SUS patient spends up to 49% of his income on Parkinson’s – 06/12/2023 – Health

An unprecedented survey revealed that people with Parkinson’s spend up to 49% of their monthly income on costs related to the disease, even when they receive treatment through the SUS (Unified Health System).

According to the study, the average annual expenditure per patient treated at the public health service is R$ 20,822.05, not including costs covered by the federal government, with hospitalization, provision of medication and therapies.

Considering the average monthly income of R$ 1,713.50 of the patients included in the survey, the average monthly expense related to the treatment of the disease is R$ 853.11 (49%). Per year, this is equivalent to R$ 10,237.33.

The data are part of Tânia Bovolenta’s doctoral thesis, linked to the post-graduate program at the Faculdade Israelita de Ciências da Saúde Albert Einstein. The survey surveyed 1,055 people with Parkinson’s (59% of the total initially included in the study) in ten hospitals across the country from July 2019 to August 2022.

The participating institutions were: Hospital das Clínicas de SP, Hospital das Clínicas de Ribeirão Preto (FMRP/USP), Hospital Universitário Grafee e Guinle (Unirio), Hospital das Clínicas de Belo Horizonte (UFMG), Hospital das Clínicas de Porto Alegre, Hospital of the Clinics of the Federal University of Goiás (UFG), Hospital Universitário Onofre Lopes de Natal (RN), Hospital Universitário Walter Cantídio in Fortaleza (CE), Hospital Ophir Loyola in Belém (PA) and Hospital Getúlio Vargas in Manaus (AM).

Participants answered a questionnaire containing sociodemographic information and questions related to the treatments and types of therapies they needed, in addition to expenses related to hiring caregivers, home renovations and other equipment needed to help with the disease, such as walkers.

To assess the average annual cost of the disease, the survey divided the values ​​into direct expenses, such as hospitalization, medical consultation, medication, auxiliary treatments, therapies, laboratory tests and transportation to and from the hospital, and indirect expenses, calculated from the loss of productivity and early retirement due to the disease, in addition to lost costs with the early retirement of the family member responsible for caring for the patient.

Personal expenses were also considered, such as consultations and private examinations not covered by the SUS, purchase of medication, private therapies and home renovations (adaptations, special beds, wheelchairs, among others).

In the survey, most people with Parkinson’s in the country are 61 years old or older (66.4%), with up to 12 years of schooling (78.5%) and are black or brown (52%). The region most represented in the survey was the Southeast (42.1%), which also concentrated more studied centers. Most of the patients interviewed (60.9%) were male.

The average income found is up to R$ 3,816 (80%), with a third (36%) having an income equal to or less than R$ 1,908, the equivalent of two minimum wages at the time of the interview (calendar year 2018).

According to the survey, the highest additional expense found was with medication, reaching almost two thirds (R$ 7,000) of the annual cost in the Northeast region, double the national average (R$ 3,485). Approximately 82% of respondents said they had purchased a medication they needed to keep the disease under control at least once in a 12-month period.

According to Bovolenta, SUS patients spend a very high amount on Parkinson’s disease, especially considering that most of them have a family income of up to four minimum wages. “The person with Parkinson’s needs to buy emergency medication, have consultations or private therapies or some adaptation that, many times, cannot be subsidized by the government, or the waiting time is long and he cannot wait.”

As the Southeast region presents a more homogeneous distribution of medicines via SUS, this may have been one of the reasons why the cost of medicines was higher in the Northeast region, says the researcher.

The second highest cost was with hiring caregivers, related to personal cost. On average, the annual expenditure was BRL 1,881.89, followed by expenses with food on therapy or consultation days (BRL 1,393.83) and house renovations (BRL 1,031.29).

With the growth in the world incidence of new cases of Parkinson’s, mainly due to the aging of the population, it is likely that new diagnoses will occur in the coming years, thus further burdening the health system. Worldwide, the WHO (World Health Organization) estimates that 8.5 million people live with Parkinson’s.

For Bovolenta, it is important that research like this help scale the costs with the disease both for the public health system and for society. “By calculating how much the Parkinson’s patient costs the government and the SUS, we hope to help foster public policies that improve care and supply, which already exists, but is often heterogeneous”, she says.

“There is a problem with not being a notifiable disease, so we don’t have data on people with Parkinson’s in the country. Spending on benefits and pensions is, on average, R$ 65,000 per patient per year”, he says.

The researcher points out, however, that the costs found in the research are probably underestimated, since the period comprised the Covid-19 pandemic, when many of the patients, considered at greater risk due to their age, stayed at home and did not respond to the survey. .

For Emerson Gisoldi, a neurologist at the Santa Casa de SP outpatient clinic, Brazil lacks data on health costs of diseases. “It’s a public health issue and it’s important to discuss the costs, not only for that patient, but also for caregivers and family members, who often have to take early retirement to assist with care,” he said.

Gisoldi reinforces that Parkinson’s disease has different stages, and progression is also dependent on early identification and care. “Today, the most recommended treatment comes from a multiprofessional view, it is not just the medicine, so the more services and therapies he has, such as physiotherapy, speech therapy, nutritionist, quality of life, practice of activities, the better he will evolve.”

For this reason, the inequality in the provision of these services leads to the demand for private care and, thus, increases costs. “From the moment that the patient with Parkinson’s becomes bedridden and has limited mobility, he starts to need constant care, to do his hygiene, move around, eat, and he may lose his income, thus depending on government benefits. Expenses with care, therefore, are high, and he cannot replace it”, he says.