Due to late diagnosis and treatment, Pompe disease has affected Chloe’s skeletal muscles causing her to be in the state of hypotonia. Thus, Chloe required more medical support and intervention as compared to other children.
In term of her medical needs, apart from the expensive enzyme replacement therapy, she requires other interventions in order to have quality of life. We are glad our government aims to make healthcare affordable in Singapore, but there are still a lot to be done. If we take a holistic approach in having first world healthcare, we will need to address the cost of medical equipment and post hospitalisation treatment. We have listed out some of the equipment and therapies, with indications of the cost for each item. We are shocked to find out that the same equipment (eg. ventilator and nasal mask) cost only 50% from what we are paying locally.
Below are list of equipment Chloe is currently using at home and the cost of each
Respironic Trilogy Ventilator @ S$12, 500.00
Cough assist @ S$5,500.00,
Suction pump @ S$690.00,
Oximeter @ S$3,000.00,
Humidifier for Bipap @ S$480.00,
Oxygen concentrator @ S$1,500.00
Oxygen cylinder @ S$350.00 (S$35.00 per refill), nasal mask @ S$250.00 (replace in 9months), BV filter @ S$5.00 (replace weekly), glove @ S$6.00/box, Suction connecting tube @ S$2.00 (replace weekly), suction catheter @ S$0.50 (replace daily), inhaler chamber @ S$45.00, disposable O2 sensor @ S$25.00 (replace when necessary), ventilator tubing @ S$16.00 (replace when necessary)
Feeding button @S$140.00 (replace in 9-12months), feeding tube @ S$25.00 (replace in 3months), syringe @ S$1.50 (replace weekly), button pad @ S$7.00, gauze @ S$0.50/pack, sterile water @ S$0.40/each, stoma powder @ S$ 12.00, cotton stick and cream ($ N/A)
Medications and therapies:
Long term medicines for Chloe consists of the following:
Myozyme, Domperidone, Captopril, Zyrtec , Flixotide inhaler, Salbutamol inhaler and Fluimucil.
The cost of the medications added up to more than $18,000 a month. We are glad that the cost of the main drug, Myozyme, is currently been taken care by several parties. However, there is no permanent solution as to how this treatment will be reimbursed. In order to ensure Chloe has quality of life, we are giving her intensive therapies to keep her muscles flexible and strong. There are equipment that we have at home for her to do her routine too.
Cuddlebug @ S$4,800.00, supine stander @ S$3,600.00, trunk support suit @ S$380.00, AFO S$480.00, hand splint @ S$130.00, medicine ball ($N/A)
Every week Chloe attends different therapies starting with speech & language therapy, occupational therapy, physio therapy to swallowing clinic. All the therapies added up to several thousand dollars a year.
Chloe is currently getting full milk feeding and we are also unable to toilet-train her. So in order to keep our cost low, we are traveling over to Malaysia to purchase items like formula milk, diaper, baby wipe,bottle cleanser, laundry detergent etc. All in all, we could save up to 20%-30% as compared to buying from local supermarkets. We like to encourage companies producing/distributing children’s products to offer their help and support to us. If possible, we hope there is a CSR (Corporate Social Responsibility) program to help all families living with special needs children.