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 https://enroll.tafcares.org

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, www.understandingmyositis.org/programs/financial-assistance-program/
Executive Director Update - A Season of Gratitude

Season of Gratitude

I am writing to wish you and your family the very best this Holiday Season. This time of year, especially, I am filled with deep appreciation for all that Cure JM families have accomplished to advance our mission, to improve the lives of children living with JM, and to support the doctors and researchers driving better treatments as we fight for a cure.

Sydney’s Story

Spring break should be about fun and relaxation. Sandi and her husband Zack expected their trip to Mexico would be the same. Of course, taking

The FDA’s Ruling on Vamorolone in DMD

You may have heard about yesterday’s FDA ruling, which approved vamorolone as an alternative steroid for use in Duchenne muscular dystrophy.

Vamorolone is a new steroid alternative with fewer side effects than prednisone. The drug aims to preserve the beneficial anti-inflammatory and muscle-strengthening characteristics of corticosteroids, while decreasing some of the unwelcome side effects, including bone fragility, delayed growth, and behavior changes.

As we learned in yesterday’s announcement, vamorolone was found to be both safe and effective as a therapy for Duchenne muscular dystrophy in its newly approved indication.

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