Covering the Cost of MS: How to Find Financial Assistance
As with many chronic conditions, it’s expensive to manage multiple sclerosis (MS). A recent study from the National Multiple Sclerosis Society (NMSS) found that the average cost of living for someone with MS is $88,487 per year.
A large part of that equation is MS treatment. Currently, more than 20 different disease-modifying therapies (DMTs) are used to treat the disease, and without insurance coverage, these medications can have an out-of-pocket cost of anywhere between $60,000 and $100,000 a year.
At least two-thirds of those living with MS are on those drugs, says Cherie Binns, a registered nurse and patient healthcare liaison with the Multiple Sclerosis Foundation. In addition to DMTs, many people with MS also take other drugs to help manage symptoms, control flares, and treat complications.
Prescription coverage through private health insurance often covers the majority of drugs’ costs, leaving you responsible for a much smaller copay. However, if you’re covered by Medicare, you may need more assistance with covering the cost of your prescriptions.
Meanwhile, medication is just one of the high costs of living with MS, Binns says. Other common MS-related expenses include:
- Regular visits with your neurologist
- MRIs and lab tests
- Occupational and physical therapy
- Assistive devices and home modifications
If your condition leaves you unable to work, you may also need assistance paying for essentials, such as your utility bills, rent, or mortgage.
The good news: Financial help may be available. Not all assistance programs are specific to MS, Binns says; some offer help for any chronic medical condition. You just need to know what you’re looking for and how to apply. Here’s how to get started.
Team Up with an Advocate
The NMSS can help you find an MS Navigator, a person who can, as the job title suggests, help you navigate the medical and insurance systems and look for programs that can help you cover medical and health-related costs, says Dena Feingold, co-director of the Alliance of Professional Health Advocates (APHA). APHA also offers a free directory of navigators, advocates, and care managers at AdvoConnection.com.
Another option, says Traci Paxton, a licensed social worker at the OhioHealth Multiple Sclerosis Clinic in Columbus, is to connect with a social worker or financial advocate at the clinic where you receive MS care.
Financial Assistance for MS Treatment
If the high cost of MS drugs is an issue, there are a few different types of assistance programs you may be able to use.
Patient Assistance from Pharma Companies
“I have found that pharmaceutical companies [who manufacture drugs] that treat diseases such as MS have caseworkers who can assist people with drug access,” Feingold says. Some even offer secondary insurance, she says.
The secondary insurance can help with copays, deductibles, and costs related to care until you have met your deductible. This can be very helpful, Feingold notes, but it’s important to note two things: “These secondary insurance funds usually top out, and each drug company sets its own limits,” she says.
The NMSS offers a comprehensive list of patient assistance programs for each MS drug. You might also ask your doctor’s office for help communicating with the drug companies—some have designated liaisons who can contact the companies directly to see whether you qualify for assistance.
However, this assistance may not be available to people covered by Medicare, as U.S. law prohibits those on Medicare from using discount coupons distributed by drug manufacturers.
The PAN Foundation
The Patient Access Network (PAN) Foundation is a national organization that offers assistance with out-of-pocket healthcare costs associated with a variety of conditions, including MS. This program is only available for people covered by Medicare.
To qualify for funding, you must fill out an application, which can be done online. Be aware that the application process closes when funds run out. (If this happens, you can ask to be put on a waitlist.)
To get in before the funds have been allocated, Feingold suggests applying as soon as the application process becomes available, which is usually at the beginning of each year—and sometimes not until February or even March. “Keep checking to see when it opens up,” she urges. “It always helps to call and find out what stage the funding is in.” You can call the PAN Foundation at 866-316-7263.
The Assistance Fund
This independent organization helps people with MS and their families who have high out-of-pocket medical expenses by providing financial assistance for copayments, deductibles, coinsurance, and other health-related costs. “This is another fund that covers copay assistance and is also accepting waitlist patients,” Feingold says.
The Assistance Fund does have certain eligibility requirements. You must be:
- A U.S. citizen or permanent resident
- Diagnosed with the disease for which you are applying (such as MS)
- Prescribed an FDA-approved treatment for the disease
- Have prescription coverage for the prescribed treatment
- Meet financial eligibility criteria, which is based on household income and size
You can apply online or connect with the Assistance Fund by calling 877-245-4412.
Note that waitlist applications expire at the end of each calendar year. So if funding hasn’t come through for you by that point and you’re still interested in assistance, you must sign up again.
Exploring Medication Options
You can also talk to your doctor to see whether there’s another type of medicine that may be effective for you that won’t cost you as much.
For example, infusions of medication administered at an infusion center tend to be fully covered by insurance, including Medicare, whereas self-administered medications are not, Binns says.
“A lot of doctors have stopped prescribing self-administered medications and instead put people on infusions that are given in an infusion center,” she adds.
Pharmacy Discounts and Programs
Local charity programs may be available to meet your financial needs. Paxton suggests looking into programs such as:
GoodRx, for example, is a discount program often utilized by people without health insurance, or by people who have deductibles that have not been met and copays that are too high, Paxton says.
These programs may also be able to help cover the cost of other medications you take besides DMTs.
Financial Assistance for MS-Related Living Expenses
If you need help paying for expenses related to living with MS, consider contacting the MS Foundation. “We have a program that, in an emergency, will help cover one month’s rent or one month’s utility bills,” Binns says. Apply for emergency funding at MSFocus.org.
It may also be worth contacting your state and county Department of Health and Human Services or the Department of Social Services. Search online for the best number to call, or ask at your doctor’s office.
These organizations may also be able to provide help with general expenses:
Financial Help for Assistive Devices
If you need help paying for assistive devices or home modifications, check out these resources:
- The MS Foundation: As it does for utility bills and rent, the MS Foundation has a grant program to help with purchasing a wheelchair or other needed assistive devices. Income-eligible people with MS may qualify for grants of up to $1,000. Binns says that staff representatives can sometimes “cobble some grants and things together for patients and get them as much money as they’re eligible for.” You can apply at MSFocus.org for help with funding your assistive device.
- The National MS Society: MS Navigators may be able to help you find resources in your community to help pay for durable medical equipment.
- Habitat for Humanity: Your local Habitat for Humanity may be able to connect you with someone to help install devices such as grab bars in the bathroom. “In most cases, you buy the materials, and they supply the volunteers to install them,” Binns says. If you can’t afford the materials, the NMSS may be able to help with that, too, she adds.
Insurance does not typically pay for home modifications, but may cover medical equipment, Paxton says. “Exceptions to that may be if the person is enrolled in a Medicaid waiver program.”
These organizations also may be able to help you find the financial assistance you need:
- Multiple Sclerosis Association of America
- The Consortium of Multiple Sclerosis Centers
- Multiple Sclerosis Research Institute
While support from national MS organizations is generally available to all, Paxton says that eligibility and guidelines for other programs vary. “You will need to consult the specific program for details,” she says.
Researching financial assistance programs may take time, and the application processes can sometimes be frustrating. However, take heart that there are many financial resources available to those living with MS, as well as people who want to help connect people like you to those funds.
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