What Healthcare Issues Do MS Patients Face?

Multiple sclerosis (MS) is a condition that requires a lot of contact with the healthcare system. This includes getting an initial diagnosis, finding the best medications to treat the condition, managing relapses, and getting ongoing therapy to cope with symptoms.

Unfortunately, as with other chronic conditions, people with MS can face barriers to accessing the healthcare they need. This is due to the direct and indirect costs of MS, as well as systemic issues in the healthcare system.

In this article, learn more about the issues that affect access to healthcare for people with MS.

What Issues Affect MS Healthcare Access?

MS healthcare access is impacted by many factors. Read on to learn about issues that impact the accessibility of MS care.

Associated Treatment Costs

MS is a complex disease. Unfortunately, the associated treatment costs can be very high when all factors are considered. Direct costs of MS can include:

• Specialist visits
• Diagnostic tests
• Insurance premiums, deductibles, and copays
• Medications
• Inpatient care
• Outpatient care
• Home health care
• Surgeries
• Long-term or rehabilitative care
• Social services
• Caregivers
• Home modifications
• Assistive devices (such as walkers, canes, or tub chairs)
• Assistive technologies (such as pill dispensers or augmentative and alternative communication)
• Travel costs to access health care

There are also other MS costs related to a loss of income or expense due to MS-related disability. These indirect costs can include:

• Sick or disability leave
• Reduction to working part-time hours
• Early retirement
• Premature death
• Income lost by informal caregivers

Insurance Coverage

Health insurance can help cover a portion of MS-associated expenses. However, coverage varies by plan and can also involve hefty deductibles, premiums, and co-pays. Some people may be uninsured or underinsured, particularly when changing plans.

This can lead to having their medications denied by their insurance carrier or withheld while prior authorizations are completed. All of this can lead to high expenses and poor care, as well as stress and even adverse medical effects for the person with MS.

Patient/Provider Location

People with MS can benefit from seeing a neurologist (a doctor who specializes in brain and nervous system conditions like MS). Depending on where you live, seeing a specialist can sometimes mean having to travel long distances to access care, particularly in rural areas. Access to transportation, taking time off work, and tolerating long journeys can all be barriers to MS care.

Referrals & Provider Knowledge 

Not every healthcare provider is an expert in MS. A primary healthcare provider that lacks knowledge of MS may miss symptoms, leading to a delayed referral to a neurologist. Or, you may be referred to a neurologist or therapist who does not specialize in MS, which can affect diagnosis.

Some providers may not be up to date on the most recent research and advances in MS, which can impact your care. This is why it may be necessary to advocate for yourself. Some MS nonprofits, such as the National MS Society, offer patient advocacy services and lists of approved MS specialists.

MS Relapse Awareness

Another issue that affects access to health care for those with MS is MS relapse, which is a sudden onset of new or worsening symptoms after a lack of symptoms for days or weeks at a time. There are four different types of MS, all of which have different relapse patterns. Your neurologist should educate you on your specific case.

Severe relapses may require intervention to treat the symptoms and keep you safe. Your provider may prescribe short courses of high-dose corticosteroids (anti-inflammatory drugs), recommend a wheelchair, inpatient stay, or increased caregiving assistance while you recover.

Clinical Trial Underrepresentation 

To date, the majority of research on MS and its treatments has been conducted on White people. This is very problematic because not only does MS affect people of various races and ethnicities, there may be different responses to treatment across different racial groups.

A 2022 study found that trials of disease-modifying therapy for MS focused primarily on White participants. Underrepresentation of marginalized groups in MS research means that what we currently know about MS and its treatment may not be representative of everyone with the disease.

Accessibility of Complementary Care 

Complementary and alternative medicine (CAM) is the term used for non-pharmaceutical forms of treatment that are often outside the typical "medical model." There is often minimal research on CAM therapies, yet over 80% of people with MS report using these kinds of treatments.

Examples of CAM methods for MS include:

• Chiropractic therapy
• Massage
• Acupuncture
• Oral cannabis extract (CBD oil)
• Tetrahydrocannabinol (THC)
• Sativex (CBD plus THC) mouth spray
• Magnetic therapy
• Reflexology
• Cupping
• Yoga
• Vitamins or supplements (such as ginkgo biloba)
• Meditation

Insurance often does not cover the cost of these treatments, which makes them difficult and expensive to access.

It's worth looking into your health insurance options to see if you have a health savings account or flexible spending account that might contribute to certain CAM treatments or reduce taxes. Some insurance plans, including Medicare Advantage, also offer wellness programs that may cover massage therapy, acupuncture, and/or chiropractor visits.

Another option is to reach out to MS nonprofits and organizations in your area or online. They may be able to connect you to grants or support for accessing CAM.

Ways to Afford MS Medication and Care

MS care and the prescribed medications can be extremely expensive. In the United States, the cost of DMTs to treat MS is five to seven times higher than typical prescription drug inflation. This cost is often two to three times higher than the cost for the same medication in other countries.

If you are having trouble paying for MS medications or care, talk to your healthcare provider. They may be able to provide sample packs or a payment plan.

Many MS medication brands also offer discount savings cards or patient assistance programs to help reduce the cost. Ocrevus (ocrelizumab) is a common MS DMT medication known for how expensive it is. Through various savings programs, some patients can receive the medication for free or low-cost.

You can also reach out to MS organizations for help with financial assistance, either directly or through referral to various programs. NeedyMeds is a nonprofit that can help with access to medication.

Some people also choose to enroll in a clinical trial, which can provide access to cutting-edge treatments that are otherwise not available.

Symptom Tracking and Other MS Support

Tracking symptoms of MS is beneficial for many reasons. It helps identify a relapse, as well as any responses to treatment or various environmental or lifestyle triggers. The National MS Society offers pamphlets for tracking medications and supplements and another pamphlet for tracking symptoms.

By monitoring your MS symptoms, you help your healthcare provider treat your MS. They will be able to monitor the status and progression of your MS and better assist you with recommending appropriate treatments and therapies. This can also serve as a way to justify to insurance companies that you could benefit from (or are benefiting from) certain treatments or assistive devices.

Summary

MS is an autoimmune neurological disease that, for many people, becomes disabling. Due to the complexity of MS and the many flaws within the health and social care systems, it can be difficult to access care, treatment, social services, and more. Some of these barriers to care include high costs, lack of insurance, proximity to care options, and access to specialists. However, there are still ways to better afford and access MS treatment and care.

A Word From Verywell 

While it's possible to overcome healthcare barriers to MS treatment, it can still be difficult to access quality care. Further, the responsibility should not have to lie solely on the patient. The healthcare system is flawed, and it can be frustrating to face these barriers alongside the challenges of living with MS. If you are struggling to access MS care, reach out to your healthcare provider or an MS nonprofit for support and guidance.