Lois Ludvigson has been living with CML for nearly 20 years. She adheres religiously to her daily regimen of TKI medication.

“They don’t want me missing a single dose,” she said.

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There were times, though, when she thought she might have to.

“It looked really bleak for us because Gleevec (imatinib) is going up every year,” she said. “We paid $3000 or $4000 a month. We were just tallying medical bills and just trying to get by.”

They’ve both since retired and gone on Medicare. Still, even with the government program absorbing the bulk of the total, she said, she and her husband would face more than $7000 a year in prescription medicine expenses.

They found help through the HealthWell Foundation, an independent nonprofit patient assistance program that gives them up to $15,000 a year to defray a portion of her treatment cost.

“We wouldn’t be able to do it without it,” she said. “We would’ve lost everything and I would’ve had to quit treatments at the end of it anyway and my husband would’ve been left with nothing. We just couldn’t do it.”

HealthWell assists patients with a variety of diseases, not just cancer. They rely on donations, many of which come from drug manufacturers who earmark the funds for specific illnesses. Since they opened the CML fund in 2011, according to HealthWell’s president, Krista Zodet, the foundation has given out $12.35 million in grants to almost 2900 recipients.

But demand has outstripped the group’s limited funds.

The National Cancer Institute predicts about 8950 new CML cases will be diagnosed in 2017.5 And, since the majority of patients are now surviving beyond 5 years, the number of people living with CML has grown to an estimated 100,000 people in the United States alone.6

HealthWell has had to close its CML fund to new applicants, renewing grants only to existing grantees, like Lois Ludvigson.

“It’s painful to have to say we’ve reached the point where we really need to close that fund and take care only of the patients we have in there right now. That’s really difficult for us to do but it’s all driven by funding,” Ms Zodet said.

The issue goes back to insurance coverage and costs.