First-person perspective: Russian practice of replacement therapy — patients' experience

BACKGROUND: Normal human immunoglobulin replacement therapy is the "gold standard" for treating antibody synthesis deficiency. Intravenous immunoglobulin improved patient survival, while subcutaneous immunoglobulin reduced adverse events and improved quality of life. The lack of objective statistics in Russia on immunoglobulin availability and its impact on adult patients' social activity necessitated this study. AIM: To analyze adult patients' subjective assessment of subcutaneous and intravenous immunoglobulin forms for replacement therapy. METHODS: The study included patients over 18 years of age with inborn errors of immunity and recommended replacement therapy. Participants completed an online questionnaire containing questions about disease history, quality of replacement therapy provision, tolerability, and personal preferences. The survey was conducted from April to August 2025. Pearson's χ2 and Mann–Whitney U tests were used for statistical analysis. The level of statistical significance was p 0.05. RESULTS: The survey involved 200 patients: 26 receiving subcutaneous immunoglobulin therapy, 158 receiving intravenous immunoglobulin, and 16 patients were not provided with medications. Subcutaneous immunoglobulin therapy showed advantages in terms of: the number of antibiotic therapy episodes (p = 0.048), presence of adverse reactions (p = 0.038), number of hospital days per month per patient (0.38 vs. 1.83, p 0.001), and days of disability per year per working patient (0.5 vs. 1.46, p = 0.049), and regularity of drug provision (p = 0.003). 56.52 % of respondents had restrictions on intravenous immunoglobulin therapy (venous access difficulties, comorbidities). Individuals with established disabilities have a better provision profile: 76.5 % of patients receive the drug regularly (87.7 % in full dose), while those without federal benefits receive it in 23.8 % of cases (42.9 % in full dose) (p 0.001 and p 0.001, respectively). CONCLUSION: The lack of federal benefits complicates patients' access to medications, prioritizing drug availability over quality of life. Russia lacks pharmacoeconomic studies evaluating immunoglobulin therapy effectiveness, highlighting the need for new therapy approaches and improved patient care systems. Expanding subcutaneous immunoglobulin use could address remote region therapy challenges, reduce outpatient clinic loads, lower inpatient care costs, and lessen disease impact on patients' lives.