Lucy Beall discusses the expenses of living with her terminal illness, and interviews others who share condition to understand the scope of these costs.
Keeping myself alive is very expensive.
In a week, depending on the current status of my skin, I would need up to six different wound care products. On a less ideal day, my condition wreaks havoc across my body. The lack of collagen seven (the connecting fibril that anchors your top layer of skin to your bottom layer of skin) means my body struggles to heal even the smallest blister. As a result, these blisters will flourish into open wounds that may take up the majority of my knees, ankles, elbows or thighs. A plaster in this situation is not only irrelevant but dangerous- the adhesive causes further damage to the healthy skin.
So, I, along with other suffers of EB or burn patients, must adopt a crucial regime in order to heal these areas: first, antibacterial ointment as our immune systems will be compromised, then a contact layer often made of silver or a thin and breathable membrane called Mepitel, followed by a protective layer that cushions any friction to prevent unnecessary pain, and finally classic white medical gauze to secure all of this in place or further protect healthy skin. Depending on the severity of the individual this is a process that may take hours and require numerous different items ranging in sizes and functions.
The process is repeated every day to promote healing as well as to protect against infection. I am very lucky in that I do not require bandages every day, only as needed, but that is not the case for most individuals with the same subtype of our condition. Without proper dressings, infections may spread and have serious consequences for the sufferer. Since the wounds mean a compromised immune system, even a simple infection could lead to death.
Luckily, the NHS in the UK will provide these wound care items. However, in other countries, such as my home country of the United States, getting these items that are necessary to life comes at ridiculous costs. I spoke with Eileen, a mother of a toddler with my subtype of EB, Michelle, a woman who works in New York city, also sharing my subtype, and Ariana, a university student and friend who, again, has the same subtype as I do.
There is no cure for EB, so the most important treatment is wound care and prevention. This can be covered by insurance, as it is in Ariana’s case, but for others there are still charges. Eileen recently received a charge from her insurance provider from the time her son was seven months old. For the dressings used to keep him alive for seven months, she is expected to pay $100,000 dollars. The implications of this are terrifying to a mother, or sufferer: if we cannot pay the charge, will the company stop providing us with the products necessary to sustain our lives? This price is not including the anti-bacterial ointments and other creams needed to promote healing.
Michelle explained that these items are viewed as “non-necessities” by the insurance companies and so we must pay out of pocket. A single tube of bactroban antibacterial gel costs between $3-6, and a single tube or more may be used per dressing change. Lotion is needed to prevent further cracking of dry skin. Bleach or Hibiclens must be added to baths in order to prevent infection and is also not covered by insurance. Stronger ointments may be covered, but this is dangerous. The body becomes used to these gels and builds up a resistance. If there is a stronger infection, it would then be more difficult to treat as it would already be “used” to these methods. The cost of one bandage change is an upwards of twenty dollars a day.
Nutrition is also seen as a non-necessity. Our special calorie-rich diets must be paid for out of pocket in America. Often we’d consume three special calorie dense supplement drinks on top of our daily nutrition. A twelve pack of this costs $20 dollars, and if we drink three a day, would only last for four days.
The costs continue to rise whenever you consider the cost of independence. An unfortunate process of EB is overactive scar tissue, which causes our fingers and toes to eventually web without surgical intervention. As a result of this, some EB patients require modifications to their homes and vehicles in order to maintain their independence. Ariana stresses that this is the most expensive aspect of her condition, especially now that she is driving and working towards her independence. Again, these are seen by insurance companies as a non-necessity and must be paid for out of pocket. These adaptions may cost thousands of dollars. Independence for most people is an unquestionable human right, but for those with disabilities it unfortunately comes with a high cost.
While it is wonderful to focus on the positive aspects of our lives with disabilities, it is also necessary to discuss the negative as it provides further awareness of the situations that we encounter daily. Until more people are aware of these struggles, there will be no change, and we must continue to live lives we cannot afford.
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