After 15 long months of waiting, finally the Ministry of Health and Pharmaceutical Vertex have reached a funding agreement.
From now on, ‘Kaptrio’ will already be responsible for the National Health System and this is not an inclusion any.
Mark the difference between being on the waiting list for a lung transplant or do not need it, it means being able to laugh without entering an endless cough attack, exercise, return to work and recover a normal life.
In the words of ELISA (30 years), affected by the disease that causes all these limitations – cystic and with which this newspaper spoke a little over a week ago, this medication “gives us total respite, to us and our relatives.
It will allow us to be able to make long-term plans. ”
Undoubtedly, the need to incorporate this drug to the portfolio of treatment of cystic fibrosis was a “urgent” need and the delay was completely “unjustified”.
That this treatment existed and could not be administered was “desperate, a mistreatment to Spanish patients,” explained Óscar Asensio, president of the Spanish Society of Cystic Fibrosis and pneumologist at the Parc Taulí University Hospital of Sabadell (Barcelona).
His “quality of life” and his life expectancy, literally, depends on the administration of this drug.
Before the new medications (Modulators of the CFTR protein) for this disease, “survival was around 40-45 years, but with Orkambi, Symkevi and Kaptrio, we will stop talking about this because the patients will die from another thing, already
that the disease is slowed down “.
Unfortunately, until the approval of Orkambi and Symkevi in our country, those affected had to wait three years and the experience did not help much because again, before the appearance of Kaptrio, they have also been waiting for them, neither more nor less than 15 months
.
Until Monday, Spanish Spanish patients were of the few Europeans who continued to benefit from an extraordinarily “revolutionary” treatment, as defined by Juan da Silva, president of the Foundation and the Spanish Fibrosis Federation.
This treatment comes to substantially improve and much higher than the modulators currently financed in Spain (Orkambi and Symkevi).
This will allow us to treat patients who do not currently have modulating treatment and improve the results of those who are already being treated with the modulators that we have to date, “Alensio argues.
From now on, not only can be accessed through clinical trials and compassionate use, as was the case with ELISA.
“It will be an accessible and available treatment in the health portfolio, I am very happy for all the patients who can benefit from”.
At this point, it should be noted that this option does not serve for all those affected, only for “people with cystic fibrosis of 12 years or more and that one of its mutations is F508del, regardless of what the second mutation is.”
Given that this represents 75% of patients in Spain, “around 1,700 could benefit from Kaptrio,” Estima da Silva.
Unfortunately, in these 15 months of delay, the disease of him has not stopped advancing: “Some people have passed away, others have been transplanted …”.
To better understand the ravages of this disease, you have to know it.
It is a genetic, chronic and degenerative ailment that affects many organs, especially to pulmonary function (sinusitis, nasal polyps, chronic respiratory infections, multiple exacerbations) and the digestive apparatus (pancreatic insufficiency and associated diabetes).
In these people there is a decrease in water, sodium and chlorine that gives rise to the obstruction of the channels that transport secretions, which causes its stagnation of secretions, infections and inflammations that destroy areas of different organs such as the liver, the pancreas,
The reproductive system and fundamentally the lung.
Respiratory function is reduced to the point of requiring a transplant.
For da Silva, “Today is a historical day for cystic fibrosis in our country. Access to ‘KAFTRIO’ is going to be an earlier and one later for a very important amount of people with FQ, who will have the opportunity to live their lives
Without the constant deterioration of your health that produces this disease and will mark a change in the survival of the collective, “he said.
For this reason, he has requested all autonomous communities to “facilitate this medicine as soon as possible so that people with FQ for which he is indicated can benefit from him without delay, following the medical criterion”.
“We can not talk about a cure of the disease, but it’s a great breakthrough because it slows down the deterioration and, in this case, the number of people who will benefit is very important,” he said.
Undoubtedly, new drugs mark a turning point.
For Elisa, Kaptrio has meant a change of life.
“Now I can run, climb stairs, follow the rhythm of my daughter (two years old) in the park, getting up early, laughing, breathing and filling my lungs without a coughing attack, oxygenation has improved and I notice faster thinking,
More productive … “.
Also, in terms of future plans, “I do not feel that I have to realize myself as a person to counterreloj. Kaprio brakes dry disease, there is no hurry.”
Because she knows how to know the before and after Kaptrio, today ELISA feels “happy” because the agreement reached between the Ministry of Health and Vertex.
“I know people who could not access the drug and was happening very badly, know that from now on they can access normally, it is a relief, a total respite in all the senses […] the change will be brutal. They will start with
A climb of lung capacity can do sports, work, surrender, make normal life and future plans … “.
As Amensio argues, “A few hours after starting the treatment, they begin to notice. The pulmonary function, the number of exacerbations, nutritional status, symptoms such as cough and expectoration improve substantially. Patients with advanced serious involvement
They can improve enough to get out of transplant lists […] today is a great day for people with cystic fibrosis, a great day for their families and for the collective of toilets that attends them. ”
