From Diagnosis to Cure: A Story of Hepatitis C Advocacy (Copy)
When Lorren Sandt first heard the words "hepatitis C," her life changed in an instant. It was 1999. Her brother had just received a diagnosis. At the time, neither of them knew what the disease was or what it meant.
While at the Cleveland Clinic for the news, they felt shocked and scared. They went straight to the medical library, but the information they found made things worse. Every source claimed her brother would likely die within five years.
They sat together and cried. In that moment, Lorren made a decision: she would learn everything she could and act.
A Beginning Born From Urgency
Lorren never planned to become an advocate. She did not dream of starting a nonprofit or working in public policy. However, her brother's diagnosis pushed her into action.
She began by researching hepatitis C, seeking answers and hope. The more she learned, the more she recognized a systemic problem:
Ignorance: Very few people understood the disease.
Invisibility: Many people remained undiagnosed.
Scarcity: Research and education lacked funding.
Silence: No strong, united voice pushed for change.
So Lorren helped create one. She co-founded the Caring Ambassadors Program. While the program initially focused on both lung cancer and hepatitis C, Lorren soon realized that people needed community just as much as information. She believed in a simple, powerful truth: people have more strength when they work together.
Building a Community, Not a Competition
In the early days, many health groups worked in isolation. Resources were scarce, and organizations often competed for funding and attention.
Lorren saw a different path. She brought 27 organizations together to form the first hepatitis C advocacy council. Most had little funding, but together, they possessed collective strength. Instead of competing, they collaborated, shared knowledge, and supported one another. This approach built momentum at a time when the world largely ignored hepatitis C.
Fighting for Recognition
The early years of advocacy presented massive hurdles. At least 75 percent of people with hepatitis C did not know they carried the virus. Public awareness remained low, and government funding stayed small. At one point, the Centers for Disease Control and Prevention (CDC) held only $15 million for all hepatitis programs combined.
Even worse, stigma haunted the disease. Some institutions blamed patients for their illness. The Veterans Administration once labeled hepatitis C "willful misconduct," a term they used to deny veterans treatment because they linked the illness to drug use or other service-related behaviors.
Lorren and her fellow advocates pushed back. They explained that many veterans encountered contaminated blood during wartime. Since medical professionals did not remove hepatitis C from the blood supply until 1992, exposure was rarely a choice; it resulted from circumstances beyond the veterans' control.
Lorren made one thing clear: no one deserves hepatitis C.
Taking Advocacy to Washington
Despite having no background in policy, Lorren stepped into the world of legislation. She pushed for the first hepatitis C bill in Congress. Although the bill did not pass, it marked a turning point by generating attention and momentum.
The bill gained bipartisan support from leaders like Ted Kennedy. For Lorren, the introduction of the bill felt like progress—it proved that change was possible. Over time, that momentum produced real results:
National Strategy: Agencies created a national hepatitis plan.
Seriousness: Government bodies began to prioritize the issue.
Growth: Funding and awareness increased significantly.
A Personal Victory
While Lorren fought for policy change, she never lost sight of her brother. When he first received his diagnosis, he had only a 25 percent chance of a cure using harsh, interferon-based therapy.
Lorren and her family built a team of doctors from different specialties. They searched for every possible option and prepared for future treatments. As his condition worsened, they decided he would try the available treatment.
It worked.
After years of uncertainty, her brother tested negative for the virus. That moment remains one of the most meaningful in Lorren's life, and it fuels her continued work. She believes every family deserves that outcome.
Breaking Down Stigma
Stigma remains a significant challenge, but Lorren tackles it head-on. For more than a decade, she has taken testing directly into communities. At public events, she stands in the open to encourage testing rather than hiding behind booths or in quiet spaces.
Her message is clear: if you have blood, you are at risk. Hepatitis C does not discriminate; it can affect anyone. By speaking openly, Lorren normalizes conversations about the disease and replaces fear with knowledge.
Real Progress, Real Hope
Today, the landscape looks very different. Cure rates now exceed 95 percent. Treatments are shorter, safer, and more effective.
In Oregon, Lorren has helped remove major barriers to care. Patients no longer face strict requirements like prior authorizations or sobriety rules. Care has expanded through telemedicine, and outreach teams bring testing directly to underserved communities.
These changes did not happen overnight. Lorren and her team spent nearly ten years attending meetings and presenting data. They showed up again and again until the system changed.
A Winnable Battle
Lorren believes we can eliminate hepatitis C. She compares it to smallpox and polio—diseases that public health efforts once widespread but eventually controlled or eradicated.
However, elimination requires persistence. It requires people who are willing to speak up, attend meetings, and push for reform. As Lorren puts it, sometimes you have to be the "squeaky wheel."
Advice for Future Advocates
For those who want to get involved, Lorren offers simple advice: start by joining an existing organization. Many groups already perform vital work in policy and patient support; they simply need people who care.
While starting a nonprofit may seem appealing, it is a difficult road. You can make a more meaningful impact by strengthening what already exists. If you prefer a different path, advocacy can begin with a simple phone call to an elected official.
Every voice matters.
A Legacy of Impact
Lorren Sandt did not set out to become an advocate, but necessity called her to the role. What began as a search for her brother's survival turned into a lifetime of impact. She helped build a national movement, changed policies, and saved lives. Most importantly, she gave hope to families facing the same fear she once felt.
Her story proves that when one person decides to act, even in the face of uncertainty, change is possible.