Part 4/11:

The family’s narrative touches deeply on the issue of subsidies, which are crucial to making treatment affordable. HemLibra's monthly cost of $31,000 drops dramatically to $3,000 with government assistance, but this support requires annual renewal. The family’s income, being just above the eligibility threshold, often puts them in a precarious position — on the edge of losing these vital subsidies whenever family earnings increase.

The parents’ employment status and the family’s income directly influence their subsidy eligibility. This uncertainty adds emotional stress, as they constantly face the risk of losing financial aid that is integral to their child's wellbeing.