Peggy Carter: proud to use her voice

Imagine your arm being so weak you can’t carry a purse. Imagine your eyelids feeling so heavy you can’t read a book or pay your bills. Imagine needing to be extra careful with what and how you eat for fear of choking.

Peggy Carter of Virginia Beach, Virginia, doesn’t have to imagine, as this has been her life since she developed myasthenia gravis (MG) in 2017. MG is a chronic and progressive rare neurological disease that impacts her sight and every voluntary muscle in her body.

It’s also an elusive disease, one that took about four years to diagnose after a bout with Lyme disease led to these symptoms. Once Peggy had answers, her doctor prescribed a medication to strengthen her muscles, which “gave me my life back.”

That life near the ocean includes spoiling her three young grandchildren, who “are the love of my life and melt my heart every day.” Peggy also enjoys caring for her dog Buckeye (named after the Ohio State football team), playing on a shuffleboard league, and scrapbooking.

At first, the cost of myasthenia gravis medication was manageable for Peggy. But when the drug was reclassified as tier 2 instead of tier 1, her annual out-of-pocket cost skyrocketed to $10,000—much more than she could afford on her fixed income. By that time, she had retired from her successful banking career and was on disability due to lingering health problems from a car accident decades ago.

I don’t want people to go through what I went through. I have a voice, and I want to use it.”

Peggy Carter, living with myasthenia gravis

Peggy and her doctor tried everything they could think of to obtain her myasthenia gravis prescription medication at a lower cost, from getting extra free samples to negotiating with the drug manufacturer and her prescription drug program. Nothing worked—and Peggy’s income was just above the Medicaid threshold, so she didn’t qualify for that either.

As the expense ate into her food budget and other essentials, she started taking much less than the prescribed dose, even breaking pills in half. For about seven months, she stopped taking the medication entirely—and her symptoms quickly worsened.

Panicked, Peggy called one resource after another. That journey eventually led her to the PAN Foundation, and within minutes, she was approved for a PAN copay grant.

“I couldn’t even talk because I was crying so hard, and I’m not a crier. I could not believe that there were foundations that could cover your copays for the entire year,” said Peggy. She also benefits from PAN’s program to reimburse patients for their health insurance premiums and PAN’s transportation grant, which is especially helpful because she is currently unable to drive.

Now, Peggy is determined to pay it forward for the many other Americans who cannot afford their life-saving medications. She eagerly applied to join PAN’s September 2024 Advocacy Action Summit and tell her story in Washington, D.C.

“When they told me that I had been chosen, I was like a kid at Christmas I was so excited,” Peggy said.

Walking around Capitol Hill all day wasn’t easy for Peggy, given her MG, but she pushed through. She met fellow patients from all around the country, each with their own story but a common thread. And she relished the chance to meet with legislators from Virginia and their staff. She asked them to imagine what it’s like to be in her shoes, then asked them to support key bills to help make healthcare more affordable and accessible.

Peggy hasn’t stopped there. Today, she is a proud member of PAN’s Patient and Family Advisory Council, a group of family members, friends, and caregivers who serve as key ambassadors and advisors to the foundation’s work.

Some days with MG are easier than others, Peggy shared. Eventually, the autoimmune disease will affect her ability to breathe. She also experiences chronic migraines and back pain stemming from that long-ago brush with a drunk driver.

Despite all that myasthenia gravis has taken from her, Peggy accepts herself as she is and insists on staying positive. Giving back gives her hope.

“I will do whatever I can do to help [PAN] push the mission forward because I don’t want people to go through what I went through,” Peggy said. “I have a voice, and I want to use it.”