digital community for millions of arthritis patients and caregivers worldwide who seek education, support, activism, and patient-centered research 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 30,000 people. Via CreakyJoints, GHLF also hosts PainSpot (PainSpot.org), a digital risk-assessment tool for musculoskeletal conditions and injuries, and eRheum (eRheum.org), for telehealth and virtual-care support. Visit ghlf.org for more information. 

Find us online 

Global Healthy Living Foundation: ghlf.org  

CreakyJoints: CreakyJoints.org 

CreakyJoints Español: CJES.org  

CreakyJoints Canada: CreakyJoints.ca 

CreakyJoints Australia: CreakyJoints.org.au 

Facebook: facebook.com/CreakyJoints & facebook.com/GlobalHealthyLivingFoundation 

Twitter: @GHLForg, @CreakyJoints, #CreakyChats 

Instagram: @creaky_joints, @creakyjoints_aus, @creakyjoints_esp 

TikTok: globalhealthylivingfnd 

LinkedIn: linkedin.com/company/ghlf  

Global Healthy Living Foundation Urges Patients To Keep Their Vaccination Appointments

COVID Vaccine News

Global Healthy Living Foundation
515 North Midland Avenue
Upper Nyack, New York 10960 USA
+1 845 348 0400
+1 845 340 0210 fax
www.ghlf.org

 

March 13, 2021 — The nonprofit Global Healthy Living Foundation’s free COVID-19 Patient Support Program for people living with chronic disease(s) represents tens of thousands of members who have unique questions and concerns about the COVID-19 vaccine and navigating the pandemic because of their underlying health issues and/or medications. Following the news that federal health agencies called for a pause in administering injections of Johnson & Johnson’s single-dose COVID-19 vaccine due to rare, but serious side effects, we immediately heard from our members seeking advice and support.

GHLF continues to support and encourage COVID-19 vaccination efforts.

We believe that the actions taken by our federal agencies are an important reminder  that the Vaccine Adverse Event Reporting System (VAERS)  and other safety measures are working as intended. It is important to track and study potential adverse events, even when they are rare. GHLF encourages everyone to keep their vaccination appointments in accordance with public health recommendations and to speak with their health care provider if they have specific questions about their health history and vaccination.

Vaccination protects individuals and our public health. Combined with the three Ws: Wearing a Mask, Watching Your Distance, and Washing Your Hands, vaccination helps us protect each other and will hasten the end of the devasting impacts of the COVID-19 pandemic.

GHLF will monitor the review of Johnson & Johnson data by the U.S. Centers for Disease Control and Prevention and continue to provide science-backed information and advice to chronic disease community to make sure they can make informed health care decisions. For more information about the GHLF CVOID-19 Patient Support Program, visit  www.ghlf.org

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 digital community for millions of arthritis patients and caregivers worldwide who seek education, support, activism, and patient-centered research 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 30,000 people. Via CreakyJoints, GHLF also hosts PainSpot (PainSpot.org), a digital risk-assessment tool for musculoskeletal conditions and injuries, and eRheum (eRheum.org), for telehealth and virtual-care support. Visit ghlf.org for more information.

CreakyJoints Saves Free Arthritis Clinic and Renames It the John Whelton Arthur Virshup CreakyJoints South Florida Arthritis Clinic

FOR IMMEDIATE RELEASE  

MEDIA CONTACT

Jessica Daitch

Phone: 917-816-6712

Email: [email protected]

 

UPPER NYACK, NY (March 22, 2021) – CreakyJoints®, the multi-cultural digital arthritis community for patients and caregivers worldwide and part of the Global Healthy Living Foundation (GHLF), today announced that in 2021 they will provide administrative, education, support, advocacy and research to the newly named John Whelton Arthur Virshup CreakyJoints South Florida Arthritis Clinic. GHLF will also guarantee the clinic’s future financial viability. Established in 1975 by rheumatologists Dr. John Whelton and Dr. Arthur Virshup, for whom the clinic is now named, the John Whelton Arthur Virshup CreakyJoints South Florida Arthritis Clinic serves South Florida arthritis patients who cannot afford treatment, providing regular and free rheumatology care to more than 100 area patients. CreakyJoints is replacing the Arthritis Foundation which recently ended its commitment to fund the clinic operations.

Once a month, rheumatologists volunteer their time to care for patients at their private offices in Boca Raton, Boynton Beach, Stuart, and West Palm Beach, Florida. These patients receive consistent and high-quality care identical to patients seen in private practice and have access to laboratory and imaging services subsidized by local supporters, including Quest Diagnostics and Diagnostic Centers of America. It can be difficult to find a rheumatologist who takes Medicaid, so the clinic accepts referrals from community physicians, as well as from other health care non-profits in the area such as Volunteers in Medicine and the HANDS clinic in Martin County. ln Palm Beach County, Project Access, a part of the Palm Beach County Medical Society Services, Caridad and Genesis Clinics, and Florida Atlantic University clinic, whose residents do a rheumatology rotation with Rheumatology Associates of S. Florida (clinic doctors), all refer patients. In Broward County, Light of the World Clinic is a referring partner. Nationally, the Lupus Foundation also refers patients.

A Smooth Transition

“When we learned that our physical clinic home in West Palm Beach, plus our administrative and financial support were going away, we were concerned about the risk of our patients falling through the cracks,” said Michael C. Schweitz, MD, a longtime volunteer rheumatologist with the clinic, past president of the Coalition of State Rheumatology Organizations (CSRO), and past president of the Florida Society of Rheumatology.

“We’re thrilled to work directly with CreakyJoints and look forward to welcoming new community supporters. Now more than ever, it’s important to work together to prioritize the needs of our patients”, he added.

Shawn Baca, MD, another long-time volunteer rheumatologist who is also past president of the Palm Beach County Medical Society, a member of the Florida AMA delegation, and in private practice said, “We are going to get this clinic back on solid financial footing, and our ultimate goal is expansion of these services to other communities. CreakyJoints and local community supporters have committed to help us.”

Kelly Skidmore, District 81 Florida State Representative, is a big supporter of the new clinic. “I applaud the work these local doctors have done and will now continue to do with CreakyJoints’ support.” Rep. Skidmore is also the CEO of the Palm Beach County Medical Society.

Louis Tharp, cofounder and executive director of CreakyJoints and the Global Healthy Living Foundation said, “We immediately agreed to provide financial and operational support to ensure that rheumatology patients would continue to have access to their doctors. Having worked with some of the clinic’s rheumatologists for more than a decade, we have great respect for them, their staff, and associated health care providers who for years have contributed unselfishly to the underserved patient communities in South Florida. Our role is both to support continuity of care for these vulnerable patients as well as to establish best practices for reaching and treating underserved rheumatic patients.”

To learn more about the John Whelton Arthur Virshup CreakyJoints South Florida Arthritis Clinic visit  https://awareness.creakyjoints.org/free-clinic/

CreakyJoints® is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients in English and Spanish through our popular social media channels, our websites, and the 50-State Network, which includes more than 1,600 trained volunteer patient, caregiver, and health care activists.

Part of the Global Healthy Living Foundation, CreakyJoints also has a voluntary patient-reported outcomes registry called ArthritisPower® (ArthritisPower.org), which includes tens of thousands of consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints publishes the popular “Raising the Voice of Patients” series, which offers downloadable patient-centered educational and navigational tools for managing chronic illness. It also hosts PainSpot (PainSpot.org), a digital risk-assessment tool for musculoskeletal conditions and injuries, and eRheum (eRheum.org), for telehealth and virtual-care support. All programming is free, always. For more information and to become a member, visit CreakyJoints.org.

Find us online:

CreakyJoints: CreakyJoints.org

CreakyJoints Español: CJES.org

CreakyJoints Australia: CreakyJoints.org.au

Global Healthy Living Foundation: ghlf.org

Facebook: facebook.com/CreakyJoints & facebook.com/GlobalHealthyLivingFoundation

Twitter: @GHLForg, @CreakyJoints, #CreakyChats

Instagram: @creaky_joints, @creakyjoints_aus, @creakyjoints_esp

TikTok: globalhealthylivingfnd

LinkedIn: linkedin.com/company/ghlf

This Pfizer Scientist Helped Develop the COVID-19 Vaccine: Here’s What She Wants Others to Know About It

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

Meet a Pfizer Scientist Who Helped Develop the COVID-19 Vaccine-logov2
Credit: Tatiana Ayazo

When we think back to the start of the pandemic in March 2020, we remember all the ways — big and small — our lives completely changed. Schools closed, vacations were cancelled, social events got postponed. Many people began working from home or had to stop working altogether.

For Darryl Melissa Charles, that time was filled with its share of changes too — but for an entirely different reason. Charles, 31, is a vaccine research scientist at Pfizer who works out of the company’s research & development campus in Pearl River, New York. (It’s less than 10 miles away from the main offices of the Global Healthy Living Foundation in Nyack, New York.)

As part of the team that would go on to create the first COVID-19 vaccine authorized in the U.S., Charles recalls spending the beginning of the lockdown on quiet drives to work, where there was no one else on the road and things felt eerie and unreal. “I remember thinking that this was my new reality,” says Charles. She and her colleagues started arriving to work earlier and earlier and staying later and later because they were so motivated to do something, anything, to do their part to help end the pandemic.

Long days turned into long weeks and long months. Before Charles knew it, she was logging into work a Monday in November to learn —along with the rest of the world — about the clinical trial results, which reported about 95 percent efficacy. “It was just amazing — I can’t put into any other words. To understand that this science is groundbreaking. It’s the future of vaccines.”

Charles has worked at Pfizer for about five years. She works on developing the assays, or testing materials, that measure antibody responses. “The point of a vaccine is to build an immune response to help your body develop antibodies, in this case, to SARS-CoV-2,” she explains. “The assays we develop helped to measure the levels of antibodies in samples from patients during the clinical trials.”

That said, Charles says she didn’t really comprehend the full impact of her team’s work until after the vaccine was approved in December and she started to hear about how it would directly impact her friends and family who were health care and essential workers. “One of my best friends is a PA [physician assistant] and her fiancé is a respiratory therapist,” says Charles, adding that they’ve been on the front lines this whole time. She was so grateful that the vaccine was coming to their hospital and urged Charles to speak up and tell others about her role in helping to develop it. “She told me, ‘it’s really important for other people to know that,’” Charles recalls.

A Facebook Message that Inspired the World

So Charles posted a message on Facebook on December 28, 2020 — a photo of her wearing a blue sweater emblazoned with the words “Science Will Win” standing next to a sign on Pfizer’s campus. It included the following:

2020 was a year overshadowed by the SARS-CoV-2 (COVID-19) pandemic. Early mornings badging into the lab, leaving long after scheduled work hours, and even coming in on weekends to meet rigorous timelines. It never occurred to me that my position in Vaccines Research would amount to having a global impact; nor did I realize how important it is for the world to know that a face like mine worked tirelessly to release a preventative treatment to help heal the world. 

This year my hard work was rewarded with a promotion to “Scientist.” The weight this carries is beyond my wildest dreams. I often get the “You work at Pfizer? You worked on the vaccine?” Followed by a look of utter shock and disbelief. Black women in science do exist, and I hope to inspire many more to follow this path because representation matters. 

The past several weeks viewing my timeline has left my heart filled. All those who maintain their faith and trust in science, I thank you. We try our best to help keep our communities informed and lead by example, especially when it is so easy for misinformation to spread. 

I am a Vaccine Research Scientist. I love and believe in what I do. I believe that Science Wil Win.

Charles paired her post with a few hashtags, including this powerful one: #BlackWomenInScience.

Encouraging the Next Generation

A big part of why Charles says she posted about her role in the COVID-19 vaccine development is because she firmly believes that it’s important for other people in the community to see young, Black, female scientists because it can help demonstrate to others this this is a viable career path for them.

“Growing up, I never thought about becoming a scientist,” says Charles. You can’t dream of becoming what you don’t know about. At one point, she thought she might be a nurse or pursue dental school, then happened to fall into scientific research during college and graduate school.

Charles got her undergraduate degree in cell and molecular biology from SUNY Binghamton in New York and then went on to earn a master’s in biomedical studies from Rutgers University in Newark, New Jersey. Biology — specifically, learning about the human body and how it worked — was always her favorite subject growing up. But Charles says it was almost by chance that she pursued scientific research as a profession. “Looking back on it now, it feels as though I was meant to be here,” she says. “If I didn’t love my career and what I do, I wouldn’t be able to speak about it with such passion.”

Charles acknowledges that there is a lack of diversity in science research, but that she’s seeing things starting to change for the better. For current students, particularly women and people of color, she hopes that “seeing a face like mine and speaking about my experience and how I got here will help to encourage others to follow the same path if it truly is their interest.”

On Vaccine Education and Building Confidence

While Charles is herself a firm supporter of vaccination, she recognizes that some people are still hesitant and may need more time and information to make a decision. She hopes that people in her local community can see that local, ordinary people like her have helped to develop the vaccine, which can help build trust and give people an opportunity to learn and ask questions. “I believe it has opened the door for people wanting to educate themselves,” she says.

“I’ll tell people that my parents are vaccinated,” says Charles, whose mother received the Pfizer vaccine; her father and brother got the Moderna vaccine. “I try to tell everyone that everyone’s experience [getting the vaccine] is different. There’s a range of questions I get asked and I can’t always speak to all of them but I try to refer people to credible sources to answer their questions.”

Charles is an immigrant from Haiti; she moved to the U.S. when she was 2 years old and grew up in Rockland County outside of New York City. Her community is a diverse melting pot with many immigrant families. Helping to address vaccine hesitancy in the Haitian community is particularly important to Charles.

“There are cultural barriers that will take time to dissolve,” she says. She often shares with others that her family is vaccinated, noting that it’s important for others in the community to see that. “I hope that that more people decide to get vaccinated, the more others will follow suit.”

Expanding access to underserved communities, such as via pop-up clinics in Rockland County communities that have had difficulty accessing the COVID vaccine, is “extremely important,” says Charles, because it helps everyone to lead by example. “When others see other people partaking [in getting the vaccine], it really helps.”

Hitting Close to Home 

When Charles thinks about all that’s happened over the past year, in her work and family life, the feeling that surfaces most strongly right now is one of relief. She and her fiancé have both lost family members to COVID-19 and have many essential workers in their families.

Her mother works as a pharmacy tech in a local hospital and has been on the front lines the whole time. Her brother is a police officer. Charles recalls a time during the height of the pandemic last year when her brother called her to tell her that he was potentially exposed to the coronavirus, and the wrenching anxiety that ensued while helping him navigate getting tested, quarantining, and waiting out his test results.

“I know I’m far from the only one who’s had experiences like that,” she says. “So to be at a point now where pretty much my entire household is vaccinated, there is quite this feeling of relief — that we can start to feel that we’re all going to be okay. And to know that soon the COVID-19 vaccine will be available to everyone so we can have our loved ones back and just return to a normal life. That’s all anyone really wants at this point.”

Charles adds that the most important thing about her journey as a vaccine research scientist over the past year is that it’s far from over. “We’re still in the lab every day, there are still questions that need to be answered. This work is still top priority for all of us, and will be for some time, even long after we ‘return to normalcy.’”

Pfizer Inc. is a corporate sponsor of the Global Healthy Living Foundation, but this content is editorially independent and is not sponsored by Pfizer.

Get Free Coronavirus Support for Chronic Illness Patients

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4 Letters Changed My Life: A GHLF Patient Advocate Shares Her Migraine Treatment Story

Migraine Advocacy Texas Drug Utilization Review

Being a member of the Global Healthy Living Foundation’s 50-State Network, our grassroots patient advocacy group, means speaking up when given the opportunity. Migraine advocate and 50-State Network member JP Summers did just that when she provided virtual testimony during a recent meeting of the Texas Drug Utilization Review Board (DURB). JP shared her story to help other Texans with migraine disease get access to better treatments — a new class of medication that JP says gave her back a normal life.

Below is her testimony.

***

My name is JP Summers and I live in Comal County. Thank you for the opportunity to share my story and for making it possible for me to share it virtually. I know everyone is busy and there is a lot you have to cover, so I will be short. I was alerted to this opportunity to share my experience living with migraine by the Global Healthy Living Foundation’s 50-State Network, who was informed of it through their participation in the Headache and Migraine Policy Forum.

The Global Healthy Living Foundation is a 501(c)(3) nonprofit whose mission is to help people with chronic disease live healthier and happier lives. I am a volunteer GHLF advocate. They have not provided me compensation for my time, testimony, or expenses.

I’m no stranger to health issues. I had heart failure six times. Yes, six times. Each of those times I recovered in a few days then returned back to my daily routine of being a social media and marketing coordinator and a single mom to two teenagers.

I also live with chronic migraine. Thinking about these two conditions, I have found it much harder to find ways to treat my chronic migraine. For those of you who don’t know the definition of chronic migraine, it is having more than 15 headache days a month. And unfortunately, there weren’t treatments that worked to reduce those days for me until 2018.

From the ages of 10 to 43 I tried dozens of different treatments and combinations of treatments. My life and career went on hold at the age of 35. Nothing seemed to work, and I ended up in the emergency room a lot, which meant I couldn’t be there for my family.

My kids mean the world to me. Migraine was making it so I wasn’t able to be a present mom. This tortured me.

But then advancements in migraine treatment happened. I was able to get on new migraine medication, a class of drugs called CGRPs [calcitonin gene-related peptide inhibitors] that are being discussed here today. Those four little letters “C-G-R-P” gave me life back. My kids got their mom back. I was able to go back to work again after taking a five-year absence.

I got my life back.

The pain and symptoms of migraine — throbbing head pain, unrelentless nausea, and sensitivity to lights, sounds, and smells — is not something I would wish on my worst enemy. Even my neurologist noted how debilitating my symptoms were for me and suspended my driving privileges for two years, which ultimately led to losing my job.

As a patient advocate, I hear the stories of people suffering with migraine, of having life put on hold. When you consider access to migraine treatments, I want you to think of me and all those who can’t be here today to tell their stoies. Think about a loved one or colleague who may have migraine.

My ask is simple. Please maintain and, if possible, expand access to these migraine treatments.

All Texans who live with migraine deserve access to the class of treatments that gave me life back.  Thank you.

***

Want to Get More Involved with Patient Advocacy?

The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.

We’re Not Anti-Vaxxers, We’re Traumatized: Here’s How to Build COVID-19 Vaccine Trust with People of Color

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

COVID-19 Vaccine Hesitancy in Black and Communities of Color

Now that the U.S. has multiple COVID-19 vaccine options and has been administering them for weeks, public health officials are facing a not very surprising problem: People of color are hesitant about getting it. And so far, the proof is in the pudding: Black people are getting vaccinated at lower rates than white people.

According to an analysis by Kaiser Health News of states that have released their vaccination data by race, “Black Americans are getting COVID vaccinations at dramatically lower rates than white Americans in the first weeks of the chaotic rollout.” In some places, white people are getting vaccinated at two to three times higher the rate of Black people.

In a December poll from the Kaiser Family Foundation, 35 percent of Black adults said they would probably or definitely not get a COVID-19 vaccine. Of course, this is even more concerning because people of color in the U.S. are dying from the coronavirus at nearly three times the rate of white Americans.

So, what’s happening here? Ask a lot of Black people and you’ll get a lot of answers, but here’s my perspective as a Black woman who has been a chronic illness and disability patient advocate for many years.

First, let’s just say this. Generally speaking, Black people are not anti-vaxxers. We may be vaccine hesitant, and the difference matters. In order to improve COVID-19 vaccination in people of color, we must understand the difference between these groups.

The Anti-vaxx Movement Is White Privilege

Over the past decade or so, most of us have become aware to some degree of the anti-vaxxer movement. The term “refers to people who disagree with the use of vaccines for a variety of reasons.”

You can read more here about the movement and how it got started, but it a lot of it has to do with people believing misinformation about vaccine dangers and not wanting infringements on their right to choose whether or not to vaccinate their children.

Social media groups and ill-informed proclamations from celebrities pushed the anti-vaxxer movement into the spotlight. Unfounded fears about vaccines triggering autism fanned the fire, despite virtually every single major trusted public health institution in the U.S. saying and proving that they don’t.

In my opinion, the anti-vaxxer movement is a powerful example of white privilege.

Data has shown that college-educated white women are more likely to be anti-vaxxers. Parents of color aren’t under the misguided notion that they can get away with raising their children however they want. They are aware that this is a great way to bring Child Protective Services into your life and possibly lose custody of your children.

If our kids’ doctors tell us to vaccinate our children, we do it. If our kids’ schools won’t let them attend unless they’re vaccinated, we follow the rules, we don’t fight them.

In contrast, the issue of COVID-19 vaccine hesitancy in people of color is very different.

It’s not about being trendy. It’s not act of anti-socialism. It’s not about cherry-picking which misinformed bloggers, celebrities, or “medical experts” you choose to “believe.”

Vaccine Hesitancy Is a Trust Problem

While there’s no single reason (or, for that matter, solution) for COVID-19 vaccine hesitancy in the Black community, the overarching problem is trust, or rather, a lack of trust.

All the theories about the causes of vaccine hesitancy have one common root: hundreds of years of people of color being unable to trust our government, especially when it comes to health and science.

Old trauma that persists to this day is not easily overcome.

As Karen Attiah wrote in the Washington Post: “Vaccines in vials are no good unless people take them. That requires trust on the part of patients, and therein lies the problem. For many Black Americans, generations of systemic medical racism and predatory experimentation on Black bodies have generated deep distrust of a system that was never built to serve them.”

The very system of vaccine development — which involves stages of clinical trials in which volunteers consent to participate in an experiment with an unknown outcome — is dependent on patients’ trust. And if patients of color were able to trust their doctors, medical institutions, or the government, clear answers from these sources would resolve this vaccine hesitancy problem.

However, disabled people and people of color (in particular Black people), have only to look to their lived experiences and the history of this nation to be supplied with endless reasons not to entrust their well-being to those who have previously abused them.

In ways that are both obvious and subtle, we are still being mistreated by this system that we are supposed to trust — whether we even know it or not.

In discussions about the Black community’s mistrust of the medical system, examples like Henrietta Lacks (a Black woman whose cancer cells were used for decades of medical research without her consent) and the Tuskegee experiments (in which Black men with syphilis were intentionally denied treatment so doctors could study the progression of the disease) come up over and over.

But this is just the tip of the iceberg. Maybe shady and highly unethical experiments are a thing of the past, but current racial disparities in health care are certainly not helping to improve our trust in the system.

To this day, misinformation perpetuates racism in medicine. For an easy recap, check out this episode of Last Week Tonight, which addresses the false claims that Black people have thicker skin, a higher pain tolerance, less sensitive nerve endings, different blood coagulation rates, and more.

And data doesn’t lie. Black babies have more than twice the risk of dying in their first of year of life as white infants, new research shows. Black people are almost three times more likely to die from asthma-related causes than white people, according to the U.S. Department of Health and Human Services Office of Minority Health. A new American Cancer Society report says that Black patients have the highest death rate and shortest survival of any racial/ethnic group in the US for most cancers.

And in a recent — and very relevant — example, a paper in a major medical journal showed that pulse oximeters (a tool that clips on to your fingertip to measure blood oxygen levels) can provide misleading results in Black people. This can lead people to think their blood oxygen levels are higher (read: healthier) than they actually are.

Pulse oximeters were not on my everyday radar before the COVID-19 pandemic, when everyone started Amazon Priming them to their homes to be able to check on their breathing when infected with the coronavirus. And we’re just finding out that they may be less accurate in Black people?

Is the disparity in COVID infections and deaths for Black people supposed to increase our trust?

Is the fact that Black people make up a large proportion of essential workers (and don’t receive hazard pay) supposed to increase our trust?

To Build Trust, Pass the Mic

All of these examples have everything to do with how communities of color think about the COVID-19 vaccine. Racial bias is still a fact of the U.S. health care system — and addressing its many facets is one way to start building back trust.

But this takes time. Years. Decades. So how do you repair the trust between the communities of color and the powers that be in time to get the COVID-19 vaccine distributed now?

To put it simply … You can’t.

However, I’ve been paying attention to Black doctors on Twitter who have been doing their part to come up with ideas and solutions, including panels where Black doctors answer questions and provide trusted information about COVID-19 and the vaccine for these communities.

Check out Cleavon Gilman, MD; Uche Blackstock, MD; or Brittani James, MD to get started.

In early December, Dr. James tweeted a practical proposal for a solution.

“As a Black woman and frontline physician currently caring for patients with and without COVID on Chicago’s South Side, here is what will ACTUALLY work in my view,” tweeted Dr. James, who works at the University of Illinois College of Medicine.

“First, we need to admit that white people and the government have little to no credibility in the average Black person’s eyes. That’s not a debate. That’s a forgone conclusion. What’s more, there is not enough time to correct that perception before this vaccine comes live,” she continued.

“If health systems, the government and providers *really* want Black people to take this vaccine, you all better start passing the mic and passing the power to act to Black and brown people,” she concluded, calling for a solution to empower people of color — from academics to grassroots organizers to church leaders — the platform, resources, and money to address the issue of vaccine hesitancy in communities directly.

Investing in Our Future

The burden simply can’t rest on them, however.

Repairing the medical system by identifying and eliminating racism and disparities is the ultimate goal, and we must act now.

This is not just about getting COVID-19 vaccines in Black arms in 2021. This is about every year that we will have a COVID and flu season in the future. This experience could make us a healthier and more unified nation, but only if we handle it correctly.

Only if we deal with anti-vaxxers with an unrelenting dedication to science, truth, and enforcing penalties as needed.

Only if we see our government and health care system demonstrate that they truly care about the health of every American equally, including every BIPOC, LGBTQ, disabled, or elderly American.

Only if our elected officials demonstrate an earnest dedication to help us bring about quality universal health care for all.

I believe this trust can be regained, but it demands a solid investment in and attention to communities of color. We need to work toward a future that values and uplifts the lived experienced of those most who are most marginalized.

Get Free Coronavirus Support for Chronic Illness Patients

Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.

Attiah K. The health-care system has failed Black Americans. No wonder many are hesistant about a vaccine. The Washington Post. November 24, 2020. https://www.washingtonpost.com/opinions/2020/11/24/health-care-system-has-failed-black-americans-no-wonder-many-are-hesitant-about-vaccine.

Asthma and African Americans. U.S. Department of Health and Human Services Office of Minority Health. https://minorityhealth.hhs.gov/omh/browse.aspx?lvl=4&lvlid=15.

Bias In Medicine: Last Week Tonight with John Oliver (HBO). YouTube. August 19, 2019. https://www.youtube.com/watch?v=TATSAHJKRd8.

Cancer Facts & Figures for African Americans 2019-2021. American Cancer Society. 2019. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/cancer-facts-and-figures-for-african-americans/cancer-facts-and-figures-for-african-americans-2019-2021.pdf.

Driscoll A, et al. Effects of Changes in Maternal Age Distribution and Maternal Age-specific Infant Mortality Rates on Infant Mortality Trends: United States, 2000–2017. National Vital Statistics Reports. U.S. Department of Health and Human Services. June 25, 2020. https://www.cdc.gov/nchs/data/nvsr/nvsr69/NVSR-69-05-508.pdf.

‘Henrietta Lacks’: A Donor’s Immortal Legacy. NPR. February 2, 2010. https://www.npr.org/2010/02/02/123232331/henrietta-lacks-a-donors-immortal-legacy.

 Kandola A. What is an anti-vaxxer? Medical News Today. November 4, 2020. https://www.medicalnewstoday.com/articles/anti-vaxxer.

Lubrano A. Anti-vaccine parents are often white, college-educated, ‘Whole Foods moms.’ The Philadelphia Inquirer. April 10, 2019. https://www.inquirer.com/news/middle-class-working-class-vaccine-anti-vaxxers-measles-cdc-20190410.html.

Nix E. Tuskegee Experiment: The Infamous Syphilis Study. History. December 15, 2020. https://www.history.com/news/the-infamous-40-year-tuskegee-study.

Recht H, et al. Black Americans Are Getting Vaccinated at Lower Rates Than White Americans. Kaiser Health News. January 17, 2021. https://khn.org/news/article/black-americans-are-getting-vaccinated-at-lower-rates-than-white-americans.

Sjoding MW, et al. Racial Bias in Pulse Oximetry Measurement. The New England Journal of Medicine. December 17, 2020. Doi: https://doi.org/10.1056/NEJMc2029240.

Global Healthy Living Foundation Awards Grant to Chronic Migraine Awareness, Inc. to Support Migraine Education and Awareness

FOR IMMEDIATE RELEASE  

MEDIA CONTACT

Jessica Daitch

Phone: 917-816-6712

Email: [email protected]

 

UPPER NYACK, NY (January 13, 2021)Global Healthy Living Foundation (GHLF), a patient-centered non-profit organization whose mission is to improve the quality of life for people with chronic illness, today announced that the organization awarded a $10,000.00 grant to Chronic Migraine Awareness, Inc. (CMA), a 501(c)3 organization, to support 2021 programming that will extend their existing ARMS program (Advocates Removing Migraine Stigma) from migraine patients to care partners and create virtual connection events for participants.

“We’re very excited to partner with GHLF to extend the reach of our ARMS program, which is proven to empower people with chronic migraine disease to advocate for themselves and help end migraine stigma through community outreach and education,” said Jeannette Rotondi, LSW, CCTP, Acting Executive Director, Chronic Migraine Awareness, Inc.

“The Global Healthy Living Foundation prioritizes building bridges between people living with chronic diseases, like migraine. We look forward to continuing our work with Chronic Migraine Awareness, an organization that works tirelessly to support the migraine community by providing hope and support,” said Louis Tharp, Executive Director and Cofounder of Global Healthy Living Foundation.

About Global Healthy Living Foundation

The Global Healthy Living Foundation is a 501(c)(3) non-profit organization whose mission is to improve the quality of life for people living 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 digital arthritis community for millions of arthritis patients and caregivers worldwide who seek education, support, activism, and patient-centered research through ArthritisPower® (ArthritisPower.org) Research Registry. In response to the COVID-19 pandemic, GHLF started a Patient Support Program, informed by a patient counsel comprised of people living with a wide range of chronic illnesses, that now serves more than 30,000 people. Via CreakyJoints, GHLF also hosts PainSpot (PainSpot.org), a digital risk assessment tool for musculoskeletal conditions and injuries, and eRheum (eRheum.org) for telehealth and virtual care support. Visit www.GHLF.org for more information.

Find us online:

Global Healthy Living Foundation: www.ghlf.org

CreakyJoints: www.CreakyJoints.org

CreakyJoints Español: https://creakyjoints.org.es

CreakyJoints Australia: www.creakyjoints.org.au

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LinkedIn: linkedin.com/company/ghlf

Thiopurine Medications Are Linked with Risk of Severe COVID-19 in Inflammatory Bowel Disease Patients

Inflammatory Bowel Disease and COVID-19

As the COVID-19 pandemic continues, there’s still a lot to learn about which types of underlying health issues — and medications associated with those health issues — affect the risk for severe illness and death among people who contract the coronavirus. A new study in the journal Gut may provide a clue, at least among people with inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis.

In the study, IBD patients who took thiopurines (such as azathioprine, or Imuran) were more likely to develop severe COVID-19 as were patients taking thiopurines in addition to anti-tumor necrosis factor (TNF) biologic medications, such as adalimumab (Humira). But TNF blockers were not linked with an increased risk. Thiopurines are drugs that reduce inflammation by damping down the exaggerated immune response that helps drive IBD.

Doctors have been concerned that immunosuppressant drugs may elevate the risk for severe COVID-19, defined as being admitted to the hospital, needing a mechanical ventilator, or dying.

The researchers based their findings on information from the Surveillance Epidemiology of Coronavirus Under Research Exclusion for Inflammatory Bowel Disease (SECURE-IBD), a database specifically launched to look at COVID-19 outcomes in IBD patients.

In a previous analysis of SECURE-IBD, the same authors found that IBD patients taking corticosteroids or mesalamine/sulfasalazine were also at a heightened risk of severe COVID-19 illness. Both mesalamine (Asacol and other brand names) and sulfasalazine (Azulfidine) belong to the class of drugs known as aminosalicylates, which are different from thiopurines. They work by reducing inflammation in the intestine.

For this study, the authors revisited the same dataset, looking at nearly 1,500 IBD cases from 47 countries. Overall, almost 8 percent (112 patients) developed severe COVID-19. Compared with people taking TNF antagonists alone, those treated with only thiopurine had a fourfold greater risk of severe COVID-19, as did people taking combination TNF antagonists and thiopurine. This suggests that thiopurines were driving the elevated risk.

As the authors state, “This is in line with previous studies that have observed a higher risk of viral infections in patients treated with thiopurines alone or in combination with TNF antagonists.”

TNF antagonists might even be protective against severe COVID-19 precisely because they curb levels of TNF, the authors state. “Higher baseline TNF levels have been associated with an increased risk of death in COVID-19, and the use of TNF antagonists as a COVID-19 treatment has been advocated by some experts in order to blunt the robust inflammatory response seen in severe disease,” the authors write. The authors didn’t find any notable differences between different classes of biologic drugs.

Most of the patients in the study who developed severe illness (79 percent) were over the age of 50, which makes it difficult to extrapolate the findings to a younger age set. Having other chronic health conditions and being treated with corticosteroids were also associated with a greater likelihood of severe disease.

The findings could mean that certain high-risk patients with IBD who are in stable remission with combination TNF antagonist/thiopurine therapy may be able to discontinue the thiopurine, at least while the pandemic continues to rage. This might include patients who are older and/or have multiple other health conditions that are associated with poor COVID-19 outcomes. This wouldn’t be necessary in younger patients with no other risk factors for severe COVID-19.

The finding could help guide decisions on treating IBD during this pandemic.

“Treatment of IBD has always involved balancing benefits and harms of treatment and the disease itself,” study senior author Michael D Kappelman, MD, associate professor of pediatrics at the University of North Carolina at Chapel Hill School of Medicine tells MedPage Today. “COVID plays a minor role in my balancing the benefits and risks, with the corollary that IBD should play a minor role in decisions about returning to work, school, etc.”

Get Free Coronavirus Support for Chronic Illness Patients

Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.

Ungaro, RC, et al. Effect of IBD medications on COVID-19 outcomes: results from an international registry. Gut. November 19, 2020. doi: https://doi.org/10.1136/gutjnl-2020-322539.

Walsh N. IBD and COVID-19: Who Is at Risk? MedPage Today. December 12, 2020. https://www.medpagetoday.com/meetingcoverage/aibd/90185.

CreakyJoints Launches The Gout Show, a New Podcast Series and Educational Campaign

FOR IMMEDIATE RELEASE  

MEDIA CONTACT

Jessica Daitch

Phone: 917-816-6712

Email: [email protected]

 

It is estimated that nearly 4 percent of the U.S. population (or 9.2 million people) are living with gout, a form of arthritis that causes severe, sudden attacks of inflammation, often in the toe joints or other large joints. Attacks occur following an overproduction of urate in the blood (known as hyperuricemia), which causes uric acid crystals to build up in the joints and trigger debilitating pain. Gout is a genetic condition. While more men than women get gout, anyone is susceptible if their body doesn’t properly break down uric acid before it crystallizes in the joints.

“The good news is that gout is highly treatable, but in order to address it with our patients, they have to recognize their symptoms and report them to their doctor,” said Payam Shakouri, MD, a nephrologist with Advanced Kidney Care of Hudson Valley in New York and a medical adviser to CreakyJoints. ““Not only can gout be disabling disruptive to a person’s quality of life, but it can cause serious damage to joints, bones and organs. I’m pleased to contribute advice on The Gout Show and encourage people living with gout to listen to the series and report any symptoms they might have to their health-provider team.”

The Gout Show also includes expert advice from Theodore R. Fields, MD, a rheumatologist at the Hospital for Special Surgery and Professor of Clinical Medicine at Weill Cornell Medical College in New York City.

While physicians guide the science of the podcast, patients drive the narrative. “I was surprised when — at age 32 — I was diagnosed with gout after experiencing pain in my knee. I thought it was a simple running injury that I could rehab, and I mistakenly thought gout started just in the big toe,” said Ashley Newton, a CreakyJoints member who shares her gout story in episode one of The Gout Show. “As I’ve learned more about gout, I’ve prioritized keeping up with my treatments, tracking my symptoms in CreakyJoints’ ArthritisPower® Research Registry, and sharing what I know about gout with other people in the event they may be experiencing symptoms that need to be reported to a doctor.”

CreakyJoints is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients in English and Spanish through our popular social media channels, our websites CreakyJoints.org, CreakyJoints.org.es, CreakyJoints.org.au, and the 50-State Network, which includes more than 1,500 trained volunteer patient, caregiver, and health care activists.

As part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower (ArthritisPower.org) with more than 29,000 consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints also publishes the popular “Raising the Voice of Patients” series, which are downloadable patient-centered educational and navigational tools for managing chronic illness. It also hosts PainSpot (PainSpot.org), a digital risk assessment tool for musculoskeletal conditions and injuries, and eRheum (eRheum.org) for telehealth and virtual care support. For more information and to become a member (for free), visit CreakyJoints.org.

Find us on social media:

Facebook: facebook.com/CreakyJoints and facebook.com/GlobalHealthyLivingFoundation

Twitter: @GHLForg, @CreakyJoints, #CreakyChats

Instagram: @creaky_joints, @creakyjoints_aus, @creakyjoints_esp

YouTube: youtube.com/user/CreakyJointsInc

TikTok: globalhealthylivingfnd

LinkedIn: linkedin.com/company/ghlf