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The socioeconomic impact and healthcare costs of hereditary angioedema

Hereditary angioedema (HAE) places a cost burden on patients and their families, which represents both direct medical costs as well as indirect costs related to loss of productivity as a result of attacks. This article offers key insights into the impact of HAE on healthcare costs, together with the impact on patients’ careers and lives.1–4

HAE attacks can result in unpredictable swelling and deformities that restrict everyday personal and work activities. Laryngeal attacks, for example, can result in hoarseness, stridor, tightening of the chest, voice changes and difficulty breathing.2 In addition to discomfort and distress, this can affect work for patients who rely on their voice. For example, Andreea told Takeda about how she needed to adjust the way she spoke, make changes to her daily habits and take sick days because of HAE:3

“I become anxious if I think I might trigger one, so I’m careful – I take breaks from marking, and when teaching, I try to speak from my abdomen instead of my vocal cords. I even avoid ice-cream... I’m lucky to work close to home, which reduces my stress. I sometimes need to take sick days; for example, after teaching all day followed by parents evening, I needed to rest my voice the following day.”3

— Andreea, Teacher and HAE sufferer

Attacks can also affect the pulmonary, renal, urinary and musculoskeletal organs and result in severe headaches, vision disturbances, impaired balance, disorientation, chest pain and severe pain when eating. Pain and swelling of the shoulder and hip joints, neck, back and arm muscles are also reported and each or all of these can stop patients from performing the most basic tasks for work.2 Accounting for inflation, the average annual cost per patient in 2017 would be more than $65,000.6

“I work as a lecturer at one of the universities. I teach immunology and haematology... I have swellings of the hands, feet and abdomen, which affect my normal everyday activities. If my hands swell, I can’t work in the laboratory and if my feet swell, I can’t stand in the lecture room.”3

— Martin, Lecturer and HAE sufferer

Attacks can have such a significant impact on work and careers: The Hereditary Angioedema Burden of Illness In Europe study in 2014 found that over half of patients reported that having HAE hindered their educational and/or career advancement (Figure 1).1

Figure 1. Impact of HAE on career and education (N=164). Adapted from Aygören-Pürsün et al. 2014.1

The direct costs to patients can also be significant. A 2018 review found that the estimated annual cost associated with HAE averaged around $42,000 (US dollars) per patient, with estimated annual costs of $14,000 for patients suffering mild attacks, $27,000 for those with moderate attacks and $96,000 for patients with severe attacks. Hospital care accounted for ~67% of direct medical costs, while indirect costs such as loss of work productivity and loss of income accounted for ~$16,000 for the average patient.2

While progress has been made, there is an unmet need for effective long-term prophylactic therapies to help enable a more predictable and attack-free life for patients.4

Watch this HAE Burden of Illness mini clip to hear Andreea and Martin talking about their experiences.

Attacks can have a significant impact on work and careers: The Hereditary Angioedema Burden of Illness In Europe study in 2014 found that over half of patients reported that having HAE hindered their educational and/or career advancement.1

  1. Aygören-Pürsün E, et al. Socioeconomic burden of hereditary angioedema: Results from the hereditary angioedema burden of illness study in Europe. Orphanet J Rare Dis 2014;9:99.
  2. Bernstein JA. Severity of hereditary angioedema, prevalence, and diagnostic considerations. Am J Manag Care 2018;24(Suppl. 14):S292–8.
  3. Patient interviews. The socioeconomic impact of HAE. A film produced by Takeda for the Rare Disease Hub 2021. Available at: Accessed February 2022.
  4. Craig T, et al. Long-term prophylaxis therapy in patients with hereditary angioedema with C1 inhibitor deficiency. Ann Allergy Asthma Immunol 2018;121:673–9.
  5. Wilson DA, et al. Economic costs associated with acute attacks and long-term management of hereditary angioedema. Ann Allergy Asthma Immunol. 2010;104:314–20.
  6. Lumry WR, et al. Hereditary Angioedema: The Economics of Treatment of an Orphan Disease. Treatment of an Orphan Disease. Front. Med. 2018;5:22.
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February 2022