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/

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.
optimizing-care-turnier-web

Pioneering JM Care – Integrating Research With a Multidisciplinary Approach to Care

Dr. Jessica Turnier of the University of Michigan / Mott’s Children’s Hospital is dedicated to creating new directions for JM research and wider perspectives on how it is treated. About the University of Michigan, she states, “When I came to Michigan, there were a lot of myositis patients, and I just developed a really strong connection with those patients.”

Austin Krainz’s Story

Austin Krainz, diagnosed with juvenile dermatomyositis at the age of seven, overcame the challenges of a rare disease with the support of his family and pioneering treatment from Dr. Lauren Pachman. After more than a decade of battling the illness, Austin entered remission, fulfilling his childhood dream of professional racing in Porsche’s GT America series.

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