Myositis Patient Financial Assistance

Living with a rare chronic illness causes many financial difficulties

Learn more about and download the application and help guide for the MSU Myositis Patient Financial Assistance program.

Download now or learn more about the program by checking out the information below.

MSU Myositis Patient Financial Assistance Program

About the Patient Financial Assistance Program

Update: Starting January 1, 2020, our financial assistance program is expanding! Details are updated in the information below, but the expansion includes an increase in the maximum patient yearly award amount, from $1000 to $1500, and the program now officially includes mobility and assistive devices.

The Myositis Patient Financial Assistance Program was released on our one-year anniversary of becoming a  501(c)(3) nonprofit organization founded by myositis patients for myositis patients. Myositis, a rare and debilitating neuromuscular disease, affects an estimated 50,000-75,000 people in the United States. This program adds to our ever-growing list of programs we provide to patients to help improve their daily lives.

Due to the rarity of the disease, and the fact that many doctors may only see one patient, if any, with myositis in their careers, patients with myositis and suspected of having myositis often face difficulties in procuring an expedient diagnosis and adequate treatment. Furthermore, patients with chronic illnesses often face financial difficulties due to ongoing medical bills, lost wages, and extraneous expenses indirectly related to health care such as home modifications and medical travel. Therefore, we have worked tirelessly to raise funds to establish and expand (as of 2020) our Financial Assistance Program. Through it, we will provide funds to patients for travel to see known myositis experts for diagnosis and treatment, help with medical expenses and mobility devices, and household expenses due to the overwhelming costs of living with a rare, chronic illness.

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 $1500 per year, based on a number of factors defined on the application and help guide.

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 $1,500 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 additional forms and requirements for 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.

These are not reimbursable expenses. We will pay directly to your creditors according to a recent bill you provide to us.

Household/Living 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.

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. May include toilet lifts, wheelchairs, power chairs, lift seats and necessary accessories.

Medical Travel is defined as airfare; mileage; hotel; ground transportation such as taxi, Uber, Lyft, public transportation services, bus fare; and/or train fare; for travel more than 100 miles away from home to consult with a Myositis Specialist for diagnosis, treatment, and testing.

Medical travel assistance requires pre-approval using the Financial Assistance Application and other required documentation as outlined in the help guide. If approved, each medical travel decision, and what is included in the approval amount, is made on a case-by-case basis, not to exceed $1,500. (You may be asked to pay upfront for flights, bus and train travel and, if approved, these will be reimbursed.)

See the help guide for full details on Medical Travel procedures and additional forms.

Please submit your application within 60 days of your appointment.

Application Steps

Below is a brief overview 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 basic eligibility information for financial assistance on the overview tab.
  • If you have received assistance from us in the past, has it been a full rolling year? For example, if you were approved in May 2019, you would be eligible to apply again in May 2020. Members are eligible to apply once per rolling year.
  • If you meet the criteria, download the Financial Assistance Application and the Financial Assistance Help Guide. The help guide contains important information.
  • Gather all required supporting documents including the latest copies of bills, invoices, and statements you are asking us to pay. For medical bills, has insurance paid their part? If no, please contact them.
    • All bills submitted must include a telephone number, mailing address, and account number.
    • Rent Assistance: See full details in the help guide. 
  • Make sure your application is signed and that the doctor’s form is completed and signed.
  • Include a brief personal statement to include further details where required.
  • Send us your application, supporting documents and forms by email, or by fax or mail.
    • Do not include health or medical records. We do not need these.

Send your application, forms, and documents

Where and how to send your application and documents

Only completed and signed applications, which include all required supporting documentation, are accepted. Do not send any health or medical records as we do not need these.

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

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:

MSU
9125 N. Old State Road
Lincoln, DE 19960

Download the Application and Help Guide

NOTE: Applicants and potential recipients of financial assistance should discuss any ramifications with their caseworker, accountant, or lawyer.

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.

© 2020 Myositis Support and Understanding Association (MSU). All rights reserved. | View our Privacy Policy, Terms, and Non-Discrimination policy

MSU is a charitable organization with 501(c)(3) tax-exempt status. Federal ID #47-4570748.

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