Parkinson’s: cost consumes half of patients’ monthly income – 10/16/2023 – Health

People with Parkinson’s disease who are monitored in the public health network spend almost half of their monthly income (49%) on extra costs related to the disease — including therapies and caregivers —, even with drug treatment being offered by the Unified Health System (SUS). ).

This conclusion is the result of unprecedented research carried out by the Postgraduate Program at the Albert Einstein Israelite Faculty of Health Sciences. The authors analyzed data from 1,055 Brazilians with Parkinson’s who receive treatment in ten public tertiary hospitals across Brazil, covering all regions.

Parkinson’s disease is neurodegenerative and progressive, characterized by the degeneration of neurons that produce dopamine, a substance related to the control of our body’s movements. This process results in the destruction of these nerve cells and manifests itself through several symptoms, the best known of which are muscle rigidity and involuntary tremor of the limbs.

“The disease causes motor symptoms, such as slowness, rigidity, resting tremor and imbalance. In addition to non-motor symptoms, such as decreased sense of smell, depression, changes in sleep, weight, in the intestine. The basis of treatment is to replace dopamine in the brain and use medications to improve non-motor symptoms, such as antidepressants, anxiolytics, sleeping pills”, explained neurologist André Carvalho Felício, from Hospital Israelita Albert Einstein, who supervised the research.

Although Parkinson’s is more commonly associated with the elderly, it is estimated that 10% to 20% of cases occur in young adults, around 50 years of age. In the case of the research, the average age at which the disease began for the participants was 54 years old.

“These are people who are fully active in society. In the beginning, the disease was more related to the elderly, but life expectancy has increased in recent decades and this has changed,” said professor Tânia Bovolenta, biomedical doctor and researcher responsible for the study.

Felício points out that only one neurological disease has grown so much in the number of cases in recent decades – it is Parkinson’s.

“This happened not only because the world’s population got older, that’s 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, which ends up having a more significant relevance because they are people still in a productive range. Our study demonstrates this and serves as a warning to remember that the disease can indeed occur in younger people, including people under 40 years of age”, he said.

Detailed cost analysis

Bovolenta explained that the idea arose due to the need to study the costs of Parkinson’s disease for SUS users, since there was no Brazilian database available on the subject. In the research, exclusion criteria were established, such as the presence of health insurance or the use of a DBS implant (deep brain stimulation).

According to research, due to the aging population, it is estimated that by 2040 at least 17 million people worldwide will have Parkinson’s, making it the second most prevalent neurodegenerative disease on the planet. This highlights the importance of in-depth cost analysis for improving the healthcare system. In Brazil, it is estimated that between 1% and 3% of the population has 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 with medicines, possible renovations and adaptations to the home, costs with caregivers, acquisition of mobility aid equipment (such as canes and wheelchairs), expenses with therapies (including physiotherapy, psychological support, occupational therapy, among others), expenses related to accessories such as probes and diapers, in addition to travel and food costs on medical appointment days.

The authors also took into account the indirect costs associated with caregivers’ lost 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 with Parkinson’s in Brazil, including what is covered by the SUS, is R$20,822.05, with 63.3% referring to direct costs and 36.9% to indirect costs. . Of this amount, on average, the person pays R$10,237.32 per year out of pocket, which is equivalent 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 around 49% of their income to these extra costs related to the disease.

According to the survey, the main additional cost associated with Parkinson’s disease was related to medications: 82% of respondents had to purchase at least one medication to control the disease over 12 months, and 13.2% needed to purchase all medications needed to keep your condition under control. These medications include antiparkinsonians, anxiolytics, antipsychotics, and dementia medications.

“Theoretically, all the medications 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 are not always able to access medications. Either because the medication is in short supply, because they live far away, or There are no medicines dispensed in your city. There are also cases where there is no one who can get this medication and the person ends up buying it to keep their disease under control. There are several factors that influence access”, explained the researcher.

Bovolenta also highlighted that, although there are some people who only use 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 dispensed in the public network. Some cost up to R$200 per box,” she said.

Caregivers

The results of the study indicate that 78% of the patients interviewed had caregivers, 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 the costs associated with the disease.

“It is a burden to be the caregiver of a person with a neurodegenerative disease, especially 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 some independence. When they are at levels 4 or 5, they are already completely dependent, often bedridden, unable to do activities alone, such as changing, bathing, eating. They need a caregiver and, generally, it will be a relative, further increasing the level of stress”, said the researcher.

Bovolenta cites in his thesis a bill that aims to ensure that the caregiving service becomes public policy and is paid for by the health 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 not received was in the order of R$1,600 per month. This has a very big impact on the budget”, he said.

The researcher’s desire is for the results of this study to reach the Ministry of Health to help the federal government in developing health policies to prevent and control the disease.

“I would really like people with Parkinson’s to have a different perspective on improving the control of their disease. Not only Parkinson’s, but any SUS patient needs this. My dream is that this study could serve as a basis for public policies and be replicated for calculation of the costs of other diseases”, he said.

For Felício, the results of the study can now serve as a broad database specific to the Brazilian population.

“The management of financial resources, especially for disabling neurological diseases, is still done incorrectly. The resources exist, but there needs to be better rationalization of management so that public health policies can better serve this population with Parkinson’s”, he concluded .