Life After Liver Transplant: Lorrinda Gray-Davis on Medication Access and Patient Support

For many people, a liver transplant feels like a finish line. For Lorrinda Gray-Davis, it was only the beginning.

Six months after she moved back to Oklahoma, Lorrinda was diagnosed with end-stage liver disease. Less than three months later, she learned she had inoperable liver cancer. On August 8, 2018, she received a liver transplant that saved her life and changed it forever.

Today, Lorrinda is a liver cancer survivor, a transplant recipient, and the president of TRIO. She uses her own experience to help patients and caregivers face life after transplant. This is her story, and how it led her to build tools that help patients pay for the medicines they need.

From patient to advocate

Life after surgery was not simple for Lorrinda. A transplant patient leaves the hospital with a lifelong medication schedule, constant monitoring, and a health care system that can feel hard to navigate.

Lorrinda took handfuls of pills every day. When she counted them, she found she took more than 10,000 pills in a year.

Her transplant advocacy grew from that experience. Today, she serves as president of TRIO and as vice chair of the Patient Affairs Committee for the Organ Procurement and Transplantation Network (OPTN). She also speaks and writes to help others facing transplantation.

The challenge of medication costs

After Lorrinda switched from commercial insurance to Medicare, her medicines became a financial struggle. One prescription was quoted at around $624. Even with insurance, the price was still $195.

The price dropped to $10 only after Lorrinda found a manufacturer copay card on her own.

As she puts it, the help had always been there. The problem was knowing how to find it.

Medication costs after transplant can stop patients from filling the prescriptions they need. Many patients never learn which programs could help them.

The Transplant Medication Navigator

Lorrinda created the Transplant Medication Navigator to close that gap. It is a free online platform that helps transplant patients bridge the distance between a prescription and the medicine in hand.

The site offers a searchable database of pharmaceutical copay cards and patient assistance programs (PAPs) for transplant medications. Patients can use it to identify and access financial support, including transplant medication assistance.

The app also helps users understand medication costs and provides step-by-step guidance for filling out patient assistance applications. Lorrinda's goal is simple: reduce frustration, save money, and give patients a practical way to manage their care.

"I knew how to find help," Lorrinda says. "But I realized most people don't. And they shouldn't have to figure this out alone."

The power of peer support

Lorrinda's advocacy started with TRIO, a nonprofit organization for transplant recipients and their families. She joined just five months after her transplant. She soon became a driving force and helped establish the Oklahoma chapter with her friend Karen Hoyt.

For years, Lorrinda has helped patients and caregivers through the post-transplant process. TRIO offers peer-to-peer support, education, and advocacy resources. This kind of liver transplant patient support helps people feel less alone.

TRIO is an international nonprofit approaching its 40th year. Patients there can learn about post-transplant care, connect with peers, and build the knowledge to take control of their health. Lorrinda has focused much of her work on tools that help patients manage transplant medications.

Helping patients navigate life after transplant

Lorrinda's work shows what patients can do after transplant. Her advice comes from her own life, not a textbook.

To start, patients can:

• Join a TRIO group or online support forum.
• Talk with their transplant coordinator about support groups in their area.
• Use the Transplant Medication Navigator to look for copay cards and patient assistance programs.
• Share these tools with a caregiver or loved one.

As Lorrinda's story shows, a transplant is a journey best taken with others.

Discover more patient stories on LiverDirectory

Lorrinda's story is one of many on LiverDirectory. Read more patient stories on the LiverDirectory blog.

Disclaimer: Medication assistance programs have their own eligibility rules, and availability can change. Talk with your transplant team, your pharmacist, or your health insurer before you apply for any program. Nothing in this article replaces guidance from your health care professionals.

Visit the Transplant Medication Navigator at transplantmedicationnavigator.com to search copay cards and assistance programs. Learn more about TRIO at trioweb.org.