Javier Firpo
08/05/2020 - 20:16
- Clarín.com
- Society
July 23 was all celebration and hubbub in the world of the 1,800 families suffering from cystic fibrosis in Argentina. That Thursday, with 64 votes in favor and 3 abstentions , the Comprehensive Protection Law for people with Cystic Fibrosis of the Pancreas or Mucoviscidosis was approved in the Senate of the Nation. The project already had half sanction in Deputies.
Less than two weeks later, the illusion and hope changed by disappointment, bitterness and anger. " They want to veto the article that grants the certificate of disability for life for patients using a lot of empty and contentless legal arguments," says Silvina Santa Cruz, a reference from the Tu Aire, Mi Esperanza Association, which was part of a meeting with Ginés González García, via zoom, which was held on Wednesday.
The meeting, which lasted two and a half hours, was attended by the Minister, the Secretary for Access to Health, Carla Vizzotti, and Sonia Tarragona, Secretary for the Area of Medicines and Strategic Organization. "Ginés was fifteen minutes and left, but in that brief period he said it all. To begin 'that the law as it is proposed will not come out' and questioned the most important articles of the law, which are 5, 6, 7 and 13 ".
Oscar Rizzo, a pulmonologist and head of the Cystic Fibrosis Department at Hospital Ferrer, had previously held another meeting with the main members of the Ministry of Health. "In that talk the subject of the Health Certificate came up and Ginés argued that the CUD (Single Certificate of Disability) should be reserved for viscerally disabled people and not for 100 percent of people with conditions . The concept of disability that the ministry handles it is of current disability and not of disabling disease . "
"When a fibrocystic boy is born he may have no symptoms or be incapacitated from a real point of view ... He looks normal, but in reality he must take a lot of medications to survive and reach a mature age," says Rizzo, one of the most important CF specialists in the country. "If a CF patient does not present their CUD, neither the prepayments nor the social works recognize those drugs that are inaccessible."
Rizzo states that the regulations for granting the CUD "require values according to the different parameters. With regard to respiratory diseases such as CF, the patient must have 50 percent of their lung capacity, otherwise they do not provide the certificate . A patient who reaches 50 percent of his respiratory capacity could be irreversible, because his disease is in a evolution that, without medication, would be irrepressible. "
The disability certificate "works like a life preserver for CF patients . If they don't have it, they don't have access to the medication and they sink; that is, the deterioration will be much faster. Personally I do not agree with that the CUD be eliminated, simply because there is no other alternative to replace it. The patient cannot be told to 'take off the life preserver, I will later throw a rope at you'. It is exactly the opposite, "Rizzo graphically concludes:" a law like this, without the CUD and without ensuring the provision of medication for all patients, in a homogeneous and federal manner, is not acceptable. "
Who provides the CUD? The National Agency for the Disabled, whose maximum authority is Susana Underwood, a veterinary doctor. But first, the patient must undergo an examination carried out by the Disability Evaluation Board. The anger of Santa Cruz (Tu Aire, Mi Esperanza) lies in the fact that "the evaluation is made by social workers, eye doctors, traumatologists ... What do they know about respiratory diseases? And the CUD is provided by an organism that is led by a veterinary surgeon It is inadmissible. "
Silvina Santa Cruz with her daughter Milagros, who has CF. "The Ministry of Health wants to veto the most important articles of the law that was passed less than two weeks ago."
According to Silvina Santa Cruz, "on Friday there will be a partial veto because on that date the ten days following the approval of the law will be fulfilled. If at this time there are no changes, the law must be enacted in its entirety , so We are convinced that they will make modifications, which the minister, Vizzotti and Tarragona warned us will materialize on Friday. I hope that the President of the Nation Alberto Fernández and the first lady Fabiola Yañez will reauthorize Minister Ginés ".
On Tuesday, July 21, two days before the law was passed in the Senate, in a plenary session where the issue began with the 51 senators from the three commissions, the most salient was the "disavowal" of President Fernández by minister, who had objected to the approval of the law and went on to say that "it is inapplicable in several of its articles."
However, Fernández "ordered" his block of the Frente de Todos "to advance with the ruling and then review, through a decree, the minister's indications." On the other hand, the first lady Fabiola Yáñez, in person, had put on her shoulder the campaign in favor of a law , publishing on her networks videos in support of those who suffer from the disease.
"This is not a Ministry of Health, it is a ministry of social work, unions and prepaid. This ministry is ill, it does not cure, nor does it defend the hope of the sick, but it is more aware and concerned about the pockets of those who manage social work and prepaid. This ministry prefers dead patients in the short term to reduce their expenses, "says Santa Cruz, who saw his son Lucas die, just six months old, by CF and who has Milagros (12) , fighting against this incurable disease.
Since a few months ago, cystic fibrosis began to be in the media, it came out of ostracism and today this genetic disease, not contagious, which has no cure and that affects the lungs and pancreas, is more visible . To achieve a better quality of life, those suffering from the disease require daily treatment, at a very high cost, until now not covered by state social works.
Santa Cruz, in its fight, makes it known that "the law is fundamental because it would contemplate 100% comprehensive coverage of medications, which must be provided in a timely manner and under the conditions and amounts necessary as prescribed by the attending physician. The heart of the law is Article 7, which speaks of the immediate granting of the Single Certificate of Disability (CUD) to the diagnosed person, which will serve for life. But the minister will veto it, because he is afraid to set a precedent and that other pathologies such as Spinal Muscular Atrophy also claim by their individual law. "
Laura Togno, Mora's mother (12), also a CF patient, is another of the benchmarks of the daily struggle, first for the law to come out and now for it to come out in all its essence. "The CUD is the springboard, access to equal health treatment , is a way of achieving the rights to be treated accordingly" and the possibility of obtaining the medications prescribed by specialist doctors, an article that Ginés also opposes " .
What conclusion remains from the meeting on Wednesday? "The authorities stated that the things they did commit to solving are : the centralized purchase of medicines, the generation of a special drug bank, the creation of an advisory medical council, the formation of a basket of minimum benefits and the search for places where there are obstacles to accessing medication and treatment.
"It is a ministry that tells us about the National Constitution, about prioritizing health, but wants to give us a consolation prize, an alms that is the same national program, which already exists and does not work, it is pure sarasa ... vetoing the law and annulling it in its protective essence of health. To veto articles 5, 6, 7 and 13 is to transform the law into an empty law. There are 1,800 families who depend on that law, who depend on the CUD. Without it, there is no right worth. "
Clarín tried to communicate with Minister Ginés González García and with the Secretary of Access to Health Carla Vizzotti, who did not respond.
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