More Than Skin Deep: Assessing Gaps in Care for Patients with Alopecia Areata, Atopic Dermatitis, and Psoriatic Arthritis
By Emily Ortman, SWHR Director of Communications
Flawless skin. Long, painted nails. Full and glossy hair. Unrealistic societal expectations around appearance can influence how women view themselves and how they are treated by others, in turn, affecting their social and mental health. Individuals with skin conditions are more likely to experience disorders like depression and anxiety, significantly impacting their quality of life.
“You feel flawed in a society that puts so much emphasis and value on having a perfect outward appearance,” said Kelly Barta, an eczema patient and State Advocacy Project Manager at the Allergy & Asthma Network. “Having a condition that makes you feel ugly is something that causes you to do whatever you can to hide from everyone.”
According to the National Organization for Rare Disorders, there are approximately 2.5 million individuals in the United States affected by alopecia areata – an autoimmune disease that causes hair loss primarily on the scalp, with frequent involvement of the eyebrows, eyelashes, and other areas of the body. Alopecia is slightly more common in women, and there is a significant social stigma associated with female hair loss that can often lead to depression, low self-esteem, and diminished quality of life.
Atopic dermatitis is another autoimmune skin disease that affects about 18 million people. It is the most common type of eczema and is characterized by itchy, dry, flakey, and irritated skin. Studies have shown it is more common in adult women than men and can affect women differently over the lifespan.
About 8 million people have psoriasis, an immune-mediated systemic disease which manifests on the skin, causing raised patches or plaques. Up to 30% of those patients also develop psoriatic arthritis. Studies have indicated that women with psoriatic arthritis have worse patient-reported outcomes for pain, swollen joint count, responses to treatment, and remission.
SWHR recently convened a diverse working group of expert researchers, health care providers, patient advocates, and policy leaders for a roundtable discussion on the health, social, and economic impacts of these conditions on women – as patients, caregivers, and health care decision-makers for their families. The roundtable participants highlighted gaps and unmet needs in research, clinical care, education, and policy that should be addressed to improve patient care.
Coordinating Clinical Care
For many patients with autoimmune and immune-related skin conditions, their primary care provider or pediatrician is their first visit. However, a lack of knowledge among these providers on how to diagnose and treat skin conditions and comorbidities, as well as delays in referring patients to specialists, can impede timely care, roundtable participants remarked.
“If patients go to urgent care or a primary care provider, oftentimes they get treated with steroids and there is a lack of awareness of a lot of the other treatment options,” said Dr. Shawn G. Kwatra, Assistant Professor of Dermatology at Johns Hopkins School of Medicine.
Roundtable participants stressed the need for better collaboration among the various types of health care providers — including primary care providers, pediatricians, dermatologists, allergists, immunologists, and rheumatologists — to achieve more efficient diagnosis, treatment, and long-term care management of patients.
Diagnosis is particularly challenging for psoriatic arthritis because there is no specific diagnostic test for this condition. “I can’t tell you the number of patients I have on a weekly basis who have had months-long delay in diagnosis that has resulted in worsened disability,” said Dr. Stacie Bell, Chief Scientific and Medical Officer at the National Psoriasis Foundation. She said dermatologists need to be better trained on how to screen psoriasis patients for psoriatic arthritis.
Another diagnostic challenge stems from historical racial biases in the health care system. Skin conditions like atopic dermatitis and psoriasis have traditionally been described and pictured in medical texts on white skin and medical training on identifying conditions across skin colors is not universal. However, efforts to address this educational gap are underway. The National Psoriasis Foundation revamped its website and educational materials to better reflect a diversity of skin colors, Bell said. The American Academy of Dermatology (AAD) is also creating a photobank of conditions on different types of skin to ensure representation of all skin tones in professional and patient education, said Leslie Stein Lloyd, AAD’s Director of Public Policy and Healthcare Economics.
Finally, providers noted challenges with using disease severity scales for assessing and treating patients with skin conditions. For example, psoriasis severity has been classified by body surface area covered, but having psoriasis on certain body areas, such as the scalp or genitals, can have a greater impact on quality of life despite the small size of the affected area, Bell said. The same problem occurs with alopecia, with eyebrow loss and hair loss in certain areas having a greater effect on patients, said Dr. Arash Mostaghimi, Assistant Professor of Dermatology at Brigham & Women’s Hospital. “Quality of life and impact on health outcomes isn’t necessarily going to be set by 50% hair loss or 10% body surface area,” added Bell.
Increasing Attention to Mental Health and Patient Education
The impact of conditions like alopecia, atopic dermatitis, and psoriatic arthritis on mental health plays a large role in patient quality of life and should be considered when treating patients, especially children and teens. “It plays a big role in self-esteem,” said Dr. Purvi Parikh, Clinical Assistant Professor in the Department of Pediatrics at the NYU School of Medicine. “They don’t want to interact with other children, go to school, or participate in activities they normally would.”
For a better understanding of the overall burden of disease, research is needed on how these conditions affect the psychosocial wellbeing of patients and caregivers. Alopecia and eczema are common in children, so it’s important to consider the burden and impact on caregivers, who are most often mothers. Barta remarked how parents of children with eczema face challenges such as loss of sleep, missing out on social activities, stress in marriage or family relationships, having to step away from work, or having to quit their jobs entirely in order to care for their sick child. There is more to understand about the underlying biological effects of these diseases on mental health as well.
Roundtable participants also emphasized the need for providers to improve communication with patients and caregivers about the systemic, chronic nature of these conditions and the expectations for long-term disease management. “Patients also need to understand that this is chronic and you are not just going to treat it once and it’s gone,” Barta said.
When Thea Chassin, founder of the nonprofit, Bald Girls Do Lunch, was first diagnosed with alopecia areata, she said her provider did not take the time to educate her about the condition. “I would like there to be communication partnerships between the diagnosing physician and the patient,” she said. Physicians should provide or refer patients to accessible, culturally appropriate resources to educate them about their condition.
Understanding the Economic Burden
Roundtable participants cited the need for more data on the economic burden, including indirect costs, for alopecia, atopic dermatitis, and psoriatic arthritis. For example, patients with atopic dermatitis may need to buy special clothes that won’t irritate their skin, certain foods that won’t trigger flare-ups, and a variety of over-the-counter moisturizers and body products to help manage their condition.
“There isn’t a mechanism to capture that information,” Stein Lloyd said. “If you don’t capture those costs, then they can’t be considered.” AAD analyzes health care claims data to assess the costs of dermatological conditions, but she stressed that this does do not include the indirect costs. Partnerships between researchers and patient groups could serve as a path for filling these information gaps.
Improving Access to Treatments
Patients with alopecia, atopic dermatitis, and psoriatic arthritis often struggle to gain timely access to treatments due to insurance issues like prior authorization and the denial or lack of coverage for items not typically considered health-related, such as wigs.
“There are no cures right now for these diseases, so we need to protect access to treatment,” said Brett McReynolds, Vice President, Public Policy for the American Autoimmune Related Diseases Association. “At the end of the day, a lot of patients just don’t have the time to fully understand the complexity and limits of their health insurance plan.…There are a lot of barriers put in place when it comes to patients’ access to care with their health insurance.”
Mostaghimi said wigs are a substantial expense for alopecia patients and are usually not covered by insurance. “Patients sacrifice vacations, clothing, food sometimes, in order to pay,” he said. “Data show hair pieces and wigs can lead to improvement in life function.”
Providers can submit a letter of medical necessity to insurers to try to get wigs covered, but the physicians said their efforts are usually unsuccessful. “The insurance companies tell patients, ‘Your condition is just cosmetic,’ but there is reimbursement for fake eyes, there is reimbursement for fake breasts, and there is reimbursement for fake testicles,” Chassin said, noting how all of these prosthetics have important functions that extend beyond cosmetics to the patients that request them.
Prior authorization is a process that requires providers to get advance approval from a health plan before a specific treatment qualifies for coverage. Step therapy is a type of prior authorization where insurers require patients to try one or more treatments and fail on them before covering other, usually more expensive, options that were originally prescribed by the treating provider.
Prior authorization requirements can create barriers to certain treatments and the off-label use of treatments, the roundtable participants said, and many doctors’ offices lack the bandwidth to navigate these onerous processes effectively. The AAD is trying to help reduce those barriers by working both with payers and physicians, Stein Lloyd said. Many patient advocacy groups have resources to assist provider offices as well.
“It’s nice that treatments exist, but now we have to make sure all our patients can have access to them,” Parikh said, noting that some of her patients have had to rely on free samples because their insurance won’t approve coverage for a treatment. “We are spending so much time fighting to get these medicines that should be covered,” Kwatra added.
Looking Ahead
Improving care for patients with alopecia, atopic dermatitis, and psoriatic arthritis will require addressing barriers across research, clinical care, patient and provider education, and health care policy. Finding ways to raise public awareness about these conditions without also increasing the already substantial stigma is also critical.
SWHR will continue to work with its Autoimmune Skin Working Group members to pinpoint opportunities to increase awareness, advance policies that expand access to coverage and care for women with autoimmune and immune-related skin conditions, and advocate for improved health equity and outcomes for women as both patients and caregivers.
By Emily Ortman, SWHR Director of Communications
Flawless skin. Long, painted nails. Full and glossy hair. Unrealistic societal expectations around appearance can influence how women view themselves and how they are treated by others, in turn, affecting their social and mental health. Individuals with skin conditions are more likely to experience disorders like depression and anxiety, significantly impacting their quality of life.
“You feel flawed in a society that puts so much emphasis and value on having a perfect outward appearance,” said Kelly Barta, an eczema patient and State Advocacy Project Manager at the Allergy & Asthma Network. “Having a condition that makes you feel ugly is something that causes you to do whatever you can to hide from everyone.”
According to the National Organization for Rare Disorders, there are approximately 2.5 million individuals in the United States affected by alopecia areata – an autoimmune disease that causes hair loss primarily on the scalp, with frequent involvement of the eyebrows, eyelashes, and other areas of the body. Alopecia is slightly more common in women, and there is a significant social stigma associated with female hair loss that can often lead to depression, low self-esteem, and diminished quality of life.
Atopic dermatitis is another autoimmune skin disease that affects about 18 million people. It is the most common type of eczema and is characterized by itchy, dry, flakey, and irritated skin. Studies have shown it is more common in adult women than men and can affect women differently over the lifespan.
About 8 million people have psoriasis, an immune-mediated systemic disease which manifests on the skin, causing raised patches or plaques. Up to 30% of those patients also develop psoriatic arthritis. Studies have indicated that women with psoriatic arthritis have worse patient-reported outcomes for pain, swollen joint count, responses to treatment, and remission.
SWHR recently convened a diverse working group of expert researchers, health care providers, patient advocates, and policy leaders for a roundtable discussion on the health, social, and economic impacts of these conditions on women – as patients, caregivers, and health care decision-makers for their families. The roundtable participants highlighted gaps and unmet needs in research, clinical care, education, and policy that should be addressed to improve patient care.
Coordinating Clinical Care
For many patients with autoimmune and immune-related skin conditions, their primary care provider or pediatrician is their first visit. However, a lack of knowledge among these providers on how to diagnose and treat skin conditions and comorbidities, as well as delays in referring patients to specialists, can impede timely care, roundtable participants remarked.
“If patients go to urgent care or a primary care provider, oftentimes they get treated with steroids and there is a lack of awareness of a lot of the other treatment options,” said Dr. Shawn G. Kwatra, Assistant Professor of Dermatology at Johns Hopkins School of Medicine.
Roundtable participants stressed the need for better collaboration among the various types of health care providers — including primary care providers, pediatricians, dermatologists, allergists, immunologists, and rheumatologists — to achieve more efficient diagnosis, treatment, and long-term care management of patients.
Diagnosis is particularly challenging for psoriatic arthritis because there is no specific diagnostic test for this condition. “I can’t tell you the number of patients I have on a weekly basis who have had months-long delay in diagnosis that has resulted in worsened disability,” said Dr. Stacie Bell, Chief Scientific and Medical Officer at the National Psoriasis Foundation. She said dermatologists need to be better trained on how to screen psoriasis patients for psoriatic arthritis.
Another diagnostic challenge stems from historical racial biases in the health care system. Skin conditions like atopic dermatitis and psoriasis have traditionally been described and pictured in medical texts on white skin and medical training on identifying conditions across skin colors is not universal. However, efforts to address this educational gap are underway. The National Psoriasis Foundation revamped its website and educational materials to better reflect a diversity of skin colors, Bell said. The American Academy of Dermatology (AAD) is also creating a photobank of conditions on different types of skin to ensure representation of all skin tones in professional and patient education, said Leslie Stein Lloyd, AAD’s Director of Public Policy and Healthcare Economics.
Finally, providers noted challenges with using disease severity scales for assessing and treating patients with skin conditions. For example, psoriasis severity has been classified by body surface area covered, but having psoriasis on certain body areas, such as the scalp or genitals, can have a greater impact on quality of life despite the small size of the affected area, Bell said. The same problem occurs with alopecia, with eyebrow loss and hair loss in certain areas having a greater effect on patients, said Dr. Arash Mostaghimi, Assistant Professor of Dermatology at Brigham & Women’s Hospital. “Quality of life and impact on health outcomes isn’t necessarily going to be set by 50% hair loss or 10% body surface area,” added Bell.
Increasing Attention to Mental Health and Patient Education
The impact of conditions like alopecia, atopic dermatitis, and psoriatic arthritis on mental health plays a large role in patient quality of life and should be considered when treating patients, especially children and teens. “It plays a big role in self-esteem,” said Dr. Purvi Parikh, Clinical Assistant Professor in the Department of Pediatrics at the NYU School of Medicine. “They don’t want to interact with other children, go to school, or participate in activities they normally would.”
For a better understanding of the overall burden of disease, research is needed on how these conditions affect the psychosocial wellbeing of patients and caregivers. Alopecia and eczema are common in children, so it’s important to consider the burden and impact on caregivers, who are most often mothers. Barta remarked how parents of children with eczema face challenges such as loss of sleep, missing out on social activities, stress in marriage or family relationships, having to step away from work, or having to quit their jobs entirely in order to care for their sick child. There is more to understand about the underlying biological effects of these diseases on mental health as well.
Roundtable participants also emphasized the need for providers to improve communication with patients and caregivers about the systemic, chronic nature of these conditions and the expectations for long-term disease management. “Patients also need to understand that this is chronic and you are not just going to treat it once and it’s gone,” Barta said.
When Thea Chassin, founder of the nonprofit, Bald Girls Do Lunch, was first diagnosed with alopecia areata, she said her provider did not take the time to educate her about the condition. “I would like there to be communication partnerships between the diagnosing physician and the patient,” she said. Physicians should provide or refer patients to accessible, culturally appropriate resources to educate them about their condition.
Understanding the Economic Burden
Roundtable participants cited the need for more data on the economic burden, including indirect costs, for alopecia, atopic dermatitis, and psoriatic arthritis. For example, patients with atopic dermatitis may need to buy special clothes that won’t irritate their skin, certain foods that won’t trigger flare-ups, and a variety of over-the-counter moisturizers and body products to help manage their condition.
“There isn’t a mechanism to capture that information,” Stein Lloyd said. “If you don’t capture those costs, then they can’t be considered.” AAD analyzes health care claims data to assess the costs of dermatological conditions, but she stressed that this does do not include the indirect costs. Partnerships between researchers and patient groups could serve as a path for filling these information gaps.
Improving Access to Treatments
Patients with alopecia, atopic dermatitis, and psoriatic arthritis often struggle to gain timely access to treatments due to insurance issues like prior authorization and the denial or lack of coverage for items not typically considered health-related, such as wigs.
“There are no cures right now for these diseases, so we need to protect access to treatment,” said Brett McReynolds, Vice President, Public Policy for the American Autoimmune Related Diseases Association. “At the end of the day, a lot of patients just don’t have the time to fully understand the complexity and limits of their health insurance plan.…There are a lot of barriers put in place when it comes to patients’ access to care with their health insurance.”
Mostaghimi said wigs are a substantial expense for alopecia patients and are usually not covered by insurance. “Patients sacrifice vacations, clothing, food sometimes, in order to pay,” he said. “Data show hair pieces and wigs can lead to improvement in life function.”
Providers can submit a letter of medical necessity to insurers to try to get wigs covered, but the physicians said their efforts are usually unsuccessful. “The insurance companies tell patients, ‘Your condition is just cosmetic,’ but there is reimbursement for fake eyes, there is reimbursement for fake breasts, and there is reimbursement for fake testicles,” Chassin said, noting how all of these prosthetics have important functions that extend beyond cosmetics to the patients that request them.
Prior authorization is a process that requires providers to get advance approval from a health plan before a specific treatment qualifies for coverage. Step therapy is a type of prior authorization where insurers require patients to try one or more treatments and fail on them before covering other, usually more expensive, options that were originally prescribed by the treating provider.
Prior authorization requirements can create barriers to certain treatments and the off-label use of treatments, the roundtable participants said, and many doctors’ offices lack the bandwidth to navigate these onerous processes effectively. The AAD is trying to help reduce those barriers by working both with payers and physicians, Stein Lloyd said. Many patient advocacy groups have resources to assist provider offices as well.
“It’s nice that treatments exist, but now we have to make sure all our patients can have access to them,” Parikh said, noting that some of her patients have had to rely on free samples because their insurance won’t approve coverage for a treatment. “We are spending so much time fighting to get these medicines that should be covered,” Kwatra added.
Looking Ahead
Improving care for patients with alopecia, atopic dermatitis, and psoriatic arthritis will require addressing barriers across research, clinical care, patient and provider education, and health care policy. Finding ways to raise public awareness about these conditions without also increasing the already substantial stigma is also critical.
SWHR will continue to work with its Autoimmune Skin Working Group members to pinpoint opportunities to increase awareness, advance policies that expand access to coverage and care for women with autoimmune and immune-related skin conditions, and advocate for improved health equity and outcomes for women as both patients and caregivers.