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Reporting was supported by funding from the National Press Foundation.
Panama City, Panama – Maria did not know how many times she had seen a doctor in the last three years. But despite her innumerable tests, she has no clear answers to her questions.
“I have been sick for a long time. I want to know why, “said Maria, who asked for her last name to be withheld to prevent problems at work in Panama City.
Now in her early 20’s, Maria says she has been chronically tired, with muscle aches and pains for several years – and that it is getting worse.
“I love watching birds,” he told Al Jazeera on a bench in the center of the city as songbirds flew in the shade of a nearby tree. “He helps me clear my mind on everything.”
Push for answers
If Mary lives with him rare disease, may be waiting too long because the right diagnosis can take several years in Europe and in Panama. Even so, if Maria were diagnosed with one of the 5 percent of rare diseases with a standard of care, she would not be able to get treatment if Panama did not buy it at the hospital.
But the group has been urging Central America to change this.
Patients- and parents under the guidance of affiliates in Panamanian agree to take the lead in pushing for action to ensure early detection of disease, medical care and access to care for people with a chronic illness, and set up an umbrella group – the Panama Rare Disease Network Federation. , ReDER – in November to make their voices heard.
“We are strong when we are united,” said Alaisa Arauz, director of the Panamanian Hemophilia Foundation, one of the 10 members of ReDER, which also includes people with the most rare diseases in the country.
Negative illnesses are rare in personal consideration. All over the world, he says 300 million people to have one or more of over 7,000 known rare diseases. The most rare disease is genetics initially, many are at risk for life, and 95 percent they have no legal remedy.
Haemophilia is a legitimate treatment in Panama, but it took 14 years of continuous effort, led by patients in this country in the 1990s and early 2000s to force the government to provide enough Factor VIII to meet the needs of patients. . Factor VIII is a lack of clotting factor in hemophilia A patients with blood.
“It was doing very well,” Arauz told Al Jazeera. It was a struggle years. With any government that took responsibility, we were there.
Arauz has two sons who have been diagnosed with haemophilia, and they live with Von Willebrand, a blood-borne disease. But it took many years to find him.
“It was [bleeding episodes] for the rest of my life, ”said Arauz, who also serves as a representative of critically ill patients on a state-run committee responsible for ensuring that patients receive treatment. “Imagine if I had been screened so quickly. I could not have suffered that much longer. ”
Lawless diseases
Recognized as the Intersectoral Committee of Prevention, Diagnosis, Comprehensive Attention and Research for the Treatment of Rare, Uncommon and Orphan Diseases, the committee was born out of the 2014 Panamanian law which specifically deals with rare diseases – the only law in Central America. .
In Panama, as in the European Union, rare diseases are said to affect at least one in 2,000 people.
The Act seeks to ensure that people with a rare, foreign and orphan’s condition are protected, identified and treated. But even though the code has been in the books for over seven years, it has not yet been fully implemented.
“This is a very good law, it is a complete law, but as we have said, it is a ‘decorative’ law,” Arauz said.
The Act, for example, advises the Ministry of Health to establish a national program for the purchase of medicines for dementia, “in order to quickly and efficiently access all patients”. But that important role has not yet been fulfilled.
One of the roles of the committee is to establish partnerships with government agencies and government agencies to provide funding for charities. But the committee was not formed until 2019 and has progressed slightly since then. Together with Arauz, he includes six delegates from various government agencies, as well as a representative of the pharmaceutical industry.
The downside, according to Arauz and other vulnerable leaders, is that the Ministry of Health, which oversees the committee, has changed its delegation several times and the delegates also have other health ministry duties and are not just committed to rare diseases. .
The Ministry of Health was not available for comment prior to the publication, and the department has made brief comments on the issue of rare diseases in the last two years.
Mu a words Since October 2020, the ministry has reviewed the progress made, including the identification of rare diseases in Panama and the committee responsible for developing diagnostic and therapeutic programs.
‘Complete Life’
But patient advocates say that as soon as the law is passed, people go unnoticed.
“The law is not enforced and patients are not receiving treatment,” said Enma Pinzon, president of the Rheumatoid Arthritis Foundation of Panama and leader of a long-term medical team working with the National Federation of Associations of Patients with Critical, Chronic and Degenerative Diseases. .
Pinzon told Al Jazeera that when the epidemic strikes in Panama, it is through humanitarian and humanitarian organizations to improve the lives of people living with incurable diseases.
This is important, but its purpose ends up covering the fact that there is a shortage of drugs that are approved by patients who need them, he said.
ReDER’s goal will be to announce a push for the government to implement laws and regulations, added Pizon, emphasizing that the goal is to ensure that everyone who needs medical treatment can access it.
He said: “I have a serious illness. “Thirty years ago, I had the opportunity to receive treatment. I was able to get the diagnosis quickly and here are the results. I have lived a full life and that is what I look for in anyone with a disease in Panama. ”
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