Receiving a diagnosis of neuromyelitis optica spectrum disorder (NMO) may be very overwhelming. NMO causes more than physical symptoms. On a personal level, NMO can have a deep impact on your finances and wealth. The out-of-pocket costs for medical treatment, drugs, and therapies all add up.
One study found that the average cost per year for someone with NMO is nearly $61,000, compared to nearly $9,000 for those without NMO.1
On a larger scale, rare diseases can also affect the overall economy. Job losses or decreased work productivity, increased costs, and increased use of the healthcare system are just a few ways.2
According to the 2019 National Economic Burden of Rare Disease Study, the total cost of rare diseases to the U.S. economy in 2019 was $966 billion.2
It is hard to pinpoint the costs related to NMO and other rare diseases. This varies from person to person and includes much more than the physical and financial burdens. Our hope is to shed light on the overall, far-reaching impact rare diseases have on people and the economy as a whole.
Personal costs of NMO
For you and for those who love you, NMO is personal. NMO can lead to problems with walking, movement, and bladder and bowel control. Pain and living with the unknowns of the disease are far-reaching. Your mental and emotional health can take a hit as well.3
Orphan drugs
Some of the drugs used to treat NMO are known as orphan drugs. These drugs are developed under a government act because they treat a rare disorder. Some people who take these drugs to treat rare conditions like NMO spend thousands of dollars per year on them.4,5
Over the years, the out-of-pocket costs for orphan drugs have skyrocketed. In fact, a 2019 report by America’s Health Insurance Plans (AHIP) shows that orphan drugs cost 25 times more than traditional drugs – an astonishing 26-fold increase in 2 decades.6
This can end up costing families tens of thousands of dollars per year for those who depend on these drugs. Even with medical insurance, co-payments for orphan drugs can overwhelm most household budgets.6
Medical costs related to NMO can add up quickly. From insurance premiums and co-pays to larger costs, these all impact your wallet. Some of these medical costs may include:7
- Visits to your doctor
- Insurance
- Drug costs
- Surgical costs, if needed
This is hard under normal circumstances, but when times are tough with the economy, this may seem nearly impossible to manage. Studies have shown that those with rare diseases have more medical needs, miss more work, retire early, and often eventually need a caregiver.
Plus, it is likely that other conditions may occur at the same time as NMO. This is what doctors call a comorbid condition. Having comorbid conditions along with NMO will make treatment more expensive because you will be treating more than one condition.
Additional treatments, therapies, and accommodations
Managing NMO involves more than medical treatments and therapies. Those with NMO may need to make major lifestyle changes. Some of these may include:1,3,7
- Caregiver salaries
- Home renovations for accessibility
- Mobility devices
- Devices to help with daily living
All of these changes require adjustments in your budget, some more than others. These all add to the financial burden of NMO.
The larger economic impact of rare diseases
The costs due to NMO do not simply impact those with the disease. People with rare diseases use emergency medical services and are hospitalized more often than those without rare diseases. Costs associated with hospital stays are higher for those with rare diseases than for those with common conditions. The length of hospital stays is also longer for those with rare diseases, and the costs at discharge are much higher than for those with common diseases.7
Rare diseases like NMO complicate the economic burden on the workforce as well. In 2019, absenteeism from work cost the U.S. economy nearly $150 billion. Early, forced retirement accounted for more than $135 billion.2
The rare disease burden to families and society as a whole is hard to adequately describe. Immediate attention from lawmakers, researchers, doctors, and key stakeholders is needed to find new ways to make treatment for rare diseases accessible and affordable for all.2
Those with NMO and the rare disease community as a whole have large unmet needs with great impact to society as a whole. Advances in research are urgently needed to find treatment and, hopefully, a cure at some point.2