Recurrent Porphyria Attacks Linked to ‘Significant Public Costs’

Patricia Inácio, PhD avatar

by Patricia Inácio, PhD |

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Recurrent attacks in people with acute hepatic porphyria (AHP) are associated with lower lifetime earnings and pose a higher burden to public health, particularly in disability and healthcare costs, a Belgian study reports.

Indeed, the costs of lifetime healthcare for patients in Belgium who are unable to work due to AHP were estimated to be more than €3 million (about $3.5 million) higher than those of the general population, for whom such costs average about €70,000 ($81,000).

These findings suggest that reducing the number of porphyria attacks may improve patients’ health and reduce the economic burden — the public health costs — they pose on themselves, as well as on the general economy.

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The study, “Estimating the broader fiscal consequences of acute hepatic porphyria (AHP) with recurrent attacks in Belgium using a public economic analytic framework,” was published in the Orphanet Journal of Rare Diseases.

People with AHP have defects in the signaling cascade responsible for the production of heme, a key molecule that allows red blood cells to carry oxygen. While the severity of symptoms varies among patients, people with the four types of acute porphyria often experience chronic pain, mood disorders, and gastrointestinal symptoms, all of which impact patients’ daily functioning and quality of life.

In fact, recurrent attacks can prevent individuals from working and achieving lifetime career goals, which may significantly impact their finances.

In this study, a group of researchers in Belgium and other European countries evaluated the economic impact of AHP, including the costs associated with the disease incurred by patients and society in general.

A public economic framework — taking into consideration lifetime tax contributions and government payments for disability, pensions, and healthcare costs — was used to estimate the overall financial burden posed by AHP. The costs first were analyzed for AHP patients and then compared with those of the general Belgian population.

Specifically, researchers compared workforce participation, age-specific earnings (including wages and taxes), disability costs, and retirement at age 65 between both groups.

Since AHP manifests differently among individuals, making comparisons difficult, the researchers created a sort of working model of a porphyria patient. Such patients, the researchers considered, started experiencing symptoms at age 30, had an average of 12 attacks per year, and had an expected lifetime of 100 years.

Additionally, the investigators considered three possible scenarios. In the first, AHP attacks occurred throughout life and patients were unable to work. In the second scenario, AHP attacks lasted 10 years, but then resolved when patients reached the age of 40. Nevertheless, patients in this scenario were also unable to work due to chronic side effects attributed to AHP.

In the last scenario, attacks were sustained for the same period of time (10 years) until patients reached their 40s, at which time they were able to return to work.

Analyses revealed that, compared with the general population for whom lifetime earnings amounted to €632,367 (about $730,000) per person, among AHP patients who were unable to work (scenarios one and two), lifetime earnings were reduced by €347,802 (just over $400,000).

Patients in whom AHP attacks ceased after 10 years and who were able to return to work had lifetime earnings of €509,141 (about $590,000), meaning an increase of €224,575 (about $260,000) per person relative to AHP patients who were permanently out of work.

Lifetime taxes paid by people with AHP who were unable to work were in general much lower compared with those incurred by the general population in this analysis. Specifically, the taxes paid by non-working patients was determined to be €251,535 (just over $290,000) versus €434,722 (just over $500,000), corresponding to a cut of €183,187 (about $212,000) in tax contributions per an average AHP patient.

Individuals in this analysis who ceased having attacks and were able to return to work had a gross tax payment of €369,819 (about $425,000).

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For AHP patients who remained unable to work, disability costs skyrocketed, reaching €287,519 (about $333,000). Those costs were well above those estimated for AHP patients who returned to work after 10 years (€108,335, or around $125,000) and the general population (€40,277, or about $47,000).

“The elimination of AHP attacks could also lead to reductions in disability payments of €179,184 [about $210,000 per person],” the researchers wrote.

Lifetime healthcare costs per person for AHP patients who remained out of work without ever returning (scenario one) were estimated to reach €3,100,534 (about $3,600,000), while those for the general population were €70,218 (about $81,000). That difference is €3,030,316 (about $3.5 million).

This increase was mainly the result of frequent hospitalizations associated with porphyria attacks. AHP patients in scenarios two and three had lifetime healthcare costs of €1,589,502 (about $1,800,000).

Across all scenarios, healthcare costs dominated.

Overall, “the lifetime costs for a person with 12 attacks per annum factoring in transfers, taxes and healthcare costs are estimated to be €3,460,745 [$4,004,182 per person],” the researchers wrote.

“Due to severe disability resulting from constant attacks, AHP patients with recurrent attacks incur significant public costs. Lifetime taxes paid are reduced as these attacks occur during peak earning and working years,” the researchers wrote.

“In those patients, reducing AHP attacks can confer significant fiscal benefits for government, including reduced healthcare costs, reduced disability payments and improved tax revenue,” the team concluded.

The researchers had noted that a natural history study in Belgium found that 65% of people with AHP reported experiencing chronic symptoms, with 20% having six to 10 attacks in the preceding 12 months. As many as 32% reported experiencing more than 10 attacks in the previous year.