Brazilians suffer from drug distribution by SUS

Brazilians suffer from drug distribution by SUS

At 3 months of age, Artur Knupp Xavier was diagnosed with spinal muscular atrophy (SMA), a rare, degenerative genetic disease that interferes with the ability to breathe, swallow and move. Today, at 2 years of age, the boy needs to go to physical therapy sessions and a speech therapist daily to keep his body active.

In addition to the difficult diagnosis, the family had to deal with another harsh reality: the drug used to treat children up to 2 years old with SMA is known as one of the most expensive in the world. produced by Swiss pharmaceutical company Novartis, Zolgensma costs more than US$ 2 million (about R$ 11.5 million) per patient.

In addition to price, there are other obstacles. Despite having received registration from the National Health Surveillance Agency (anvisa) in 2020, allowing it to be marketed in Brazil, Zolgensma is not yet available in the Unified Health System (SUS). The drug is vital, as it produces a copy of the protein responsible for neurons linked to motor activity.

Arthur was diagnosed with SMA at 3 months of age | Photo: Reproduction / Social networks

The solution found by the family was to raise money through raffles, sweepstakes and donations, due to the Court having denied four times the request for the Ministry of Health to buy the medicine. Now, Artur’s parents await the final judgment in the Federal Supreme Court (STF).

“We are facing a tireless struggle of two years and, as it is a progressive disease, the longer it takes for Artur to take the medication, the less gains he has”, says André Knupp, the boy’s father. “We need to make a crowdfunding, because unfortunately our justice is flawed.”

Health is the theme chosen by West for, this Friday, 02, in the last report of the series “Desafios do Brasil”, which has been published since August, always according to the following order of themes in the week: Monday (Education), Tuesday (Economy), Wednesday (Agro and Environment), Thursday (Public Safety) and Friday (Health). Read all the stories in the series here.

Race against time

Like Artur, there are other Brazilians who had to seek, through lawsuits, access to highly complex health services and products. “The process of fighting in Justice is a tiring process”, laments André Knupp. “NoClaiming your own child’s right to life is something that has no explanation. You can’t measure the sadness.”

According to a study by the Institute for Socioeconomic Studies (inesc), spending on medicines granted by the judicialization of health totaled BRL 1.3 billion in 2019. Despite being a strategy that guarantees access to the drug, the decision has implications for the Brazilian economy.

One of these implications corresponds to the high budgetary impact caused by the high price of medicines. As they are outside the normal purchasing and distribution schedule of public services, these highly complex medicines generate pressure on the Union Budget.

“The impact of the judicialization of the Union is that there is no way to financially and annually predict how many Brazilians will make this type of request”, explains Lindiane Costa, lawyer of the Access to Health team, from the Smith Martins Office, specialist in solving health problems of Brazilians , such as the lack of medicines in the SUS and the difficulty in obtaining medicines, surgeries, prostheses and other instruments through the public network.

According to the lawyer, the problem is not in the insufficiency of public coffers. For Lindiane, the solution would be to create more effective public policies. “If the Union knows that there will be a percentage of health claims with a high cost in its Budget, the federated entities, as they have joint responsibility for the feasibility and distribution of health services, should create public policies that make the provision of treatment or medication faster to the patient”, he says.

Distribution problems

Of all the money directed by the Union, in 2021, to the areas of action of the federal government, only 11% (equivalent to R$ 161 billion) was directed to the health area. Of these 11%, only 7.6% (equivalent to R$ 12 billion) were allocated to prophylactic and therapeutic support, which include actions aimed at the production, distribution and supply of drugs and pharmaceutical products in general.

The amount was even lower in 2022, when, of all the money directed by the Union, only 9% (equivalent to R$ 91 billion) went to health. Of these 9%, more than 8% (equivalent to R$ 7 billion) were directed to prophylactic and therapeutic support.

The system for purchasing medication purchases by the Unified Health System (SUS) is organized into four components:

  • Basic: provides medicines that treat the main health problems and conditions of the Brazilian population;
  • Strategic: offers medicines and supplies to treat diseases with the potential to have an endemic impact, such as schistosomiasis, Chagas’ disease and dengue;
  • Skilled: delivery of drugs to combat chronic-degenerative and rare diseases;
  • Popular Pharmacy Program: provides free medicines for the treatment of diabetes, asthma and hypertension, dyslipidemia, rhinitis, Parkinson’s disease, osteoporosis, glaucoma, contraception and geriatric diapers to almost 10 million people every year.

The medicines made available by the SUS are in the National List of Essential Medicines (Rename), an orientation list prepared by each municipality, which establish their own list of medicines, according to the epidemiological characteristics of the region.

“Brazil has a health system with functional ramifications in its structure. If this system had a greater transfer, in addition to the survival of many Brazilians, it would avoid the judicialization regarding requests not met administratively by citizens in the face of SUS”, says lawyer Lindiane Costa.

Despite the initiatives, Brazil has the second lowest public expenditure on health as a percentage of GDP, according to a list of 13 other member countries of the Organization for Economic Cooperation and Development (OECD), a group that is seeking membership. Only 3.8% of the national GDP in 2019 corresponded to the sector – the latest data made available by the Ministry of Economy. On the list, the highest relative government expenditure on health belonged to Germany, with 10% of GDP.

In contrast, Brazil has the highest private health expenditure on the OECD list. In nominal terms, Brazilian families, NGOs and churches disbursed BRL 427 billion to pay for medicines, devices, health plans and other services, according to the 2010-2019 Health Satellite Account survey by the Brazilian Institute of Geography and Statistics. (IBGE), based on the foundations of the institute itself, the Ministry of Health, the National Agency for Supplementary Health (ANS), the Oswaldo Cruz Foundation (Fiocruz) and the Institute for Applied Economic Research (Ipea). The value corresponded to almost 6% of GDP in 2019.

What is missing?

Like other Brazilian families, Artur Knupp Xavier’s parents needed to find alternatives to guarantee access to Zolgensma, the most expensive drug in the world. One solution was to move to Italy in May of this year, where the boy could take the medicine after proving his Italian citizenship.

“We left after another denial of the Justice to Arthur’s right to life”, says André. “We came here without speaking the language, with a face and courage. Unfortunately I am not able to buy the medication, but as long as I have the strength I will do everything possible.”

The family awaits the decision of the STF to purchase the drug
The family awaits the decision of the STF for the acquisition of the drug Zolgensma | Photo: Reproduction / Social networks

Today, the family is waiting for an opportunity abroad, while waiting for the judgment by the STF in Brazil. In addition, the money-raising campaigns continue. To help save Arthur’s life, click here.

According to lawyer Lindiane, the investment in the Brazilian pharmaceutical industry would help in the even greater distribution of medicines in the public network. Almost 95% of medicines in the country depend on raw material originating mainly from China, which had its exports affected due to the imposition of lockdown to contain the new wave of Covid-19 cases.

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