talk about it rare diseases It speaks of the daily challenge of ensuring the right to life, access to early diagnosis and effective treatments tailored to an individual’s needs.
It’s like making one voice heard in the crowd to ensure the quality of life of people affected by something rarely found in evidence. And this is a big one challenge!
The disease is considered rare, according to World Health Organization (WHO)It affects up to 65 people per 100,000 people. For 95% of them, no specific treatment is yet available, only palliative care and rehabilitation services. In Brazil alone, it is estimated that there are 13 million people suffering from rare diseases.
However, an excerpt from parliamentary activity with analysis Invoices (PLs) over the past 20 years shows us that only 3% of the 6,400 PLs produced for health have direct references to rare diseases.
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This unprecedented research found that we live in a parliamentary vacuum. discussion about public policy Structural structures and the defense of the effectiveness of social participation in promoting public policies in SUS are critical points for this progress, as well as link for civil society.
A good example of sharing is United for Life – Brazilian Cystic Fibrosis Care Institute, which works for about 5,400 Brazilians infected with this rare and growing disease. The group has already achieved victories such as the inclusion of the disease in newborn screening in 2010, the establishment of the Clinical Protocol and Treatment Guidelines (PCDT) by the Ministry of Health and access to genotyping tests for all patients.
Another example of mobilization is Casa dos Raros, a center for comprehensive care and training in rare diseases built in Porto Alegre by fisherman’s housea reference association in proposing public policies on rare diseases in Brazil.
+ Read also: Research depicts challenges for Brazilians with cystic fibrosis
This initiative is unprecedented in Latin America and seeks to ensure rapid and accurate diagnosis and treatment and to promote research and care, both in the private sector and through health plans and through the SUS.
Patients with rare diseases still do not receive adequate medical care due to a lack of organized public policies, but civil society can already point to a way forward to overcome this. Understanding the gaps in initiatives like “Radar dos Raros” is also a good starting point.
It’s time to mobilize and demand effective action from public policy makers for Nader!
* Gustavo San Martin is a founding member of the Chronic Patients Day-to-Day Association and a consultant to Febrararas
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