How to talk to your care team about MG treatment costs

Note: Kristina Kelly is a board-certified patient advocate living with myasthenia gravis.

The exam room can feel like a pressure cooker. You get a limited amount of time to cover your myasthenia gravis (MG) symptoms, medications, referrals, and whatever new concern has popped up since your last visit. Therefore, it’s no surprise that the awkward money talk can be the first thing that gets tossed aside.

I get it. I’ve sat with plenty of patients who would rather discuss literally anything besides money. Let’s make those conversations easier by understanding real-world communication strategies, scripts, and clinical resources so you can speak openly with your neurologist and care team about your MG treatment costs — minus the dread that usually comes with it.

Discussing MG treatment costs with your care team

Wouldn’t it be wonderful if your money concerns were in your medical chart right alongside your symptoms and lab results? They should be, because they’re directly connected to your safety and treatment outcomes. It’s imperative to keep that in mind when you’re tempted to stay quiet when you run into a tall financial hurdle.

Financial strain can cause medication gaps. When a prescription becomes too expensive, patients often start stretching out doses or stop the medication altogether. For a condition where muscle weakness can escalate into a myasthenic crisis, that silence can be pretty darn dangerous.

Your doctor should be a resource ally, and care about your ability to afford groceries and your prescriptions. They need to know your real financial limits so they can build a plan you can sustain, because a treatment plan only works if you can afford to follow it well beyond the first refill.

Bringing up financial stress during your appointment

The moment you feel anxious about affording MG treatment, it’s time to talk with your provider about other options.

Talking to your doctor about medical costs in a quick appointment can feel intimidating. If your chest tightens just thinking about bringing it up, that’s a totally normal stress response. Money worries can trigger the same fight-or-flight reaction as any other threat, and it’s hard to advocate for yourself when your nervous system thinks it needs to run for the hills.

Before you walk into the appointment, try slowing your breathing for a minute or two. I know it sounds almost too simple, but slow, deep breaths send a signal to your brain that you’re safe, which can help you focus on what you need to say.

You can then start the conversation with something like:

“My current out-of-pocket expenses for [insert treatment] have become too difficult for my household budget, and I’m worried about keeping up with these costs long-term. Can we look at our choices together to ensure my treatment plan is financially sustainable for me?”

Once the conversation is open, come prepared with specific questions.

• Ask about alternative delivery paths. Moving between a subcutaneous injection at home and a hospital-based infusion (or vice versa) can change how your insurance categorizes and covers the bill.
• Ask about older, dependable options. Some generic or long-standing therapies can act as a bridge or alternative to a newer high-cost biologic. Your doctor can often request that the pharmacy default to a generic so you are not stuck negotiating between two parties yourself.
• Ask about scheduling options, if any. It may be helpful to discuss whether extending the interval between maintenance treatments is clinically safe and appropriate for you. Never adjust your own schedule to save money without your care team’s guidance.

Examples of specific questions you can bring to your next visit:

• “If we switch from a specialty pharmacy delivery to an in-hospital infusion format, how will that affect my out-of-pocket deductible?”
• “Are there generic or older alternatives available that would provide the same baseline protection for my muscle strength?”
• “Do we have any lower-cost therapeutic options to try before moving to a brand-name biologic?”

When a new treatment is on the table

You often won’t know whether a biologic or other treatment is being considered until your doctor brings it up at your appointment, so there’s no way of knowing what your exact out-of-pocket costs will be. What you can do is go to the appointment prepared to listen closely and ask questions once a specific treatment is named. Those questions may sound like:

• “Would you say this treatment has been affordable for most of your patients?”
• “I’ll call my insurance company after this to understand my financial responsibility. If the cost is outside my means, are there financial assistance programs you’d suggest I look into?”
• “If this treatment plan turns out to be beyond my financial scope, what other treatment options may be available?”

Utilizing navigators and financial assistance programs

Large medical practices or hospitals may have social workers or financial navigators whose job is untangling the financial side of your care. Knowing who they are and how to reach them can save you months of frustration. Financial navigators and social workers act as go-betweens for your pharmacy, insurance company, and medical team.

Ask your clinic whether one is available to you. You can send a simple message to your provider for help:

“Dear [Provider Name], I am currently facing significant financial strain regarding my MG therapies, and I want to explore our options for manufacturer copay cards, foundation grants, or patient assistance programs. Could you please connect me to a financial navigator or social worker? Thank you for your help.”

If your provider’s office doesn’t offer those services, here are some financial programs to explore on your own or with help from a loved one or friend.

• Manufacturer copay programs can offer meaningful savings on brand-name MG biologics. Companies often run their own patient support programs that can help determine if you’re eligible for assistance.
• Independent, disease-specific foundations can be a good resource as well. The Myasthenia Gravis Foundation of America (MGFA) maintains an updated financial and support assistance page, and organizations like The Assistance Fund run a program specifically for MG that can help with copays, coinsurance, deductibles, premiums, and even travel. The PAN Foundation also runs MG-specific copay and premium assistance funds, and recently announced it is merging with the Patient Advocate Foundation. Check out both organizations’ current websites for the latest application process.

If your bills still feel unmanageable after exploring these options, an independent patient advocate may be able to help you. Look for someone who is a board-certified patient advocate with specific experience in medical billing advocacy. Directories like the National Association of Healthcare Advocacy and Greater National Advocates are good places to start your search.

Essential next steps for patients

• Log your exact out-of-pocket totals. Spend 15 minutes in your insurance portal (or on the phone with a representative) writing down your copay and premium costs from the last three months.
• Message your provider’s office. Send a quick portal request to ask whether your neurology office has a designated financial advocate on staff who can review open assistance grants with you.
• Bookmark resources. Whether it is MGFA’s assistance page, The Assistance Fund, the PAN Foundation, or your medication’s manufacturer support program, having a short list ready means you are not starting from scratch the next time a bill catches you off guard.

In the exam room, it’s easy to feel like your provider deals the hand and you have to simply take the cards you’re given. As patients, we should try to remember that every player at the table — providers, insurance companies, social workers — has cards to play, including you. The documented information, scripts, and questions you empower yourself with are your cards. You’re an active player at the table, and your hand matters just as much as anyone else’s.