ACR 2020 Highlights: Racial Disparities, COVID-19, Empowering Patients and Pregnancy Among Friday Topics
Racial and ethnic disparities in health care
and telemedicine
wa
s
a focus of several presentations at
the American College of Rheumatology’s annual meeting Friday, the second of the five-day virtual
conference.
Minority Rheumatology Patients Fare Worse With COVID-19
In one study, r esearcher s found that rheumatic disease patients of racial and ethnic minorities who were diagnosed with COVID-19 fared worse than white counterparts , said Milena Gianfrancesco , PhD, a ssistant a djunct p rofessor at the University of California, San Francisco School of Medicine . Using the COVID-19 Global Rheu m atology registry, researchers identified 694 white, Black, Latinx and other s with rheumatic disease who had been diagnosed with COVID-19 in the U.S. They found that Black patients had 2 .7 higher odds and Latinx patients had 1.98 higher odds than white patients of being hospitaliz ed for COVID-19. Black and Latinx patients also had three-fold higher odds than whites of being on a ventilator , although no differences were found in terms of mortality. Th ese disparities might be due to diff erences in access to testing and care, or home and work environments that expose them to higher COVID-19 risks, said Gianfrancesco , and the COVID-19 disparities likely “reflect pre-existing underlying health disparities . ”
Rheumatologists and public policy can help close the gap, she add ed , by advocating for routine racial and ethnic data collection for research to show the disparities; by creating educational materials in multiple languages about COVID-19 and recommended precautions; and by encouraging testing among high-risk groups. “Rheumatologists and other clinicians can also play an important role in building trust with their patients and promoting vaccination once that becomes available ,” she sa id . —JILL TYRER
Cardiovascular Risk Higher in Black Lupus Patients
A study of people with systemic lupus erythematosus (SLE, or lupus) in the U . S . found that Black patients have three-fold higher risk of stroke and 24 times the risk of ischemic heart disease than non-Black patients. (Ischemic heart disease, also called coronary heart disease, is a condition in which the heart doesn’t get enough blood and oxygen.)
The study also found that stroke typically occurred with in the second year of diagnosis, while ischemic heart disease came in the 14 th year, said lead author Shivani Garg, MD, assistant professor of medicine at the University of Wisconsin School of Medicine and Public Health.
Researchers also found predictive factors: Those with a discoid skin rash at the time of diagnosis had a five-fold higher risk of experiencing stroke, while those with renal disorder at diagnosis had a two-fold higher risk of heart disease.
“Our study highlights the need for aggressive CVD [cardiovascular] preventive care to reduce CVD disparities and improve outcomes in lupus, specifically in patients with a recent lupus diagnosis,” Dr. Garg said. —JILL TYRER
Empowering Patients f or Better Outcomes
In the keynote lecture for the Association of Rheumatology Professionals (ARP) , patient advocate Jen Horonjeff , PhD, f ounder and CEO of Savvy Cooperative , a n organization that focuses on patient-engagement , emphasized the pivotal role rheumatologists and health care providers play in patient outcomes .
Horonjeff , who was diagnosed with j uvenile i diopathic a rthritis (JIA) as an infant and has multiple other rheumatic diseases , advised providers to “ stop and do the work to understand what’s important to patients early on .”
It wasn’t until she was a teenager when she had the opportunity to meet other kids with arthritis at an Arthritis Foundation Juvenile Arthritis C onference , an experience she said was life-changing . She credits her rheumatologist , who encouraged her to volunteer and meet other teens with similar conditions .
“ I t awoke something inside me that I didn’t even know existed. I found purpose , ” said Horonjeff .
In her presentation, she discussed how arthritis affects the patient’s whole family. She shared her experiences of living with JIA and how those experiences shaped her career helping to connect patients with those in the health care industry . She provided an outline of lessons for attendees, driving to the main theme of being more patient-centered , emphasizing the need in research and industry for diverse patient voices , and empowering patients to take action to manag e their conditions.
“Patient engagement is not a noun, it’s a verb , ” told providers . “ It starts with you. You have the power to change a patient’s trajectory . ” — REBECCA GILLETT
Pregnancy May Be Safe With Lung Disease
Women living with autoimmune-related interstitial lung disease have historically been advised to avoid pregna n cy or even to terminate their pregnancy due to risk s of death and poor outcomes. But when Megan Clowse , MD, associate professor of medicine, Division of Rheumatology and Immunology at Duke University School of Medicine , and a leading reproductive rheumatologist , started digging into the research , she found only four small studies based on decades-old data .
Dr. Clowse and colleagues pulled 20 years of data from Duke Health System’s electronic medical records on pregnant patients with interstitial lung disease (ILD) . (ILD , which may occur in people with autoimmune diseases such as sarcoidosis, lupus, scleroderma and rheumatoid arthritis , involves inflammation and scarring of lung tissue, which can lead to serious breathing difficulty . ) Of 67 patients who had 94 pregnancies, seven pregnancies were in women with severe ILD and 16 in women with moderate to severe ILD. Most of the rest were mild cases .
One worrying discovery was that in seven cases, pregnant wom e n were taking mycophenolate, which is known to cause miscarriage and major birth defects, at the time of conception, Dr. Clowse said.
N one of the women died , although those with severe ILD had poorer outcomes , including two women who required ICU . Patients required oxygen during e ight of the deliveries. Live births occurred in 70% of the pregnancies . Those women with severe disease were more likely to have pregnancy losses or stillborn or pre- term deliveries . “However , it’s worth noting that several of these women did go home with an ultimately pretty healthy baby,” Dr . C l owse said.
“For the women who had normal up to moderate lung disease, they really had remarkably good outcomes – pretty comparable to the general popula tion,” she added. “I really think it’s time to rethink our approach to interstitial lung disease and pregnancy. It appears many of these women can have safe pregnancies . ”
To ensure that pregnancies go well, she recommends tertiary care along with obstetric and primary care, evaluating the severity of their lung disease as well as heart through the pregnancy , aggressively treating inflammation and rheumatic disease during pregnancy , and monitoring closely during pregnancy and after delivery.
Dr. Clowse has found that p atients often will not proactively ask about pregnancy planning, she said, so she raises the topic to ensure that they know the risks . —JILL TYRER
Telemedicine i n Arthritis Care
T elemedicine is having a moment, thanks to the COVID-19 pandemic. What had primarily been access to care for many in rural areas quickly became a medical necessity for everyone as shelter-in-place mandates were established. As a result, the U.S. Department of Health & Human Services (HHS) has eased restrictions on how and when telemedicine is covered by government-based and private health insurance, including HIPAA requirements and limited access. Almost everyone is now using some form of telemedicine. Two sessions on telemedicine Friday focused on virtual care in the treatment of arthritis and examined its past, present and future.
Experts in both sessions agree that , in most cases , telemedicine is helpful and here to stay. And the goals are clear: Telemedicine should protect patients fr o m exposure to infection and improve patient access, sa id Aruni Jayatilleke, MD, associate professor at Lewis Katz School of Medicine, Temple University. Reviewing telemedicine practices and data – in having more in-depth studies – are key to its optimal use, she says.
Experts in both sessions also agree that patient reported outcomes is vital to the future of telemedicine , which is proving more effective for certain disease types. “It turns out, gout is an excellent opportunity for using telemedicine,” says Dr. Jayatillek e . She cite d a June 2020 Singapore study that showed gout patients who used routine telemedicine versus those who had limited in-person visits achieved targeted uric acid levels more than four months sooner. And 15% of patients who had in-person visits had flares requiring hospitalization compared to zero patients in the telemedicine group. “This was an excellent showing of how telemedicine could actually improve care,” sa id Dr. Jayatilleke. A similar study in rheumatoid arthritis patients showed telemedicine and in-person patients had about the same outcome, she added .
Telerheumatology
: How COVID-19 Changed it & What's in the Future
In another session on telehealth , Chris Phillips, MD, chair of the ACR Insurance Subcommittee and member of the ACR COVID-19 Practice and Advocacy Task Force, discussed the use of telemedicine during and after the pandemic and its impact on virtual care. While telemedicine use has surged, the big question s are how it will be delivered, what regulators will allow and what insurance will cover once the pandemic has ended , Dr. Phillips said . While HHS has relaxed m any regulations , some legislative and financial barriers may not last once it’s over, sa id Dr. Phillips. “We feel that it’s likely that the ability to continue to see patients from their home and the removal of the rural restrictions may stick, but it’s not for sure,” he add ed . “There are a lot questions about whether the HIPAA-compliant platform issue will stick and what will happen to ‘audio-only’ and what’s going to happen to [health care providers] practicing across state lines.”
Christine Peoples, MD, director of the t elerheumatology p rogram and clinical assistant professor of medicine, Division of Rheumatology and Clinical Immunology at the University of Pittsburgh, discussed the past, present and future of telemedicine. According to Dr. Peoples, medicine at a distance dat es back to the Middle Ages , when bubonic plague information was transmitted across Europe via bonfires. T elemedicine as we know it today has been around since the 1960s, and has evolved into high-tech tool used in the treatment of complex conditions. A mong the top 10 specialties using telemedicine, rheumatology ranks second , Dr. Peoples said . Its greatest limitation is the physical exam, but the need now for it is greater than ever. — BRYAN D. VARGO
The Great Debate: JAKs vs. Anti-TNFs
When patients with rheumatoid arthritis (RA) don’t respond to methotrexate, current ACR guidelines recommend switching to an anti-tumor necrosis factor (TNF), such as adalimumab ( Humira ). But some doctors think these patients might benefit more from a J anus kinase inhibitor (JAK) like tofacitinib ( Xeljanz ). Vibeke Strand, MD, a biopharmaceutical consultant and adjunct clinical professor in the division of rheumatology/immunology at Stanford University , tackled this debate along with Michael Weinblatt , MD, rheumatologist at Brigham and Women’s Hospital and professor of medicine at Harvard Medical School, with Dr. Strand arguing for JAKs and Dr. Weinblatt against. Here’s what they said:
JAK p ros :
JAK c ons:
Anti-TNF p ros :
Anti-TNF c ons:
Both doctors agreed that all pros and cons must be fully discussed with patients, who should have the final say in their treatment choice. A small poll of rheumatologists found that about two-thirds would be reluctant to switch to a JAK instead of an anti-TNF for patients who don’t do well on methotrexate. — LINDA RATH
Racial Disparities in Rheumatology: RA, OA & Arthroplasty
Studies find that factors like race and socioeconomic status play significant roles in determining disease outcomes for patients with RA or osteoarthritis (OA). Race is also an important predictor of outcomes and utilization of total knee arthroplasty (TKA) and total hip arthroplasty (THA) for OA patients in the U . S. Though African Americans report more pain and decreased function in knee OA than do whites, they are more likely to delay care, have more severe disease and are less likely to undergo TKA or THA.
Being Black is also associated with worse outcomes after knee replacement surgery , including a higher risk of complications, infection and need to have a revision procedure. While p overty also is linked to worsening procedural outcomes , whites in poverty tend to have better outcomes than Blacks of same socioeconomic status. For the management of knee OA, Black patients are also less likely to pursue complementary therapies, but more likely to use and find coping strategies like prayer to be helpful.
Black patients with RA similar ly experience delay s in seeking care and are less likely to seek aggressive therapy for disease management, including the use of biologic medications . Aggressive care is important to managing disease early, and delays are associated with worse pain, higher inflammatory markers and worsening disease activity. Researchers speculate this could be due to several factors including trust in the provider, access to care and knowledge of the therapy. There is little data about the types of interactions Black patients have with their care providers or research into how to make these outcomes better. However, Black patients report racism as a factor in hospital interactions. There’s also evidence that Black patients are much more likely to have surgery in states with expanded Medicaid programs and insurance coverage.
Finally, there is significant gap in studying Black patients in randomized control trials (RCTs) or participation in studies that can determine the effectiveness of certain treatments for arthritis. To amend this oversight, many researchers use e lectronic h ealth r ecords (EHR) to study outcomes of Black patients with various medications and treatments. Still, researchers express an urgent need to have more diverse representation in clinical trials to best study the efficacy of medications. — ROBYN ABREE
Minority Rheumatology Patients Fare Worse With COVID-19
In one study, r esearcher s found that rheumatic disease patients of racial and ethnic minorities who were diagnosed with COVID-19 fared worse than white counterparts , said Milena Gianfrancesco , PhD, a ssistant a djunct p rofessor at the University of California, San Francisco School of Medicine . Using the COVID-19 Global Rheu m atology registry, researchers identified 694 white, Black, Latinx and other s with rheumatic disease who had been diagnosed with COVID-19 in the U.S. They found that Black patients had 2 .7 higher odds and Latinx patients had 1.98 higher odds than white patients of being hospitaliz ed for COVID-19. Black and Latinx patients also had three-fold higher odds than whites of being on a ventilator , although no differences were found in terms of mortality. Th ese disparities might be due to diff erences in access to testing and care, or home and work environments that expose them to higher COVID-19 risks, said Gianfrancesco , and the COVID-19 disparities likely “reflect pre-existing underlying health disparities . ”
Rheumatologists and public policy can help close the gap, she add ed , by advocating for routine racial and ethnic data collection for research to show the disparities; by creating educational materials in multiple languages about COVID-19 and recommended precautions; and by encouraging testing among high-risk groups. “Rheumatologists and other clinicians can also play an important role in building trust with their patients and promoting vaccination once that becomes available ,” she sa id . —JILL TYRER
Cardiovascular Risk Higher in Black Lupus Patients
A study of people with systemic lupus erythematosus (SLE, or lupus) in the U . S . found that Black patients have three-fold higher risk of stroke and 24 times the risk of ischemic heart disease than non-Black patients. (Ischemic heart disease, also called coronary heart disease, is a condition in which the heart doesn’t get enough blood and oxygen.)
The study also found that stroke typically occurred with in the second year of diagnosis, while ischemic heart disease came in the 14 th year, said lead author Shivani Garg, MD, assistant professor of medicine at the University of Wisconsin School of Medicine and Public Health.
Researchers also found predictive factors: Those with a discoid skin rash at the time of diagnosis had a five-fold higher risk of experiencing stroke, while those with renal disorder at diagnosis had a two-fold higher risk of heart disease.
“Our study highlights the need for aggressive CVD [cardiovascular] preventive care to reduce CVD disparities and improve outcomes in lupus, specifically in patients with a recent lupus diagnosis,” Dr. Garg said. —JILL TYRER
Empowering Patients f or Better Outcomes
In the keynote lecture for the Association of Rheumatology Professionals (ARP) , patient advocate Jen Horonjeff , PhD, f ounder and CEO of Savvy Cooperative , a n organization that focuses on patient-engagement , emphasized the pivotal role rheumatologists and health care providers play in patient outcomes .
Horonjeff , who was diagnosed with j uvenile i diopathic a rthritis (JIA) as an infant and has multiple other rheumatic diseases , advised providers to “ stop and do the work to understand what’s important to patients early on .”
“ Patient engagement is not a noun, it’s a verb .” – Jen Horonjeff
It wasn’t until she was a teenager when she had the opportunity to meet other kids with arthritis at an Arthritis Foundation Juvenile Arthritis C onference , an experience she said was life-changing . She credits her rheumatologist , who encouraged her to volunteer and meet other teens with similar conditions .
“ I t awoke something inside me that I didn’t even know existed. I found purpose , ” said Horonjeff .
In her presentation, she discussed how arthritis affects the patient’s whole family. She shared her experiences of living with JIA and how those experiences shaped her career helping to connect patients with those in the health care industry . She provided an outline of lessons for attendees, driving to the main theme of being more patient-centered , emphasizing the need in research and industry for diverse patient voices , and empowering patients to take action to manag e their conditions.
“Patient engagement is not a noun, it’s a verb , ” told providers . “ It starts with you. You have the power to change a patient’s trajectory . ” — REBECCA GILLETT
Pregnancy May Be Safe With Lung Disease
Women living with autoimmune-related interstitial lung disease have historically been advised to avoid pregna n cy or even to terminate their pregnancy due to risk s of death and poor outcomes. But when Megan Clowse , MD, associate professor of medicine, Division of Rheumatology and Immunology at Duke University School of Medicine , and a leading reproductive rheumatologist , started digging into the research , she found only four small studies based on decades-old data .
Dr. Clowse and colleagues pulled 20 years of data from Duke Health System’s electronic medical records on pregnant patients with interstitial lung disease (ILD) . (ILD , which may occur in people with autoimmune diseases such as sarcoidosis, lupus, scleroderma and rheumatoid arthritis , involves inflammation and scarring of lung tissue, which can lead to serious breathing difficulty . ) Of 67 patients who had 94 pregnancies, seven pregnancies were in women with severe ILD and 16 in women with moderate to severe ILD. Most of the rest were mild cases .
One worrying discovery was that in seven cases, pregnant wom e n were taking mycophenolate, which is known to cause miscarriage and major birth defects, at the time of conception, Dr. Clowse said.
N one of the women died , although those with severe ILD had poorer outcomes , including two women who required ICU . Patients required oxygen during e ight of the deliveries. Live births occurred in 70% of the pregnancies . Those women with severe disease were more likely to have pregnancy losses or stillborn or pre- term deliveries . “However , it’s worth noting that several of these women did go home with an ultimately pretty healthy baby,” Dr . C l owse said.
“For the women who had normal up to moderate lung disease, they really had remarkably good outcomes – pretty comparable to the general popula tion,” she added. “I really think it’s time to rethink our approach to interstitial lung disease and pregnancy. It appears many of these women can have safe pregnancies . ”
To ensure that pregnancies go well, she recommends tertiary care along with obstetric and primary care, evaluating the severity of their lung disease as well as heart through the pregnancy , aggressively treating inflammation and rheumatic disease during pregnancy , and monitoring closely during pregnancy and after delivery.
Dr. Clowse has found that p atients often will not proactively ask about pregnancy planning, she said, so she raises the topic to ensure that they know the risks . —JILL TYRER
Telemedicine i n Arthritis Care
T elemedicine is having a moment, thanks to the COVID-19 pandemic. What had primarily been access to care for many in rural areas quickly became a medical necessity for everyone as shelter-in-place mandates were established. As a result, the U.S. Department of Health & Human Services (HHS) has eased restrictions on how and when telemedicine is covered by government-based and private health insurance, including HIPAA requirements and limited access. Almost everyone is now using some form of telemedicine. Two sessions on telemedicine Friday focused on virtual care in the treatment of arthritis and examined its past, present and future.
Experts in both sessions agree that , in most cases , telemedicine is helpful and here to stay. And the goals are clear: Telemedicine should protect patients fr o m exposure to infection and improve patient access, sa id Aruni Jayatilleke, MD, associate professor at Lewis Katz School of Medicine, Temple University. Reviewing telemedicine practices and data – in having more in-depth studies – are key to its optimal use, she says.
Experts in both sessions also agree that patient reported outcomes is vital to the future of telemedicine , which is proving more effective for certain disease types. “It turns out, gout is an excellent opportunity for using telemedicine,” says Dr. Jayatillek e . She cite d a June 2020 Singapore study that showed gout patients who used routine telemedicine versus those who had limited in-person visits achieved targeted uric acid levels more than four months sooner. And 15% of patients who had in-person visits had flares requiring hospitalization compared to zero patients in the telemedicine group. “This was an excellent showing of how telemedicine could actually improve care,” sa id Dr. Jayatilleke. A similar study in rheumatoid arthritis patients showed telemedicine and in-person patients had about the same outcome, she added .
Telerheumatology
: How COVID-19 Changed it & What's in the Future
In another session on telehealth , Chris Phillips, MD, chair of the ACR Insurance Subcommittee and member of the ACR COVID-19 Practice and Advocacy Task Force, discussed the use of telemedicine during and after the pandemic and its impact on virtual care. While telemedicine use has surged, the big question s are how it will be delivered, what regulators will allow and what insurance will cover once the pandemic has ended , Dr. Phillips said . While HHS has relaxed m any regulations , some legislative and financial barriers may not last once it’s over, sa id Dr. Phillips. “We feel that it’s likely that the ability to continue to see patients from their home and the removal of the rural restrictions may stick, but it’s not for sure,” he add ed . “There are a lot questions about whether the HIPAA-compliant platform issue will stick and what will happen to ‘audio-only’ and what’s going to happen to [health care providers] practicing across state lines.”
Christine Peoples, MD, director of the t elerheumatology p rogram and clinical assistant professor of medicine, Division of Rheumatology and Clinical Immunology at the University of Pittsburgh, discussed the past, present and future of telemedicine. According to Dr. Peoples, medicine at a distance dat es back to the Middle Ages , when bubonic plague information was transmitted across Europe via bonfires. T elemedicine as we know it today has been around since the 1960s, and has evolved into high-tech tool used in the treatment of complex conditions. A mong the top 10 specialties using telemedicine, rheumatology ranks second , Dr. Peoples said . Its greatest limitation is the physical exam, but the need now for it is greater than ever. — BRYAN D. VARGO
The Great Debate: JAKs vs. Anti-TNFs
When patients with rheumatoid arthritis (RA) don’t respond to methotrexate, current ACR guidelines recommend switching to an anti-tumor necrosis factor (TNF), such as adalimumab ( Humira ). But some doctors think these patients might benefit more from a J anus kinase inhibitor (JAK) like tofacitinib ( Xeljanz ). Vibeke Strand, MD, a biopharmaceutical consultant and adjunct clinical professor in the division of rheumatology/immunology at Stanford University , tackled this debate along with Michael Weinblatt , MD, rheumatologist at Brigham and Women’s Hospital and professor of medicine at Harvard Medical School, with Dr. Strand arguing for JAKs and Dr. Weinblatt against. Here’s what they said:
JAK p ros :
- More convenient because it’s a pill, not an injection or infusion
- Works quickly, with pain relief possible in two or three days and improvement of other symptoms in a few weeks
- Benefits last up to six months or longer
- Remission is more likely
- In trials, worked as well or better than most anti-TNFs plus methotrexate
JAK c ons:
- Only a n eight-year track record, so long-term side effects are unknown
- Can’t be used during pregnancy or breastfeeding
- High risk of infections, including herpes zoster (shingles)
- Black box warning for blood clots in the lungs and veins
- Dose can’t be lowered or drug withdrawn with out a flare
- Requires laboratory monitoring for serious infections and cancer
- Very expensive
Anti-TNF p ros :
- Twenty-two year track record, with the many side effects well - known
- Potentially safe during pregnancy and breastfeeding
- Can reduce the dose while retaining effectiveness
- Far fewer herpes zoster infections than JAKs and fewer hospitalizations for other serious infections
- Far less risk of blood clots
Anti-TNF c ons:
- Work more slowly than JAKs; may take weeks or months to see improvement
- Given by infusion or injection
- Patients may be less likely to reach remission
- Risk of serious infections and skin cancer
- Very expensive
Both doctors agreed that all pros and cons must be fully discussed with patients, who should have the final say in their treatment choice. A small poll of rheumatologists found that about two-thirds would be reluctant to switch to a JAK instead of an anti-TNF for patients who don’t do well on methotrexate. — LINDA RATH
Racial Disparities in Rheumatology: RA, OA & Arthroplasty
Studies find that factors like race and socioeconomic status play significant roles in determining disease outcomes for patients with RA or osteoarthritis (OA). Race is also an important predictor of outcomes and utilization of total knee arthroplasty (TKA) and total hip arthroplasty (THA) for OA patients in the U . S. Though African Americans report more pain and decreased function in knee OA than do whites, they are more likely to delay care, have more severe disease and are less likely to undergo TKA or THA.
Being Black is also associated with worse outcomes after knee replacement surgery , including a higher risk of complications, infection and need to have a revision procedure. While p overty also is linked to worsening procedural outcomes , whites in poverty tend to have better outcomes than Blacks of same socioeconomic status. For the management of knee OA, Black patients are also less likely to pursue complementary therapies, but more likely to use and find coping strategies like prayer to be helpful.
Black patients with RA similar ly experience delay s in seeking care and are less likely to seek aggressive therapy for disease management, including the use of biologic medications . Aggressive care is important to managing disease early, and delays are associated with worse pain, higher inflammatory markers and worsening disease activity. Researchers speculate this could be due to several factors including trust in the provider, access to care and knowledge of the therapy. There is little data about the types of interactions Black patients have with their care providers or research into how to make these outcomes better. However, Black patients report racism as a factor in hospital interactions. There’s also evidence that Black patients are much more likely to have surgery in states with expanded Medicaid programs and insurance coverage.
Finally, there is significant gap in studying Black patients in randomized control trials (RCTs) or participation in studies that can determine the effectiveness of certain treatments for arthritis. To amend this oversight, many researchers use e lectronic h ealth r ecords (EHR) to study outcomes of Black patients with various medications and treatments. Still, researchers express an urgent need to have more diverse representation in clinical trials to best study the efficacy of medications. — ROBYN ABREE
