New treatment provides new hope to minimize the effects of multiple sclerosis (MS) for patients in the United States. However, after over a decade of disease modifying drugs (DMDs) available in the market for multiple sclerosis patients, the costs are still too much for many.
MS is a chronic, degenerative, autoimmune disease and thus patients have to seek medication or other options to regain control of their life. Because it affects the nervous system, brain and spinal cord, many of the body’s motor functions and cognitive functions are also affected.
This causes many problems for the patients and other than lifestyle changes. Almost all of these problems come with a price, making it more financially difficult for families with a loved with MS. As a result, MS tends to be a very expensive disease from therapies, drugs, to the possibility of not being able to earn money.
Effects of Multiple Sclerosis for patients
There are many effects of multiple sclerosis that patients experience throughout their lives. These impacts are not only financial issues but include social and physical problems.
Physical Impact due to MS
When we review what does multiple sclerosis do, we need to firstly assess the physical effects MS causes. MS affects the nervous system and patients suffer from problems with memory, dizziness, vertigo. Vision and hearing senses are also impaired are generally how patients first get diagnosed with MS. Speaking, swallowing are breathing are also problematic with patients and often times there is slurred speech, loss of volume control, breathing difficulties and swallowing problems.
Since MS causes fatigue and damage to muscles, along with the aforementioned symptoms, problems with their limbs is another common symptom. There is often tingling, numbness, or pain in the arms and legs. Muscle weakness, pain, and muscle coordination are also experienced. Muscles of the bowels and bladder also suffer from weakness and thus these functions may also be affected. Most of all, the immune system is affected when it starts to destroy the body’s own healthy nerve and myelin tissue.
As the immune system is weakened and compromised by MS, many patients may also experience symptoms including frequent urinary tract infections and other immunity-related complications. Fractures are also more common in MS patients due to lack of coordination between the skeletal muscles. Choking, inflammation, and throat infections may arise due to problems with swallowing etc.
Social and Lifestyle Impact due to MS
Due to the devastating and overwhelming complications to the whole body, MS patients find it difficult to maintain relationships, jobs and a social life. As a result, the effects of multiple sclerosis goes beyond the physical impact. Many find there is an inability to socialize, which often results in depression and further isolation from others. This leaves the patient resorting to medication that merely suppresses symptoms, and due to the lofty healthcare prices, patients are also faced with colossal bills and credit card debt.
Relationships all around the MS patient get affected whether it is family, partner, friends etc. Even the caregiver faces guilt every time there is a choice between doing something for themselves or showing support for the patient and the mounting bills. Dealing with the emotional ups and downs is a challenge for those around the MS patient and shall be dealt with calmness and understanding.
For the patient, the symptoms are real, the pain is real and the fatigue is real, however, family and friends may not be able to be supportive everyday and this can result in conflicts. Most of all, other than seeking understanding, the patient experiences anger and frustration because they cannot be a part of the same lifestyle they were living. Compromising the quality of life for people around them is often a very difficult thing to come to terms with for an MS patient.
Dealing with Loss of Income due to MS
MS affects the motor and cognitive functions of the body, is progressively degenerative and can result in alarming emotional distress. After a diagnosis of MS, the disease progression many times forces the patient to switch from a full-time job to part-time and then maybe to not work.
Dealing with the pain and debilitating symptoms, along with attacks and relapses, working is often times not an option for MS patients. This change becomes very stressful as patients succumb to symptoms and cannot get away from it mentally being at home. Plus the loss of income becomes even more overbearing for the rising costs in MS medication.
MS Drug and Treatment Costs
Even with newer drugs arriving in the market, older drugs are still experiencing a rise in price. Almost 5-7% rise has rendered patients helpless and in debt because there is no drug available for below $50,000 a year for MS and generally cost between $50,000- $65,000 per year.
Surprisingly, the US is the highest market for MS drugs when compared to other nations like UK, Australia, and Canada. In the last 2 decades, these drugs have seen a rise of a shocking 700%! To add to this, these drugs are just receiving their patents therefore, there are no generics available and won’t be available for the next 2 decades at least. Here is a list of the most well-known and commonly used drugs for MS patients and the annual costs in 2015 found from this government study entitled ‘The cost of multiple sclerosis drugs in the US and the pharmaceutical industry: Too big to fail?‘:
Interferon-β-1b (Interferon-β-1b is marketed as Betaseron by Bayer and Extavia by Novartis.) $61,529 231.0%
Interferon-β-1a IM (Avonex) $62,394
Glatiramer acetate (Copaxone) $59,158
Interferon-β-1a SC (Rebif) $66,394
Natalizumab (Tysabri) $64,233
Interferon-β-1b (Extavia) $51,427
Fingolimod (Gilenya) $63,806
Teriflunomide (Aubagio) $57,553
Dimethyl fumarate (Tecfidera) $63,315
Increase in Health Insurance Costs due to MS
The United States Healthcare may boast of advanced medical technology, however getting health insurance in the US is a challenge, to say the last. For those working regular and full-time jobs, it may not be so difficult being covered under the group corporate policy.
Each state mandates its own insurance regulations and often times, patients with preexisting conditions have to pay hefty costs or are denied affordable healthcare. When MS patients lose their jobs, searching for individual coverage often results in battles between the pharmacies and the insurance companies.
There are additional out-of-pocket costs like co-pay and other loopholes in the health insurance policy which is bared by the patient. Patients can often go to MS societies for help where they advocate for insurance rights as well as carry a lot of helpful information and tips on how to get individual insurance and what the best policies may be. These organizations may also assist in minimizing the effects of multiple sclerosis or at least give further information on what does multiple sclerosis do and how to live with MS.
1) Multiple Sclerosis Patients Stressed Out By Soaring Drug Costs: http://www.npr.org/sections/health-shots/2015/05/25/408021704/multiple-sclerosis-patients-stressed-out-by-soaring-drug-costs
2) How Much Would You Pay for an Old Drug? If You Have MS, a Fortune: http://www.bloomberg.com/news/articles/2015-04-24/health-the-price-of-multiple-sclerosis-drugs-only-goes-up
3) Should Multiple Sclerosis Drugs Cost $62,000 a Year?: http://www.healthline.com/health-news/ms-why-are-ms-drug-prices-so-high-071913#1
4) The Financial Reality of Multiple Sclerosis: http://www.msfocus.org/article-details.aspx?articleID=354
5) Prices of MS Drugs Soaring, Study Finds: http://www.webmd.com/multiple-sclerosis/news/20150424/prices-of-ms-drugs-soaring-study-finds
6) Multiple Sclerosis From TOP to BOTTOM Getting the Complete Picture: http://www.healthline.com/health/multiple-sclerosis/effects-on-the-body#sthash.gplXV6FL.dpuf
7) Family Life: http://www.msif.org/living-with-ms/family-life/