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:

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:

Other Expenses

(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:

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

Policy Recommendations

There is no cure for SMA, but there are therapies to slow the progression of the disease and relieve some of the symptoms.

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.