MS has long been known as an orphan disease in Colombia, but the increasing number of newly diagnosed patients is changing this picture. Dr. Adriana Casallas Vanegas is an MS specialist who is committed to providing the best possible care for people with MS. She studies multiple sclerosis management at the European Charcot Foundation and is a Fellow of the organization. Patients living with NMOSD or MOGAD also benefit from her fascination with demyelinating diseases. In the interview, Adriana provides insights into the Colombian healthcare system and contact points where those affected can find support.
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Table of Contents
Introduction – Who is Dr. Adriana Casallas Vanegas?
I am a neurologist specializing in demyelinating diseases. I spent some time studying in Spain and Mexico to prepare myself in the best way for patients. I am currently finishing my master’s degree in multiple sclerosis at the European Charcot Foundation, and soon I will go to Cemcat with the ECTRIMS scholarship. I am from Colombia and live an hour away from Bogotá, the capital of Colombia. I have 2 dogs named Bubba and Tango. I enjoy spending time with them, walking in nature, biking, and playing tennis. I come from a loving family that is always surrounded by many animals. I have a cheerful personality and I am always eager to learn new things and explore different trades. I am also very curious about technology, music, and literature.
Personal motivation for your career choice?
Ever since I was young, I have enjoyed interacting and working with people. The idea of being able to contribute to society is one of my main motivations in life. I decided to pursue a career in neurology because I have a passion for neuroscience, particularly the study of the brain and the nervous system.
During my specialization in neurology, I became fascinated by demyelinating diseases. It felt like I was opening the door to a new world of knowledge and opportunities related to the development of drugs and strategies to preserve neurons. This led me to develop a deep passion for this branch of neurology.
Now, working with people suffering from demyelinating diseases, I can confidently say that it was the best and happiest decision of my professional career.
Prevalence and Awareness of MS in Colombia
What is the prevalence of MS in Colombia and how many people receive a new diagnosis each year?
The prevalence of multiple sclerosis (MS) has significantly increased in several large, urbanized countries in Latin America, such as Argentina, Mexico, and Puerto Rico. Theoretically, Colombia has been known for its low prevalence of MS, leading to the classification of the disease as an orphan condition in the country. Data reported by the National Institute of Health in February 2023 revealed a total of 4,263 documented MS cases in Colombia between 2016 and 2022. The prevalence of MS in Colombia ranged from 1.48 to 4.89 cases per 100,000 inhabitants between 1995 and 2000, with variations observed across different regions due to various factors such as geographical variables, weather conditions, and altitude.
Recent prevalence estimates from 2009 to 2013 indicate higher rates of MS in the Andean regions, particularly in Bogotá and Quindío, compared to the Pacific or Atlantic coast. We are conducting a new study that presents initial data of 8.28 cases per 100,000 inhabitants. This data shows a significant increase compared to previous findings, indicating a similar upward trend in the prevalence of this condition in this region, as observed in other Latin American countries. This rise may be attributed to various factors such as the absence of previous government statistical data, small sample sizes, limited access of the population to neurologists specializing in demyelinating diseases, and inadequate resources for laboratory imaging.
How aware is the general population of multiple sclerosis in Colombia?
Thanks to World Rare Disease Day is raising awareness about the importance of timely diagnosis and comprehensive treatment for rare diseases. In 2010, Colombia enacted Law 1392, which recognizes rare diseases like MS as being of special interest. Regulations have been implemented to ensure social protection by the state. The government is currently working on a model to eliminate access barriers, improve diagnosis and timely treatment, and enhance management by health insurers and providers. Ultimately, this will have a positive impact on the quality of life of patients and their families.
Colombia is a remarkably diverse nation, with highly educated individuals in urban areas and lower literacy rates in rural regions. This diversity presents challenges in accessing accurate information.
Regarding the general population, there is a need for increased collaboration among healthcare professionals, advocacy groups, and community education related to MS. This involves recognizing symptoms, promoting social inclusion, and addressing the social stigma associated with MS, among other crucial initiatives.
In most MS centers in Colombia, MS Day is celebrated every May 30th. On this day, there are educational, supportive, and accompaniment campaigns for patients and their families, as well as recreational activities with multidisciplinary teams. Additionally, these teams utilize social media platforms such as radio and television to reach a wider audience.
Quality of Life for MS Patients in Colombia
What are some of the challenges faced by MS patients in Colombia regarding access to healthcare and support services?
The quality of life of Colombian MS patients has not been thoroughly researched. Initial studies using the MusiQol score have indicated a good baseline quality of life among these patients. However, there is a lack of complete and up-to-date follow-up data for MS patients in Colombia. This lack of information poses significant challenges for healthcare professionals, researchers, and policymakers in understanding and addressing the specific needs of MS patients.
The absence of comprehensive knowledge regarding MS patient follow-up and potential disparities between the public and private health sectors hampers the development of customized interventions and personalized treatment plans. To address this issue, rigorous scientific research covering various aspects of MS is critically needed. Closing this knowledge gap is essential for improving the well-being and quality of life of MS patients in Colombia.
Accessing proper care is particularly challenging in rural areas, as most neurologists are concentrated in urban centers. Additionally, there is a significant shortage of training in neuroimmunology and the diagnosis of multiple sclerosis, with only a few university-based centers offering specialized care and diagnostic services in this field, commonly known as MS care units.
Which cultural stigmas or misconceptions exists surrounding MS in Colombia?
Insufficient understanding of multiple sclerosis (MS) has led to numerous misconceptions among both the general population and healthcare professionals. Despite the distinct difference, MS is often mistaken for amyotrophic lateral sclerosis (ALS). One common misconception is that MS inevitably results in severe disability, which can profoundly impact family planning.
Individuals with MS may face rejection and be pushed into different work settings, leading to feelings of inadequacy. This can ultimately result in social isolation, loss of income, and disruption of family life. Given that MS tends to affect young people in their productive and reproductive years, it has a significant impact on their overall quality of life.
Furthermore, in certain communities, such as indigenous populations, access to MS treatments may be limited, and cultural beliefs can influence the utilization of these treatments.
How do cultural beliefs and attitudes affect the treatment and management of MS in Colombia?
As previously indicated, Colombia encompasses a diverse demographic, comprising Indigenous communities, Afro-descendants, mestizos, migrants, LGTBI groups, and other demographics. Certain individuals, reflecting their cultural and religious beliefs, may gravitate towards non-pharmacological or alternative natural treatments, thereby impacting their approach to healthcare. In this context, education assumes paramount importance in fostering proximity to and understanding of minority communities. Augmenting knowledge and ensuring adherence to pharmacological treatments are essential components of a comprehensive healthcare model.
Access to Treatment and Support Services
What types of MS treatments, therapies, or interventions are more commonly recommended or accessible in Colombia (e.g., certain types of DMTs, aHSCT, rehab)?
In Colombia, most multiple sclerosis (MS) treatments are available to patients, including first-line treatments, oral medications, and monoclonal antibodies. The Colombian health system comprises a large social security sector funded by public and private resources. There is a contributory regimen for individuals with the means to pay, such as those with employment contracts, and a subsidized regimen for people living in poverty or vulnerability. Priority special populations, including those displaced, abandoned children, minors affected by armed conflict, indigenous communities, elderly individuals in protection centers, rural migrant populations, individuals in witness protection programs, and the homeless, are also covered.
Patients can be treated with prednisolone, even plasma exchange in case of severe relapse.
Regarding autologous hematopoietic stem cell transplantation (aHSCT), it is not commonly performed in Colombia, but it is available in specific cases where there is no response to conventional treatments.
Rehabilitation in the context of multiple sclerosis (MS) has garnered significant attention in recent times. Health services now offer a range of rehabilitation approaches tailored to the unique needs of individual patients. In the case of centers of excellence, there is a distinct focus on neurorehabilitation, with dedicated teams or units providing comprehensive care for people affected by MS. I strongly believe that this specialized approach serves as a cornerstone in enhancing the overall quality of life for individuals living with MS and addresses an urgent, unmet need within the healthcare landscape.
Are there any specific laws or regulations in Colombia that protect the rights and promote the well-being of individuals living with MS?
In Colombia, MS is one of the orphan diseases, therefore they are protected by law, which means access to medical and pharmacological treatment governed by clinical guidelines. This model seeks to eliminate access barriers to care, improve timely diagnosis and treatment through more efficient management by insurers and health providers.
Social Support and Coping Mechanisms
How do MS patients in Colombia cope with the challenges of living with the condition?
Patient associations such as ALEM or FUNDEM play a crucial role in providing care for MS patients. These organizations offer specialized care and legal guidance to patients who need it. In addition, they play a significant role in educating and promoting social inclusion for MS patients and their families. They are valuable sources of information and provide academic, recreational, and sometimes rehabilitation support.
What role do social support networks and community resources play in supporting MS patients in Colombia?
The various academic and recreational activities organized by associations and comprehensive MS care centers help raise awareness about this condition. They provide opportunities for sharing experiences and enjoying social spaces outside of clinical settings. The growing knowledge about MS in the general population has also led to increased visibility of the condition in various media platforms such as newspapers, television, radio, and others. This has helped reduce misconceptions and has empowered patients to create an environment that promotes the best quality of life for people with MS.
How have healthcare providers in Colombia adapted MS management strategies to better align with cultural norms and preferences?
The Colombian health system has been continuously evolving to meet the needs of individuals affected by multiple sclerosis (MS). This includes providing comprehensive care that not only focuses on the patients themselves but also extends to their families. The approach encompasses continuing education initiatives and emotional support programs, which are customized to align with the specific beliefs and cultural nuances prevalent in different regions of the country. Moreover, this holistic strategy is underpinned by the use of clinical guidelines that have been specifically endorsed for the management and support of individuals living with MS and their families.
Multiple Sclerosis Management Master program
Why did you choose the Multiple Sclerosis Management Master's program offered by the Charcot Foundation?
I was always determined to pursue a specialized master’s degree in EM. Having been introduced to the concept of MSM (Master of Science in Management) during my attendance at the European Charcot Foundation congresses, I was convinced that it would offer one of the most impactful experiences of my life.
Thankfully, I took the initiative to apply and was accepted into this exceptional program. Through this unique opportunity, I have actively engaged with and learned from leading experts in the field, all with the shared mission of advancing care for individuals affected by MS (Multiple Sclerosis). This experience has not only been academically enriching but has also deeply empowered me on a personal level.
What new or in-depth things have you already learned about multiple sclerosis that will benefit your patients?
The MS care unit represents a holistic approach to multiple sclerosis (MS) management, viewing individuals with MS within the context of their families, social connections, work, aspirations, and personal beliefs. This comprehensive perspective ensures that care is not only multidisciplinary, but also deeply empathetic, addressing the complex needs and emotions of the patient. By recognizing the interconnectedness of all aspects of an individual’s life, this approach significantly improves overall quality of life, highlighting the essential role of empathy in the practice of science.
Gender disparities in multiple sclerosis research and leadership
How do gender disparities manifest in the field of multiple sclerosis research, particularly concerning representation in leadership roles?
It has become increasingly evident that there are gender disparities in academic medicine, particularly in the fields of neurology and multiple sclerosis (MS) research. Research indicates that women are less likely to participate in collaborative publications and have historically been underrepresented as first and last authors in publications and in phase 3 clinical trials in MS sponsored by pharmaceutical companies. Recent data from the American Academy of Neurology (AAN) revealed a significant gender pay gap in neurology compared to other medical specialties. Neglecting the role of women in academic leadership positions results in reduced visibility and recognition of research and leadership in MS, which can hinder progress in understanding the causes, treatment, and outlook of neurological diseases, including MS, especially considering that MS is 2 to 3 times more common in women.
What strategies or initiatives can be implemented to address these gender disparities and promote more equity in the future?
In many developing countries, there are various reasons for the gap between men and women in science. These include discrimination, gender stereotypes, social expectations, self-esteem, gender roles, and family life. It’s crucial to first measure and recognize this gap to act.
Initiatives, such as the one led by International Women in MS (IWIMS), are working to support and train women in clinical practice and research in the field of MS. the pharmaceutical industry, academic leaders, editorial committees, and scientific societies needs to consider both women and men in their policies.
Efforts are being made to reduce this gap. For example, ten years ago in Colombia, there were no women in leadership positions in the field of MS. This is a step towards creating a fairer environment for neurology in our country.
The MS community needs to work hard to ensure equal opportunities for women worldwide and to identify and raise awareness about gender gap disparities.
Quickfire Q&A Session
Complete the sentence: "For me, multiple sclerosis is...."
For me, multiple sclerosis is my purpose in life. It is my passion and the reason why I want to learn day by day.
What development would you like to see in the field of multiple sclerosis in the next 5 years?
I dream about advancements that will lead to a cure for demyelinating diseases, bringing hope to MS patients and fostering closer connections between healthcare professionals and those with MS, assuring them of constant support. On the other hand, have a better understanding of the pathophysiology of MS, to positively impact the invisible symptoms of the disease.
Farewell
Finally, what message of hope or encouragement would you like to share with the listeners?
I want to express my deep gratitude to Colombian patients. Their invaluable contribution is pivotal for the advancement of treatments, knowledge, and strategies aimed at improving comprehensive management. Their unwavering strength and patience are fundamental to our progress. I want to emphasize that they are not alone, and together, we can achieve remarkable results. Lastly, I want to instill a message of hope; although the journey is long, we are committed to triumphing hand in hand.
How and where can interested people follow your research activities?
You can follow my Instagram dracasallasneurologia. Also, you can find research and MS activities at X platform acv_adri.
Many thanks to Adriana for all her commitment and efforts to improve the lives of people with MS in Colombia.
See you soon and try to make the best out of your life,
Nele
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