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Congress could discuss this year a bill that seeks to protect rights, guarantee access to the public health system and avoid discrimination against those who suffer from this genetic disorder. From the social networks, relatives and albinos initiated a campaign to support the initiative and to make known the problems that face daily.
Pale, white hair, white eyelashes, white eyebrows, extremely clear eyes. Albinism is a genetic disorder: mutations in different genes alter melanin production, which results in little or no color in the skin, hair, and eyes. It is a hereditary genetic mutation. That is, it is necessary that both the father and the mother have the gene that contains the mutation for the child to inherit.
This hypopigmentation manifests itself in the body in different ways: they suffer from decreased visual acuity, strabismus, photophobia, myopia, farsightedness, astigmatism and even involuntary and uncontrollable eye movement. The skin is also another major handicap: unprotected sun exposure creates an extremely high risk of developing skin cancer.
Cordoba Deputy Brenda Austin, who is part of the Cambiemos block, worked for months with albino organizations throughout the country and, in October, presented a draft "National Albinism Law".
"In the presentation of the project there were more than fifteen deputies from Cambiemos, who later became co-signers. We are quite confident that we can take it out," said Austin in a dialogue with Télam.
The text addresses the problem from an integral perspective that seeks to address health and public education and also underpin scientific research. According to its proponents, there is still no legislation of this scope in any other country in the world.
The preliminary draft aims at the creation of the "National Program of Treatment and Comprehensive Assistance for Albinism". From there, it would work in several directions: guarantee free and free access to treatments and lenses throughout the public health system and make a parallel articulation with the private sector.
The State would also be responsible for the promotion of campaigns against discrimination and stigmatization and the development of a national registry of people with albinism to account for how many people suffer from it, a fact that is not known today. On the other hand, the Program would promote scientific research on this condition, almost nonexistent in the country.
While the bill will still have to comply with a long legislative process, Austin found a good predisposition in the blocks to arrive at the venue as soon as possible.
"In the hands of the Deputies and Senators is the dream of many people, the National Law of Albinism," Patricia Avendaño, mother of 3-year-old albino twins, Valentina and Mailén, told Télam.
"We want to achieve a real, more human inclusion. And that is achieved by informing and knowing. We want our doctors to be guides, that we can give our children the necessary tools, such as glasses, creams and magnifiers, "he said of their expectations.
" Our boys need equality, the right to be able to see, not to be afraid of skin cancer. And we, as parents, need to hope for a better future for them, "Patricia emphasized and stressed that the law would be an opportunity for the dermatological, ophthalmological and genetic to be available to all albinos.
Oscar Chavero is 59 years old, is albino and lives in Rawson. After participating in several meetings in different parts of the country, he knew the reality of those who have fewer resources to tackle the problem. "We albinos need the state to provide everything necessary to have a dignified life with equal opportunities and without discrimination," he summarized, in dialogue with Telam.
"From these meetings, I met many people who do not have a good time: they do not have work or some have precarious jobs. Even some albinos do it outdoors, as a peddler on the coast, without the slightest protection on the skin , Or medical care of any kind.There are also many children, young people and adults who study and need modern elements to start classes, "he explained.
While the legislative process continues, in social networks, the initiative is promoted under the hashtag #LeyNationalde Albinismo . And Facebook, on the other hand, officiates as a "meeting room" of the country's albinos who come together to discuss their needs and problems in the " Albinos in Argentina " group.
This hypopigmentation manifests itself in the body in different ways: they suffer from decreased visual acuity, strabismus, photophobia, myopia, farsightedness, astigmatism and even involuntary and uncontrollable eye movement. The skin is also another major handicap: unprotected sun exposure creates an extremely high risk of developing skin cancer.
Cordoba Deputy Brenda Austin, who is part of the Cambiemos block, worked for months with albino organizations throughout the country and, in October, presented a draft "National Albinism Law".
"In the presentation of the project there were more than fifteen deputies from Cambiemos, who later became co-signers. We are quite confident that we can take it out," said Austin in a dialogue with Télam.
The text addresses the problem from an integral perspective that seeks to address health and public education and also underpin scientific research. According to its proponents, there is still no legislation of this scope in any other country in the world.
The preliminary draft aims at the creation of the "National Program of Treatment and Comprehensive Assistance for Albinism". From there, it would work in several directions: guarantee free and free access to treatments and lenses throughout the public health system and make a parallel articulation with the private sector.
The State would also be responsible for the promotion of campaigns against discrimination and stigmatization and the development of a national registry of people with albinism to account for how many people suffer from it, a fact that is not known today. On the other hand, the Program would promote scientific research on this condition, almost nonexistent in the country.
While the bill will still have to comply with a long legislative process, Austin found a good predisposition in the blocks to arrive at the venue as soon as possible.
Por ellos seguimos trabajando para que Argentina tenga su #LeyNacionaldeAlbinismo
"In the hands of the Deputies and Senators is the dream of many people, the National Law of Albinism," Patricia Avendaño, mother of 3-year-old albino twins, Valentina and Mailén, told Télam.
"We want to achieve a real, more human inclusion. And that is achieved by informing and knowing. We want our doctors to be guides, that we can give our children the necessary tools, such as glasses, creams and magnifiers, "he said of their expectations.
" Our boys need equality, the right to be able to see, not to be afraid of skin cancer. And we, as parents, need to hope for a better future for them, "Patricia emphasized and stressed that the law would be an opportunity for the dermatological, ophthalmological and genetic to be available to all albinos.
Oscar Chavero is 59 years old, is albino and lives in Rawson. After participating in several meetings in different parts of the country, he knew the reality of those who have fewer resources to tackle the problem. "We albinos need the state to provide everything necessary to have a dignified life with equal opportunities and without discrimination," he summarized, in dialogue with Telam.
"From these meetings, I met many people who do not have a good time: they do not have work or some have precarious jobs. Even some albinos do it outdoors, as a peddler on the coast, without the slightest protection on the skin , Or medical care of any kind.There are also many children, young people and adults who study and need modern elements to start classes, "he explained.
While the legislative process continues, in social networks, the initiative is promoted under the hashtag #LeyNationalde Albinismo . And Facebook, on the other hand, officiates as a "meeting room" of the country's albinos who come together to discuss their needs and problems in the " Albinos in Argentina " group.
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