When community members, patients and advocates come together to shape state-level policies, lived experience becomes the foundation for lasting healthcare reform.
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As we look at the for-profit industries driving the U.S. economy, it appears that each of them needs an overhaul of outdated systems. Healthcare is top of mind amid rising premiums and deductibles, as well as the unaffordable cost of medications.
Roughly one in five adults (21%) report leaving a prescription unfilled due to cost, and about one in four (23%) say they’ve turned to over-the-counter substitutes instead. Nearly one in seven admits they’ve split pills or skipped doses in the past year to save money, according to KFF, the independent source for health policy research, polling and news.
The problem deepens when patients face life-threatening diagnoses. Cancer treatment exposes how profit-driven policies and outdated coverage rules can stand between patients and care that’s already proven to work. Few examples illustrate this better than scalp cooling, a therapy that helps patients keep their hair through chemotherapy. Despite its proven benefits and FDA clearance, most insurers continue to classify it as “cosmetic,” leaving thousands to pay out of pocket.
This reveals deeper structural flaws in for-profit healthcare and the politics of medical coverage.
The Power Of Partnership: A Patient, A Doctor, A Delegate
When Rossalynn Ripper, a Maryland resident, was diagnosed with breast cancer in 2024, her initial focus was survival. But she quickly discovered that surviving also required navigating a labyrinth of insurance rules. “I was devastated,” she said. “The first thing that I thought about was, how am I going to survive this and continue working? I’m an executive. I’m the president of a company. I’m a mom. How am I going to do all of this with no hair?”
Fourteen percent of women refuse chemo treatment out of fear of losing their hair and the overall impact.
Rossalynn Ripper testifying at the Maryland General Assembly in March 2025 for Maryland House Bill 1187, requiring insurance companies to pay partial or full coverage for scalp cooling.
courtesy of Rossalynn Ripper
Her oncologist at Luminis Health Anne Arundel Medical Center, Dr. Young Lee, mentioned scalp cooling, a treatment that can dramatically reduce hair loss during chemotherapy, but warned it wasn’t covered by insurance.
“I paid $2,400 out of pocket,” Ripper said. “Insurance companies tell women it’s cosmetic, and that’s why it’s not covered. Who are they to make that decision for us?”
Ripper soon learned through support groups that women across the country faced the same denial. “It’s not just a Maryland issue,” she stated. “It’s across the United States.” Around that time, she learned that LaToya Nkongolo, District 31—Anne Arundel County, Maryland State Delegate, was introducing a bill requiring insurers to cover scalp cooling.
“I immediately reached out to her and insisted, ‘I must be involved.’ I was in chemo when I testified before the Maryland General Assembly,” Ripper continued.
From Testimony To Movement
Ripper’s testimony gave voice to what many lawmakers had never heard directly: the psychological toll of treatment and the inequity of access. “A person’s mental health is critical,” she said. “Going through chemo is horrible. But if you go into it knowing your hair is staying intact, it helps you get through the process. Why wouldn’t anyone want that for a loved one?”
That hearing drew attention from oncologists, local media and patient advocates. Lee joined Ripper’s efforts. Together, the two began organizing a coalition of patients and supporters.
Ripper emphasized, “I’ve made it my mission to get this legislation passed.”
Scalp cooling advocates being interviewed by WUSA9 News in September 2025. Left to right: Dr. Young Lee, Hematology/Oncology, Luminis Health Anne Arundel Medical Center; Rossalynn Ripper, Scalp Cooling Advocate/Chemo Patient, Randi Ayala, Reporter WUSA9 News; LaToya Nkongolo, Maryland State Delegate/District 31 Anne Arundel County and photo credit to Kostiantyn Golubchyk
courtesy of Rossalynn Ripper
“It’s not just the loss of hair but also the loss of privacy, identity and control,” explained Lee. “Providers can educate and train the nursing staff on the benefits of scalp cooling as well as the best practice protocols. Providers can write insurance appeals and support policy changes. The healthcare team can partner with non-profit organizations that advocate for coverage and provide patient grants.”
Maryland’s House Bill 1187 received broad support in 2025 but was ultimately tabled after insurers requested more time to study potential financial impacts. Rather than seeing it as a setback, Ripper saw it as momentum. She smiled, “We’ve got more than 25 women ready to testify when it comes back [on the table] in 2026.”
This grassroots organizing is beginning to echo nationally. New York became the first state to pass a scalp-cooling coverage mandate for breast cancer patients, effective January 2026, and Louisiana and Massachusetts are in the process of moving similar bills forward.
Each of these wins shares a pattern: a coalition of patients, physicians and lawmakers pushing in unison against a system built to resist change. Their combined efforts reveal that when medical insight, personal experience and legislative authority align, even the most entrenched policies can begin to shift.
Why It Matters
At its core, this movement is about redefining what “medical necessity” means.
For decades, insurers have covered wigs as a cosmetic remedy for chemotherapy hair loss, while denying coverage for the very treatment that could prevent it. The distinction reveals how outdated frameworks fail to account for quality of life, mental health and dignity in care.
Change doesn’t begin with policy experts. It begins with lived experience. Ripper’s story is part of a broader shift: patients using personal narratives to drive legislative change, doctors backing them with clinical credibility, and delegates converting those stories into law.
“I placed myself in the position of someone facing a cancer diagnosis and reflected on how I would feel if it were my own experience or that of a loved one,” Nkongolo commented. “Chemotherapy is a lifesaving treatment, but it comes at a significant cost. For many patients, hair loss is not just a cosmetic issue; it is a visible marker of illness that can impact mental health, self-esteem and even employment opportunities.”
Want To Make A Change? Here’s How to Get Involved
Transforming healthcare policy starts at the local level. Whether the issue is insurance coverage for emerging treatments, patient access to diagnostics, or reimbursement for preventive care, meaningful change begins when individuals organize around shared experience. Here are practical ways to turn personal challenges into lasting policy reform:
- Track and support healthcare bills in your state. Most coverage and access decisions are made by state legislatures. Reach out to your state delegate or senator to share why these measures matter and ask where they stand.
- Build coalitions that bridge expertise and experience. Change moves faster when clinicians, patients and advocates work together. Physicians bring clinical authority, while patients bring lived impact; together, they form the human and scientific case lawmakers need to hear.
- Frame the issue in terms of equity and public benefit. Tie your advocacy to measurable community impact rather than individual hardship alone.
- Understand the reimbursement and regulatory process. Effective policy requires an implementation plan. Learn how coding, billing and insurance rules shape access to care. Work with medical associations or advocacy nonprofits to understand how your proposal could fit within existing systems.
- Use storytelling and media strategically. Share experiences through local media, community forums, or advocacy organizations to make invisible barriers visible to voters and legislators alike.
- Be persistent. Most bills take multiple sessions to pass, and each setback can be a stepping stone. Between sessions, gather new data, expand alliances, and refine your argument. Persistence—not perfection—moves reform forward.
