Imagine the terror of being diagnosed with cancer.
Your doctor writes up your prescription, which you pray is going to save your life. You go to the hospital or oncology clinic's in-house pharmacy. The medicine is right there on the shelves, but you're told the only way your insurance will cover your medication, which might cost $10,000 or more per month, is if you get it through the mail.
So you go home empty-handed and wait. If you’re lucky, the medicine will arrive in just a couple of days. But it could be up to a month before delivery of the drugs.
Uncounted numbers of Ohio cancer patients don't have to imagine this dilemma. They have experienced it because health insurers and the pharmacy benefit managers hired by insurers dictate it.
They require that prescriptions be filled at mail-order pharmacies that are often owned by the pharmacy benefit managers rather than allowing patients to get the drugs immediately, down the hall at your hospital.
”Rather than filling a prescription I have on the shelf, I have to tell the patient they have to go home and wait for a phone call from the pharmacy and arrange having this medicine sent to you,“ said Christine Pfaff, pharmacist for the Zangmeister Center, a Columbus cancer treatment facility. ”I can’t give it to you today. Your insurance won’t allow it.”
Health-care providers say the goal is to start treatment as soon as possible, because delays can be detrimental to their patients' health.
“New diagnosis, with medications as good as we have today, speed to therapy is important. Even a few days can make a difference,” said Curt Passafume, vice president of pharmacy services for OhioHealth.
Insurers and their pharmacy-benefit managers like to tout mail-order operations as a convenient alternative. But in the world of expensive cancer drugs, the companies use their clout to force patients away from hospital- or clinic-based pharmacies and into their own mail-order operations.
It creates another revenue stream for pharmacy benefit managers, or PBMs, the little-known middlemen in the health-care system. PBMs are hired by insurers or employers to negotiate prices and rebates with drug makers, decide which medications are covered, and set rates paid to pharmacies.
Elvin Weir of Blacklick is battling advanced colorectal cancer. He recently was told that his health plan, Blue Cross and Blue Shield of Michigan, would cover his new chemotherapy pills only if he filled them through Alliance Rx's mail-order pharmacy. Two times he ordered the medication, and two times he faced big problems, he said.
The first time, he was forced to wait nearly two weeks for his medicine, and then was given incorrect instructions on dosage. The pharmacy said to send the pills back so they could be destroyed — all $20,000 worth of them.
The second time, Weir said he was shorted pills.
Both times, he was asked to wait while the mail-order pharmacy got its act together. And both times, the 52-year-old Weir refused, unwilling to further delay the fight against the cancer growing inside him.
His oncologist told him, “we know that if we don't have you on chemo medication, it spreads like wildfire,” Weir said. “To have the oncologist use words like 'wildfire' and these guys saying 'well, let's just wait' — I'm not waiting. That doesn't work for me.”
Helen Stojic, a spokeswoman for Blue Cross Blue Shield of Michigan, said Weir's access to his drug, Lonsurf, was restricted by its manufacturer, Taiho Oncology, to preferred providers, and that is why he had to get it from a mail-order pharmacy. Pfaff, however, said the Zangmeister pharmacy had the drug on its shelves — because it's one of the preferred providers.
Behind the thicket of reasons Weir couldn't get his medicine at his cancer clinic lies a common motive, said Ted Okon, executive director of the Community Oncology Alliance, a national group representing community cancer centers.
“This is not about expediting the cancer drug,” he said. “It's about jockeying for control and maximizing profits.”
Ohio cancer-care providers said that forcing patients into mail-order pharmacies seriously disrupts the continuum of care they receive at cancer centers.
“It takes much longer” for outside, mail-order pharmacies to fill prescriptions for cancer drugs than does the Cleveland Clinic's in-house pharmacy, said Scott Knoer, the clinic's pharmacy director.
The cancer centers all say that they can deliver the best care when lifesaving drugs are in the same place as doctors, non-pill treatments and patient records.
“It's very frustrating, for as much as we want to take care of our patients, the (health) plan or the PBM is forcing them to their mail-order plans,” said Julie Kennerly, assistant pharmacy director at The James.
Josh Cox, a member of the Ohio Board of Pharmacy and pharmacy director for Dayton Physicians Network, said that half of the network's cancer patients are forced to use such far-away pharmacies, and he has seen many cases in which patients had to wait as long as a month to get their prescriptions delivered.
Cox likened it to a case of acute infection.
“There’s no physician on the planet who would say, ‘We can either give you IV antibiotics now, or we can give them in two weeks,’” he said.
The pharmacists say the reason pharmacy benefit managers crowd patients into mail-order pharmacies is simple: With many cancer drugs carrying the biggest price tags, rebates from drug makers, and profit margins, the benefit managers want to keep that money for themselves.
Knoer called the companies “classic middlemen," billing billions, but “adding little value.”
OhioHealth's Passafume said that for every 100 new drugs that came onto the market in the 1990s, about eight or nine had to be filled at specialty mail-order pharmacies. Today, it's about 40 percent of new drugs, primarily expensive, long-term therapies for oncology, neurology and rheumatology disorders.
There is financial incentive to limit distribution because “rebate dollars flow back and forth. It's millions of dollars,” Passafume said. “Drug manufacturers and distributors decide on limited distribution and then patients have to deal with the delays, prior authorization.”
“Patient safety issue”
The Dispatch has been examining the role of pharmacy-benefit managers in Ohio and on the national stage. The little-known companies have tremendous power in contracting with health plans, negotiating rebates with drug makers and setting reimbursements to pharmacies.
One of the benefit managers, CVS Caremark, is accused by some pharmacists and lawmakers of using its dominance in Ohio's Medicaid program to gouge taxpayers and drive community pharmacies that compete with the CVS chain out of business.
Cox said CVS Caremark — which says it has a firewall between it and CVS retail operations — forces many patients away from the specialty pharmacy in his 44-physician group and into CVS Specialty Pharmacy. CVS Caremark, ExpressScripts and OptumRX control 85 percent of the country's $320 billion annual pharmacy business.
Okon, of the Community Oncology Alliance, said that the number of cancer patients being forced into mail-order specialty pharmacies has “mushroomed” over the past year. That's because PBMs and health plans realize that expensive oncology drugs are increasingly available in pill form and thus can be provided by a far-away company, he said.
“The PBMs realize that's a gold mine,” he said.
CVS spokesman Michael DeAngelis said that company does not engage in unfair trade practices. He also said that his company is unaware of a cancer patient waiting a month for medicine. Typically, he said, it arrives in less than a week.
“CVS Specialty and CVS Caremark’s mail service pharmacy have robust quality assurance processes to ensure prescriptions are filled and dispensed accurately,” he said in an email. "Both have been accredited by URAC, the leading health care accrediting organization that establishes quality standards for the health care industry.
PBMs and insurers “have the option to select CVS Specialty as the exclusive pharmacy for specialty medications,” DeAngelis said. “Among the reasons a client may choose this option are to manage costs, achieve better outcomes for plan members through our ability to have a full view of the patient’s profile and not just their oncology therapy, and to take advantage of our industry-leading tools and programs to manage and improve patients’ adherence to their medication therapies.”
Regardless of the company doing it, David Balto, former policy director for the Federal Trade Commission, said there's an inherent conflict in allowing companies to act both as pharmacies that fill prescriptionsand as the companies that decide which pharmacies get paid.
“Consumers are losing the opportunity to go to the pharmacy of their choice,” he said.
For patients, losing that choice forces them to rely on someone they've never met on the other end of a phone.
Weir, the cancer patient, said that it's like dealing with a “call center.”
“These guys are a nebulous cloud. They have no clue as to who I am, what my personal circumstances are, and frankly, they don’t care," he said.
Janet Whittey, chief pharmacy officer for Mount Carmel Health System, likes to send patients home from the hospital with the medications and information they need to continue treatment without disruption. But more and more, it's not possible.
PBMs “are shifting as much to their mail order as possible,” Whittey said. “This is patient-safety issue for us.”
Whittey said that "when you leave the hospital, you’re already under stress. We don’t want a break in their treatment plan. If the doctor prescribes (a medication) and they find it’s not covered, or have to wait for pre-authorization or delivery, it delays treatment. ... We want patients to go home without delays in treatment.”
Children's hospitals are not immune from growing requirements for patients to use mail-order pharmacies.
“There are instances where this affects pediatrics as well,” said Gina Bericchia, spokeswoman for Nationwide Children’s Hospital. “Ensuring rapid access to medications while also ensuring cost-effective therapy options are utilized is challenging.”
Ohio's insurance program for 3 million poor and disabled residents forbids its Medicaid managed care plans from requiring the use of mail-order pharmacies.
“In fact, if medically necessary, managed care plans must make arrangements for home delivery for medication — even if it’s same-day delivery,” said Medicaid spokeswoman Melissa Ayers.
Weir tries not to get too worked up over the repeated hassles in getting his cancer medication, believing that a good attitude is the best medicine. He knows he's more fortunate than many. He feels good enough to continue working as a project manager, is renovating a cabin in southeastern Ohio with his wife, Mary Jo, and has earned three master's degrees since his diagnosis in February 2012.
He also is able to keep after his mail-order pharmacy to make sure he gets the drugs he needs.
“We have enough frustrations daily even if you’re not sick that you don’t need to deal with the bureaucracy that is really out for No. 1 and not out for the patient. When you throw in Stage IV cancer and everything else that we’re dealing with in life, it’s just frustrating,” Weir said.
“I’m lucky that I have a positive attitude, and my wife has a positive attitude, and that keeps us from going off the deep end,“ he said. ”I have a horrendous temper and she keeps me from going off, because otherwise, I would be cursing a lot on the phone to those guys, and I haven’t had to do that. I’m keeping calm."