It is no secret that the current administration has great mistrust of the Civil society organizations, and among them it includes patient associations that are rowing against the current to get ahead and continue doing their historic work of supporting patients and making visible the problems experienced by each disease.
The government is limiting them, has reduced their options to receive tax-deductible donations and has them fiscally supervised instead of opening up other options or incentives to support them in their work.
For example, the Undersecretary of Health Hugo Lopez-Gatell ordered last October to halt the census of rare diseases initiated by the General Health Council, arguing that such information would benefit pharmaceutical companies and allied patient organizations; Along this path, it affected unattended patients and closed their hope of advancing in a timely diagnosis in order to receive treatment.
The topic was addressed in the webinar “The role of Patient Organizations in the Current Health Situation” organized by The Economist, which we had the opportunity to moderate and where Guadalupe Campoy, director of the Mexican Association of Cystic Fibrosis, pointed out that perhaps there have been organizations that are not transparent, but “we cannot pay just for sinners, we have to work together, and in our case our essence and trajectory of 40 years backs us up ”.
In that sense, Gabriela Allard, president of the Mexican Diabetes Association, he stressed that “now there are professionalized, self-sustaining foundations, it must be said that we support and make visible the problems that patients experience. We are not enemies, we can make the problems of patients visible because any citizen asks for health, quality of life and safety, if patients do not have their treatment, they can die ”.
Rosa Farrés González Saravia, president of the Mexican Alzheimer’s Federation which brings together 22 associations in 17 states of the Republic, put the finger on the wound by pointing out: “This government has a prejudice towards associationism because it has lacked sensitivity and intelligence to approach and truly know the situation of each suffering; They have lacked having a close patient with painful cancer, having a very dear relative with dementia, and seeing how it deteriorates day by day. They suppose that by attacking the associations the problem will disappear, but the reality is that the government does not do what the associations do ”.
“Mistrust can be broken when we have an open dialogue with the authorities of the health sector, when they realize that we are not looking for money, but the benefit of patients and that they tell us how we help so that there is patient care and is more efficient , ”Said Pablo Trejo, president of the Mexican Association of Pulmonary Arterial Hypertension (HAPMex).
The participants in this discussion agreed on the need to seek spaces with other decision-makers such as legislators and other government bodies, which will take time, “but it has to be done,” Trejo said.
Reorganize into blocks, an option to get stronger
It was commented at the event that in the face of the new reality, patient organizations have had to adapt, but are certain that they must play an important role within the structure of the system, not only among patients but also in institutions to achieve the joint objectives. For example, promoting actions so that patients do not lose adherence to their treatment, which is vital for the control of their disease.
What is happening, he told himself, is that new ways of dealing with problems must be found, and some organizations have begun to reorganize into blocs. An example of this are the efforts of Together Against Cancer, the Network for Comprehensive Care of Chronic Diseases or other social initiatives such as Zero Shortage that with parallel actions seeks to support these organizations.
“We have to look for alliances to constitute a single voice, with a single issue, to have the political will so that they listen to us, and although it seems that in this government that will does not exist, there are always ways; there are new legislators in Congress, you have to go to inform them and interest them in the matter, ”observed Mayra Galindo, general director of the Mexican Association for the Fight Against Cancer (AMLCC-Cancermex).
Dr. Pablo Trejo, who is also a PAH patient, highlighted the importance of allowing civil society and patient organizations to participate more actively in the discussion of the Health Budget in order to achieve a public budget for the benefit of patients. patients.
Towards an Advisory Council of patients in SS
For Mayra Galindo, it is necessary that patient organizations have a representative in the Cofepris, in Congress and constitute a consultive advice of patients as it happens in other countries.
“There is a point that we must put on the table and it is the participation of the patient as part of the team in the health system, that is, empowering them through education and co-responsibility in their treatment, we must change the chip in patients” Gabriela Allard agreed.
In the case of the millions of Mexicans living with diabetes, they still need to be active and proactive in their own health care, because 90% of the treatment has to do with the decisions of who lives with diabetes. “We have to help through education, we must see ourselves as a system in which we are all part.” Rosa Farré agreed on this as a way to influence disease prevention and reduce mortality.
In shortage, there is still no light at the end of the tunnel
Around the medicine shortage and medical devices, it was said that instead of being resolved, it has been aggravated by the pandemic, and no light is seen at the end of the tunnel, as there is still a lack of medicines not only in the Insabi, but also in the IMSS and other institutions, with a very high cost for patients.
“In Pulmonary Arterial Hypertension, when the patient stops taking his medicine it affects his health considerably. It is a low prevalence disease whose treatments can amount to 100,000 pesos per month, ”Trejo commented, noting that another blow for patients with high-cost diseases is that the option of research protocols that were an alternative to access the latest generation drugs, which are denied in the public health sector. There are fewer and fewer of these protocols and this is also to the detriment of patients, Trejo stressed.
Reference-www.eleconomista.com.mx