Understanding Acute Lymphoblastic Leukaemia

ALL is a type of cancer that predominantly affects the white blood cells and progresses rapidly, making early diagnosis and immediate treatment crucial. According to the American Cancer Society, about 6,550 cases are diagnosed annually in the United States alone, with higher incidence rates reported in children. Symptoms are often nonspecific and include fever, fatigue, and bruising, necessitating specialised diagnostic techniques for confirmation.

Diagnostic Approaches

In HICs, ALL diagnosis is typically confirmed through blood tests, bone marrow biopsies, and sophisticated imaging technologies. Genetic testing is critical in diagnosing and determining the specific subtype of ALL, which can guide targeted treatment approaches. Dr Jane Hollingsworth, a haematologist at Johns Hopkins University, states, “Genetic profiling has revolutionised our understanding of ALL, enabling personalised treatment plans that significantly improve outcomes.”

Conversely, in many LMICs, such basic diagnostic facilities are not readily available. The World Health Organization (WHO) reports that access to essential diagnostic services, such as complete blood count tests, in some African countries is limited, leading to delayed or inaccurate diagnoses. Dr Abasi Ene-Obong, a clinician in Nigeria, comments, “In regions like ours, the lack of infrastructure means that many leukaemia patients are diagnosed at an advanced stage, where treatment options are limited and less effective.”

“The survival gap between HIC[s] and LMIC[s] (>80% compared to ❤0%) is one of the most profound health inequities across different communicable diseases and NCDs,” according to the WHO Global Initiative for Childhood Cancer (GICC), CureAll Framework

Treatment Protocols and Access to Care

Treatment for ALL typically includes chemotherapy, which can be tailored to the genetic features of the leukaemia cells in HICs. More advanced options, such as immunotherapy and stem cell transplants, are also available, leading to improved survival rates. In the United States, the five-year survival rate for children with ALL has increased to 88.5%.

However, the scenario in LMICs is starkly different. “The availability of chemotherapy drugs can be sporadic, and advanced treatments like bone marrow transplants are often not feasible due to cost constraints,” explains Dr. Ene-Obong. The lack of healthcare infrastructure and trained medical professionals complicates the treatment landscape.

Outcome Disparities

These diagnostic and treatment disparities directly impact patient outcomes. Data from the GICC CureAll Framework indicate that the survival rates for ALL in many LMICs are below 30%, a stark contrast to those in HICs. The socio-economic factors, including poverty and lack of health insurance, exacerbate these outcomes, limiting access to care and continuity of treatment.

Innovative Solutions and Global Initiatives

Addressing these disparities requires innovative solutions and robust global initiatives. Research into more affordable, generic chemotherapy drugs and more straightforward diagnostic tests could make a significant difference.

Pharmaceutical interventions by the companies

By prioritising the development of cost-effective treatments and facilitating more affordable pricing models, pharmaceutical companies can enhance access to essential medicines in underserved regions. Investing in local healthcare infrastructure and training, collaborating with global health organisations, and participating in patent pools or licensing agreements to allow generic manufacturing could dramatically improve treatment accessibility. Engaging in these initiatives aligns with ethical business practices and expands market reach, potentially leading to sustained corporate growth and a stronger global presence in the fight against leukaemia.

Strategies that include task shifting, improving the quality of medicines, and innovative healthcare service delivery routes could make a significant difference. For example, the Observer Research Foundation recently discovered innovation; in South Africa, the Central Chronic Medication Dispensing and Distribution (CCMDD/Dablapmeds) program has significantly improved access to chronic medication for stable patients by allowing them to collect their medication from external contracted pick-up points or fast lanes at public facilities using an SMS code, patients can save time and transport costs.

International efforts and skills sharing

A twinning programme is an innovative approach to enhancing child cancer care by fostering collaboration between hospitals in high-income countries (HICs) and those in low- and middle-income countries (LMICs). These “Twin Centers” are designed to share expertise, resources, and medical practices to improve childhood cancer diagnosis, treatment, and overall management. The programme includes setting up registries, employing data managers to monitor and optimise care, and developing educational tools for nurses to enhance local capacities. This strategic partnership not only aims to transfer knowledge and medical practices but also addresses critical gaps in resources and expertise that often exist in LMIC settings, thereby improving patient outcomes and building sustainable healthcare infrastructures.

A collaborative initiative between St. Jude Global and the World Health Organization (WHO) aims to enhance global access to essential, life-saving cancer treatments for children. This effort responds to widespread challenges in securing safe and effective medications, as underscored by the fact that 71% of low-income countries experience significant shortages in cancer medicines. These shortages stem from inconsistent availability due to supply and demand fluctuations and complex regulatory environments. Additionally, the pursuit of the lowest-cost medications can compromise quality, further endangering patient safety. Financially, the exclusion of pediatric cancer medications from national healthcare budgets frequently imposes severe economic strains on families in low- and middle-income countries. This initiative was bolstered by a resolution for improved access to essential medicines, adopted at the 70th World Health Assembly, highlighting a global commitment to overcoming these barriers in cancer care.

Conclusion

The striking difference in ALL outcomes between HICs and LMICs emphasises the critical importance of developing and implementing a global strategy to promote healthcare equity. Dr. Hollingsworth aptly states, “We need a collective commitment to not only develop medical technologies but also ensure they are accessible where they are most needed.” By working together to bridge this gap, we can save countless lives and make significant progress towards achieving the broader sustainable development goals of health and well-being for all. Addressing the disparities in ALL diagnoses and treatments is a moral imperative and a crucial step in building a more equitable and sustainable future for all.

References

• World Health Organization (2021). Global Initiative for Childhood Cancer (GICC).
• American Cancer Society (2024). Key Statistics for Acute Lymphocytic Leukemia (ALL).
• Leukemia & Lymphoma Society. (2023). Facts and Statistics.
• Observer Research Foundation (2024). Health Equity and Inclusion in Action.
• St. Jude Global (2024): Global Platform for Access to Childhood Cancer Medicines.

The post Addressing Global Income Disparities in Acute Lymphoblastic Leukaemia Care appeared first on Medika Life.

We want to teach them they do not need to “fit in”, but rather learn to accept who they are, understand their needs and progress into verbalizing and protecting those needs.

What Is Masking?

Masking is defined as “wearing a mask.” This is a coping mechanism that children, and many times, adults on the Autism Spectrum employ to withstand over stimulating and confusing environments.

The results are extremely unhealthy and manifest in various ways.

Especially in young children, it can look like physical, verbal or emotional detachment, a glazed affect, overly compliant behaviour, extreme fatigue, depressive ideology or actions, combative, angry, or exaggerated responses to minor issues, or adult-like backtalk (retortive).

Many parents find these symptoms difficult to verbalize.

In children with ASD, masking is an involuntary response to extreme stress and confusion that occurs when they attempt to meet the demands of their environment, but either do not have the tools to do so or cannot function safely in that environment to begin with (thus degrees on the Spectrum). It can be explained as tangibly putting one’s “presence” on hold, and placing that presence on a parallel dimension to exist next to their peers and/or school staff in a desperate attempt to “get by” without the emotional, mental and physical investment needed. They cannot safely (nor at all, usually) produce these things when their unique needs are not met.

They begin to simply, emotionally “stand by” to observe their present experiences, instead of feeling them, not (properly or at all) processing any reaction, communication or event, because their unique learning and social needs are not being met. They are literally “out of pocket” in their own daily life experience.

Compare their social experiences to watching a movie that is very difficult to follow. At times, you think you understand what is happening on the screen, but repeatedly a scene occurs which appears to you to be out of context to your momentary understanding of the storyline. You then lose your place in the sequence of things all over again. You spend the majority of time during this movie trying to “catch up” and understand what you are looking at. Movements and sounds feel 3D and can be shocking or feel invasive.

“Masking” emerges to support and protect a child’s self and psyche in controlling the multi-faceted internal dysregulation that occurs when he/she attempts to comprehend and respond to their perceived disorderly and demanding surroundings (creating a lack of safe haven).

The need for masking is compounded by environments (like classrooms) which are truly chaotic and disorderly to begin with.

This type of detachment is very painful, confusing and mentally exhausting for them to maintain.

What Causes Masking?

Incidental or chronic exposure to an overstimulating and confusing environment (such as a daily chaotic home environment or the extended hours of a daily school environment) cause negative coping mechanisms and distraught feelings in many children, but for children with Autism Spectrum Disorder there are additional neurological and social alterations that occur with such experiences.

Several necessary learning abilities and functions become compromised and often damaged in these children due to the physical, emotional and social stress occurring in an environment that is not specifically tailored to promote the wellbeing, integration and neurological safety of ASD children. Individual integrative care plans in school are an absolute necessity for their success and safety in their school lives.

Their ability to retain information, understand and respond appropriately to communication (instructions, conversations etc.) and a substantial decreased ability to tolerate any variations in noise level (even when previously acclimating and adjusting to these things through therapies) are further gravely affected.

This creates a fundamental discombobulation of previously compromised processing abilities, a breakdown in accessing cues to self composure and for the processing of events such as social interactions, verbal direction and stimulations, and confidence in “feeling safe.”

A mental and emotional shutdown occurs, necessitating the need to detach to “glide” through the day without engaging any or appropriate feelings about the day’s occurrences/human interactions or appropriating successful responses to such.

My Personal Experience With Masking

Journal excerpt:

It’s quiet today in the car on the way home from school. Watching Charlie in the rearview mirror, I see him sigh deeply as he looks out the window.

“How was school?” I ask. “It’s fine.” he says, without looking at me.

Attempting to briefly engage him again, I ask “What did you do that was fun to you? Did you play with anyone particular in recess?” He responds, frustrated. “I don’t remember, Mom, I told you that.” Most days, he recounts that he “does not remember” his occurrences in school.

This is a coping mechanism that allows him to separate his school environment and his safe home environment. For him, the first must not invade the latter.

Yesterday, Charlie’s response to his day at school was comparatively non-passive. By the time we had walked the 10 feet from the school office at dismissal time to the car, he already had a serious, public meltdown over the day’s swim plan cancellation, which continued intermittently until after 8 pm. Combative behaviour, resisting direction, aggression and backtalk are all common responses to over-stimulation causing the need to mask in school.

I am raising my 6 1/2 year old grandson whose diagnoses include Autism Spectrum Disorder.

Since 18 months old, we have attempted both regular and private daycare, Montessori (worked the best and the longest) and now finally a charter (public) school for his education and introduction to social development.

We have had many negative experiences that left Charlie detached and alienated in the classroom and even physically unsafe as the staff/teachers in the schools refused to follow through on safety and inclusion plans for him. I was not aware until very recently that the responses he had been having in subsequence to the poor care and exclusions he was experiencing was masking.

As a smaller child, he would pull his pants down at home, poke himself with items and generally run around like a madman, unable to properly re-acclimate to the home environment after school. I knew his sensory issues were the source, but I did not connect his (ASD) detached school environment to his behaviour at the time.

Understanding how autistic children respond to society’s idea of “normal” social situations is imperative. ASD children placed in public schools whose environment does not properly recognize nor support neurodivergence (or any sort of divergence from the norm, for that matter) causes these children to develop strenuous coping mechanisms that are exhausting and unhealthy.

Our family’s experience exemplifies this problem.

Practical Ways To Reduce The Effects of Masking At Home To See Your Child Happier and More Content

Reiterating the concept of home as their safe space fosters their belief that they are free to be themselves at home. This builds a reliable, daily source to de-acclimation from both hypo and hyper stimulations and the associated confusion and exhaustion of circumstances outside the home.

The following are effective ways to do this:

• Quiet time with books or drawing (see environment suggestions below)
• (Yes) TV time with time limits. Using an alarm for activities helps them know what to expect and for how long
• Manipulatives to center their nervous system: legos, blocks, both small and large motor skill sensory activities (bead threading, sand play, water play, finger-painting )
• Yoga poses
• Breathing exercises
• Pressure massage to arms, legs, back, chest, shoulders and head (for those who can tolerate touch)
• Tell short stories or read to them as they play
• One on one parent-child time…just sitting or lying on the floor on your backs with them, allowing feelings to flow in the room with quiet, non-judgemental atmosphere, using gentle words and supportive observation.
• ABA therapy (research and monitor this method), PT, OT and ST therapy (separate from the ABA facility.) See this link.
• Counselling: helps them understand their unique diagnosis and responses to stimulation. The goal is to increase their self confidence in their individuality and unique self. This enables them to see themselves as part of the diverse group of children in their environments and not as an “outlier.”

Summary:

Children with sensory challenges and disorders have bodies and nervous systems that do not respond, under-respond or desperately over-respond to “normal” contextual language, body language, and voice tone. They perceive things as concrete literal and cannot decipher a “play on words” or receive teasing or joking in a “normal” healthy way. They cannot process the events occurring around them in linear time.

We can often forget that our ASD children are usually desperately trying to “keep up” with and integrate into their surrounding environment. We want to teach them they do not need to “fit in”, but rather learn to accept who they are, understand their needs and progress into verbalizing and protecting those needs.

Because their self image and confidence build upon the way they see others respond to them, as we all do, they often internalize all responses and begin to feel ostracized and isolated even as they appear to be socializing.

The difference for them is that they cannot control the thought processes of their often dismembered inner dialogue and need help understanding that things are not always as they appear to be. To them, what they see…just is… and they do not know how to process, respond or function in a way that is “accepted by their peers” and the adults around them.

Masking shows up to provide an emotional and neurological “cushion” from the noises, movements, other human responses to their ASD behaviours and thought processes.

We can recognize this phenom and implement loving methods to decrease its stress sources occurring in their daily lives.

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