• On Thursday, March 4th, the virtual conference “Rare, but not invisible diseases. What should you know about them?”, organized by Women Ceo Peru and ALAFARPE, was held.
It is estimated that there are more than 300 million patients with Rare and Orphan Diseases in the world (study by the European Journal of Human Genetics), and that in Peru there are more than 2 million patients who live with these conditions. A serious public health challenge in Peru, given people with these diseases are more vulnerable and are more at risk of contracting Covid-19.
For this reason, as part of the activities of the Women in Health Committee, created by Women CEO Peru and Alafarpe, the event “Rare, but not invisible disease. What should you know about them?”, was organized due to the recent commemoration of the National Day for Rare and Orphan Diseases. The event was led by Úrsula Giesecke, Country Lead Peru & Ecuador at Takeda, who spoke about these conditions with the purpose of raising awareness and helping all people who cope with them to receive a diagnosis and treatment in a timely manner.
“Eighty percent (80%) have a genetic component and most of them are chronic and degenerative, which worsen over time. Sixty five percent (65%) of these pathologies are serious and disabling, characterized because they begin at a very early age (2 out of 3 appear before the age of two); they are accompanied by chronic pain; they can develop motor, sensory or intellectual deficits, which could lead to disability (1 in 3 cases); and rare diseases can be attributed to 35% of the deaths before the age of one (1), 10% between the ages of 1 and 5, and 12% between the ages of 5 and 15”, indicated Giesecke.
On the other hand, she highlighted the publication of several resolutions in 2020 to improve the regulatory framework for these diseases. Among them, the Technical Document “National Plan for Prevention, Diagnosis, Comprehensive Health Care, Treatment, Rehabilitation and Monitoring of Rare or Orphan Diseases 2021-2024″ stands out.
“Patients with rare diseases are a highly vulnerable group that require early access to comprehensive treatment that improves their quality and life expectancy. According to a study issued by APOYO Consultoría, between February and June 2020, 78% of patients with this condition did not receive support or treatment, and 41% of patients stopped their treatment”, she added.
Likewise, she commented that patients can wait 5 to 7 years to have an accurate diagnosis, and 40% are incorrectly diagnosed at least once; thus, the late start of adequate treatment affects disease progression and patient deterioration.
She also added that, if clinical research were carried out in the country, it could receive up to 200 million Peruvian soles annually, but the research must be permanent in order to discover new treatments. “In the world, research and development investment is approximately 30% of net income from research laboratories and a lot of work is being done in the development of drugs for orphan diseases”.
Patients who suffer from this type of disease seek to have a longer life expectancy, and in that sense, it is essential to continue adopting policies that promote innovation and ensure patient access to medicines that provide them good quality of life or, in the best of cases, save them.
To view the recording of the event, enter the following link: https://fb.watch/46j8gvYXXu/
Written by Alafarpe.