MS Does Not Have Me: One Patient’s 27-Year Journey Living with Multiple Sclerosis

QuickRx Specialty Pharmacy and the MS Foundation: Why We Work Together

At QuickRx Specialty Pharmacy, filling a prescription is only one part of what it means to support a patient. People living with Multiple Sclerosis face challenges that go well beyond the pharmacy counter. From navigating a life-changing diagnosis to understanding treatment options to finding financial help for medications that can cost thousands of dollars a month, the obstacles are real and they are ongoing.

That is why we are proud to work alongside the MS Focus: Multiple Sclerosis Foundation, a nonprofit organization dedicated to improving the quality of life for people living with MS through programs, services, education, and research. The Foundation offers a range of free services to patients and their families, including peer support, wellness programs, and direct assistance for those in need.

Our partnership with the Foundation is grounded in a shared belief: no patient should have to face MS alone, and no patient should have to choose between staying on their medication and paying their other bills. When patients come to us through the Foundation’s network, or when they find us on their own during a moment of financial uncertainty, our patient navigators are here to help them find a path forward.

March is MS Awareness Month, and in recognition of that, we sat down with one of our own patients, Maggie Courier, who also volunteers at the MS Foundation. Her story is one that newly diagnosed patients need to hear.

Meet Maggie: More Than Half Her Life with MS

Maggie Courier is 54 years old. She has lived with Multiple Sclerosis for 27 years, which means she has now had MS for longer than she lived without it. In that time, she built a career, owned her first home, got married on her own terms, and became a writer, an advocate, and a source of support for hundreds of other MS patients.

She is not what most people picture when they hear the words “chronic illness.” She is sharp, warm, direct, and completely unwilling to let MS define her ceiling.

“I have MS,” she says. “MS does not have me. It’s the most true cliche I know.”

She sat down with Julia Kravtsova, PharmD, Head Patient Navigator at QuickRx Specialty Pharmacy, to share her story with patients who may be at the very beginning of theirs.

The Diagnosis: 26 Years Old, No Roadmap

Maggie was working in marketing and public relations when the first symptoms appeared: numbness in her leg and double vision. Her family, which includes medical professionals, pushed her to see doctors right away. The road to diagnosis involved MRIs, specialist appointments, and a lot of uncertainty.

When her neurologist called with the results, he told her they were positive. Maggie thought positive was a good thing. It was not.

She froze. She went home. She gave herself a few minutes to process it, and then she made a decision. She was not going to stop. She started treatment the very next day.

“This is something that stops part of your life,” she says. “It does not stop your life.”

At the time of her diagnosis, the treatment options for Multiple Sclerosis were limited to what were known as the ABC drugs: Avonex, Betaseron, and Copaxone. She was placed on Avonex first, relapsed within six months, and then transitioned to Copaxone (glatiramer acetate). That same medication has been part of her daily routine ever since.

One piece of advice she offers to every newly diagnosed patient: do not spend hours reading worst-case scenarios online. What you find in a general internet search is not a prediction of your life. MS looks different for every person, and the information available today is far more nuanced than what Maggie encountered 27 years ago.

“Do not find information online and think that’s your life,” she says. “It’s not your life.”

Building a Full Life Alongside MS

After her diagnosis, Maggie did not slow down. She pursued a career in education, spending 17 years as a high school journalism and English teacher. She owned her first home by 30. She got married in her mid-40s. She published articles. She kept going, not because MS was easy, but because she refused to let it become the reason she stopped.

She eventually retired earlier than planned because of symptoms, but even that transition became something meaningful. She began writing freelance, contributing articles to the MS Foundation, and eventually taking on a direct patient support role. She now goes into the Foundation’s office one day a week and calls it the thing that keeps her feeling purposeful.

The biggest surprise of her MS journey? Not the struggles. The strength.

“I didn’t realize how strong I am,” she says. “I had been told, oh, it’s terrible. You’re going to lose so much of your life. My biggest surprise is the strength and power I found that I never knew I had.”

The We Care Program: Peer Support from Someone Who Gets It

Through the MS Focus: Multiple Sclerosis Foundation, Maggie leads the We Care program. When someone is newly diagnosed and reaches out to the Foundation, they have the option to speak with Maggie directly: a person who was diagnosed with MS herself, who has managed the disease for nearly three decades, and who chose to turn that experience into something useful for others.

The Foundation has staff who are trained to listen and provide information. But Maggie brings something different. She understands the fear from the inside. She has sat where newly diagnosed patients are sitting. That is not something that can be taught.

“They can call and talk to someone who works in program services, but they’re not diagnosed,” she explains. “I’m diagnosed. As much as somebody can help you by listening, they can’t understand it on the same level. I’m part of the party.”

Some calls are practical. Others are just a patient needing to hear a calm voice. Maggie shows up for both. She has an email address. She returns messages. She is there.

The work gives back to her as much as she gives to it. “It makes me feel like there’s a good point to my life,” she says. “MS is nothing good, but I will always look for the silver lining.”

When Medication Costs Became a Crisis

When Maggie retired, she lost her employer-sponsored health insurance. There was a gap before her Medicare coverage began, and during that window, her Copaxone would have cost over $6,000 per month out of pocket.

She had been on this medication since shortly after her diagnosis. She had never missed a dose in more than two decades. The idea of stopping was not something she was willing to accept.

She contacted patient assistance organizations one after another. Each one gave her the same answer: yes, we have programs. No, we don’t have availability right now. We’ll put you on the waiting list. Three or four times, the same answer.

Then she found a listing asking whether she had Medicare and needed help covering her Copaxone. She clicked yes. Hours later, she was on the phone with Julia at QuickRx.

She was skeptical. She had heard variations of this before. But Julia walked her through the PAN Foundation copay assistance program, helped her correctly document her income as a retiree (not her prior working income), and confirmed that she qualified. She was enrolled and covered, not for the brand name, but for the FDA-approved generic glatiramer acetate, the same exact medication she had always taken.

“I felt like I was living in a fantasy,” she says, “because it could not be the case.”

She has had full coverage ever since. To learn more about how QuickRx helps patients access financial assistance for Copaxone and glatiramer acetate, visit our copay assistance page.

What the Future of MS Looks Like

Maggie has watched the treatment landscape for Multiple Sclerosis change dramatically over the course of her diagnosis. When she was first diagnosed, three medications existed. Today, there are dozens of options across multiple drug classes, several delivery methods, and a global research community that understands MS in ways that simply were not possible in the 1990s.

She follows the science closely through her work at the Foundation and her ongoing writing, and she is particularly hopeful about research into myelin repair. Current disease-modifying therapies can slow or prevent new damage, but they cannot restore what has already been lost. Research into rebuilding the myelin sheath, the protective coating around nerve fibers that MS destroys, could change that in meaningful ways.

“If I could stop progression because of the repair,” she says, “that’s something.”

She is also watching the intersection between MS and other autoimmune diseases with interest. As researchers identify shared mechanisms across conditions, she hopes that a common thread will eventually lead to breakthroughs that benefit patients across multiple diagnoses.

According to the National MS Society, research into progressive MS, neuroprotection, and myelin repair is among the most active areas of MS science today. And the MS Focus Foundation continues to support research and patient programs that directly improve quality of life.

Maggie does not know when breakthroughs will come. But she plans to be here to see them.

For Anyone Who Was Just Diagnosed

If you received an MS diagnosis recently and you are reading this, Maggie’s message is direct.

Give yourself a moment. Then move forward.

Find a neurologist you trust. The neurologist who diagnosed Maggie was her doctor for 26 years before he retired last year, and she found a new one who is among the top in the field. The right doctor makes a real difference.

Do not diagnose yourself by internet. The information available online ranges from outdated to alarmist to simply inaccurate for your individual situation. Use trusted sources like the MS Focus Foundation, and your own care team.

Reach out to people who understand. The We Care program exists so that you do not have to figure this out alone. You can contact the MS Focus Foundation directly to be connected with a peer like Maggie.

And if the cost of your medication is a barrier, know that options exist. QuickRx specializes in helping MS patients access the financial assistance they qualify for, including foundation programs, manufacturer assistance, and copay support for Copaxone and glatiramer acetate. Our patient navigators are a phone call away.

Frequently Asked Questions

What is the MS Focus: Multiple Sclerosis Foundation We Care program?

The We Care program is a peer support service offered by the MS Focus: Multiple Sclerosis Foundation that connects newly diagnosed MS patients with trained volunteers who have MS themselves. Volunteers like Maggie can provide emotional support, share their personal experiences, and help patients navigate the early stages of their diagnosis. The service is free and available to anyone who reaches out to the Foundation.

How long can someone live with Multiple Sclerosis?

MS is not a terminal diagnosis. According to the National MS Society, most people with MS have a normal or near-normal life expectancy. The disease affects quality of life and function for many patients, but with modern disease-modifying therapies, many people manage their symptoms and live full, active lives for decades after diagnosis. Maggie is an example of this: diagnosed at 26, she is 54 today and still working, writing, and advocating.

What was Copaxone, and is the generic the same medication?

Copaxone is the brand name for glatiramer acetate, an injectable disease-modifying therapy for Multiple Sclerosis. Generic versions of glatiramer acetate, including Glatopa and other formulations, have been approved by the FDA and contain the same active ingredient. Maggie has been on glatiramer acetate for over 27 years and currently receives the FDA-approved generic through QuickRx with full coverage through her copay assistance program. To learn more, visit our Copaxone and glatiramer acetate copay assistance page.

What financial assistance is available for MS medications?

Several types of assistance may be available depending on your insurance situation. Manufacturer copay assistance programs can reduce out-of-pocket costs for commercially insured patients. Patient assistance programs (PAPs) exist for patients who meet certain income requirements. QuickRx patient navigators help MS patients identify and apply for the programs they qualify for at no charge.

What should I do first after being diagnosed with MS?

The first step after an MS diagnosis is to establish care with a neurologist who specializes in MS, if you have not already. From there, your care team will guide the treatment conversation based on your specific disease type, MRI findings, and individual health history.

Does QuickRx work with MS patients who are on Medicare?

Yes. QuickRx helps MS patients on Medicare access foundation grants and other assistance programs designed specifically for Medicare beneficiaries. Maggie’s situation, losing commercial insurance before Medicare began, is one we have helped many patients navigate. Call us at (917) 830-2525 and a patient navigator will review your specific situation with you.

References

1. MS Focus: Multiple Sclerosis Foundation. Programs and Services.
2. National Multiple Sclerosis Society. What Is MS?
3. National MS Society. Glatiramer Acetate (Copaxone, Glatopa).
4. U.S. Food and Drug Administration. Glatiramer Acetate (Copaxone and Glatopa) Information.
5. Mayo Clinic. Multiple Sclerosis: Diagnosis and Treatment.
6. National Institute of Neurological Disorders and Stroke (NINDS). Multiple Sclerosis.
7. MedlinePlus. Multiple Sclerosis.

This content is for informational and educational purposes only and does not constitute medical advice. Always consult your neurologist or healthcare provider regarding your MS treatment. For questions about medication copay assistance, contact QuickRx Specialty Pharmacy at (917) 830-2525.