Tori Geib was diagnosed with stage IV breast cancer the week of her 30th birthday. Soon after, she underwent surgery on her spine that left her unable to return to work as a hospital catering chef – and without her employer-based health insurance.
“I had to retire from my job at 30 years old,” Geib, 34, told Al Jazeera. “Being in an entry-level position, you don’t have a lot built up. Going on disability, I lost my insurance from my employer, and I made just over the amount that you needed to qualify for the Medicaid programme, so I was uninsured my whole first year of treatment.”
Geib did not know she had lost her insurance coverage until the pharmacist rang up just one of the drugs she needed to take each month to survive, and told her it came to $11,000 out of pocket.
“Before you know there are programmes out there that can help, the first thing that goes through your mind is: Can I afford to survive?” Geib said. “Without the assistance programme, I would have gone through my entire yearly salary within about three months to pay for my medication. Just the one medication was $11,000 per month, and over that first year, I was on 13 different medications.”
For people like Geib, who are living with metastatic cancer, the pandemic – and the economic fallout it has already caused – are just two more hurdles in an already long, stressful and costly journey.
Most new cancer drugs in the US are priced at more than $100,000 per patient per year, according to the National Cancer Institute, with some price tags reaching $400,000. But while the National Cancer Institute found that 90 percent of people in the United States believed cancer drugs are too expensive, costs have continued to rise – and so have patients’ anxiety levels.
Before the pandemic, 24 percent of US adults said it was difficult to afford all of their prescription drugs, according to a poll by the nonprofit Kaiser Family Foundation (KFF), and that number doubled for people whose prescriptions cost more than $100 a month.
“People with a lot of health problems are much more likely to say that they have problems affording their prescription medicine, and the flip side of that, too, is we see people making decisions about how and whether to take prescription drugs based on the cost,” Liz Hamel, KFF’s vice president and director of public opinion and survey research, told Al Jazeera.
Pre-pandemic, Hamel said, three in 10 people said they had not filled a prescription, had skipped doses or taken an over-the-counter drug instead of the one a doctor prescribed “and they did those things specifically because of the cost they had to pay.”
Now, amid the coronavirus crisis, over half of people in the US said they have lost a job or had their income reduced due to the coronavirus, a KFF poll found, and 29 percent said they have fallen behind on bills or struggled to afford expenses like food or health insurance coverage since February.
Already, there had been a huge increase in deductibles for employer-sponsored health insurance plans, Hamel said.
We see people making decisions about how and whether to take prescription drugs based on the cost.
And with those higher-deductible plans, sometimes “it only takes one medical emergency to really put people in either a significant amount of medical debt or in a situation where they can’t afford the treatment that they need,” said Julie Kennerly-Shah, the assistant director of pharmacy at the Ohio State University Comprehensive Cancer Center – Arthur G James Cancer Hospital and Richard J Solove Research Institute.
As lockdowns continue, more and more people are out of work and losing their health insurance. Some 20.5 million jobs were lost in April alone, and those who became unemployed in the last two months would fill all 30 sport stadiums 16 times over, an analysis by the Economic Policy Institute found.
A KFF analysis found 26.8 million people became newly uninsured after losing their jobs, some of whom may be eligible for Medicaid or insurance under the Affordable Care Act. But gaps in coverage exist, and that means the number of people who may need help paying for their medication is likely to rise, too.
A programme run by the Ohio State University Comprehensive Cancer Center – Arthur G James Cancer Hospital and Richard J Solove Research Institute is hoping to help by allowing patients to directly donate their unused cancer drugs to those in need.
The first-of-its-kind programme receives donated pills, which undergo an eight-point inspection before being added to a repository and re-dispensed, said Kennerly-Shah. And there is a real need for them.
“More and more evidence is showing us that the financial toxicity that patients experience after a diagnosis of cancer can be just as stressful and as challenging as the medical or physical experience,” Kennerly-Shah told Al Jazeera. “A recent study actually showed that at year two post-cancer diagnosis, almost 50 percent of patients have depleted their life savings.”
That was true pre-pandemic, and Kennerly-Shah expects demand for reduced-price drugs to grow as stay-at-home orders are lifted, and the economic fallout from the virus continues. The programme has taken extra precautions during the COVID-19 crisis by sanitising bottles and quarantining them for 14 days before re-dispensing them.
“With the economic uncertainty with COVID-19, repository programmes that increase patient access to affordable cancer medications are even more important,” Kennerly-Shah said.
Typically, once drugs leave the pharmacy, they cannot be recollected and redistributed. So, even if a metastatic cancer patient like Geib has a month’s supply left of an $11,000 drug, it goes in the rubbish.
The Ohio programme changes the rules to allow bottles that have been opened to be donated, and hopes to become a model for other cancer centres across the country. Geib said she plans to donate her unused oral chemotherapy drugs soon.
“To be able to give that to another patient so they can use it, rather than just having to throw that away, it really helps the whole community,” she said.
Now on her eighth line of treatment, the COVID-19 crisis has limited Geib’s options. Clinical trials that could have been a good fit have been suspended, she said, and at the outpatient centre near Columbus, Ohio, where she’s currently receiving IV chemotherapy, everyone wears masks and patients cannot bring a support person in with them.
“Any time you have the experience of knowing you have to switch treatments, the panic sets in,” Geib said. “It’s not only about, will my insurance cover this? But in the environment of COVID-19, you have the question of, will I have access to what will give me the best chance of survival when I need it? The anxiety of the unknown road in treatment is amplified.”
Ohio has seen more than 24,000 confirmed cases and more than 1,300 confirmed deaths from the coronavirus so far, and immunocompromised people are at higher risk. But Geib continues to stay hopeful even amid the health and financial challenges she faces.
“I know I’m overall very lucky to have all the support that I do,” she said. “There are patients who are choosing to forgo treatment or wondering if they will be paying for groceries or medications.”