LHF Blog


Health Insurance and DMD...Oxymoron?

  Posted on June 12, 2018


Many of us understand the struggles of getting our insurance companies to cover what our loved ones with Duchenne need. At times, claims for these items—equipment, FDA-approved drug therapies, care considered standard for DMD—sail through without a hitch. But for a good majority, there are hitches. And glitches. And seemingly endless bureaucratic hoops to jump through and layers of denials and appeals. And all the while we’re thinking...don’t these people get it? Don’t they understand what it’s like to have to spend all this time getting access to the things our DMD doctors say are medically necessary? Time that our kids don’t have? Do the people making these serious decisions understand Duchenne at all?!! We’re finding out the answers to the above questions are no, No, and NO.

As physicians, researchers, drug developers and regulators become more and more patient focused in the way they make decisions, the reimbursement sector is, for the most part, still making decisions that affect us without input from patients or experts. Here are a few examples of health policies we’ve encountered:

Private insurance: Several major health carriers require patients to be ambulatory to receive coverage for an FDA-approved therapy even though the label says nothing about ambulation.  And how do they define ambulatory? Great question, and it’s not a one-size-fits-all answer.  One large insurer defines ambulatory as walking unassisted greater than or equal to 300m on a 6mwt; another requires walking at least 180m; and another just leaves it at “ambulatory.” Notwithstanding the fact that these coverage requirements discriminate against non-ambulatory patients, what happens if a patient walks 1 meter less than these requirements? Are they denied coverage?  Are their 179 meters less important than another patient’s 180 meters?

Medicaid: Where do we even begin here?  States are allowed great flexibility in how they administer their Medicaid programs, which results in major inconsistencies when it comes to coverage of medically necessary care for DMD patients. To further complicate matters, most Medicaid members are required to choose an MCO (managed care organization) plan offered in their state upon eligibility. Some states have one MCO, some have five (Florida has 17!), which further confuses and complicates coverage decisions as each one of these MCO’s can make their own coverage policies. To boil it down into the most basic terms, where you live may very well dictate your care.

So how do we begin to improve this situation for Duchenne families across the United States?  We think the best place to start is at the source. We need to change the way the reimbursement sector of our health care system views Duchenne. We recently attended a conference where state Medicaid policymakers from across the country were in attendance.  We inquired about their policymaking strategies for rare disease patients, and how they go about making these coverage decisions. The answer wasn’t encouraging, as all the state Medicaid directors we spoke with admittedly had no idea how coverage decisions are reached (most states outsource this function to a pharmaceutical consultant). Iowa recently enacted a Medicaid rule that states, in part “When making recommendations or determinations regarding beneficiary access to drugs and biological products for rare diseases, as defined in the federal Orphan Drug Act of 1983, Pub. L. No. 97-414, and drugs and biological products that are genetically targeted, the committee shall request and consider information from individuals who possess scientific or medical training with respect to the drug, biological product, or rare disease.” We think this is a great first step and would love to see it become a widespread practice.

Here are a few important tips when facing a coverage denial:

Stay. The. Course.  File the appeal and keep filing. After you’ve exhausted all your appeals with your insurance company, you can request an external review by an IRO (Independent Review Organization). We’ve seen many denials overturned on external review, and where we can establish patterns of inappropriate denials, we can pursue additional remedies. For Medicaid denials, participate in the administrative hearing process, and ask your health care provider to participate whenever possible. This process is time-consuming, granted, but our committed and knowledgeable staff will provide you all the support you need. Seriously, we love this stuff. Just kidding…we dislike this process just as much as everyone else does, but we love serving our DMD community by helping them get what they need.

Know your rights and insert your voice in the process.  Many times, health care providers and clinics handle these appeals on behalf of their patients—which is great—but you have a right to know what’s going on behind the scenes. We’ve seen many instances where the patient and/or caregiver is the only DMD “expert” voice heard during the appeal process. Again, we’re here to help.

Speak out.  Every state is required to hold regular DUR (Drug Utilization Review) meetings. These meetings are public, but many states have rules of participation.  Our experience has been that when we show up and engage in a thoughtful manner, we start an important conversation that hasn’t been heard by these decision makers. If you are interested in attending and/or speaking at one in your state, get ahold of us and we’ll get you the information.

The Little Hercules Foundation’s Duchenne Family Assistance Program works with program partner Team Joseph to help families living with DMD get what they need to live their best possible lives. For more information, please visit littleherculesfoundation.org and click on the “Get Help” tab.


About Lil Herc

I'm a small but mighty superhero with the spirit of a warrior, the heart of a lion, and a smile brighter than the sun. My favorite color is sky blue (PMS298C to be exact), and my favorite pastime is serving the DMD community.

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