The financial burden for cancer patients looking for hope and why it hurts us all when they can’t pay

Brittani (left) Marilyn, Brianna

Brittani Powell was 12 years old when she was diagnosed with Giant Cell Tumor. Her mom, Marilyn got the news no parent wants to hear: there was no hope. Doctors suggested Brittani stop all surgeries. They gave her 6 months.

But Marilyn wasn’t ready to lose her daughter. Desperate for help, she went online and found a clinical trial for Brittani, offering a drug that might save her. However, the study was in Los Angeles, a 10-hour drive from their Sacramento area home, and the trial would likely last several years. Mom would not be able to continue working. Where would they stay? How would they maintain their home? Would she lose her job permanently? How could they cover their expenses and pay all the costs that would add up? It would throw their family finances into disarray. Even Marilyn’s good friends advised her to be realistic and let nature take its course.

Stories like Brittani’s are disturbingly common. The financial burden that often follows a cancer diagnosis can be overwhelming, impacting not only the family budget, but also the patient’s health. Many don’t realize that if Brittani could take part in that clinical trial, it’s not only an opportunity for her; it’s an opportunity for the drug company and for millions of cancer patients worldwide.

According to the National Institutes of Health, only 4–6% of patients participate in cancer clinical trials. Dana Dornsife, President of the Lazarex Cancer Foundation, a California based non-profit that reimburses low-income patients for out of pocket expenses that add up during a clinical trial, says one reason patients don’t take part is they can’t afford it. “We need to help patients get to the trials. They aren’t conveniently located. The patients can’t do it on their own.” And when patients get funding, Dornsife says, “it helps the patient stay engaged in their care, the drug companies get their drugs to market faster and it saves them money.”

It’s an issue now grabbing the attention of leading oncologists and lawmakers. Funding the patient in drug trials was discussed at the annual ASCO (American Society of Clinical Oncology) meetings in Chicago recently and will be raised again at ASCO in Alexandria, Virginia in July. The meetings bring together oncology professionals from around the world to discuss breakthrough treatments and ongoing controversies in the field.

Last month in Texas, state legislators tried passing a bill that would have provided reimbursement to patients like Brittani for travel and lodging expenses related to clinical trials. Lazarex Cancer Foundation authored that legislation.

“It’s hope.” said Dana Dornsife, President of Lazarex. She says funding the patients is essential. This year alone, Lazarex has helped pay for 625 patients nationwide to get to drug trials. “Having a financial disadvantage is a huge barrier and that has to stop.” Dornsife points out only the clinical trials that are fully enrolled with patients have the chance of producing life saving drugs. “Until we recognize this problem and help patients get to clinical trials, we will not progress in our effort to find a cure.”

Representative Tan Parker, who introduced the Texas legislation said, “Cancer clinical trials provide a chance at life. I don’t want to see people walk away from a trial because they can’t afford the transportation to get there. It’s time to increase patient access.” Providing funding, he believes, is the key.

Dornsife says pharmaceutical companies need to step in and help. “Clinical trials are a critical part of the research process, so funding patients in clinical trials should be considered part of research funding.”

Representative Parker said, “I was very impressed with Lazarex and what they’re doing. It fueled my desire to make this type of access possible.” But while Parker’s bill sailed through the House, the state legislature adjourned before both sides could come to an agreement.

Dornsife isn’t done in Texas. Lazarex will try again next session. Last year they successfully helped push through a similar bill (AB1823) in California. Next, they have their sights set on Pennsylvania, Florida, and Massachusetts.

The goal is to help people like Brittani. Fortunately, Marilyn found Lazarex before it was too late. Like they have for thousands of patients, Lazarex paid for Brittani’s transportation, lodging and other expenses so she could afford to participate in the study, and take the experimental life saving drug that would eventually knock the cancer out of her body.

Today, 8 years later, Brittani is a sophomore at Sacramento State University. She has been declared cancer free and the drug she has been taking, denosumab, has received FDA approval. Now, instead of being fixated on her cancer, Brittani is focused on her future and her goal of becoming a doctor.

With the critical work of Lazarex, and some outside-the-box thinking about how we help cancer patients with the high costs of reaching for hope, stories like Brittani’s may become more common.

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