Learn more about and download the application and help guide for the MSU Myositis Patient Financial Assistance program. NOTE: This is NOT a copay assistance program.
This program is for members. If you have not yet created your free MSU membership, please do so prior to applying.
Update: As of January 4, 2022, the MSU Myositis Patient Financial Assistance Program expanded AGAIN! The expansion includes an increase in the maximum patient yearly award amount, from $1500 to $2000. We are accepting applications.
MSU has given $250k in Myositis Patient Financial Assistance!
Financial Assistance programs are rare, even in the rare disease space. We understand living with a rare disease like Myositis is expensive and the need for financial assistance is real. Since 2017, we have helped hundreds of people with Myositis in these categories: mobility/assistive equipment, medical bills – not a copay assistance program – and emergency household expenses.
And this year we increased the maximum award from $1,500 to $2,000. It’s only through your generosity as fellow patients, donors, sponsors, supporters, and MSU volunteers that this was even a possibility. And now, in 2022 alone, we will provide $100,000 in assistance!
MSU Myositis Patient Financial Assistance Program
Myositis Patient Financial Assistance Program Overview
To apply for financial assistance the patient must be a U.S. resident diagnosed with a type of inflammatory myopathy (myositis) or be going through a diagnostic process in which doctors strongly suspect and are testing the patient for one of the forms of myositis through muscle or skin biopsy, EMG, and/or blood work.
Requests for assistance are evaluated on a case-by-case basis and are subject to funding availability as well as eligibility and financial need. Patients may be eligible to receive up to a maximum of $2,000 once per rolling year from MSU.
All supporting documents must be included to be considered for an award. If you qualify for a financial award, the amount awarded will be paid directly to your creditor(s), with the exception of case-by-case situations. Do not send us any health or medical records as we do not need these.
Myositis Patient Financial Assistance Help Guide
Please use the help guide when completing the financial assistance application. The help guide contains all requirements for needed support documents based on the type of assistance you request.
The program covers
Medical Bills are defined as bills payable for medical diagnosis, treatment, and care to pharmacies (or formularies) for prescriptions, accredited hospitals, labs, Licensed Medical Doctors, Doctors of Osteopathy, urgent care centers, and other like institutions.
Not a copay assistance program. These are not reimbursable expenses. We will pay directly to your creditors according to a recent bill you provide to us.
Emergency Household Expenses are defined on a case-by-case situation but may include utility bills, mortgage or rent payments, etc. If approved, these are paid directly to your creditor. You must include copies of the original bills that include payment mailing address, telephone number, and account number.
For rent payments, full details are in the help guide and include several additional requirements.
Mobility Devices are defined as devices that help people with myositis enjoy greater mobility, freedom, and independence and include things such as wheelchairs, power wheelchairs, stairlifts, Hoyer lifts, ramps, transfer devices, certain home and bathroom modifications, and others.
Since mobility device types vary based on need and complexity, applications will be determined on a case-by-case scenario, using multiple factors including medical need as determined by your doctor, device purpose, health insurance coverage, and if the device meets our definition of devices likely to be covered under this program.
Applying for financial assistance
Below is a brief summary of the steps to request financial assistance. Full details are included in the application and help guide.
- Register for your free MSU membership at UnderstandingMyositis.org/register.
- Review the eligibility information for financial assistance on the overview tab.
- If you have received assistance from us in the past, has it been a full 12 months since you were last approved? If not, please wait to apply. For example, if you were approved in May 2021, you would be eligible to apply again in May 2022. Members are eligible to apply once per rolling year. However, this does not mean we will be able to provide assistance for the same circumstance.
- Download and complete the Financial Assistance Application.
- Download the Financial Assistance Program Help Guide, which includes the required information and supporting documents that must accompany the application.
Where and how to send your application and documents
We only accept completed and signed applications which include all required supporting documentation.
Do NOT send medical records as we do not need these.
Submitting your application
You can submit your application and supporting documents via email, fax, or mail, all options listed below.
Before sending, please note the following:
- Be sure your application is signed and that the doctor’s form is completed and signed.
- Include a brief personal statement to provide further details, where required.
- Ensure all supporting documents are included (invoices, statements, estimates)
- Do not send medical records.
Email (preferred method)
Email your completed application and supporting documents to office@UnderstandingMyositis.org.
Be sure to check your spam/junk folders for replies and add us to your contacts.
Fax your completed application and supporting documents to 888-MYO-RARE ( 888-696-7273)
Send by Mail
Mail your completed application and supporting documents to the address below:
9125 N. Old State Road
Lincoln, DE 19960
How do I apply?
Download the Application and associated Help Guide. We require a fully completed application AND supporting documents. Please DO NOT send your application without the supporting documents as this will delay your application’s review.
Can I call someone at MSU to see if I am eligible?
Because every person’s situation is different, there is no one in our office who would be able to tell you for certain whether or not you qualify for help before you submit an application. The only way to know whether you qualify is to complete and submit your application AND supporting documents.
Fill out the application and submit it together with your supporting documents for us to review. If you have questions about your application, you can reply to the email we send letting you know your application has been received.
I am starting a medication and I am looking for co-pay assistance. Does MSU offer a prescription copay assistance program?
No, we do NOT offer a prescription copay assistance program. However, we do provide assistance for medical bills, and prescription costs are covered under this type of assistance once you receive an invoice, statement, or bill. We require an invoice or statement from the company, and if you are approved, we pay directly to the creditor.
When am I able to apply for financial assistance?
If this is your first time applying for financial assistance with MSU, you can submit your application and supporting documents today. Patients are eligible to apply once every rolling year. If you have received financial assistance from MSU in the past, you are eligible to apply one full year following your previous application. In other words, you must wait 12 months from the date you were last approved before you are eligible to re-apply for financial assistance. For example, if you were approved on March 3, 2021, you would be eligible to apply again on March 3, 2022.
Can you mail me a copy of the financial assistance decision letter?
We send all approval information and the decision award letter by email, and you should have a copy for your records if the application has been finalized. If you would like us to mail you a copy, please either notate this request on the application or in your personal statement. If you need a copy of an award letter from a previous application, please contact us with the request.
About the MSU Myositis Patient Financial Assistance Program
Update: Beginning in 2022, the MSU Myositis Patient Financial Assistance Program is expanding AGAIN! The expansion includes an increase in the maximum patient yearly award amount, from $1500 to $2000.
The MSU Myositis Patient Financial Assistance Program was fully realized and released in late 2016. MSU is a 501(c)(3) nonprofit organization founded by myositis patients for myositis patients and caregivers.
Myositis, a rare and debilitating autoimmune disease, affects an estimated 50,000-75,000 people in the United States. This program adds to MSU’s ever-growing list of programs that help improve the lives of myositis patients.
Due to the rarity of myositis and its various types and subtypes, including the fact that some doctors may never see a patient with myositis in their careers, patients with or suspected of having myositis often face difficulties and significant delays in getting a diagnosis. Furthermore, patients with chronic illnesses often face financial difficulties in part due to the high cost of living with a rare disease. MSU has worked tirelessly to raise funds to establish and expand the financial assistance program and we give thanks to our sponsors, donors, members, and supporters for continuing to help fund this program.
Through this crucial and much-needed program, MSU awards funds to patients (based on qualification and approval) for medical bills, mobility devices, and emergency household expenses.
MSU hopes, through these funds, to provide much-needed financial relief to patients, whose lives are already stressed due to illness, allowing them to more fully concentrate on their health. Patients who qualify will be eligible for a maximum of $2000 per rolling year, based on a number of factors defined on the application and in the help guide.
Additional funding sources for equipment
We have not vetted the programs below and are unable to answer any questions about them. We provide this as an additional resource to the Myositis Patient Financial Assistance Program.
Muscular Dystrophy Family Foundation (not associated with MDA) — http://mdff.org/ — Its mission is to provide adaptive equipment and emotional support to individuals and families with muscular dystrophy. Examples of equipment include purchase and repair of orthopedic equipment and appliances; wheelchairs, leg braces, breathing machines, shower chairs, lifts and hospital beds, wheelchair lifts and ramps.
Disabled Children’s Relief Fund — http://www.betterhearing.org/hearingpedia/hearing-loss-resources/financial-assistance/disabled-childrens-relief-fund a non-profit organization that provides disabled children with assistive devices, rehabilitative services, and support for arts and humanities projects. DCRF provides disabled children with equipment, prostheses, and rehabilitative services throughout the United States. DCRF focuses special attention on helping children that do not have adequate health insurance, especially the physically challenged. In some cases, DCRF may be the last resort.
First Hand – https://applications.cerner.com/firsthand/ – may fund clinical expenses and durable medical goods – medical costs, van lifts, wheelchairs, etc, if there must be no existing financial net, such as Medicaid or private insurance, to cover the requested expenses.
Wheelchair Foundation – http://wheelchairfoundation.org/ – a non-profit organization providing wheelchairs to those in need around the world.
The Darrell Gwynn Foundation Wheelchair Assistance Program – https://darrellgwynnfoundation.org/wheelchair-donation-program.htm
Social Security Disability & Medicaid – http://www.socialsecurity.gov/disabilityresearch/wi/medicaid.htm – Medicaid is a jointly funded, Federal-State health insurance program for low-income and needy people. It covers children, the aged, blind, and/or disabled and other people who are eligible to receive federally assisted income maintenance payments.
Aubrey Rose Foundation – http://aubreyrose.org/ – Helps families caring for children with life-threatening illnesses with the focus being on the family unity. It strives to lift families from life’s complexities during this difficult time by providing emotional and financial support.
Bright Steps Forward– http://www.brightstepsforward.org/ – Bright Steps Forward, Inc. is a 501c nonprofit organization that provides funding for intensive pediatric therapy to financially disadvantaged children with neurological disorders such as cerebral palsy, disabilities of prematurity, autism and other congenital or acquired conditions that affect their physical functioning.
United Healthcare Foundation – http://www.uhccf.org/ – Children who have medical needs are sometimes not insured comprehensively to provide coverage for all of their medical treatments. There are few places for families who have gaps in their health benefit plan coverage to turn to for funding medically necessary services for their children. Children may go without necessary treatment, or, they receive the care and families assume a large amount of debt. The Foundation understands these needs and is willing to help fill this void.
Hannah & Friends – http://www.hannahandfriends.org/ – A non-profit organization dedicated to improving the quality of life for children and adults with developmental disabilities.
Division of Specialized Care for Children – http://dscc.uic.edu/ – Helps children with disabilities, and those who have conditions that may lead to disabilities, grow and develop to the full extent of their abilities.
Midwest Special Needs Trust Grants – http://www.midwestspecialneedstrust.org/charProgGrants/default.htm – A program that provides small financial assistance grants to persons with disabilities who meet the eligibility criteria for disability and income. Two types of grants are available through the program.
Modest Needs Mission – https://www.modestneeds.org/about-us/index.asp – To prevent otherwise financially self-sufficient individuals and families from entering poverty, To restore the financial self-sufficiency of individuals who are willing to work but are unable to do so because they do not have the means to remit payment for a work-related expense; To empower permanently disadvantaged individuals To strengthen small non-profit organizations by providing a forum whereby such organizations can apply directly to the general public for the help they need to complete the relatively inexpensive projects that will allow them to better serve their clients and the communities they exist.
Rehabilitative Equipment Exchange – http://www.rehabequipmentexchange.com/index.html – This national network is a FREE service to facilitate the exchange and transfer of used rehabilitation equipment (used rehab equipment). Individuals can use the web site to buy, sell, or donate used rehab items of many types, including wheelchairs, pediatric equipment, mobility aids, ADL aids, communication devices, assistive technology, and exercise equipment.
NOTE: Applicants and potential recipients of financial assistance should discuss any ramifications, including taxes, with their caseworker, accountant, or lawyer. MSU cannot and will not provide legal or tax advice.
Anti-Discrimination Policy: MSU does not discriminate based on race, color, age, religion, national origin, gender, gender expression, sexual orientation, national origin (ancestry), marital status, disability, or political affiliation. All financial applications will be reviewed on a case-by-case basis and the final determination will be based on eligibility, financial need, and availability of funds.