How a Patient Advocacy Group Helped Me Afford My Medication

My Bill of Health is a series of stories about the financial strain of healthcare. To share your story, email patientstories@goodrx.com.

Twenty years ago, Sue Greene was an active 51-year-old who rode her bike daily to the no-kill cat shelter where she worked — until one morning she woke up with such severe joint pain that she couldn’t close her hands.

“It was pretty dramatic,” Sue says. “And over the next few months, nearly every joint in my body was affected.”

It got so bad that every morning, she would have to decide which hand could close enough to work the brake on her bike. 

“I would lay in bed and cry at the thought of having to stand up on [my] joints because the pain was so bad,” she says. “But then, when it was time to go to bed at night, I would cry at the thought of going to bed and having the weight of the blankets on my body.”

Without health insurance, it took the California native nearly a year to finally get diagnosed with rheumatoid arthritis at a sliding-scale clinic in Santa Maria. There, she also got a referral to a local rheumatologist, where she received the shocking news of how her new diagnosis would affect her life financially.

“In that first visit, [the doctor] explained the cost of meds,” Sue says. “They were about $65,000 a year.”

Clinical trials helped keep costs down

Sue’s doctor specialized in working with patients who didn’t have health insurance. 

“She said to me, ‘I will make sure you are never without medicine,’” Sue says. “And she got me into clinical trials.”

The first trial Sue took part in didn’t work, but the second one, for a medication called Cimzia, was a game-changer. 

“Within a couple months, I started noticing that it was helping,” Sue recalls. “It took about 6 months to get complete movement [back].”

For 6 years, Sue was able to participate in the clinical trial, getting medication for free and resuming her active life. She rode her bike, went to farmer’s markets, played with her cats, and even got a new job — working for the rheumatologist who treated her, doing paperwork and helping enroll other patients in clinical trials.

Then, the trial ended, and Sue was able to enroll in Obamacare (the Affordable Care Act), which kept her prescription costs low. 

“I was working minimum wage, so I qualified for the [cheapest] plan,” she says, which was $40 a month and covered her prescription. It was a steep discount for a medication whose cost had risen over the years to nearly $80,000.

It wasn’t until she retired in 2015 that Sue felt the full financial brunt of her condition. 

“I started panicking because I had to go on Medicare, and that's not as good coverage as Obamacare,” she says.

And that’s putting it mildly. Sue, now 72, lives on a fixed income of $1,000 per month from Social Security. Her maximum out-of-pocket yearly expenses for her Medicare Part D prescription drug plan are $12,000‚ her entire annual income. That figure doesn’t even take into account the monthly $390 she has to pay for her Medicare plan (including supplements), the copays for her doctor visits, her $400 monthly rent for senior housing, and her $50 per month dental insurance. 

“Then there’s renter’s insurance, car registration, car insurance,” she says. 

Translation? “There’s zero left for food.”

Searching for help

Instead of the relaxing retirement most Americans dream of, Sue was in a battle for her health and her life. 

She knew she needed financial support to pay for her prescriptions and live pain free, so she turned to the internet, searching for charitable funds that offered medical assistance. But that came with its own stresses.

“I call it the Hunger Games,” she says. 

Every year, starting in October, she would sit in front of her computer with all the tabs open for the various funds. She would start applying for aid at 9 AM East Coast time when the funds opened, trying to beat the mad rush of other people applying to get them because, by 9:30 AM, the money would often be gone. In good years, she would win the Hunger Games and get approved for a fund to cover the cost of her medications for the next year. But some years, she wouldn’t.

Then, one day, a flier came in the mail for a new website called FundFinder, powered by the Patient Access Network Foundation, or PAN — and it was life-changing. FundFinder is a free website that helps users track more than 200 patient-assistance funds from nine charitable organizations. 

Better still, Sue could sign up for text and email alerts every time a new fund opened and apply for it right from her phone, which meant no more sitting in front of her computer for hours on end, scouring the internet. No more Hunger Games.

‘You just have to keep fighting’

While Sue says October and the hunt for financial assistance every year still causes her stress, FundFinder has reduced that stress significantly. 

“It’s absolutely wonderful,” she says.

FundFinder has helped her financially and emotionally. It has reminded her that there are still good people in a world that she was starting to view as increasingly hostile and greedy. 

“Every single person I have talked to or met at PAN is caring, warm, helpful, supportive, understanding, empathetic,” she says. And Sue pays it forward, spending much of her time helping others. Since being on FundFinder, she’s constantly getting alerts about funds opening for various health conditions. She forwards them to friends, relatives, and neighbors who could benefit and, when needed, helps them apply.

She says she’s learned a lot of life lessons from her struggles, including the importance of resilience, and she offers two pieces of advice for others in her shoes. 

“You just have to keep fighting,” she says. And second, to check out FundFinder. “It’s the best tool out there, and you should use it as if your life depended on it, because it probably does.”

Why trust our experts?

Written by:

Colleen Oakley

Colleen has been a journalist for more than 20 years and has held editorial positions at Boating World, Marie Claire, and Women's Health & Fitness magazine.

Edited by:

Tanya Bricking Leach

Tanya Bricking Leach is an award-winning journalist who has worked in both breaking news and hospital communications. She has been a writer and editor for more than 20 years.

Reviewed by:

Patricia Pinto-Garcia, MD, MPH

Patricia Pinto-Garcia, MD, MPH, is a medical editor at GoodRx. She is a licensed, board-certified pediatrician with more than a decade of experience in academic medicine.

Our editorial standards

Meet our experts