Drug treatments for MS can decrease relapses and slow disease progression. But the costs of these treatments are high.
The treatment of multiple sclerosis (MS) typically includes prescription drugs and various forms of rehabilitation, such as physical therapy, speech therapy, and the use of mobility aids.
A study published in 2013 in the Journal of Medical Economics found that the total costs of healthcare for MS ranged from about $8,500 to over $50,000 per year during the period studied (1999 to 2008), with prescription drugs accounting for a large percentage of those costs.
On the bright side, the number of people with MS with private health insurance or coverage under a government program such as Medicare and/or Medicaid appears to be increasing due to changes brought about by the Affordable Care Act of 2014, according to Nicholas LaRocca, PhD, vice president of health care delivery and policy research at the National Multiple Sclerosis Society (NMSS).
But even with insurance, high deductibles and/or co-payments can make paying for healthcare difficult for many individuals with MS, particularly since many people are unable to work because of their disease.
According to Dr. LaRocca, Over the last few years, the prices of the MS disease-modifying drugs have escalated faster than inflation. Most people with MS are able to cover their healthcare expenses, but it is challenging and has led many of them to make compromises, such as skipping doses or taking drug holidays. Other money-saving compromises may include reducing general costs of living or eliminating luxuries such as vacations.
A study published in the journal Neurology in 2015 found that the cost of first-generation, disease-modifying medications for MS increased from between $8,000 to $11,000 annually in the 1990s to approximately $60,000 per year currently. Newer disease-modifying drugs can cost even more.
However, the prices quoted in this study do not take into account possible discounts negotiated by government or private insurance programs, nor do they reflect the lower prices an individual might pay if obtaining a drug through patient assistance programs.
RELATED: Rehab Options for Living with Multiple Sclerosis
The most common ways people with MS pay for treatment in the United States are:
As they can for anyone, life changes such as losing a job, changing jobs, or getting divorced can affect health insurance options and coverage for people with MS.
Barbara, a 69-year-old retired computer programmer/analyst who lives near Denver, describes how MS has affected her financially. I am on disability because I had to retire at 46 and take a 60 percent paycut, she says. That's what the disability payments amount to. I also got a big reduction in assistance with medical insurance as a retiree.
If youre having trouble stretching your budget to pay for needed care, there are resources that can help.
Private insurance companies typically have representatives who can advise people with chronic conditions such as MS on healthcare coverage and costs. If you have health insurance through your job, ask your employer for the contact information of the representative, or contact the insurance company directly to find out whom to talk to.
If you receive care in a clinic that specializes in MS, there will likely be someone on staff, such as a social worker, whos familiar with insurance issues and financial assistance programs.
In addition, here are some links to resources for helping to pay for MS medications and medical care:
HealthCare.gov Since January 1, 2014, people with pre-existing conditions in the United States can no longer be denied health insurance, thanks to the Affordable Care Act. Many formerly uninsured people now have health insurance as a result of this law, and premium subsidies are available to many low- and middle-income people. You can investigate your options and start the enrollment process at HealthCare.gov.
National Multiple Sclerosis SocietyThe NMSS has a team of MS navigators in place to help with questions or concerns about paying for medications. The navigators can assist with changes in insurance coverage for medications, transitioning into a different health plan or Medicare, covering co-payments for medications, and other issues. The NMSS can be contacted online or at 1-800-344-4867.
Pharmaceutical assistance programs Drug companies often have their own patient assistance programs for people who cant afford particular drugs. The NMSS maintains a contact list, including phone numbers, for patient assistance programs for many medications. The Multiple Sclerosis Association of American also maintains a patient assistance program list. If you dont see the medication you need on either of these lists, your healthcare provider or pharmacist may know whom to call.
MedicareThose with Medicare may qualify for help with out-of-pocket costs for prescription drugs through Medicares Rx Extra Help.
National foundationsNeedyMeds maintains a free information website describing programs to help people who cannot afford medications and healthcare costs. Partnership for Prescription Assistance also helps eligible people who cannot afford their medications. And Patient Advocate Foundation's Co-Pay Relief program has a new pharmaceutical assistance program for people with MS who have Medicare, Medicaid, or military benefits.
Social Security Disability Insurance (SSDI)People with MS who cannot work due to MS-related disability may be entitled to SSDI and/or Supplemental Security Income benefits. Information is available at theSocial Security website. Your healthcare provider can help explain whether you may qualify, based on your level of disability.
Local community services There may be local services that can help out with transportation, meals, and other needs. Barbara described her use of local services in Colorado, I have used community support when needed, specifically Project Angel Heart for meals and, through our Denver Metro bus system, Access-A-Ride.
Health centers Federally-funded health centers offer low-cost preventive and primary medical care, with payment dependent on your income.
Hospital or physician patient assistance plans Tom, a 54-year-old Chicago resident living with MS, recommends making a payment plan directly with your physician or hospital if costs or co-pays are a problem. Many major hospitals have their own assistance plans, allowing for reduced costs or payments in installments over time. Tom recommends that people talk and ask, and emphasizes that it is particularly important to arrange payment before a bill goes to collection, at which point reductions are no longer possible.
Struggling with MS symptoms is stressful by itself, and dealing with the costs of healthcare and medications can add to that stress. Fortunately there is some assistance available through foundations, government organizations, patient assistance programs, and local organizations. However, the person with MS or a friend or family member will likely need to be a strong, persistent advocate to obtain the help that is needed.
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Costs of MS Treatment | Everyday Health
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