QUEENSBURY — Bob and Sara Carpenter were married six months after he was diagnosed with chronic lymphocytic leukemia, better known as CLL.
That was 17 years ago.
And since that time, Bob has faced grave hurdles: Increasing white blood cell counts, life-threatening infections and the uncertainty of what might come next.
After his dysfunctional spleen grew to nearly five times its normal size, surgeons removed it, leaving him highly susceptible to certain bacteria.
“If infected … he could be dead within 24 hours,” Sara Carpenter said, adding that they are taking life five years at a time, the span between curves in his cancer. “The doctors said, ‘If you ever get a fever, go to the ER right away.’ ”
And, as Carpenter adds, “With CLL there is no cure, you can just knock it back.”
In April 2014, when Bob’s white blood cell count suddenly jumped to 100,000 (normal is about 4,500 to 10,000 cells per micro liter), he was diagnosed with the 17-p deletion found in some CLL patients. That means a small upper arm on the 17th chromosome is missing, as are the tumor-suppressing genes found there, making it harder to prevent or control malignant cells.
That’s when doctors talked to the Carpenters about a new drug, Imbruvica or ibrutinib, that had two months earlier received fast-track approval from the U.S. Food & Drug Administration for use by CLL patients with the 17-p deletion.
A targeted biologic, Imbruvica blocks signals that tell malignant B cells to multiply and spread uncontrollably. Carpenter said it is like a traffic cop at the corner, diverting traffic.
“We consider it our Valentine’s present,” Sara Carpenter said during an interview in their Queensbury home.
Her mother, Ethel Eisenberg, was there, too, sipping a cup of hot tea in a room off the kitchen. It was Friday, the day her mother always visits.
Bob Carpenter takes three Imbruvica pills every day and must do so for the rest of his life, or for as long as Bob’s employer-sponsored prescription drug coverage continues. Without the coverage, the Carpenters could never afford the $11,100 monthly prescription that keeps Bob alive and living an active life.
“My husband’s chemo has been a real miracle for us, it’s saving his life. He works full-time, he pays taxes, he supports his family. But without this medicine, he will be dead in less than a year,” Carpenter said. “The price of a life right now is between $80,000 and $150,000. It’s a death sentence if we don’t have it.”
Carpenter added that her mother also has cancer and takes life-saving drugs that cost $10,000 a month.
The Carpenters’ situation is not unique. Thousands fear having to make critical life-and-death health care choices as the price tag on life-saving drugs continues to grow.
For example, there are about 115,000 CLL patients in the country, with 15 new diagnoses a year. If every patient took Imbruvica since its 2014 approval, and each patient’s annual bill was the same as Bob Carpenter’s, the total cost would be about $55 million for three years. And that’s only a small percentage of all cancer drugs.
“There is a new treatment that is $300,000 a year. The numbers are so off the wall, we cannot comprehend it,” said Saratoga Springs oncologist David Mastrianni, who was recently named senior vice president of Saratoga Hospital Medical Group. “I don’t understand — $10,000 a month is beyond reasonable.”
Glens Falls Hospital’s annual pharmacy budget is $40 million, according to Nancy Huntington, director of pharmacy.
“About 45 to 50 percent of that is spent on oncology, chemo and immunotherapy,” she said. “These drugs and all drugs have had a dramatic increase (in price).”
Huntington has limited ability to negotiate, especially when only one company sells a particular drug.
“We don’t have a contract advantage with sole-source,” she said, adding that she has tried to negotiate with pharmaceutical companies. “I have reached out looking to do that; it really ties our hands regarding expense, unfortunately.”
Federal law prohibits Medicare from negotiating drug prices, meaning Medicare will pay the pharmaceutical company’s charges minus the 20 percent co-pay, after approving someone for a specific drug, even if it costs $11,000 a month.
“Medicare is very good at controlling doctor and hospital costs,” said Mastrianni. “But they can’t control drug costs. Medicare covers one-third of all prescriptions and with no way to control these prices, that’s the driving force at the root of rising health care costs.”
Health care expenditures won’t go down until drug costs are controlled, he said.
“The pharmaceutical industry has too much power,” he said, referring to the industry’s lobbying efforts that have led to drug company wins in Congress, including Medicare’s non-negotiating limits written into the Affordable Care Act several years ago. “Medicare should be able to bid. We have to operate in the real world. Everyone knows this is not sustainable.
“Let’s say the average person spends $10,000 a year on health care. If a cancer patient spends $10,000 every month on medications, he needs 10 people who don’t use health care in a year for it to all balance out.”
Even with insurance, the burden is high.
The Carpenters’ health insurance costs about $8,000 a year (with a good portion employer-paid) and Bob’s co-pay is more than $3,000, but fortunately, the drug company has adjusted its co-pay down to $10 a month.
Still, many cancer patients face co-pays as high as $16,000, making it impossible to pay.
“This can be financially toxic,” said Donna Winchell, service line administrator for oncology at Glens Falls Hospital. “The hospital’s oncology education support team meets with the patient on their first visit to see what resources are available.”
The hospital helps cancer patients explore ways to pay for their medications, including hospital assistance, foundation help with co-pays, drug company support and sometimes free medicines for low-income patients, and helps patients complete applications for financial support.
“It’s important to be aware that we recognize the financial burden for patients and we are constantly learning and taking new avenues,” Winchell said. “We are fortunate at the cancer center and we do have an account to help with co-pays, travel expenses. We can provide gas cards. We really recognize the financial toxicity and it is important to do everything possible to help with that.”
For Sara Carpenter, the cancer drugs are a double-edged sword. She’s grateful the new therapies make a normal life possible for her husband, but she is concerned about the financial weight inflated prices put on the health-care system.
And because of this, the Carpenter family visited U.S. Rep. Elise Stefanik, R-Willsboro, to discuss the issue last March.
“Bob and I and our daughter went to her office for a meeting,” she said, adding that she is still waiting for answers. “I never heard back from Stefanik.”
Are prices fair?
Pharmaceutical companies have long pointed to the high price of research and development as the justification for high drug prices, estimating those costs at $2.7 billion annually.
But an analysis of U.S. Securities and Exchange Commission filings for 10 cancer drugs, “Research and Development Spending to Bring a Single Cancer Drug to Market and Revenues After Approval,” published in the November issue of the Journal of the American Medical Association, said researchers were unable to replicate the $2.7 billion figure.
According to the analysis, the median cost of developing a single cancer drug was $648 million, significantly lower than prior estimates. The median revenue after FDA approval is $757.4 million, according to the analysis.
Additionally, research for novel therapies begins in academic institutions and cancer research facilities and is paid for with federal dollars and other grant funding.
“Drug companies come in relatively late in the process,” said Mastrianni, the Saratoga Springs oncologist.
Carpenter added, “These are our tax dollars. We deserve a seat at the table in deciding how these drugs should be priced.”
Some drug companies spend nothing on research and development.
In a historically dramatic example, the cost of the drug Daraprim, not a chemotherapy agent but used to treat serious infections in cancer patients, increased from $13.50 to $750 a pill overnight when Turing Pharmaceuticals purchased the drug for $55 million.
Nonetheless, a congressional oversight committee, as part of an investigation into pharmaceutical prices, found that Turing’s motivation was not to recover research and development costs, but to make a lot of money.
“The documents demonstrate that although (Turing) spent no funds on developing Daraprim, it was purchased for the purpose of increasing the price dramatically and making hundreds of millions of dollars by exploiting its existing monopoly before any competitors could enter the market,” according to a Feb. 2, 2016 memorandum to committee members. “Daraprim has now become prohibitively expensive, hospital budgets are straining under huge increases, patients are being forced to pay thousands of dollars in co-pays and are experiencing major challenges obtaining access to the drug.”
Mastrianni said doctors don’t want to strangle new drugs from coming to market with too many restrictions, because they want the new drugs for their patients, but reform is needed.
“I can tell you, those of us who have been doing this for a long time know that the prices are way out of line,” he said. “It has become a lottery ticket for the Mega Millions.”
For now, Carpenter will continue to do research and to tell her story in the hope of spurring legislative change.
“The reason it costs so much is because it is the only medicine that will save my husband’s life. The drug company knows this,” Carpenter said to Congresswoman Stefanik during a televised public forum in Plattsburgh. “They know the choice is pay or die. It’s extortion. Every other new cancer drug is priced the same way.”
And she will continue to worry about the man she loves, filled with so many questions.
“There are a lot of unknowns. Will it keep working? Will he build a resistance to this?” Carpenter said. “Will his employer keep offering prescription benefits? There is some moral imperative to make this affordable.”
This is the first of several stories related to prescription drug costs that will appear in The Post-Star in the coming months. The next takes a look at the pharmaceutical industry and lawmakers.
Kathleen Phalen-Tomaselli is a features writer at The Post-Star. She can be reached at email@example.com for comments or story ideas.
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