2023-05-18 21:00:18
Doctors, without a doubt, are the main link in this process, since by regulation pharmaceutical companies cannot handle personal data or share patient data; Thus, the role of the doctor becomes fundamental, since they are the ones who involve Axios International in said programs. Through them, this is how this global company manages to get closer to the patient.
Little is said about rare diseases, sometimes they even go unnoticed in the health field, but for those who suffer from them and their families, the impact can be devastating. Among these diseases is mucopolysaccharidosis (MPS). This is a group of rare genetic disorders that affect the metabolism of mucopolysaccharides, which are essential components of connective tissue throughout the body.
MPS patients often face multiple surgeries and medical treatments throughout their lives, with great emotional and financial impact on them and their families. In addition, physical limitations and movement difficulties can make it difficult to fully participate in daily activities and maintain social relationships. As we know, it is a disease that not only affects patients, but also tests the resilience and support of their loved ones.
MPS can present in different forms and levels of severity, but all share a common thread: the progressive accumulation of mucopolysaccharides in tissues and organs, leading to a cascade of debilitating symptoms and physical disorders.
May 15 marks the “World Mucopolysaccharidosis (MPS) Day”, in order to bring the issue to the table and, in this way, raise awareness about this rare genetic condition, but with obvious consequences.
When these types of diseases are not diagnosed and treated in a timely manner, patients may present organic failures, which reduces their expectation of doubt, according to Dr. Alberto Hidalgo Bravo, a researcher in Medical Sciences at the National Institute of Rehabilitation (INR) ). .
Since MPS are genetic diseases, Dr. Hidalgo adds, “they are inherited in an autosomal recessive manner,” which means that both parents pass on the defective gene for the disease to develop. Diagnosis is made through genetic testing and clinical evaluation.
Within this framework, it is essential to achieve a timely diagnosis, which, according to patient testimonies, usually takes seven to eight years, and of course, to have adequate treatment, in order to improve the quality of life of patients and give them hope to those who suffer from it.
Undoubtedly, medical research has advanced a lot in recent years, since only a few decades ago there was no possibility of effective drug treatment, but now it is possible to have innovative therapies for patients with MPS.
Ongoing scientific work and research is carried out in order to improve diagnosis, develop more effective therapies and, of course, try to find a cure for this genetic disease.
Hence the importance of the results of the internal study of the Biomarin Pharmaceutical laboratory: “Understanding of the MPS disease through caregivers and patients”, through Dr. Nesty Olivares, medical director of said pharmaceutical company, who revealed very interesting data, as the following:
● 76% of the MPS patients in the study spend between eight to 16 hours each time they have to go to the specialized hospital for their weekly treatment, that is, one to two full working days per month.
● 47% of those surveyed shared that the first symptoms of the disease manifested between one and four years of age, among which the following stand out: short stature, pigeon chest, spinal deviation, claw hands and slow growth, among others further.
● 81% of MPS patients are cared for mainly by the mother, while the father is cared for in 14% and 5% by siblings.
● 62% of patients live in marginalized or rural areas, which is why it takes up to two days to travel to a hospital.
● 39% of patients are between 13 and 17 years old; 24%, from three to seven years; 19%, from eight to 12 years; and 19%, from 18 to 25 years old.
● 76% of patients can walk, while 24% cannot, so they get around with the help of a wheelchair.
● MPS care involves multiple health professionals, sometimes as many as 11; the specialists most consulted by families are: nurse, geneticist, orthopedist, pediatrician and pulmonologist.
It goes without saying that the management of MPS is complex and multidisciplinary, in addition to the fact that for its care it is recommended to have the accompaniment of a hospital accredited in the care of genetic diseases.
For her part, Alejandra Zamora, national coordinator of the Program for Patients with Lysosomal Diseases of the civil organization Grupo Fabry of Mexico, explained that with this disease come many and innumerable challenges; For example, since there are no nearby accredited hospitals, patients and their caregivers have to travel to other locations every week -often outside their own state- to receive their medication infusion. These transfers are risky for patients due to the transfers themselves and the insecurity that prevails in the country, in addition to making adherence to treatment difficult.
The main link, the doctors
Axios International is a pioneer organization in providing innovative and sustainable solutions to improve access to healthcare in low- and middle-income countries, currently led by Roshel Jayasundera.
It is a company dedicated to improving access to healthcare in emerging markets. It was founded 25 years ago, in 1997, and is headquartered in Dublin, Ireland. It is present in more than 100 countries. The firm offers practical and sustainable solutions to overcome patient access challenges. Its clients and partners include large pharmaceutical companies, healthcare providers, governments, and organizations facing the most pressing healthcare access issues.
Axios International works with the public and private sectors, designing and implementing access and support programs for patients, as well as addressing barriers to care and providing quality treatment.
The firm is on a mission to maximize patient benefit and drive market growth by building critical relationships with key players. Axios International has had a presence in Mexico since 2017 by working with Takeda, AstraZeneca and Pfizer, among other large pharmaceutical corporations and, of course, has implemented support programs for patients with chronic diseases. Now, it has plans to strengthen its presence in the national territory and increase its market share.
Axios International already has several programs in Mexico, both privately and publicly, to ensure access to treatment for patients and accompany them during their illness, since not only access to treatment is required, but also guidance with the patient during this journey. .
Local organizations and associations almost always inform the public about the existence of Axios International programmes. However, only physicians can refer patients, once diagnosed, to Axios International’s access solutions and patient support programs.
In this framework, doctors are undoubtedly the main link in this process, since by regulation pharmaceutical companies cannot handle personal data or share patient data; Thus, the role of the doctor becomes fundamental, since they are the ones who involve Axios International in said programs. Through them, this is how this global company manages to get closer to the patient.
With the intervention of the doctors, it is possible to follow up the doctor and the patient, in order to create adherence to the treatments and, thus, avoid future complications due to abandoning the treatment or not giving it continuity.
Stethoscope
Good news. The community of multiple sclerosis (MS) patients now have another alternative to prevent the progression of this disease, which is much more comfortable than injections, since the launch of an orally administered drug was recently announced, it is the drug Nukispa (dimethyl fumarate), from the national pharmaceutical company CORNE, which for the moment is imported from Europe, but will soon be produced at the laboratory’s plant in northern Mexico. Congratulations.
Jorge Arturo Castillo has a degree in Communication Sciences (CC) and a master’s degree in International Relations (RI) from the FCPyS of the UNAM. He is managing partner of Comunicación CM, from where he edits specialized media in the pharmaceutical, health, energy and technology industries. He has been a professor of journalism in the CC major, at UNAM, for more than 27 years. He is a content generator and has held various journalistic positions in the main media outlets in Mexico, as well as some international ones.
#MPS #raise #awareness #genetic #condition