While inequities in health care persist, patients with multiple sclerosis (MS) can take steps to ensure the best care possible, regardless of their sex or ethnicity, where they live, or whether they have insurance or what type. Start with these resources and tips.

Tap into patient organizations.

“Over the last few years, the National Multiple Sclerosis Society (NMSS) and the Multiple Sclerosis Association of America (MSAA) have made tremendous strides in providing more resources to patients, especially underrepresented groups,” says Lilyana Amezcua, MD, MS, FAAN, associate professor of neurology at USC’s Keck School of Medicine. The NMSS MS Navigators, for instance, connect patients to educational resources, counselors, MS specialists, and even experts who will get on the phone with insurers or pharmaceutical companies to help patients navigate red tape, get authorizations, and obtain financial assistance for medication costs. And for eligible patients, the MSAA will even help pay for MRIs as part of its MRI Access Program.

Prep for your appointments.

Make a list of your questions beforehand. “It’s so easy to forget what you want to say once you’re sitting in the doctor’s office,” says Dr. Amezcua. “And bring a friend or family member to have a second set of ears.”

Form an alliance with your doctor.

“I want patients to have high expectations of the people who treat them,” says Stephen Krieger, MD, FAAN, professor of neurology at the Corinne Goldsmith Dickinson Center for MS and the Icahn School of Medicine at Mount Sinai in New York City. That means asking for an explanation if you don’t understand something, he says. And feeling comfortable enough to disagree. “It’s important to tell your doctor what your worries and concerns are,” says Dr. Amezcua. “What you’re looking for, ultimately, is a shared decision-making process.”

Seek a second opinion.

If your doctor looks uncomfortable when you bring up the idea of a second opinion, that’s even more reason to get one. “At our center, we’ll put patients referred from general neurologists on higher-efficacy medications,” says Dr. Amezcua. “Then we’ll monitor them once a year while they continue to see a neurologist in their community on a more regular basis.”

Get help with co-pays and medication costs.

Patients who can’t pay for medication may be eligible for assistance programs sponsored by pharmaceutical companies. “They may cover the entire cost or find coverage through charitable groups; otherwise some patients couldn’t afford treatment,” says Lauren Gluck, MD, director of the Multiple Sclerosis Center at Montefiore Medical Center in the Bronx, NY.

Educate yourself.

“Just a few years ago, the various MS societies didn’t have resources tailored to people of color,” says Dr. Amezcua. Now there are online seminars and videos in Spanish, plus information for all patients. And the NMSS has revamped its materials to make sure it depicts all types of patients on its website and in its magazine and other resources, says Bari Talente, executive vice president of advocacy and health care access for the NMSS.

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