LHF Blog

Let's Talk....

  Posted on August 2, 2018

Read our latest blog post about how simply starting a conversation leads to meaningful change.

The Duchenne Family Assistance Program is all about conversations.  Conversations with patients and caregivers who need help, conversations with other organizations about how we can best provide services to Duchenne families, and conversations with people who make decisions about how those we serve get coverage through commercial insurance and Medicaid.

One thing that has become very clear to our team is that very few people in the insurance and Medicaid industries know anything about Duchenne muscular dystrophy. We aren’t interested in a blame game regarding this situation, rather we are actively engaging with payers about this disease and its impact on patients, families, and society.  As researchers, clinicians, and regulators become more focused on the patient experience and more inclusive of the patient community when making decisions, we feel that insurers should also be part of the conversation.

So, for the past six months, we have been showing up where the payers are…at conferences, summits, and other insurance and managed care industry gatherings. We have been registering to speak at state Medicaid Drug Utilization Review meetings.  And we’ve been using our networking skills to get to the people who are making the ultimate decisions for Duchenne patients: Decisions about who gets access to FDA approved therapies, suitable equipment, Medicaid and waiver coverage, and individual and family support services.

One of our recent experiences really highlights the power of engagement.  A state Medicaid director that we met at a Medicaid managed care conference had no working knowledge about Duchenne and the long-term impact that it has on patients, families, and the public health system.  Through the course of several conversations, he learned about Duchenne and what happens when those affected go without needed therapies, equipment, and services.  We also thoroughly outlined the flaws in his state’s Medicaid coverage policy for an approved therapy, including age and ambulation limits, and unrealistic and inaccurate requirements for initiation and continuation of the therapy.  At the next state Drug Utilization Review meeting, many favorable changes were made to the policy and now several Duchenne patients in the state will get coverage through Medicaid.

Going forward, we will continue to engage with payers by attending their meetings, sending emails, making calls, and talking to them about Duchenne and why optimal care and access to treatment, equipment, and services is making a difference.  We will be reporting about our challenges and successes here on the LHF blog so be sure to follow us on social media.  And if you have an insurance or Medicaid issue that you want to discuss, LET’S TALK!!




About Mindy Cameron


Little Hercules Foundation relies on the generosity of individuals around the world, like you, who believe in our mission and in the power to make a difference in the lives of those diagnosed with — and families fighting against — Duchenne muscular dystrophy.

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