Bethlehem is 7 years old and has cystic fibrosis, a hereditary disease in which the body produces an abnormally thick and sticky fluid, such as mucus, that accumulates in the airways and in the pancreas.
This accumulation causes life-threatening lung infections and serious digestive problems. The forecast for Bethlehem, in the medium and long term, is reserved.
She was three years old when she was diagnosed with this condition in the Hospital of the populated child, where she is served until today. Since last November, the girl does not receive from this institution, that belongs to the Popular insurance, the medicines that it needs. «They just tell me there’s no and there isn’t,» says Anne, her mom.
The first one that was left to give, in November, was a drug to improve the function of the pancreas, they created. Since February no longer receives Alpha dornase, to reduce the mucosal secretions characteristic of cystic fibrosis.
Ana has had to buy the meds and rent an oxygen tank. In March, Bethlehem contracted pneumonia, but in the village children’s Hospital he was told that, since last year, they were no longer providing oxygen for any patient who was not diagnosed with COPD and was over 60 years old.
«The monthly spending between those two drugs, the oxygen and other drugs that Bethlehem requires is 6000 pesos,» says Ana. She works as a receptionist at a real estate company, where she earns 9000 pesos a month.
«I have no contract, no health insurance, I’m on a fee.» She is the main responsible for covering the expenses of the child. She’s a single mother. The girl’s dad only gives her about 2000 pesos every month or every two months.
«My family is the one that supports me too, they do coperachas to help me buy the drugs, to pay for the oxygen. And I try to organize, bought a drug for two months, for the next month to have free that amount and cover other expenses, so I take it. »
READ: Treasury accuses pharmaceuticals of shortage of medicines in States; At the federal level there is supply, insists
Ana is one of many cases that have resorted to the platform not to the Huachicol of medicines to report what she is living. This website collects information on non-supply cases, incomplete or inopportune supply of medicines, or medical supplies in public clinics and hospitals in the country.
The Civil society initiative was officially presented on May 7th. In the information cut of the first 20 days, the organizations that promote it report that more than 327 reports of people who did not receive their medicines have been registered. The average number of complaints is 20 per day.
57.6% of the total has been concentrated in the ISSSTE, 21.5% in the IMSS, 11.5% in the Popular insurance and 9.2% in the rest of the other state health systems and PEMEX. 19% of the cases are drugs for hypertension care, 15% diabetes, 8% cancer, 5% for HIV and 2% for renal transplantation.
The drugs that are most reported with shortages are losartan (39 cases), used to control high blood pressure; Insulin (13), to control the amount of glucose in the blood; Vidagliptina (11), for type 2 diabetes; Telmisartan (8), also for arterial hypertension and tacrolimus and Imatinib (7 each) both for renal transplantation.
The entities with the highest prevalence of cases reported in the platform are: CDMX, with 103; State of México, 42; Veracruz, 18 and Sonora and Jalisco with 16 each.
The organizations that drive the initiative – NOSOTRXS and successors living with HIV from the IMSS (DVVIMSS), in alliance with the FOUNDING of analysis and Research Center, the Mexican Association for the fight against cancer, together against cancer and the Mexican Association Cystic fibrosis – Ensure that they have sent the data collected to the institutions listed on the platform.
«We sent today (Monday) trades to each of the institutions, with the data disaggregated from the allegations we have received, and we have also sent a trade to Jorge Alcocer, secretary of Health,» explains Abel Valdez, director of innovation and projects of Nosotrxs.
READ: Did you not have your medicine in IMSS or ISSSTE?, you can denounce the shortage on a platform
The person in charge of the citizen platform specifies that the intention to make these reports is to ensure the right to the health of the patients, and to put them at the center of any initiative that the Government undertake.
«We welcome the intention of the current president to end the chains of corruption in the purchase of medicines, we know that it is a systematic problem that comes from time ago, but it is necessary to put patients in the center. As long as this is resolved, the important thing is to ensure the right to health. »
Valdez anticipates that in the coming days they will be visiting hospitals to collect allegations of drug shortages and direct supplies in the institutions, and not only on the platform. «The spirit is not to attack the government, we applaud the intention to end the huachicol of medicines, but we are about to find solutions that do not affect the patients.»
Thank you for reading! Help us get on with our work. How? Now you can subscribe to the political Animal on Facebook. With your monthly donation you will receive special content. Find out how to subscribe here. Check out our list of frequently asked questions here.