Affordable and Accessible Treatments for JM

As JM families, we understand how daunting a task navigating treatments can be, from dealing with insurance roadblocks to navigating the healthcare system and everything in between. 

We are excited to share some pro tips that we became aware of from a September presentation to Cure JM grandparents from a couple of Pharmaceutical Industry experts. 

No matter where you are in your family’s JM journey or what your individual situation may be, we hope you find these tips and assistance programs helpful in navigating your treatment options.

The experts Laurel Cherwin, BSN, RN, IgCN, and Senior Clinical Nurse Educator at Octapharma and Michelle Vogel, Vice President of Patient Advocacy at IV Solutions RX, MPA had some great tips for our Cure JM Families.

Laurel Cherwin recommended families should:

  • Request a case manager from the insurance company to streamline the care process and address access issues.
  • Collaborate closely with the patient’s doctor when navigating the insurance approval and appeal process to find the best course of action.
  • Maintain patience and persistence when dealing with insurance companies due to the complexities of authorization for coverage, and keep a detailed journal of interactions while requesting a call ID number for future reference.

Michelle Vogel suggests families should:

  • Explore copay assistance programs, pharmaceutical assistance programs, and patient assistance foundations to help manage the financial burden of expensive medications.
  • Look into medical assistance programs at infusion centers and physician offices, even if they are not widely advertised.
  • Consider seeking funding assistance through third parties and government sources to make therapies more affordable.

IVIG Copay Assistance Programs

Other Drug Copay Assistance Programs

Pharmaceutical Assistance

The Assistance Funds

Eligibility Criteria: U.S. citizen or permanent resident, Prescribed an FDA-approved treatment, Meet Financial eligibility criteria based, and upon household income and size

Covered Drugs: A-Hydrocort, A-Methapred, Acthar, Beta 1 Kit, Bethamethasone Acetate Pow, Bethamethasone Sodium Phosphate, Cortef, Cortisone Acetate, Depo-Medrol, Dexamethasone, Dexpak, Hydrocortisone, Kenalog-40, Medrol, Methylprednisolone, Millipede, Octagam, Prednisone, Pro-C Dure, Purified Cortrophin Gel, Rayos, Solu-Cortef, and Solu-Medrol.

Myositis Support

  •  Must be a U.S. resident diagnosed with a type of inflammatory myopathy 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 24 months from MSU
  • Program covers medical bills, emergency household expenses and mobility devices
  • For more information,

Other Resources

  • Contact your hospital social work department
  • Patient Assistance Programs: Several independent organizations offer assistance to patients with high medication costs. These programs vary in eligibility requirements and benefits. You can search for programs in your area using resources like:
    • NeedyMeds: URL
    • Patient Advocate Foundation: URL
    • RxHope: URL
  • Copay Cards: Pharmaceutical companies often offer copay cards that can help reduce the cost of their medications. You can find a list of current copay cards on the website of the Partnership for Prescription Assistance: URL
  • State and Local Assistance Programs: Some states and local governments offer programs to help residents with the cost of medications. You can find more information about these programs by contacting your state or local health department.

Parrish’s Story

We would like to introduce a one-of-a-kind, competitive, and determined young man, named Parrish. His story of resiliency and hope is one that will resonate with many of us in the Cure JM family. Parrish faced many challenges in his journey with JM, but found hope and support in his family and the Cure JM community. We are pleased to now share his experience to help others facing the same struggles during Myositis Awareness Month.

Balancing Work and Caregiving: Strategies for Working Parents of Children with Juvenile Myositis

Balancing the demands of a career with the responsibilities of caregiving is a challenging task for any parent. For those with a child diagnosed with juvenile myositis (JM), a rare autoimmune disease affecting children, the challenge is heightened. Juggling work commitments while providing the necessary care and support for a child with JM can be taxing. In this article, we hope to provide you with a few effective strategies and insights to help working parents navigate this delicate balance.

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