There are no official statistics on the number of people with Parkinson’s in Venezuela, as it happens with the rest of the diseases. But the independent Fundación Parkinson Caracas counts “around 40,000 patients” in the country, who have an uphill battle getting treatment
Text: nicole colster
“Sometimes I want and ask to die.” For 16 years Iván Ortiz, 63, has not stopped shaking. He suffers from Parkinson’s, a degenerative disease that, although he has no cure, is controlled with medication, but which is difficult for him to access due to the scarcity and high prices.
He lives in Venezuela, where the public health system is collapsed.
“There are no pills, there are no treatments and that completely despairs me,” this man explained to the Voice of America, who already in 2018 denounced the shortage of drugs in demonstrations.
The general shortage of medicines at the end of February 2023 reached 28.9%, according to the NGO Convite. In 2018, it was worse. The Pharmaceutical Federation came to report that year 80% of failures.
There are no official figures for Parkinson’s cases in Venezuela, although the independent Fundación Párkinson Caracas counts “around 40,000 patients.”
At the age of 47, Iván Ortiz “my fingers started shaking and he ran away, up to here,” he says while touching his left arm.
A 2020 study from the University of Valencia, Spain, noted that Venezuela showed “an increase between 10 and 15% in the prevalence of the disease” and an increase in mortality of between 5% and 10%, based on the numbers from Global Health Data.
There is also no exact data on shortages of medicines to treat Parkinson’s, but Iván, for example, explains that he does not have the full treatment and has to take the pills.
Akineton, one of the drugs he needs, “is not available anywhere.” “I have to take two, but I’m taking one to give up (…) I have a little bit right now.”
*Read also: The Parkinson Foundation denounces that for two months the Ministry of Health has not delivered medicines
“A true warrior” the Parkinson’s patient
Of the range of drug options available in the world, only two arrive in Venezuela, according to the independent Parkinson Caracas Foundation, active since 2017.
The government links the crisis in the health system with international sanctions against the country, although this began long before the measures were imposed.
Venezuela delivers subsidized medicines to patients with Parkinson’s and other diseases through Farmapatria, a network of popular pharmacies. But deliveries are intermittent.
One day, recalls Iván Ortiz, his body trembled for eight hours. Sometimes the sudden movements last an hour or an hour and a half.
“Farmapatria sometimes has it, sometimes it doesn’t,” continues Iván, who regularly goes to these establishments.
Few private drugstores offer drugs to treat the disease. And due to the high costs, most patients cannot access it either.
One option is to bring the treatment from “outside” the country, explains Alexander Hernández, founder of Parkinson Caracas, to VOA.
“A Parkinson’s patient here in Venezuela is in great need because either he has to eat or he has to buy medicine (…) He is a true warrior,” summarizes Hernández, who has had the condition for 13 years.
*Read also: They denounce that medicines for Parkinson’s are in short supply in 90% of pharmacies in the country
“Not even my worst enemy”
Iván, for example, has treatment today thanks to donations from this foundation, but it is not always complete. Therefore, he has to give it up.
“When I can’t take them, suffering comes (…) it’s a terrible disease,” he describes while showing a video where he is lying on a bed with “a shaking attack.”
Alexander Hernández, founder of Parkinson Caracas, in an interview with the Voice of America.
One day, he remembers, his body trembled for eight hours. Sometimes the sudden movements last an hour, an hour and a half. “I start to shake so much that it starts to hurt and I can’t stand it,” he describes resignedly.
In addition to tremors, patients with this condition suffer from stiffness, slowness of movement, and changes in writing and speech.
The World Health Organization pointed out that by 2019 Parkinson’s disease had increased in the world by 81% compared to the year 2000, and deaths due to related complications practically doubled.
In Iván’s case, it all started when he was 47 years old, he says. “My fingers started trembling and it ran away, up to here,” he says as he passes his hand over his left arm until it reaches his shoulder.
“I don’t wish this disease on my worst enemy… I don’t wish it on my worst enemy.”
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