How much does SMA cost?

Below are the various expenses related to the management of spinal muscular atrophy (SMA), which can greatly strain a family’s finances.

Healthcare

As SMA involves progressive weakness of the body’s muscles, many medical specialists and allied health professionals can be involved in the care of a person with SMA (PWSMA). These include:

Paediatrician
Geneticist
Neurologist
Respiratory physician
Orthopaedic surgeon

Gastroenterologist
Physiotherapist
Occupational therapist
Nutritionist/Dietitian
Speech therapist

There are currently three drugs that can treat SMA: nusinersen (Spinraza), onasemnogene abeparvovec-xioi (Zolgensma) and risdiplam (Evrysdi).

While basic healthcare services & supportive medications can be obtained at minimal cost in government hospitals, most of these do not include full SMA care. Effective treatments & devices have yet to be approved locally. Coupled with the long waiting periods & scarcity of healthcare professionals, PWSMA and their caregivers may be driven to seek private services.

Equipment

PWSMA often require crucial equipment to help manage their symptoms that are neither provided for by the government hospitals nor covered by medical insurance, and must be paid for out of pocket. These include:

Cough assist devices
Non-invasive ventilation, e.g. CPAP and BiPAP
Suction devices
Orthotics

Mobility devices, e.g. powered wheelchair
Nutritional supplements
Home renovation, e.g. to fit wheelchairs

Other Expenses

Obtaining and paying for a domestic helper (usually foreign workers), especially for independent adult PWSMAs.
Travel and accommodation while obtaining healthcare services only available far from the PWSMA’s home.

(Note: This might also entail loss of income for PWSMAs or caregivers paid by job or time.)

Couples who are both carriers of the mutated SMN1 gene that can result in SMA may also wish to undergo:

Prenatal diagnosis (to determine if their fetus has SMA)
Pre-implantation genetic diagnosis (to determine if their embryo – formed through assisted reproductive technology – has SMA)

Each of these procedures has to be paid out of pocket by the couple.

Policy Recommendations

Subsidise the drugs that can treat SMA if and when they are approved in Malaysia.
Implement a systemic approach to preventing and diagnosing SMA at a population level, i.e. prenatal diagnosis, newborn screening and pre-implantation genetic diagnosis.
Remove taxes on imported medical equipment essential for the management of SMA.
Prohibit genetic discrimination by insurance companies.
Create a respite care programme for caregivers of PWSMA.

*None of them are currently available on the market in Malaysia.

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