Access to High-Cost Biological Agents: Perceptions of Brazilian Patients with Inflammatory Bowel Diseases.

Rogerio Serafim Parra, Sandro da Costa Ferreira, Vanessa Foresto Machado, Cintia Maura Caseiro Nigro, José Joaquim Ribeiro da Rocha, Luiz Ernesto de Almeida Troncon, Omar Feres
Author Information
  1. Rogerio Serafim Parra: Department of Surgery and Anatomy, Ribeirão Preto Medical School, University of São Paulo, Ribeirão Preto 14048-900, Brazil. ORCID
  2. Sandro da Costa Ferreira: Department of Clinical Medicine, Ribeirão Preto Medical School, University of São Paulo, Ribeirão Preto 14048-900, Brazil. ORCID
  3. Vanessa Foresto Machado: Department of Surgery and Anatomy, Ribeirão Preto Medical School, University of São Paulo, Ribeirão Preto 14048-900, Brazil.
  4. Cintia Maura Caseiro Nigro: Department of Surgery and Anatomy, Ribeirão Preto Medical School, University of São Paulo, Ribeirão Preto 14048-900, Brazil.
  5. José Joaquim Ribeiro da Rocha: Department of Surgery and Anatomy, Ribeirão Preto Medical School, University of São Paulo, Ribeirão Preto 14048-900, Brazil.
  6. Luiz Ernesto de Almeida Troncon: Department of Surgery and Anatomy, Ribeirão Preto Medical School, University of São Paulo, Ribeirão Preto 14048-900, Brazil.
  7. Omar Feres: Department of Surgery and Anatomy, Ribeirão Preto Medical School, University of São Paulo, Ribeirão Preto 14048-900, Brazil.

Abstract

BACKGROUND AND AIMS: Brazilian patients with inflammatory bowel diseases (IBD) requiring therapy with biological agents usually have access to medicines through the National Unified Health Care System (SUS). This study aimed to analyze Brazilian IBD patient perception regarding access (availability and provision quality) to high-cost drugs in the public health care system.
METHODS: A questionnaire-based survey was carried out in an IBD referral center in Brazil. All adult patients with an established diagnosis of ulcerative colitis (UC) or Crohn's disease (CD) that use biological therapy were invited to participate. Data were collected on the biological in use, lack of distribution (number of absences, average time to regularization, impairment in patient treatment), and difficulties reported by patients in obtaining the drugs.
RESULTS: Overall, 205 patients met the inclusion criteria and answered the questionnaire. Most of the patients had CD ( = 161, 78.5%), nearly half of them ( = 104, 50.7%) were female; 87 patients (42.4%) were unemployed, and of these, 40 patients (19.5%) had government assistance as the main source of income. Regarding the medications used, infliximab ( = 128, 62.5%) was the most used medication, followed by adalimumab ( = 39, 19.0%). Most patients ( = 172, 83.9%) reported at least one failed delivery of biological medicine in the last year, with a single shortage in forty-two patients (24.4%), at least two shortages in forty-seven patients (27.3%), and three or more shortages in seventy-eight patients (45.3%). The average time to regularize the distribution was up to 1 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 patients who reported delays, 101 patients (58.7%) felt that it may have impaired their treatment.
CONCLUSION: Brazilian IBD patients reported high rates of failure to dispense biological drugs by the national healthcare system within one year. Our data highlight the need for improvement in this system for the correct supply of medication to avoid treatment failure and relapse.

Keywords

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Word Cloud

Created with Highcharts 10.0.0patientsbiological=BrazilianIBDreportedtherapydrugssystemtreatment5%inflammatoryboweldiseasesaccesspatientulcerativecolitisdiseaseCDusedistributionaveragetime7%4%19usedmedicationleastoneyearshortages3%cases6%monthsfailureBACKGROUNDANDAIMS:requiringagentsusuallymedicinesNationalUnifiedHealthCareSystemSUSstudyaimedanalyzeperceptionregardingavailabilityprovisionqualityhigh-costpublichealthcareMETHODS:questionnaire-basedsurveycarriedreferralcenterBraziladultestablisheddiagnosisUCCrohn'sinvitedparticipateDatacollectedlacknumberabsencesregularizationimpairmentdifficultiesobtainingRESULTS:Overall205metinclusioncriteriaansweredquestionnaire16178nearlyhalf10450female8742unemployed40governmentassistancemainsourceincomeRegardingmedicationsinfliximab12862followedadalimumab390%172839%faileddeliverymedicinelastsingleshortageforty-two24twoforty-seven27threeseventy-eight45regularize1month4425264372%35632Amongdelays10158feltmayimpairedCONCLUSION:highratesdispensenationalhealthcarewithindatahighlightneedimprovementcorrectsupplyavoidrelapseAccessHigh-CostBiologicalAgents:PerceptionsPatientsInflammatoryBowelDiseasesCrohn’spatient-reportedoutcomes

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