The chronic nature of Sickle Cell Disease and its impact on various organs can certainly drain money from one’s pocket or bank account over time.
Since SCD affects multiple organs, the financial burden is multi-faceted, often creating a cycle of unpredictable and difficult-to-control expenses.
These ongoing costs can deplete financial resources, making recovery challenging, especially as the disease’s complications worsen over time.
Here are some ways SCD can strain financial resources:
Frequent medical visits and hospitalisations:
Patients with SCD often experience painful vaso-occlusive crises that require hospitalisation, leading to substantial medical bills. Each pain crisis, infection, or organ complication can result in emergency room visits or hospital admissions.
For example, when dealing with a complication such as a leg ulcer, frequent hospital visits for wound dressing may be required, often involving specialist nurses twice a week—each visit incurring additional costs. Even with insurance, co-pays and deductibles accumulate rapidly, posing a significant financial strain, especially for those uninsured or underinsured.
Ongoing specialist care:
People living with SCD often require consultations with multiple specialists, including haematologists, cardiologists, nephrologists, pulmonologists, and pain management teams.
Each visit involves consultation fees, follow-up appointments, and other potential expenses.
Cost of managing SCD can be overwhelming as it includes:
Blood transfusions: Regular blood transfusions are often necessary to manage symptoms and prevent complications. These treatments can be particularly expensive when needed frequently, such as every few weeks or months.
Medications: Many individuals with SCD require long-term medications like hydroxyurea, pain management drugs, supplements, and antibiotics to prevent infections. Some medications can be costly, especially when not fully covered by insurance.
Advanced treatments: Pursuing cutting-edge treatments like gene therapy or bone marrow transplants can incur staggering upfront and long-term costs.
Organ damage and long-term complications: Over time, SCD can cause damage to vital organs such as the heart, lungs, kidneys, and liver. Treating these complications often requires expensive diagnostic tests, procedures, surgeries, and long-term care. For example, dialysis for kidney failure or treatments for heart disease can be both costly and ongoing.
Reduced ability to work:
SCD can significantly impact an individual’s capacity to maintain steady employment due to frequent pain crises, fatigue, and other complications. This often results in:
Lost wages and employment challenges: Frequent absences from work due to pain crises, hospitalisations, or medical appointments can result in lost income and job insecurity, particularly for those without flexible or supportive employers. Some may have to leave their jobs entirely, relying on disability benefits that often fall short of covering living expenses.
Part-time or low-paying jobs: Due to the physical demands of SCD, some individuals may only manage part-time work, often resulting in lower-paying jobs with fewer benefits.
Caregiving impact: Caregiving responsibilities for a child or family member with SCD can also affect household income, as caregivers may need to reduce their working hours or stop working entirely.
Rehabilitation and therapy:
Many people with SCD require physical therapy, occupational therapy, or mental health support, especially when dealing with chronic pain or disability. These services, particularly when needed long-term, can further strain financial resources.
Travel costs:
When specialised care is only available in certain cities or hospitals, travel expenses such as fuel, lodging, and meals during treatment add to the financial burden. This is particularly challenging for those living in rural areas with limited access to quality healthcare.
Insurance premiums and coverage gaps:
While insurance can help, high premiums, copays, and coverage gaps often leave patients with significant out-of-pocket expenses. Many people find their insurance does not fully cover treatments, especially experimental therapies or less common procedures.
Home modifications and assistance:
As SCD progresses, some individuals may require home health aides, modifications to their living space (e.g., ramps, specialised equipment), or transportation support such as taxis for medical visits. These expenses, often not covered by insurance, can become substantial over time.
Financial impact on families and caregivers:
SCD can strain the financial stability of families, especially those directly involved in caregiving. Whether due to lost income from taking time off work to care for a loved one or the costs associated with treatments and medications, caregiving often imposes a significant financial toll.
Coping mechanisms:
To manage these financial challenges, some individuals rely on a combination of health insurance, government assistance, disability benefits, and charitable organisations offering grants and financial aid. However, many still face significant coverage gaps, leading to ongoing financial stress.
The financial strain caused by Sickle Cell Disease mirrors its physical toll on the body. Without stronger systemic support, the persistent “leakage” from personal finances will continue to be a harsh reality for many.
People living with SCD face numerous financial challenges due to the chronic nature of the disease, its complications, and the long-term care required. These challenges can severely impact their ability to work, access adequate medical care, and maintain financial stability.
Notably, in many African countries, individuals with SCD face all the financial hardships mentioned above, often with no financial support from the government to manage the condition.
Until next time.
If you would like to get in touch with me about Sickle cell, do so, via my email address; [email protected]. And do check out my blog: https://www.dailylivingwithsicklecell.com/ My book on Sickle Cell – HOW TO LIVE WITH SICKLE CELL and my other books are available for purchase on www.amazon.com.