The F.D.A. approved the drug in 2015 for the treatment of a type of leukemia called acute myeloid leukemia. At the time, officials said that there was not enough evidence that the drug was effective against the type of breast cancer that Hermine wanted.
“She is, to this day, still fighting her cancer because she couldn’t afford the drug,” said Hermine Hermine, of Brooklyn.
“The drug is so expensive,” Ms. Hermine said, when asked why she had left New York. “I just gave up.”
Katelyn Ressler, an oncologist at a clinic in Pennsylvania who specializes in the treatment of blood cancers, said that the patient “could have gone to any of thousands of clinics that take Medicaid, but she didn’t have the money to pay for the first $100,000 worth of treatment. If the state of New York didn’t do that — if it didn’t give her access to that drug — she would have gone under. And it just doesn’t make sense.”
Dr. Ressler said that she was not aware of any other state that used such a mechanism to prevent cancer patients from paying more than $100,000 in cost for drugs.
Diana Zuckerman, a researcher at the National Research Center for Women & Families, a nonprofit organization in Washington, said that the state had helped the patient with “the only resource they had to give her access to treatment — the fact that she qualified for Medicaid.”
Dr. Ressler said that because state Medicaid programs covered so many patients, often patients had to wait for months after receiving expensive drugs before they were approved. Even once approved, patients still struggled with paying out-of-pocket costs. And patients rarely were fully covered after their treatments ended, she added.
The patient was diagnosed with an aggressive form of breast cancer in 2014 and went through an aggressive chemotherapy regimen that cost $130,000 before the F.D.A. approved the drug. Ms. Hermine was left with no other options to pay for her treatment.
“As a citizen of New York, I want to know how we can help get our families covered,” said Ms. Hermine. “The state needs to know there are patients like my daughter that are going without the medication they need. I know it’s expensive. It’s not an easy drug to swallow.”
A spokesman for the state health department said that officials were exploring what had happened in the case but did not comment further. Officials did not respond to questions about the $100,000 cap and the process of how officials decide to apply it.
State officials last week announced that they would cover the drug, which costs about $142,000 per patient, to treat patients with other types of cancer, as well as newly diagnosed cases of leukemia. The state added that they would cover 90 percent of costs, up to $100,000 per patient, for those cases.
A health department spokesman said that if new evidence were found that might warrant treating different types of cancer with Novartis’s drug, officials would reevaluate the decision.
The spokesman added that the agency has also received criticism for not doing more to try to ensure that every patient in New York receives access to the drug, including through an urgent care clinic in Brooklyn or two other alternative distribution methods that would lower the cost to the state.
“I understand the criticism,” the spokesman said. “There have been issues. But our priority is to focus on those with the worst outcomes first. We’re not looking to provide every drug to every patient. I don’t think any state has been able to do that.”
This is an edited version of a story that appeared on February 19, 2018.
A version of this article appears in print on , Section A, Page 1 of the New York edition with the headline: Cancer Treatment Can Cost $100,000, and So Can Its Availability. Order Reprints | Today’s Paper | Subscribe
