5 ways your DMD care team can make treatment access easier
Getting Duchenne muscular dystrophy (DMD) treatments covered shouldn’t feel like a second job, but it often does. Between insurance denials, endless paperwork, and high medication costs, treatment barriers can pile up fast, making DMD treatment access more difficult.
Your DMD care team does a lot behind the scenes and can help you navigate insurance and DMD treatment access with less stress and fewer delays.
Prior authorizations and paperwork
In some cases, your doctor must obtain prior authorization from your health insurance plan before services or treatments are covered.
Your doctor’s office submits the request along with medical records, test results, and any other requested documentation explaining why you need a specific service, medication, device, or other treatment. Your insurance company will either approve or deny the request.
Some health insurance companies process prior authorizations in a matter of days. Others may take three weeks or longer and ask for more documentation.
Your care team continues to follow up with the insurance company and submit the requested documents during the prior authorization process.
Letters of medical necessity
Your insurance company may request a letter of medical necessity (LOMN) before covering specific treatments, devices, or services.
In the LOMN, your doctor discusses your diagnosis, how the requested treatment or service will help, and why alternatives won’t work. They may also explain why waiting or using something else could put you at risk.
Because insurance companies may look for reasons to deny coverage, these letters play a key role in DMD medication access. A clear, well-written letter can make the difference between approval and denial.
Insurance appeals
Even after a well-written LOMN, your insurance company may deny the request. Sometimes insurance calls your treatment “experimental” or says there’s a cheaper option you should try first.
When that happens, you and your doctor may decide to appeal. Your care team gathers more medical evidence, finds research that supports the treatment, and documents what you’ve already tried.
In some cases, your care team might advocate for a peer-to-peer review, where your doctor communicates directly with the insurance company’s medical reviewer. Since many insurance reviewers don’t know much about DMD, talking directly can sometimes speed up the process.
Fighting denials takes time, energy, and persistence. Having a care team with appeal experience can make the process less overwhelming and can improve your chances of receiving the proper DMD care.
Patient support and financial assistance
Even with insurance, many people need additional DMD treatment support, such as assistance with co-pays, deductibles, and other out-of-pocket costs. Your care team can connect you to programs that help with these expenses.
Many drug manufacturers offer co-pay assistance programs to reduce, or even cover, the cost of medication for those who qualify (usually if you have commercial drug insurance). Some nonprofits provide patient support services for people with DMD, such as grants for equipment, medications, travel, and other Duchenne-related expenses.
Financial support for DMD treatment isn’t always easy to track down on your own. Your care team should know where to look and which ones you might qualify for. Some offices have a dedicated financial counselor or social worker who can walk you through the process. In some cases, they’ll even complete and submit the applications for you.
Care coordination
Your care team typically has a care coordinator who can keep track of everything from prior authorizations to prescription refills. Your care coordinator makes sure:
- your insurance is notified when you start a new medication
- your prescriptions get to the right pharmacy
- you don’t run out of refills
- tests get ordered on time
- specialists stay informed about your care plan
When there are changes to your care plan, your care coordinator will walk you through what happens next.
Getting the support you need
Your DMD care team is there to handle as much of the red tape as possible so you can focus on your health. They know the system, the workarounds, and which programs can help with improving access to DMD treatment.
If you’re stuck, don’t hesitate to tell them. Be specific about what’s getting in the way, whether that’s a denied claim, medication costs, confusing paperwork, or something else. If they can’t help, they can direct you to someone who can.
With the right support and tools, getting access to the DMD treatment you need can be more efficient and less stressful.
Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
