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Rare Disease Care and Treatment in Mexico: An Evolving Landscape 

In Mexico, it is estimated that between eight and 10 million people live with a rare disease (RD), consistent with the global estimate of 6-8% of the population.¹ The World Health Organization (WHO) notes that there are currently more than 7,000 described rare disease diagnoses, which are often difficult to diagnose and treat, particularly because 70% of them manifest in childhood and more than 95% still lack specific therapies.¹ This global reality underscores the urgent need to address local disparities in rare disease care and treatment, as each lost year can lead to poor health outcomes and financial hardship for families. 

The good news is that the pharmaceutical pipeline for rare diseases is significant, and Mexico has adopted mechanisms to accelerate the development and approval of treatments for rare diseases, including a regulatory pathway for orphan drug designation.2 

Advancements in Rare Disease Diagnosis and Treatment in Mexico 

In recent years, Mexico has made significant progress in enhancing access to rare disease diagnosis and treatment through regulatory and clinical advancements that align with international standards. Yet, considerable work is still needed to ensure these advancements reach all patients who need them. 

The Mexican Congress recently began an initiative to help collect necessary data to develop evidence-based policies for rare diseases, establishing a National Registry of Rare Diseases. Furthermore, the Rare Disease Diagnostic Unit at the National Autonomous University of Mexico (UNAM) has reduced the diagnostic process for hundreds of families to less than two years using telemedicine, genomic sequencing, and the expanded neonatal screening program, which covers 65 conditions.

“Although the health system has improved, some patients still wait years for a diagnosis. Early intervention would make all the difference,” says Juana Inés Navarrete Martínez, a geneticist and the coordinator of the Department of Genetics at the Faculty of Medicine of UNAM. On average, the ‘diagnostic odyssey’ lasts four to eight years, requiring patients to visit up to eight specialists.3 

When it comes to treatment, Cofepris, the Federal Commission for the Protection against Sanitary Risks—Mexico’s central regulatory authority—has granted orphan status to 96 medicines and minimized authorization time to an average of six months.4 Despite this momentum, many of these orphan-designated medicines do not appear in the basic tables of the Mexican Social Security Institute (IMSS), the Institute of Security and Social Services for State Workers (ISSSTE), or IMSS-Bienestar. They are also largely not covered by private insurance, leaving many families with no choice but to pay out-of-pocket – or, as is often the case, go without treatment all together. 

Given the high cost of many rare disease treatments, improving access to treatment for both insured, uninsured or underinsured patients, remains a critical priority.  

“Patient Access Programs, such as those designed by Axios International, can help provide sustainable models to help patients access the treatment they need for the long term. These programs have benefited thousands of patients in 40+ countries around the world, including Mexico,” says Silvia Méndez, Axios International’s Regional Operations Lead in Mexico. “It’s important that we explore how to scale these programs to be able to reach more rare disease patients in Mexico.”  

Dr. Navarrete Martínez adds: “These programs for patients are very important because they make invisible diseases visible. Organized patients help put these diseases on the radar.” 

What The Future Holds  

As Mexico continues to strengthen its approach to rare disease care, collaboration across sectors will be key to building a more inclusive and effective healthcare system. Policymakers, healthcare providers, patient advocates, and industry leaders must work together to advance diagnostics, streamline regulatory pathways, and implement sustainable access models.  

By prioritizing rare disease patients and investing in long-term solutions, Mexico can lead the way in transforming rare disease care, not just as a national imperative, but as a model for other emerging economies striving to do the same. 


 Sources 

¹ World Health Organization. Rare Diseases: A Global Health Priority. Geneva: WHO; 2025.
2 Grand View Research. Mexico Clinical Trials Market Size & Outlook, 2023–2030. Grand View Research; 2023.
3 El Economista. Challenges of RRS diagnosis. El Economista. February 17, 2024.
4 El Economista. Cofepris recognizes 96 orphan drugs. El Economista. March 2, 2024.
5 Government of Mexico. Press release 004. Mexico City: Coordinación de Salud Global; June 30, 2023.

How Personalized Support Improves Chronic Disease Medication Adherence

13 May, 2025

WHY DO SOME PATIENTS STAY ON TREATMENT WHILE OTHERS DROP OFF?

When a patient is newly diagnosed with a chronic condition, such as heart failure or asthma, they often begin treatment with the best intentions. But many discontinue within just a few months. Why?  

A new peer-reviewed study by Axios International, published in the Journal of Comparative Effectiveness Research, explores this question using real-world insights from our programs in the UAE to help shape more effective, personalized adherence strategies. 

REAL-WORLD EVIDENCE: KEY FACTORS THAT INFLUENCE ADHERENCE

This study followed patients newly diagnosed with one of five chronic diseases—ankylosing spondylitis, heart failure, multiple sclerosis, psoriasis, or asthma—for at least 12 months. Using real-world data collected through Axios’ Patient Needs Assessment Tool (PNAT), researchers were able to analyze the key predictors of sustained treatment versus early discontinuation. PNAT is a proprietary tool developed by Axios to identify the risk factors most likely to impact long-term adherence in chronic disease care and determines the most effective adherence interventions based on his/her identified risk factors. (Read more about PNAT here.)  

TOP FACTORS LINKED TO ADHERENCE 

The study found that patients were significantly more likely to remain on treatment if they: 

  • Were satisfied with the time spent with their doctor 
  • Felt involved in making treatment decisions 
  • Could manage their disease confidently 
  • Received emotional and practical support from family and friends 
  • Had low dependence on others for daily activities 

One of the most predictive factors was the quality of time with the prescribing physician. In fact, patients who reported a positive experience during consultations were nearly seven times more likely to continue treatment at 12 months. Conversely, those who reported high levels of anxiety and stress were far more likely to be lost to follow-up—a term the study used as a proxy for likely discontinuation of treatment. 

Cultural and social factors also played a role. Over the 12-month period, patients reported significant changes in areas such as: 

  • Difficulty participating in community activities 
  • The influence of cultural habits 
  • The role of spiritual beliefs 

These insights suggest that as patients adapt to life with a chronic condition, their personal and social environments shift in ways that may either support or undermine their ability to stay on treatment. 

IMPLICATIONS FOR PATIENT SUPPORT PROGRAMS 

Study findings highlight the importance of personalizing adherence interventions to help patients stay on treatment and achieve better medical outcomes. Tools like Axios’ PNAT can help identify at-risk patients early and inform the development of targeted interventions that directly address the medical, behavioral, emotional, and social barriers to adherence. With the right tools and personalized approaches, we can support patients not only to begin care, but to sustain it over time to achieve optimal medical outcomes.  


Read the full article: Journal of Comparative Effectiveness Research 
Learn more about PNAT: Axios PNAT Tool 

Advancing Accessibility by Ensuring Patient Data Confidentiality  

23rd March, 2024

Table of Contents

In an era where technological advancements intersect with healthcare innovation, the protection of patient data emerges not just as a necessity but as a moral imperative. For over 25 years, Axios International has stood at the forefront of this mission, empowering patients to navigate the intricate pathways of their treatment and healthcare access with confidence and ease. 

The journey towards accessible healthcare is filled with challenges, and one of importance is protecting patients’ personal data.  As technology evolves at a breathtaking pace, it has become an integral part of service delivery. Axios, too, has embraced the digital revolution. By digitizing operations, it has not only made healthcare more accessible but has also elevated the standards of patient privacy, confidentiality, and security to global standards. 

Doctor using computer to manage healthcare insurance with global network
Stock image: Physicians and Axios employees ensure patient data is safely secured at all times

Technology plays a crucial role in safeguarding patient data by providing tools and mechanisms to secure, manage, and monitor sensitive information throughout its lifecycle. Innovations like Cloud Services, Encryption, DLP, Anti-Malware Software, and Multi-Level Access are a testament to the technological revolution that has strengthened our defenses against unauthorized access. Yet, the quest for a user-friendly and sustainable digital healthcare ecosystem is an ongoing challenge. However, Axios is committed to relentless improvement and adaptation in this fast-evolving landscape. 

Safeguarding patient data: A core priority 

Protecting patient data confidentiality isn’t just a goal at Axios International—it’s a pledge. By prioritizing informed consent and respecting patient preferences, Axios reinforces the trust that is foundational to the patient-provider relationship and crucial for a seamless and effective treatment journey. This commitment is reflected in our adherence to the world’s most stringent standards and regulations.  

Aware of the profound implications of data breaches, Axios has established robust protocols to address such incidents swiftly and efficiently by prioritizing immediate containment and transparent communication. These protocols include encryption of data, impact analysis, password policy, multi-factor authentication for access to sensitive information, penetration tests, and frequent internal audits to identify and address potential vulnerabilities and risks. 

The company also takes internal and external safety measures, such as: 

  • Restricted access controls: Access to patient data is restricted to authorized personnel only, who are covered by the patient’s consent and undergo rigorous training on data privacy. Role-based access controls are given to select individuals only. 
  • Periodical training and education: Axios invests in ongoing training and education programs to ensure that all its employees are well-versed in data privacy best practices and are aware of their responsibilities regarding patient data confidentiality and safety. This includes training on identifying and reporting security incidents, maintaining the integrity of patient data, adhering to regulatory requirements, and continuous learning of the updated practices. 
  • Continuous monitoring and improvement: Through its audit program, Axios continuously monitors its systems and processes for any potential security threats or breaches. Additionally, the company regularly reviews and updates its policies and procedures to incorporate industry best practices and address emerging threats, ensuring that patient data confidentiality and safety remain paramount. 
  • Compliance with regulatory standards: Adhering to all relevant international and local regulatory standards and guidelines governing the handling of patient data, Axios has established a practice of following the most restricted requirements, where complying with these regulations ensures that patient data is handled with the utmost care and confidentiality. All Axios operations are compliant with the General Data Protection Regulation (GDPR) for data security and privacy. It also adheres to the standard set by the Food and Drug Administration (FDA) for legal regulations and the Bribery Act 2010 of UK law for anti-bribery. The company has secured ISO certifications in six areas of management systems, such as exceptional quality, information security etc and also received accreditations from organizations such as Trace, which is dedicated to anti-bribery, compliance, and good governance, as well as Ecovadis that helps companies manage their Environmental, Social and Governance (ESG) risk and compliance, meet corporate sustainability goals, and drive impact at scale by guiding the sustainability performance. 
  • Secure data exchange: To provide necessary care and treatment to patients, Axios’ staff might have to work with healthcare professionals and support staff. If any data is shared, it is done securely and within the set protocols. 
  • To maintain the sustainability of our programs and create value for our stakeholders, everyone in our value chain, including suppliers, adheres to the global standards of patient data confidentiality as Axios by having a targeted assessment and evaluation process. 

Patients can control their personal data 

Patients have the right to control their personal data and make decisions about its use and disclosure. Axios fully respects patients’ autonomy by obtaining their informed consent for the collection, use, and sharing of their data and honoring their preferences regarding privacy settings and data sharing. From collection to data sharing, it is guided by the individual’s informed consent. Patient autonomy is pivotal in nurturing a trust-based relationship between healthcare providers and patients, a trust that is integral to the integrity of the healthcare system and the efficacy of the patient treatment journey. 

Healthcare organizations must ensure that patient data is processed securely to prevent unauthorized disclosure or breaches of confidentiality. Patient trust in the healthcare system and healthcare providers has a direct effect on their treatment journey. 

As a company, Axios is fully aware that a breach in patient data confidentiality can have severe consequences for individuals and organizations involved, impacting individuals’ trust in the healthcare system and posing legal and financial risks to healthcare organizations. These consequences may range from identity theft, compromised patient safety, reputational damage of the data controller, and negative impact on patient care to significant financial losses. Therefore, it is imperative for healthcare entities to prioritize data security and implement robust measures to protect patient information from unauthorized access or disclosure.  

Healthcare team collaborating with digital health technologies
Stock image: Employee ensuring patient data protection

Proactive stance on data breaches 

Axios takes data breaches and security incidents related to patient information extremely seriously and has established comprehensive protocols to handle such risks promptly and effectively before such breaches ever happen. Upon discovering a risk to data breach or security incident, Axios initiates an immediate response to mitigate the impact and prevent any harm. Upon the identification of a security threat incident, Axios mobilizes an incident response team—a multidisciplinary task force comprising experts from Quality & Compliance, IT, Legal, and other relevant departments. This team’s initial focus is on containing the incident to prevent, monitor and control the unauthorized access by proactively mitigating the risks. 

With its commitment to transparency and accountability, the steps that Axios follows involve a thorough investigation to uncover the root cause of the threats, employing a variety of methods such as system analyses, interviews with involved personnel, and audits of relevant logs and documentation. 

Once the investigation is complete, Axios takes decisive Corrective and Preventive Actions (CAPA) to address the identified issues and to strengthen its defenses against future incidents. This may include implementing additional security measures, updating policies and procedures, and providing training to staff members. Following the implementation of CAPA, Axios conducts ongoing monitoring and reviewing to assess the effectiveness of remedial actions and identifies any further vulnerabilities or areas for improvement. This may involve conducting regular security audits, penetration testing, and risk assessments. 

Axios’ commitment to continuous improvement 

Safeguarding patient privacy transcends mere adherence to laws and regulations or the implementation of best practices. Axios firmly believes that every patient deserves access to healthcare without the shadow of privacy concerns. This belief drives our unwavering dedication to protecting patient data confidentiality and safety at every turn, ensuring that our operations follow the highest standards of patient data privacy. Our approach to access is patient-centered, recognizing that the foundation of exceptional healthcare lies in respecting and securing the personal and sensitive information of those we serve. 

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