Patient organizations raise their hands and ask to be heard by the authorities

Everything has been uphill, the associations agree who have not only had to face the change of government, and therefore, a new way in which health is viewed, but who have also had to face the pandemic, with the implications this represents.

In the framework of the webinar “The role of patient organizations in the current health situation”, organized by El Economista, health experts agreed that the pandemic has forced associations to reinvent themselves, in addition to highlighting problems that already existed.

“The pandemic (…) came to turn us around, the pandemic is combined with the change of government, with the way of looking at health. Everything has been uphill, as associations lower our funds ”, according to Guadalupe Campoy, Director of the Asociación Mexicana de Fibrosis Cystica, AC, who added that said organization had to reinvent itself by providing zoom care, although it has also had to make inquiries face-to-face.

Regarding the subject, Gabriela Allard, President of the Mexican Diabetes Association, mentioned that the pandemic “made more evident the lack of prevention, treatment, adherence to a control scheme” and even to obtain supplies that would allow patients to self-monitor your glucose levels; Therefore, he stated that the glucometer should have the importance that the thermometer currently has, which would allow patients to know their glucose levels, and be able to act on time.

For her part, Rosa Farrés González Saravia, President of the Mexican Federation of Alzheimer’s, added that, in the case of this disease, there was already a stigma since before the pandemic, which prevents raising awareness about this disease. However, he clarified that the crisis caused by COVID-19, forced many care centers to reduce their staff, which has caused problems of violence because patients return to their homes, and their families are not trained to care for them.

Another problem is the delay in both diagnosis and patient care. “From this administration, it seems that associations are more the enemy than the friend (…) there have been many cuts,” he denounced.

These have not been the only obstacles regarding the treatment of these diseases, as another problem is represented by both inexperience and the shortage of medicines.

“On the issue of cancer, we had hope of a very positive change in 2018, but despite the promises made in the government, the Seguro Popular is changed, and they want to move to INSABI.” “The people who put in these places did not have the experience, re-assembling a Popular Insurance has cost a lot of work”, “the shortage is the cherry on the cake”, “I do believe that we are in a situation (in) that see a light at the end of the tunnel ”,“ the associations are having a bad time, and our beneficiaries (are having it) more badly than us ”, according to Mayra Galindo, General Director of the Mexican Association for the Fight Against Cancer.

In the same sense, Pablo Trejo, President of the Mexican Association of Pulmonary Arterial Hypertension, agreed, who clarified that the issue is not only about changing public policies, but about actually offering the conditions that allow monitoring of all these diseases.

Regarding the budget, health experts demanded transparency, specifically in relation to vaccines, on which they mentioned that it is not really known what the cost is.

“There are many things around, one is transparency, another is disorder, having removed everything to put (something) new without having had this plan. We entered a labyrinth of problems that grew and all of them fell on the patient “, according to Guadalupe Campoy, who added that” being open to solutions being part of the solution so that things improve would be very important. “

“With very few personnel we do fundraising, administration, we provide training, we speak with doctors, we speak in Congress, we do research, dissemination, social networks, we are people who know the disease in which we are engaged and we know what direction they should be. take these patients, ”he said.

Pablo Trejo added that one of the main problems they currently face is the distrust that the government has in relation to associations, for which he clarified that the organizations “we are a few people who work for a cause with scarce resources, we are convinced that if we don’t raise our voices, things will continue the same ”.

He added that, to break this mistrust, all that is needed is a dialogue with the authorities of the health sector, “what we want is for them to tell us how we can help in order to have a more efficient matter,” he mentioned.

Another issue was represented by the unit, before which, Mayra Galindo mentioned that an alliance must be sought where all the organizations are to have a single voice, on a single issue. He added that this alliance has already been made on issues such as shortages.

On the subject, Guadalupe Campoy added that they all have to work together to get the health project out, including the government, academia, laboratories, associations, and so on. “You cannot do it alone, our mission is to move forward with what we were created for, we would have to make (the authorities) see our trajectory, the work we are doing,” he mentioned.

Gabriela Allard complemented by mentioning that the first thing to do is remove the myth that all organizations work the same, and that we are enemies.

“We can support, make the problem visible at the national level. The same people who work in the institutions are suffering it ”, we realize that this vicious cycle is not going to be broken, if we do not work on the health issue, he said.

Branded Content

Branded Content is El Economista’s commercial content unit that gives value to brands with content worth reading.

Leave a Comment