Careful documentation of your MS is key.
by Jane Hoback
Filing a health insurance claim can be challenging for even the most straightforward issue. But getting coverage for medications and equipment to treat multiple sclerosis—particularly if treatments are for new or exacerbated symptoms—can introduce a whole new level of complexity.
However, certain approaches can make a big difference. Keeping a detailed, accurate diary of your symptoms and responses to treatments may help get a claim paid or a denial reversed. And in this new world of patient responsibility and evidence-based medicine, doing so could be critical.
Many medications and durable medical equipment for MS require prior authorization from the insurance company, and much of the burden falls on healthcare providers to submit medical information [to the insurance company] to support that, says Kathy Costello, MS-certified nurse practitioner and member of the healthcare access team.
“Healthcare providers must provide documentation that includes the diagnosis, the need—particularly for durable medical equipment—what has already been tried, what happened, and the reasons if they need to change to something else,” she says. “So it’s important to make sure you’ve told your provider very specifically what your symptoms are and how they’re affecting your daily life,” Costello says. A good way to do that is to keep a detailed written log that you can bring to your medical appointments.
The diary details
Lynda Hartley of Boise, Idaho, spent 33 years working in the claims department at Blue Cross of Idaho Health Services before she retired. She was also diagnosed with MS in April 2015 at age 69, so she has seen the process from both sides.
Hartley had been reading through template letters that the Society provides healthcare professionals and people with MS for preauthorization requests and appeals of denials to insurers when she spotted a preauthorization request for a motorized wheelchair or scooter. She noted that the letter contained a comment about the patient “having some good days.”
“That could be a red flag for many insurance companies,” Hartley says, because the phrase is vague. The comment possibly implies that the person can walk, and leads an insurance reviewer to think a walker would be better and less expensive than a motorized scooter, resulting in a denial. “The patient needs to be specific,” Hartley emphasizes. For example, if a person tells her doctor she had such intense pain that she couldn’t walk for a certain number of hours on specific days, “those are the notes that the doctor [should be] sending to the insurance company,” Hartley says.
Hartley began to write down her own treatments and symptoms. She now keeps track of her injections and makes notes of any symptoms or side effects she experiences. She also keeps records throughout the week about symptoms like fatigue or pain. “I write down little notes in my day planner about how I was feeling, and what I was doing at the time, and bring them to my doctor,” she says.
Logs might include specific symptoms, time and date, duration, severity, stress level, energy level, physical activity, food intake and other issues or observations. It’s particularly important to keep track of any new symptoms that last 24 to 48 hours, how the symptoms affect you and what they prevent you from doing, Costello says.
Such logs can take a variety of formats. Some people use existing paper-based journals or diaries, while others download symptom trackers from the internet (for example, nationalMSsociety.org/symptomtracker) or use apps on their phones or tablets. Some, such as MS Self for iPhone, let you track symptoms and medications as well as factors like mood and energy. Others, like My MS Manager for both iPhone and Android, track symptoms and medications, and store medical information. Visit the Apple or Google Play store to review and download these and other apps—and find what’s right for you.
Dealing with denials
Keeping good records becomes even more important if you are appealing a denial of coverage by your health insurer, particularly if a company denies coverage for a more expensive medication in favor of a cheaper one, says Jennifer Obenchain, clinical team lead, patient services division, at the Hampton, Virginia-based Patient Advocate Foundation.
“You have to have documentation: The patient can’t take this medication for these reasons,” Obenchain says. “The more information healthcare providers can give, the easier it is for the insurance company to understand what’s going on and why they’re asking for this,” she adds.
Kim Calder, director, Health Policy, at the National MS Society, recalls a case where an individual had been taking an injectable disease-modifying treatment for a number of years, ultimately developing injection fatigue. The man’s skin also was scarred and bruised from the injections. “So he just basically stopped. Then his MS started getting worse.” The man’s doctor prescribed an oral medication to replace the injectable, but the insurance company refused to cover it. The man appealed the decision, using photos he had taken to document his damaged skin. The result: “It worked,” Calder says.
His use of the oral medication was approved.
Medical equipment details
Documentation is perhaps more important now than ever before, Calder says, because in today’s healthcare climate, most insurers pay only for proven strategies. Medications must be approved by the Food and Drug Administration. That approval, in turn, occurs only when scientific evidence from clinical trials shows that the medication is helpful.
But when it comes to durable medical equipment (DME), comparable studies may not exist. “If you want to argue that Mrs. Jones needs this hospital bed because she can’t get out of bed herself, I don’t know if there are studies for that, so it’s difficult to make the case that it should be paid for,” Calder says. “That’s when it’s very helpful to have accurate information about an individual’s symptoms.”
While these concerns arise whether someone has commercial insurance or Medicare, “the rules are much stricter for Medicare, especially for DME,” Costello says. “If someone needs some type of wheeled mobility, Medicare wants to know if the person needs it in the home as well as in the community. It’s very important to submit medical documentation that supports that need.”
Keeping track of symptoms can also be helpful if you need to support requests for job accommodations, file a private disability claim or file for Social Security Disability Insurance.
Hartley notes that even if it doesn’t ultimately get her insurance to cover DME or other needs, she values her log anyway. “I like to keep track of my symptoms because I’m new to MS and am not sure I’d recognize a relapse,” Hartley says. “When I go to see the doctor, I can take my notes in and we can talk about what’s really happening with my disease.”
Jane Hoback is the new editor of Momentum magazine.
The Patient Advocate Foundation also offers free assistance.