S115 Access to High-Cost Biological Agents: Perceptions of Brazilian Patients With Inflammatory Bowel Diseases

Abstract

Background: Brazilian patients with inflammatory bowel diseases (IBD) requiring therapy with biological agents usually have access to medicines through the National Unified Healthcare System (SUS). There is no data regarding the perception of IBD patients on the access to these agents. The aim of this study was to analyze the perception of Brazilian IBD patients regarding the access (availability and provision quality) to high-cost drugs in the healthcare public system. Methods: A questionnaire-based survey was carried out between February 2022 and March 2022 in an IBD referral center in Brazil. All adult patients with an established diagnosis of ulcerative colitis (UC) or Crohn’s disease (CD) in use of biological therapy were invited to participate. We collected data on the type of biological drug in use, occasional lack or shortage of the biological agent (number of supplier failure or shortage, average time to regularize the distribution, losses in the treatment of patients), and difficulties reported by patients in obtaining the missing drugs. Results: Overall, 205 patients met the inclusion criteria and answered the questionnaire. The majority of the patients had CD (n = 161, 78.5%); nearly half of them (n = 104, 50.7%) were female, 87 patients (42.4%) were unemployed, and of these, 40 patients (46.0%) had government assistance as the main source of income. Medications in use: infliximab (n = 128, 62.5%); adalimumab (n = 39, 19.0%); certolizumab pegol (n = 8, 3.9%); vedolizumab (n = 14, 6.8%); ustekinumab (n = 15, 7.3%); golimumab (n = 1, 0.5%). 172 patients (83.9%) reported at least one lack of delivery of the biological medicine in the last year, with a single shortage in 42 patients (24.4%), at least 2 shortages in 47 patients (27.3%) and 3 or more shortages in 78 patients (45.3%). The average time to regularize the distribution was up to one month in 44 cases (25.6%), up to 2 months in 64 cases (37.2%) and more than 3 months in 56 patients (32.6%). Among the 172 patients who reported delays in drug delivery, 101 patients (58.7%) felt that the delay may have caused some type of impairment in their treatment (for example, emergence or worsening of symptoms, loss of response, relapse, treatment failure, need to change the drug, and emergence of adverse events). Conclusion(s): Brazilian IBD patients reported high rates of failure to dispensing biological drugs by the national healthcare system within a 1-year period. Our data point to the need for improvement of this system for the correct supply of medication to avoid treatment failure and relapse, in addition to avoiding negative expectations of patients regarding treatment with biological drugs.