An unprecedented survey by USP reveals that 83% of patients with inflammatory bowel diseases (IBDs) treated at the Hospital das Clínicas in Ribeirão Preto had difficulties in gaining access to high-cost medicines through the SUS.
May is awareness month for Crohn’s disease and ulcerative colitis, autoimmune conditions that promote inflammation in the gastrointestinal tract. The lack of infliximab, a drug used in severe cases of IBD, has been reported at least since September 2021 in the city of Ribeirão Preto, in the interior of São Paulo.
According to a patient in the region, medication has been missing frequently. She says she has already turned to the Public Ministry and the Public Defender’s Office to try to solve the problem.
According to the doctor Rogerio Serafim Parra, responsible for the hospital’s IBD outpatient clinic, patients with mild illness who are left without medication may have some symptoms again, but serious patients without medication may need to be hospitalized.
This is the case of Tatiana, 26. She lives in Arealva and takes her medication in Bauru, also in the interior of São Paulo. She found out she had ulcerative colitis two years ago and has since been hospitalized twice for lack of medication, in 2020 and 2021.
Tatiana is seven months pregnant and received the last injection of infliximab in March – she needs to take it monthly. She reports that she has a bout of hemorrhagic diarrhea due to lack of medicine.
“It is impossible to have the medication any other way than through the SUS. They are very expensive drugs”, he says.
In the last week, two patients who are without infliximab were hospitalized in Ribeirão Preto. The delivery delay was also reported by patients in at least two other cities in the state: Guarulhos and Sorocaba.
According to the Pharmaceutical Assistance Coordination of the São Paulo State Health Department, the acquisition and distribution of infliximab are the responsibility of the Ministry of Health. Also according to the agency, high-cost pharmacies in the state have already received the product, but “since last year, federally responsible drugs have been supplied with delays and partial deliveries”.
THE Sheet also contacted the Pharmacy of Specialized Medicines of Ribeirão Preto, but received no response.
The lack of medication is not restricted to São Paulo. According to physician Nestor Barbosa de Andrade, supervisor of the specialized outpatient clinic for inflammatory bowel diseases at the Hospital das Clínicas of the Federal University of Uberlândia, in Minas Gerais, patients in the state can take up to two months to start receiving medications.
According to him, the delay occurs due to the centralization of distribution in Belo Horizonte. In smaller cities, the delay can be even longer.
Student Joice Cruz, 24, who lives in Uberlândia and discovered she had Crohn’s disease ten years ago, reported having had to undergo extra surgeries due to complications arising from lack of medication.
According to the Minas Gerais State Health Department, the reasons for the unavailability of medicines in the public sector are variable. The folder says that currently only the stock of mesalazine 800 mg (an intestinal healer) is out of stock due to a supplier delay.
Asked about whether to expand the number of points of withdrawal of high-cost drugs in the state, the secretary did not respond.
The Ministry of Health said that the stock for the months of April and May has already been delivered to the state of São Paulo and that the distribution of the rest is scheduled for the beginning of June. The ministry did not report on the status of infliximab delivery in other states or on the recurring delays.
According to Parra, in addition to the delay in the delivery of medication, patients still suffer from a delay in updating the guidelines.
The SUS provides three immunobiological drugs for each of the diseases. According to the List of Procedures and Events in Health of the ANS (National Agency for Supplementary Health), patients treated through health plans have four medications available for ulcerative colitis and five for Crohn’s disease.
According to the ministry, the protocol for Crohn’s disease is being updated, and the status of the process can be monitored on the website of the National Commission for the Incorporation of Technologies in the Unified Health System (Conitec).
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