Dear Representative

Dear Representative,

Ethan Edwards' family is having difficulty buying their son’s medically necessary creams and ointments for his rare and severe genetic skin disorder, congenital lamellar ichthyosis. Lamellar ichthyosis is unlike eczema or dry skin. Unfortunately, the North Carolina State Health Plan has denied their request for coverage of these items. We are asking for your help in the hopes that the North Carolina General Assembly would allow these items to be covered in the case of congenital ichthyosis.

These treatments are medically necessary for Ethan and without them his condition will deteriorate quickly. Without treatments, strong possibilities include severe dehydration resulting from increased trandsdermal water loss, decreased ability to move, risk of blindness, and threat of deadly sepsis resulting from cracks in the skin. I am including photographs to help you understand the severity of Ethan’s condition with treatment. His family may soon be unable to continue care due to the financial burden of these uncovered medically necessary treatments.

Over the counter products that are medically necessary in the treatment of Congenital Ichthyosis:

Product Name Month Supply Cost

Puralube 31 tubes 31 x 3.00=93.00

Aquaphor Healing Ointment 8 x 14 oz tubs 8 x 16.74=133.92

Eucerin Ointment 6 x 16 oz tubs 6 x 15.34=92.04

Aquaphor Baby Wash 3 3 x 6.47=19.41

Acid Mantle 3 x 14 oz tubs 3 x 42.27=126.81

Sween 24 8 x 9 oz tube 8 x 12.04=96.32

Sterile Examination Gloves 450 (50/box) 9 x 18.87=169.83

Shipping 40.00 (usually

more/depends on free shipping)

Total per month $771.33

This list of products/amounts will change as Ethan grows and changes.

It will be much cheaper for the North Carolina State Health Plan to cover these items to prevent more expensive health problems that will likely result in long term hospitalizations and increased doctor’s visits. These treatments are also cheaper than prescription alternatives that are not as effective.

Thank you for your time and consideration.

Sincerely,

(Your Name)

Pictures you may add: