SUS provides the necessary medicines, but patients still have to pay for, among other expenses, therapies, healthcare workers, equipment, home adaptations
EINSTEIN AGENCY – People with Parkinson’s disease who are monitored in the public health network spend almost half of their monthly income (49%) on additional costs related to the disease, including therapies and caregivers, to keep the disease under control, also with the pharmacological treatments offered by the Unified Health System (Sistema Único de Saúde) (SUS).
This conclusion is the result of unprecedented research conducted by the postgraduate program at the Israeli Albert Einstein Faculty of Health Sciences. The authors analyzed data from 1,055 Brazilians with Parkinson’s receiving care in ten public tertiary hospitals across Brazil, covering all regions.
Parkinson’s is a neurodegenerative and progressive disease, characterized by the degeneration of neurons that produce dopamine, a substance linked to the control of our body’s movements. This process leads to the destruction of these nerve cells and manifests itself through various symptoms, the best known of which are muscle stiffness and involuntary trembling of the limbs.
“The disease causes motor symptoms, such as slowness, stiffness, resting tremor and imbalance. As well as non-motor symptoms, such as decreased sense of smell, depression, changes in sleep, weight, bowel movements. The basis of treatment is replace dopamine in the brain and use drugs to improve non-motor symptoms, such as antidepressants, anxiolytics, sleeping pills,” explained neurologist André Carvalho Felício, of the Hospital Israelita Albert Einstein, who supervised the research.
Although Parkinson’s is more commonly associated with older adults, this is estimated to be the case 10-20% of cases occur in young adults, around 50 years old. In the case of the research, the average age at which the disease began for participants was 54 years old.
“These are people who are fully active in society. At the beginning the disease mainly affected the elderly, but in recent decades life expectancy has increased and this has changed,” said Professor Tânia Bovolenta, biomedical doctor and researcher responsible for the project. study.
Felício points out that only one neurological disease has grown so much in the number of cases in recent decades – and that disease is Parkinson’s. “This has happened not only because the world’s population has aged, this is one of the factors. Older people have more Parkinson’s, more Alzheimer’s, more dementia. But the prevalence of Parkinson’s has increased because of young people with Parkinson’s, who end up have a greater number of people. “Significant relevance because these are people still in a productive range. Our study demonstrates this and serves as a reminder that the disease can, in fact, occur among younger people, including those under 40,” he said.
Detailed cost analysis
Bovolenta explained that the idea arose from the need to study the costs of Parkinson’s disease for SUS users, since there was no Brazilian database on the topic. Exclusion criteria were established in the search, such as the presence of health insurance or the use of a DBS (deep brain stimulation) implant.
According to research, due to the aging population, it is estimated that by 2040 at least 17 million people worldwide will have Parkinson’s disease, making it the second most common neurodegenerative disease on the planet. This highlights the importance of in-depth cost analysis to improve the healthcare system. In Brazil it is estimated that between 1% and 3% of the population is affected by Parkinson’s.
To calculate direct and indirect costs, the researchers developed a questionnaire consisting of 26 questions. This questionnaire covered socioeconomic and demographic issues, as well as those related to the disease itself, such as expenses for medicines, possible home renovations and adaptations, costs with healthcare professionals, the acquisition of mobility aid equipment (such as walking sticks and wheelchairs), expenses with therapies (including physiotherapy, psychological support, occupational therapy, among others), expenses related to accessories such as probes and diapers, as well as travel and food costs on medical examination days.
The authors also took into account indirect costs associated with lost caregiver productivity and early retirement. The data was collected in the period between 2019 and 2022.
According to the study, the average annual cost of a person suffering from Parkinson’s in Brazil, including SUS coverage, is R$ 20,822.05, of which 63.3% refers to direct costs and 36.9% to costs indirect. Of this amount, on average, the person pays R $ 10,237.32 out of pocket per year, which equates to a monthly expense of R $ 853.11. The average individual income of patients is R$ 1,713 per month (considering the base year 2018). This means that the person commits approximately 49% of their income to these additional costs related to the illness.
According to research, the main additional cost associated with Parkinson’s disease was related to medicines: 82% of respondents had to purchase at least one drug to control their disease over a 12-month period and 13.2% had to purchase all the drugs needed to control their condition. These medications include antiparkinsonian, anxiolytic, antipsychotic, and dementia medications.
“In theory, all the drugs needed to control Parkinson’s are offered on the public network. But there are still many flaws in the system and people with Parkinson’s cannot always access the drugs. Either because the drugs are in short supply, because they live far away, or they don’t there are medicines distributed in your city. There are also cases where there is no one who can get these medicines and the person ends up buying them to control the disease. There are several factors that influence access,” he explained researcher.
Bovolenta also pointed out that although there are some people who use only one medication, there are others who take up to 20 pills a day, including anti-anxiety medications, sleep medications and dementia medications. “Not all of these medicines are distributed in the public network. Some cost up to R $ 200 per box,” she said.
Support from caregivers
The results of the study indicate that 78% of the patients interviewed had caretaker, this being the second main expense highlighted by the research. Among these, 73% reported that the caregiver was a family member, while 13% reported that they paid for the service. In general, as Bovolenta explained, these caregivers are family members who stop working, which also has a significant impact on the family’s monthly income and costs associated with the illness.
“It is a burden to be the caregiver of a person suffering from a neurodegenerative disease, particularly Parkinson’s. The majority of patients interviewed were still at levels 2 and 3 of the disease, according to the Hoehn and Yahr scale, maintaining a certain independence. When they are at levels 4 or 5, they are already completely dependent, often confined to bed, unable to carry out activities on their own, such as changing, washing, eating, they need a person to look after them and, generally, it will be a relative, further increasing your stress level,” the researcher said.
Bovolenta mentions in his thesis a bill that aims to ensure that the assistance service becomes public policy and is paid for by the healthcare system. “Almost 20% of caregivers of people with Parkinson’s stopped working to care for their family member with the disease. The average time they stopped working was six years and the amount they did not receive was in the order of R$ 1,600 per month. This has a very large impact on the budget”, he said.
The researcher’s wish is that the results of this study reach the Ministry of Health to help the federal government develop health policies to prevent and control the disease.
“I would really like people with Parkinson’s to have a different perspective on improving control of their disease. Not just Parkinson’s, but every patient with SUS needs this. My dream is that this study can serve as a basis for public policy and be replicated for cost calculations of other diseases,” he said.
For Felício, the study results can now serve as a large database specific to the Brazilian population. “The management of financial resources, especially for disabling neurological diseases, is still done incorrectly. The resources exist, but better rationalization of management is needed so that public health policies can better serve this Parkinson’s patient population,” he concluded.
Source: Terra
Ben Stock is a lifestyle journalist and author at Gossipify. He writes about topics such as health, wellness, travel, food and home decor. He provides practical advice and inspiration to improve well-being, keeps readers up to date with latest lifestyle news and trends, known for his engaging writing style, in-depth analysis and unique perspectives.
