Success: the families of dependent minors enter the vaccination plan

The tenacious demands of the families of highly dependent people, such as children with rare diseases, have borne fruit. After knocking on many doors and pulling every conceivable string, the Health department has finally taken them into account in the Covid-19 vaccination plan.

The plan only included vaccinating the professional caregivers of these people, such as physiotherapists, but left out the families, which in many cases take on the full weight of the care.

So far there’s a statement of intent, yet to be finalised, which has greatly relieved the families of dependents. This is the case of Lluc, a child who suffers from myotubular myopathy, a rare disease that affects the skeletal muscles and forces him, among other things, to be connected to a respirator 24 hours a day. Àlex Roca, Lluc’s father and promoter of the Petits Superherois (Small superheroes) association, has been one of the leaders of this demand.

"We have gone through 11 months of very severe confinement, because we’re families that already have to be very careful in our daily lives. And, with all due respect, when we saw that, for example, veterinarians were being vaccinated before us, our hearts sank. It’s something that is very urgent for us", he explains.

Francesc Cayuela is the president of the Federació Catalana de Malalties Minoritàries (FECAMM), the Catalan Federation of Rare Diseases, which has conveyed the claim of families such as Lluc’s. Cayuela explains that, at the beginning, the cases of people with rare diseases were not taken into account in the vaccination plan.

"We understand that it’s difficult to look at the details, the particular cases that fall outside the standard line, but when the vaccination plan was generated, rare diseases, which are already peculiar in themselves, were not addressed at any time, neither by Europe nor by Spain. We simply demanded that we be taken into account", the president of FECAMM explains.

In recent weeks, the distress of the families of dependent children has been great after seeing that there was no plan to vaccinate them in the first phase. "They were forgetting about families with children who suffer serious diseases, since there was no plan to vaccinate their relatives, who are their only caregivers", Àlex Roca explains.

In his case, his son Lluc cannot receive the vaccine because not enough clinical trials have been done. "If his mother or I get sick with Covid, there will be no one who can take care of Lluc", explains Àlex, as an example of a situation that many families share.

After demanding it for a long time, the Health Department will finally take into account cases like his. The Deputy Director General of Health Promotion, Carmen Cabezas, explained that vaccinating people with high degrees of dependency and their direct caregivers, including "informal" ones such as family members, "is a great challenge" and announced that the process will start this week.

In addition, the Secretary of Public Health, Josep Maria Argimon, added that "saving a strategic reserve of vaccines" for this group is under consideration. Currently, however, the health plan only provides for vaccinating one non-professional or informal caregiver for each dependent person. In addition, this solution has not yet been raised in other autonomous communities of the country, which are also demanding it.

Francesc Cayuela explains that he conveyed this anguish that was communicated to him by the families of dependent people and that they have started working on solving the situation: “From CatSalut they have told us that they understand our anxiety and they have given us a way to solve this situation, which we now have to manage and, therefore, we still cannot explain in much detail”. Thus, according to the president of the FECAMM, "as soon as possible, these people will be included in the vaccination plan with the highest priority”.

And so it has been: Àlex Roca confirms that the Health Department has already contacted them to start the process of vaccinating them. They have not yet been able to specify when this will happen, but it will be soon, says Lluc's father.

Furthermore, Cayuela points out that in his meeting with the Health Department he also asked that the complexity of the whole vaccination process in the case of people with rare diseases be conveyed "in a way that is understandable to those affected". "The response has been positive and we are committed to organising a webinar to share information in a way that is easy for the whole collective to understand," he said.