MS Awareness month is the perfect time to shine a light on a little secret within the MS community. Although we are grateful for the millions of dollars being raised for Multiple Sclerosis research and we all hope for a cure someday, we need help now. Many with MS feel that a portion of the money raised through fundraising events would be better spent on programs and services to help people that are currently struggling, and not just with a focus on research and new medications.
People are contending not only with the devastation MS does to our bodies and our personal lives but also with the hefty price-tag. Multiple Sclerosis is an expensive disease to have. Medication can only help people if it’s attainable but the average yearly cost for DMT’s is approximately $80,000. There are resources available to off-set costs (see below) but a lot of people don’t know about them and others find the applications for eligibility hard to navigate. For those that choose non-pharmaceutical approaches, there is no support at all.
How long people can continue to work after an MS diagnosis varies from person to person. I think most of us wonder right from the start of what happens if we can no longer support ourselves. Although plenty of people with MS remain healthy enough to stay in the workforce, the reality is that many become cognitively and physically challenged and they are forced to shorten their work hours or leave jobs they can no longer do. As income dwindles, expenses increase.
Out of pocket costs for medication, supplements, special diets, mobility aids and home modification for safety and accessibility can be insurmountable. No one should have to choose between paying for medicine, insurance premiums, a safe environment and/or living expenses
An unofficial poll of the online MS community highlighted a lack of adequate resources to help cope with the challenges of living with a debilitating chronic disease. Many felt they would benefit from stress management programs and mental health counseling. There was also a growing interest in wellness strategies versus disease management alone. Some would like research to also focus on how diet, CBD and LDN, affect the course of Multiple Sclerosis progression and symptoms.
The biggest concern people shared was the inability to afford daily necessities and household expenses due to lost income and high medical costs. The poll garnered a list of things people wished to help strike a balance between what it takes to live with MS and still have a good quality of life.
MS Community Wish List:
- Programs, grants, reimbursements, gift cards and other assistance to improve daily living.
- Transportation to doctor appointments.
- Home modification and durable medical equipment such as canes, rollators, wheelchairs, scooters, handrails, grab-bars, doorknob replacement to hand levers, ramps, shower chairs.
- Grants to assist with utilities, home health aides, counseling, light housekeeping, groceries, meal services, and nutritional supplements.
- Programs focusing on nutrition, exercise, and healthy cooking.
There are many ways our MS tribe can help each other. One is sharing resources. Here is a list of helpful programs, services, and links to explore:
- Multiple Sclerosis Association of America: MSAA has three main programs; Cooling, MRI Access Fund and Equipment Distribution, which includes items from eating utensils to wheelchairs.
- Multiple Sclerosis Foundation: MS Focus provides grants for Emergency Assistance, Healthcare Assistance, Home Care Assistance, Health & Wellness, Transportation, and my favorite; Brighter Tomorrow Grant, for things to improve life! They also offer programs for cooling, computers and assistive technology.
- National Multiple Sclerosis Society: Connects you with other resources and services to help with the financial challenges of paying for heating, cooling, rent, mortgage, temporary home health aides, transportation, accessibility modifications to homes and automobiles and durable medical equipment. They also provide free in-home case management.
- Can Do MS: Provides free online health and wellness education programs, a one-day JUMPSTART® educational and interactive program to learn skills and tools to adopt healthy lifestyle behaviors, and a Take Charge® wellness retreat.
Other Resources:
- Medicare savings program
- Pan Foundation
- HealthWell Foundation
- Patient Services Program
- The Assistance Fund
- Patient Advocate Foundation Co-Pay Relief Program
- Division of Disability Services/ Personal Assistance Program
- GoodDays
- Well Spouse Association
- USAMS
- United Way connects people with community resources and programs.
- Needy Meds
- Friends of Man
UK Resources:
- https://www.mssociety.org.uk/care-and-support/financial-help/apply-for-an-ms-society-grant Offers two grants: Health and Wellbeing and Carer’s Grant.
- https://www.ms-researchandrelief.org/grants/ Offers financial assistance for aids, adaptions, and equipment.
- https://www.mstrust.org.uk/life-ms/your-finances/grants-and-financial-help Lists a variety of resources to explore.
Medication Assistance:
- Ampyra: ampyra.com/cost-patient-assistance
- Aubagio: MSOnetoOne.com
- Avonex: abovems.com
- Betaseron: betaseron.com/betaplus-support-program/financial-support/
- Copaxone: sharedsolutions.com
- Extavia: extavia.com
- Gilenya: gilenya.com/c/ms-pill/go-program
- Acthar: Support & Access Program – actharmsrelapse.com
- MSOne2One: lemtrada.com
- MS LifeLines:mavenclad.com
- Alongside MS: mayzent.com
- Ocrevus: Genentech-Access.com
- Plegridy,Tecfidera,Tysabri & Vumerity: abovems.com
- Rebif: mslifelines.com
Other ideas:
- Inquire if your local church has a Benevolence Fund.
- Check out programs and resources provided by your local and state, Department of Health and Human Services.
- Community Resource Finder.
Most of the resources listed are in the US. I had difficulty finding resources for other countries. If anyone has other resources to share, please email them to traci@mswellnessproject.com . The resource list will be periodically updated- HERE
(The links shared in this article are informational only. Please verify all resources)
Lending a helping hand can change lives.
Small acts of kindness can transform the world!
Tecfidera copay assistance; Tysabri drug copay & infusion copay assistance: contact Biogen 800-456-2255
Thank you Michelle!
Thanks to those thoughtful people who put this list together and to those who provide the services mentioned. I did not want to need any help. Thought I’d be self sufficient. MS has made me humble. Now I have to ask for help. Last month I had to pay $500! For Ampyra. Going without it for two weekends kept me from walking. This is too much for one person to bear alone. Thanks again.
Sandy, There is nothing wrong with accepting a bit of help when you need it! I think we’re all conditioned to try to shoulder all problems alone and it’s just not necessary. Although there are a lot more people than there are resources, there is help out there to ease the burden. If you haven’t already, you may want to try the Ampyra link to see if you qualify for patient assistance. If you don’t they usually hook you up with another resource.
Help making and keeping straight my bazillion appts and medications.
Trish, There are some helpful apps out there to keep track of meds. I use the free app Med Helper.
What is med helper and there are lots of them which one is best?
Hi Tonya! The app is called Med Helper. It’s free in the Google Play Store. You can log all your meds in there and it keeps track of when you take them. I like it because sometimes I can’t remember if I already took my medication or the last time I took a certain drug. You can keep track of other things too, and there is a note section.
Wow this is an awesome list. Thank you 🙏🏾
My pleasure Sherri!