Limited access to angioedema treatment leads to delays in care
Real world study finds limited availability of HAE meds on 3 continents
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People with hereditary angioedema (HAE) who have limited access to on-demand medications for swelling attacks are more likely to delay or avoid treatment — and report poorer disease control and quality of life — than those for whom meds are readily available, according to a real-world survey of nearly 100 HAE patients from South Africa, Hong Kong, and Argentina.
The researchers found that concerns about medication availability and treatment costs on all three continents influenced when — or even whether — patients treated their attacks. This was particularly the case in South Africa, where access to on-demand therapies was more limited than in Hong Kong or Argentina, the team noted.
Even among patients whose disease was considered well controlled, quality of life remained worse in South Africa, suggesting that barriers to treatment may affect patients beyond the frequency or severity of attacks, per the researchers.
“Disparities in [on-demand treatment] access and treatment behaviors persist even among countries of similar income levels,” the researchers wrote. “Well-controlled disease alone may be insufficient to normalize [health-related quality of life] in settings with access challenges.”
The team added: “Locally informed strategies remain essential to reducing the burden of HAE.”
The study, “Limited access to on-demand treatment in hereditary angioedema is linked to delayed treatment and impaired patient-reported outcomes: A multinational real-world study,” was published in The Journal of Allergy and Clinical Immunology.
In HAE, recurrent attacks of swelling occur in the deeper layers of the skin or in mucous membranes, and can affect the skin, digestive tract, and airways. While attacks usually resolve on their own, swelling affecting the throat can become life-threatening if not treated promptly.
International guidelines urge rapid access to HAE treatment
Treatment includes both preventive medications, to reduce how often attacks occur, and on-demand treatments, which are taken as soon as symptoms begin with a goal of stopping an attack from worsening.
Current international guidelines recommend that people with HAE not only have rapid access to on-demand medications but also use them as early as possible during an attack.
“Unfortunately, disparities in access to appropriate diagnostics and therapeutics for HAE persist globally,” the researchers wrote. “Although data from non-Western regions are limited, longer diagnostic delays and reduced treatment access in Asia, Africa, and South America have been described previously.”
Moreover, according to the team, few studies have explored “patient decision making” regarding HAE treatment in these regions.
Because relatively little is known about how access to treatment affects patients’ medication decisions and daily lives in these underrepresented areas, researchers from institutions on all three continents surveyed adults living with HAE about their treatment. The study involved 98 patients: 36 from South Africa, 32 from Argentina, and 30 from Hong Kong.
Participants answered questions about treatment access and reasons for delaying treatment. Individuals from Hong Kong and South Africa also completed validated questionnaires assessing disease control and quality of life.
No patients in South Africa treated attacks immediately
The researchers found major differences in access to HAE treatments for patients across the three areas. While all participants in Hong Kong and 97% in Argentina had access to on-demand treatment, the data showed that fewer than three-quarters (72%) of those in South Africa did. South African patients were also more likely to rely only on preventive medications or receive no HAE-specific treatment.
Access barriers also influenced how patients managed their attacks. None of the South African participants reported treating attacks immediately after symptoms began, compared with 13% of those in Hong Kong and 23% in Argentina. According to the researchers, those in South Africa also waited longer, on average, before using on-demand treatment, were less likely to take a second dose if symptoms returned, and often chose not to treat attacks below the shoulders — a decision made to save their limited medication supply.
South African participants were much more likely to delay or forgo treatment because they did not have medication available, worried they would not be able to obtain more doses, or were concerned about treatment costs, according to the survey responses.
Our data demonstrate that differences in treatment access … exist among countries in similar income brackets, and these differences have a significant impact on the lived patient experience and treatment decisions.
Suboptimal access to treatment also translated into poorer disease control, especially in the Southern Hemisphere. The data showed that 17% of participants in South Africa and 16% in Argentina had been free of attacks during the previous three months. That compared with 80% of respondents in Hong Kong. Further, fewer than half of South African participants (41%) had well-controlled HAE, compared with 87% in Hong Kong
Quality of life followed a similar pattern. About two-thirds of South African participants reported that HAE had a moderate or severe impact on their daily lives, compared with 7% of those in Hong Kong.
Even among patients whose disease was considered well controlled, quality of life remained worse in South Africa. The researchers suggested this may partly reflect the lasting psychological impact of living with limited access to treatment, noting that many South African participants reported having lost a family member to HAE.
“Our data demonstrate that differences in treatment access … exist among countries in similar income brackets, and these differences have a significant impact on the lived patient experience and treatment decisions,” the researchers wrote. “Improving access to [on-demand treatment] is critical to achieving high-quality care for HAE globally.”
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