Healthy Living

The Battle with Insurance for Duchenne Muscular Dystrophy Coverage

As the FDA approves new therapies, insurance companies are handing out denials. Advocacy groups are fighting back for muscular dystrophy patients.

The Battle with Insurance for Duchenne Muscular Dystrophy Coverage

With FDA approval of Duchenne therapies, it's no far off to  believe that insurance companies would change their policies and make insurance coverage for these therapies easy. However, there is still is an increasing rate of denials from insurance companies for life-saving treatments and medical devices for Duchenne muscular dystrophy patients.

Getting payment approval is especially challenging when new procedures or medications are recommended. The process involves patients, medical providers and even parents spending hours on the phone or writing documents to convince insurance companies that the treatment is needed and legitimate.

Insurance filing is a process. Policy decisions are not always final, and you can get an insurance company to cover a process if you are persistent and have the proper documentation and backing.

Duchenne muscular can destroys lives, but there is still hope.

Advocacy groups for Duchenne coverage: Team Joseph and Little Hercules Foundation

Team Joseph and Little Hercules Foundation have always been supporters of the Duchenne Family Assistance Program. Now they are ramping up their advocacy program. They created a  program in October that is in response to insurance company denials of treatments for Duchenne muscular dystrophy patients.

Mindy Cameron advocacy director at Little Hercules said, “But now that we have some new approved drugs for Duchenne, we’re having major issues.”

She also told Muscular Dystrophy News Today by phone from her home in Carmel, Indiana. “The American healthcare system is set up so that every state and insurer has different policies. So, families that are already struggling with this disease now have to undertake this complicated process to try to get coverage for the things they need.”

Cameron has a son with Duchenne, so she knows firsthand the fight to get new medications and treatments covered by insurance companies.

Team Joseph is determined to helping families find and obtain the equipment and services not typically covered by insurance. They also provide travel money to families for care and events.

Little Hercules helps with insurance problems like Medicaid, social services, and insurance companies.

Even though the U.S. Food and Drug Administration has approved two therapies for Duchenne muscular dystrophy, there are still denials from insurance companies. These medications are corticosteroids and are very expensive Coverage depends on the deal an insurance company negotiated with the manufacturer, the state you live in, how much your child weighs, and if there are any rebates or discounts offered. The cost of these new drugs varies from patient to patient, and this can be a nightmare when trying to get insurance coverage.

First procedure for getting insurance claims filed

Getting an insurance company to cover a new drug or procedure takes many steps. It should be easy, but unless the coding and descriptions are done correctly, and all rules are followed, the insurance company will deny your claim.

Starting the process is a form filled out and ordered by your physician. You may need to get prior authorization, and this can involve confirmation of test results and other medical records to be submitted with the prescription or order.

Your clinician is the key to this process. You may need to have a letter of medical necessity sent to the insurance company in addition to the claim. This letter provides background information, plus information about the disease and the drug.

Hopefully, the insurance company will realize the importance of these new procedures and approve the claim.

Second Procedure for Getting Insurance Claims Filed

Step 2 comes into play when the insurance company has denied the claim. If your procedure or drug is rejected, you can appeal the decision. Again, take heart – your clinician interreacts directly with the insurance company to provide additional justification.

The insurance company must outline what the appeals process is. They also need to let you know why you were denied coverage.

You may need to initiate a “peer to peer” option and write your own patient appeal letter. Have your clinician submit a Letter of Medical Necessity as well.

Keep good records and track all communications with the drug company, your doctor, and the health insurer. Save all emails and letters. Write down who you speak with plus the time and date you talk to them. Request letters from your doctor as needed. Keep copies of all letters and records.

You may need to consider contacting your state Consumer Assistance Program, or even the Department of Insurance in your state during an appeal for coverage.

Be familiar with your health insurance policy. Call a representative if you need to understand how your coverage works. If you have insurance through an employer, your Human Resource department can intercede for you.

If a delay in treatment could be challenging to your overall health or treatment, request an urgent or expedited appeal.

Approval of new treatments will help patients live longer

Duchenne muscular dystrophy is a harsh form of this disease. Muscle weakness is the primary symptom and usually starts for boys at about age four. The condition advances quickly. Muscle loss occurs in the upper legs and pelvic area happens first, then the muscles in the upper arms disintegrate. Duchenne patients have trouble standing up and often cannot walk by the age of 12. Scoliosis is common in those with Duchenne muscular dystrophy and some patients experience intellectual challenges.

No known cure is available currently. Physical therapy, corrective surgery and braces may help with some symptoms. As the condition advances, assisted ventilation may be needed.

Medications include steroids to slow muscle degeneration, anticonvulsants are used to control seizures, and immunosuppressants are prescribed to delay the damage to dying muscle cells.

With new advances in medical science, treatment advances help patients with Duchenne muscular dystrophy live long – some into their 30s and beyond. With longer lifespans, there also comes the problems with education, care, independence, personal relationships and emotional health.

To help with these challenges, guidelines have been issued to help doctors care for their Duchenne patients.

"This report emphasizes helping people achieve their best possible lives, not just prolong their survival," said David Birnkrant, MD, professor of pediatrics at Case Western Reserve University School of Medicine and director of the Division of Pediatric Pulmonary Medicine at MetroHealth Medical Center, who helped lead a 25-member steering committee to coordinate eleven expert committees covering all aspects of DMD care. "Driven by patients, their families, and advocacy organizations, this report reflects a fundamental change in DMD care," he says. "The document emphasizes the quality of life by attending to psychosocial issues, care coordination, and improving patient transitions from childhood to adulthood."

These guidelines are excellent for keeping the entire well-being of the patient. Now with new medications being released, things are looking up for those with Duchenne muscular dystrophy. Longer life, a higher quality of life, and renewed hope in a cure.

Still, new advances often mean new battles with insurance companies. With the new guidelines given to doctors, plus the advocacy of the Little Hercules Foundation and Team Joseph, there is a bright light on the horizon that insurance companies will approve the medical claims for those with this heartbreaking disease. Immediate approval will clear the way to a better life for those with Duchenne muscular dystrophy.