Almost half of rare disease patients thought about giving up treatment during the pandemic

Facing difficulties to go to the doctor, barriers to exams and increasing obstacles to maintaining treatment, the reality for rare disease patients became even more challenging during the Covid-19 pandemic.

Preliminary data from the Rare in the Pandemic survey, carried out by “Somos Somos Raros” in partnership with H2H Perception, also reveal that 72% of patients believe that their life was or will be even more difficult in the post-pandemic

Most of these rare diseases patients believe that this will be practically the restart of a fight for better health conditions even with the end of the pandemic, still with no date to happen.

“Patients were affected in all ways: socially, mentally and financially”, explains neurologist Acary Oliveira, head of the Neuromuscular Diseases sector at the Federal University of São Paulo (Unifesp). “The decrease in resources for services that help the rare disease patient is happening in the last three years and have become even more evident during the pandemic”, he adds.

The picture of this reality is in the research carried out by the Somos Somos Raros platform in partnership with Instituto H2H Perception. According to preliminary data, patients were highly affected. Almost half, for example, thought about giving up or practically stopped their treatment in 2020.

“We were left without support. I was unable to continue my physiotherapy and this for those who have porphyria is a setback in years of treatment”, recalls chemist Bárbara Costa Albuquerque, 30 years old. 

Porphyria is a deregulation of a liver enzyme that affects 1 in every 100 thousand people. It can cause seizures, a lot of pain and even paraplegia. “I was in a wheelchair for six months. At the beginning of the pandemic, after many treatments, I was even running. I stopped and had a great worsening of the condition”, she explains.

In order to expand knowledge and publicize the next steps of this struggle, the Somos Somos Raros is starting the “Rare Movement: treatment cannot stop”. In the coming months, a series of actions will disclose the main causes of Rares with a focus on the pillars for patients: expansion of diagnosis, treatment and tests during the pandemic period.

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