Something strange and incomprehensible is happening in the IMSS that for 6 years has systematically refused to treat 30 patients living with a rare disease called Morquio syndrome.
Half of them are children and due to lack of their enzyme replacement therapies they are seriously deteriorating. Sadly, one of them passed away last week. The problem of these patients is that by lacking a specific enzyme, their body is left with undigested toxic substances, and this leads to bone deformities, short stature, hip dysplasia, dental and ear problems, but the most serious it is the damage to the heart and lungs due to thoracic deformation caused by the lack of enzyme replacement; because of this they end up dying at a young age.
Grupo Fabry is the patient association that has been in this fight since 2017 and has managed to get each institution to agree to cover them. Issste, Pemex, state institutes such as Isemym and even Insabi already cover the disease and treat their patients.
Only the IMSS, led by Zoé Robledo, continues to inexplicably refuse. This, even though the required enzyme replacement is available from IMSS in its catalogue; and even when other diseases of lysosomatic failure -such as Gaucher’s disease, Fabry’s disease and Pompe- it is covering them.
It is estimated that in Mexico there would be about 300 patients with Morquio Syndrome, and almost half have been located. Of 147 detected, some 40 are treated at Insabi, which agreed to cover non-entitlers under 10 years of age, another 6 are at ISSSTE, 1 at Insemym and 1 at Pemex; another 30 are in IMSS without treatment and the rest are reaching the age of majority.
It could be thought that the argument for not treating them is the cost, but the enzyme replacement costs the same as that of the other diseases mentioned that are covered with their respective enzyme replacement; the difference only has to do with the dose depending on the weight of the patient, but the price of all these treatments ranges between 20,000 and 25,000 pesos per month.
The reason given by the IMSS is that it does not work for its patients. This, even though Grupo Fabry and the pharmaceutical manufacturer Biomarín -of Brazilian origin- have shown with national and international studies evidence that it is effective and changes the lives of patients.
Last December in Guanajuato, doctors from an IMSS UMAE saw that the treatment was available in the catalogue, and they began to give it to a 10-year-old boy with Morquio Syndrome, but in January they withdrew it without explanation, only They told the parents that it was due to orders from the central administration of the IMSS, and they did not give it to them again. They would have sustained him for at least 6 months to be able to make an evaluation and confirm or rule out that the drug works, but it was not possible.
Family members cannot turn to Insabi for their patient to receive treatment because they would have to leave IMSS and lose their rights. Thus, on the other hand, there is the concern of the relatives of patients treated at Insabi; Given the signal that it will now be IMSS Bienestar that will provide coverage, the fear is that there will be setbacks for those who are already covered by Insabi…
As in many other diseases, there are great doubts about what will happen with IMSS-Wellness. It is one of the tangible problems experienced in Mexico by having a fragmented, messy and unequal health system.
As Alejandra Zamora, patient coordinator at Grupo Fabry, says, it is very difficult to be struggling with a divided and fragmented health system that refuses to provide care to patients when faced with an option that gives them the opportunity to change their lives. .
About the fans abandoned by Insabi
It is important for Insabi to report what finally happened to the 185 fans that it had abandoned at customs in Manzanillo, Colima. It is an issue that came to light last February from the last report issued by the Superior Audit of the Federation (SF), the result of the audit of the 2020 public account, and which will remain open as long as the Insabi does not finish clarify if you were able to recover those fans or if, when they were declared abandoned, they were destroyed; and in that case how much the loss meant for the Treasury and for the hospital institutions that should have received them.
What has already been clarified from the company Viva Enterprises Limited is that in total it delivered 700 fans: 515 installed and used in hospitals in 26 states of the country, plus the 185 mentioned that Insabi had not removed from the aforementioned customs office until recently. ).
Originally there were 1,000 ventilators purchased, but it has also been clarified that the contract was modified to reduce the amount to 700, which implied a reimbursement of 17.7 million dollars to Insabi corresponding to 300 ventilators that would no longer be provided.
What does have to be clarified is about the fans abandoned for many months in customs.
It is known that there are dozens of companies in a situation similar to this one, and that there are 19 Insabi officials singled out for their actions -omissions, accusations and misrepresented statements- before the ASF.
Pharmaceutical lithium, without risk
Now that the 4T has decided to approve the nationalization of lithium, not a few will wonder what will happen to lithium, which is an active ingredient for the pharmaceutical industry, specifically to produce drugs for bipolar disorder or other mental health problems. They make it clear to us that this lithium, which is pharmaceutical grade, is imported by the industry from Italy and fortunately the populist measure of nationalizing it will not have any repercussions in this medical aspect.
Journalist on economics and health issues
Health and Business
Communicator specialized in public health and the health industry. She is studying a master’s degree in Health Systems Administration at FCA of UNAM.
Founder in 2004 of www.Plenilunia.com, a concept on women’s health. I am passionate about researching and reporting on health, innovation, the industry related to science, and finding the objective business approach to each topic.