The Cost of MS Study

December 17, 2019 | Advocacy, Education, Funding, Research, Uncategorised

New Zealanders with multiple sclerosis (MS) face undue restrictions to life-altering drug treatments and valuable social supports. The cost and consequences of this lack of access are enormous.

We believe this needs to change. New Zealanders with MS need better access to these critical treatments and supports.

For example, studies show that the speed of access to disease-modifying drugs for MS can dictate the extent of a person’s disability, their future employability and the support-cost of a diagnosis on their family and communities. Likewise, we believe the provision for flexible work practices might reduce benefit payments and allow people with MS to work for long.

However, New Zealanders with MS must contend with the consequences of slow and easily-interrupted access to critical drugs and a welfare system that does not adequately address the needs of people with chronic health conditions. We do not think this is good enough.

There is no current or up-to-date research on the economic toll that a diagnosis of MS takes on individuals, families and communities in New Zealand. As a result, government agencies make funding decisions based on insufficient information. To remedy this, we are launching the Cost of MS Study.

The Cost of MS Study will provide the real-life data we need to advocate for more resources and better treatments in NZ. We believe that this study will provide the government with the data they need to make informed decisions about access to MS medications and supports.

But we need your help to make it possible. Your support takes us a step closer to securing the supports that New Zealanders with MS need. Please donate today.

The current economic model

A diagnosis of multiple sclerosis places a significant health burden on an individual, their family and carers, and the public health system. According to international research, this health burden comes with substantial costs.

Relapses, worsening MS symptoms and disease progression generate multifactorial financial costs.

Direct costs: People with MS require increased support from healthcare professionals. These expenses include the costs of GP visits, pharmaceutical costs, in-patient and out-patient costs, social welfare payments and home assistance funding. Over 30% were receiving a Disability Benefit, compared with 3% of the NZ population

Indirect costs: The loss of income and career is one of the most common indirect costs of MS. The 2006 MS Prevalence Study, funded by MSNZ, reported that within four years of diagnosis:

• • 54.6% of people were no longer working as a direct result of their MS.
  • 67% of people with MS had changed their work status due to the effects of MS.
  • The median annual personal income was NZ$20,000, compared with NZ$34,750 for the general NZ population.

Similarly, many family members will become full or part-time carers. To do this, they must also reduce or withdraw from paid employment.

Researchers in Europe, Norway and the UK, Germany and France, have attempted to quantify these costs in their contexts. Within their communities, they believe the annual expense of MS ranges from NZ$12,000  for people with minimal disability in France, to an average yearly cost of NZ$143,000 per person with MS in Norway. In 2015, MS Ireland reported that MS costs the country an average of NZ$79,500 per person, per year.

Pharmac’s model estimates the cost of MS to be between $2,700-$29,500 per person per year, depending on the disability. We believe this estimation is grossly inadequate as a measure upon which to decide the accessibility and efficacy of treatments.

We are alarmed by this and believe you should be too.

When it comes to supporting people with MS, the current economic model does not (nor can it) sensibly guide government decision-making processes. That’s why we need to set the record straight with the Cost of MS Study.

Establishing the real cost of MS in New Zealand

MSNZ’s Cost of MS Study will measure the economic impact of MS in New Zealand on the person diagnosed, their families and carers, the government and society.

The study will consider the direct and indirect costs of MS, quantifying the:

• • Health burden of MS on the individual.
  • Economic cost of MS on the individual, their families and community. This category includes financial and out-of-pocket expenses, the cost of lost productivity, loss of jobs and income for those affected by MS and their families
  • Impact on the health system and other government services. For example, we will consider GP visits and pharmaceutical costs, in-patient and out-patient costs, social welfare payments, and home assistance funding.

Where possible, the Cost of MS Study will attempt to specify expenses according to the stages of the disease and the personal circumstances of individuals.

Armed with this data, we will advocate for more resources, better access to treatments and broader support for people affected by MS in New Zealand. We also believe that the results of this study will provide the government and policy-makers with a valuable tool, aiding them in their decision-making processes.

Above all, we hope the Cost of MS Study will eventually enable people with MS to enjoy a higher quality of life, for longer.

All funds raised will go toward our advocacy programmes. These programmes aim to improve the quality of life for people diagnosed with MS, reducing the burden of the condition on all those impacted, including carers and families. Please support the Cost of MS Project today.