Last week, Verónica Juárez and Cecilia Vera, moms of children with diabetes, sought answers in the provincial legislature, given the situation their families and many other neighbors live due to the lack of a child specialist, the breach of social works and the delayIn inputs.
Within this framework, they dialogue with the president of the Health Commission, Claudia Andrade, and “she promised to work on a project with the request of Dr. Torres, Diabetology Master of the Rio Grande Regional Hospital and asking for integral compliance with the National Law to the National Law”Juarez said in dialogue with EDFM.
He also said they have been having conversations with the legislator Myriam Martinez who will present a project in this regard.In addition, on the issues raised "the legislator Juan Carlos Arcando told us that there is Provincial Law 489, which never repealed but is not fulfilled."
"We urgently need a professional who is ideal in childhood diabetology, that awareness campaigns are carried out because before there were not so many children with diabetes and it was a disease of big people, but now everything is different," said the mother of a teenager from a teenager13 years, which at 11 was detected diabetes.
It should be remembered that last year the Chamber of Deputies approved the modification to Law 23,753, where the disease is addressed more comprehensively and proposes social, labor and educational coverage, in addition to a medical and pharmacological.This new regulation establishes that the coverage of medicines and diagnostic reagents for self -control is 100% and in the necessary amounts according to medical prescription, that the Ministry of Health determines supplies provision standards and that these are updated every 2 years to incorporateAdvances in the field.
It also provides that the State must bring statistical control and provide scientific and technical collaboration to the health authorities throughout the country, in order to coordinate the planning of actions.
While the regulations in Tierra del Fuego was sanctioned in 1991, declaring the fight against diabetes of provincial interest, establishing the incorporation of this pathology into primary health care plans, and indicating the implementation of education and prevention plansof diabetes and detection campaigns.
"The diabetic will not be subject to labor discrimination or any other type, due to the sole condition of their illness," says article 2.While the 4th notes that “the Undersecretariat of Public Health will develop together with the properly recognized profit non -profit associations, plans for the diabetic that will include: education, diabetic search, creation of the Provincial Registry of Affected, 100% coverage inMedical care, insulins in its different types, oral hypoglycemic, syringes, reagent strips for self -control, as well as the elaboration of annual checkbooks for the diabetic patient ”.
The situation in Tierra del Fuego
In spite of national and provincial regulations, what patients and relatives live far from what is established by law.
"There are patients that social works charge them the same in the supplies," said the neighbor, indicating that "in my case the IPauss covers us all, but social works such as OSECAC or OSDE are not covering 100%."
The lack of inputs is another problem that usually appears for example when “because of an error that competed in the IPauss, it happened to us that the doctor's request was lost, the file and my daughter spent two and a half weeks without supplies for the bomb,Which was chaotic, she was hospitalized and then we had to take it to Rio Grande, ”recalled the mother indicating what happened a few months ago.
“As they had no supplies for the bomb he had to return to another insulin that did not previouslyHe had worked, and this time he served him, ”he added.He also said that "a few days ago they brought the inputs that were missing, because the director of the IPauss, Néstor Ledesma was in charge of calling Buenos Aires, because it took a month for a month."
“Again it happened to me that the social work was closed two days by balance and my daughter was left without insulin, I went to the pharmacy with the recipe and told me that they could not give me the inputs because I should be authorized, being that with the new lawJust having a constancy that you are diabetic, you access the inputs anywhere, without the need to go through all this, ”he lamented.
As for the reagents to make the daily measurements, he said that the social work of the State “authorizes three boxes equivalent to 150 strips, these patients in normal state use 120, but when they are wrong that they have to control themselves followed they use many more strips, and sometimes social works do not cover them or give you less, so there are moms that cut them in half, ”he said.
On the other hand, the claim of children of children with this pathology is the lack of a specialist at the HRU, in this regard Juárez said that in the HRRG “Dr. Torres and his wife have a master's degree in Diabetology, they presented before the MinistryHealth 3 years ago a project to go to Tolhuin and Ushuaia, wanted to build interdisciplinary groups in the cities since they cannot come every day, so they would travel periodically to carry controls but they would leave people prepared in these situations. ”
Given the lack of response to this initiative, the neighbor said that "we will try to refloat the project."He also said that "director Ledesma, promised that the IPauss was going to collaborate with expenses, that is, the province does not mean disruption, on the contrary he would have a trainer of other professionals."
Asked about how their daughter's treatment currently controls, Juarez commented that they travel periodically to Rio Grande, considering that "those 200 km with a girl who in minutes can grab a ketoacidosis or a diabetic coma, is terrible."
In this way, he commented that for adults if there are specialists, while for children and adolescents not "although there is a specialist who attends particular, and is also not handled with bombs."He also said that derivations are not authorized to this pathology.
"When they detect diabetes in our children, parents shoot where we can, there are people who cannot pay the particular consultation," he said.
Regarding the integral coverage that determines national legislation, Juarez recalled that “we had the opportunity to speak with legislator Laura Rojo, who suffers from diabetes, and we talked about this disease that not only affects the pancreas but also the view is also harmed, so they have to resort to ophthalmologist, as well as the podiatrist since the care of the feet is fundamental due to the possible infections, and they also visit the psychologist, the nephrologist, and the social work that does not cover it to you, ”he explained.
"It is a disease in which you must be comprehensive care, and our children in Ushuaia are dying in installments," because he lamented.
Lack of awareness and prevention
“We ask that prevention be made regarding diabetes, because there are symptoms that are clear and if parents become aware and warn that a child drinks a lot of water, very often urine, has a lot of appetite or slimming, are symptoms that thepossible existence of the disease, ”the mother observed.
He jointly indicated that "one of the ways is that just as there is a vaccination schedule, a measurement is made, which is a small puncture on the finger, which is not very invasive, or can be done with a blood test."
The claims of these parents areThey frame in the provisions of national and provincial regulations, in relation to the development of coordinated campaigns with public health levels and educational institutions.
Juarez also pointed to the training of teachers to provide tools in order to be attentive to changes in students suffering from this disease.He also warned the absence in "glucagon" school kit, injectable that should be supplied immediately when a patient has hypoglycemia episodes.
Other claims is the lack of statistics on the number of patients with diabetes in Tierra del Fuego, so this group of parents will begin a survey to contact relatives of children with this pathology and adults, in order to exchange experiences andHelp for example in the absence of inputs.For any consultation, communicate to the phone 2901–15619472 (Verónica Juárez).
