FIGHTING FOR HIS LIFE: Pocatello man battles leukemia and high medication costs

For a few years after Pocatello resident Mark Edwards got sick, his health insurance worked as he’d always assumed it would, and he gave no thought to the price of his life-saving drugs.

Edwards’ out-of-pocket costs were reasonable, and his full focus was on recovering from chronic myeloid leukemia.

This year, however, the 64-year-old retired Pocatello High School math and science teacher has stopped viewing himself as being middle class, and he believes he was naïve to think he was prepared for the worst simply because he had a mid-tier Affordable Care Act insurance policy.

Twice this year, he’s dealt with lapses in drug manufacturer-sponsored copay cards — which are essentially coupons that patients can receive to help them make hefty out-of-pocket payments on costly pharmaceuticals. His first copay card problem surfaced this spring, forcing Edwards to go cold turkey from the chemotherapy medication he needs to survive.

The experience taught him the American pharmaceutical system is a high-stakes game, pitting drug companies against insurance providers — and one in which patient outcomes can be secondary to profits.

“I’ve done everything I could possibly do,” Edwards said.

“We’re one of the richest countries in the world, and it’s not about the typical working Joe like me who has contributed and has done everything right. Basically, they don’t care about that. I don’t count.”

Edwards’ current insurance provider, Blue Cross of Idaho, blames the nation’s increasingly exorbitant drug costs on drug manufacturers that charge artificially high prices for their products. Blue Cross officials explain drug companies offer copay cards and grants for many patients to apply toward their out-of-pocket expenses, until they qualify for federal Medicare or meet maximum out-of-pocket limits of their policies. Then inflated costs are passed on to insurance companies, the federal government and unlucky patients who exhaust copay cards.

Novartis — maker of the drug Gleevec, which Edwards has taken to treat his leukemia — asserts insurance providers like Blue Cross shoulder blame for implementing programs that prohibit patients from applying copay card contributions toward their deductibles.

At least for the moment, Edwards is back on his drugs, having found some short-term copay assistance. But his pill box now also includes medication for extreme anxiety, stemming from fears about how he’ll pay for his pills from one month to the next.

Andrew Miller, vice president of strategy with the Detroit-based pharmacy benefits manager MeridianRx, believes rising drug costs are a problem that’s “crippling our entire country.”

“It’s putting employers out of business. It’s costing jobs,” Miller said. “These pharma companies are out of control.”

Miller agrees copay cards have contributed toward the rapid prescription price escalation, and too often leave patients in a lurch when they exhaust their copay cards and find they’ve made no progress toward meeting their deductibles.

He likens the practice of using copay cards to rebates on automobiles.

Unlike automobiles, however, Miller said patients have less flexibility to find a better deal once they’ve exhausted “rebates” on their pharmaceuticals. A full year’s supply of Gleevec costs about $146,000.

Chronic myeloid leukemia would have most likely meant a death sentence had Edwards been diagnosed with it as recently as the late 1990s.

Modern chemotherapy pills, however, stop the disease in its tracks and can add years to patients’ lives.

“I am very grateful for the advancement in medicine and the ability in America to be given the right medical treatment to continue living way longer,” Edwards said.

Edwards caught his CML as a result of an April 2014 blood test to monitor his type 2 diabetes. His doctor noticed Edwards’ white blood cell count was elevated and referred him to a hematologist. He was diagnosed with CML a month later and commenced with treatment in mid-June.

“By the end of the fourth day of taking the pill, I was throwing up all day long. I couldn’t get out of bed,” Edwards said.

The nausea lessened after about a month, but the drugs never stopped making him drowsy.

At the time of his diagnosis, Edwards was teaching a couple of college math classes and working as an adviser at Idaho State University, having retired from School District 25 in 2009. Initially, he had two insurance policies — some carryover District 25 coverage and a Blue Cross policy offered by ISU.

Though ISU accommodated prolonged absences, Edwards ultimately decided he couldn’t keep working through fatigue spells, which are a side effect of his chemotherapy medication.

He replaced the workplace policies with a Blue Cross of Idaho Silver plan, offered under the Affordable Care Act.

For the first four years after his diagnosis, Edwards never made more than a $10 monthly copay. His out-of-pocket expenses were mostly covered by a copay card offered by Bristol-Myers Squibb, the manufacturer of the drug he was taking at the time, called SPRYCEL. But somehow, a required annual renewal of his SPRYCEL copay card “fell through the cracks.”

In early January, his pharmacist informed him he owed a $6,000 copay to refill his monthly SPRYCEL prescription. Accessing his retirement wasn’t an option. A couple of years earlier, he’d applied some of his retirement toward health costs, and the influx of income negated his Affordable Care Act health care subsidy, forcing him to repay the federal government $12,000. Unable to meet the out-of-pocket requirement, Edwards did what his doctor implored him never to do. He quit his meds.

The manufacturer ultimately renewed his copay card, and Edwards refilled his SPRYCEL prescription on Jan. 19. But he had an extreme adverse reaction to the medication, and his physicians changed his prescription to the Novartis drug, Gleevec, restarting the process of obtaining assistance through a copay card.

Edwards was off of critical medication for more than a month, before he got his Gleevec copay card and filled his first prescription on March 6.

He’s now exhausted his Gleevec copay card, and he’s switched to a generic equivalent, which still costs $9,000 per month. For his most recent refill, Edwards applied a $4,500 one-time grant toward his copay, and Blue Cross will allow it to be applied toward his deductible because the grant is needs-based. But he still has to meet a maximum out-of-pocket limit of $12,000 before his insurance will pick up the full amount. And he’s back to constantly worrying about how he’ll make his next payment.

“One way or another, we can usually get (patients) assistance, but don’t count on it,” said CaeDee Astin, Edwards’ patient advocate with Portneuf Medical Center. “I don’t know how to pinpoint who is at fault really for these high prices. Is it pharma? Is it insurance companies? Is it hospitals? It’s something that needs to be looked into.”

Insurance companies versus drug makers

Blue Cross is implementing a new policy in response to Edwards’ situation, explained Dave Jeppesen, the company’s executive vice president and chief strategy and innovation officer.

Thus far, the company has left it to drug manufacturers to alert patients when their copay cards are coming up for renewal. Jeppesen said his company is working with its pharmacy benefit manager, CVS Caremark, to devise a method of alerting members before their cards expire, recognizing “there is a gap here, and we need to step in and see if we can close that.”

But Jeppesen said Blue Cross shares Edwards’ concerns about the outlandish cost of prescription drugs, given that annual inflation on drug prices has been about 20 percent, compared with a 2 percent general inflation rate.

“The big issue here is really around specialty drug costs,” Jeppesen said. “They’ve really exploded around the country.”

In particular, Jeppesen said Gleevec, which generated $4.7 billion in sales during 2015, has been on his company’s radar. An annual supply of Gleevec cost $26,000 when the drug came out in 2001, and Jeppesen said his company’s research has uncovered no good reason behind why the drug’s price has skyrocketed to more than $140,000.

“It’s gone up because it can, frankly,” Jeppesen said.

Jeppesen said Blue Cross has lobbied both the Idaho Legislature and Congress to enact a solution, also raising concerns about how drug manufacturers’ use of copay cards has inflated costs, with insurance companies left absorbing the brunt of the price gouging.

“The problem with that is it drives up premiums for everybody,” Jeppesen said.

Novartis sent a written statement in response to interview questions, emphasizing there are now four generic versions of the drug, and that Gleevec has remained on the market to “maximize choice.” The company boasts of having “one of the most significant patient-assistance programs in the industry” and argues copay cards help consumers who would otherwise be unable to pay.

Novartis shared concerns about health plans adding “rules under which the financial value of copay-assistance programs offered by drug manufacturers no longer count toward the patient’s deductible or out-of-pocket maximum obligation.”

The drug company advocated for all stakeholders to work together toward a solution to ensure out-of-pocket expenses won’t continue posing a barrier to access to medicine.

“As a result of the restrictions placed on manufacturer copay support by the health plan, the patient may face unexpected costs when they exhaust funds from manufacturer copay assistance and find their deductible still has not been met,” Novartis wrote. “With these unforeseen costs, some patients may have no option but to discontinue a prescribed medication, or not taking it as directed, potentially putting their health at risk.”

If he lived in Canada, Edwards could fill his annual Gleevec prescription for $38,800, or he could buy a year’s supply of a generic equivalent for $8,800, which is less than he’s currently spending each month for generic drugs.

Joanna Smith, a medical social worker and president of the National Association of Health Care Advocacy Consultants, frequently advises patients to look to Canada for better deals on prescription drugs.

“The big perspective is we need to address prices of pharmaceuticals across the board,” Smith said.

Jeppesen said the U.S. Department of Health and Human Services is looking into the drug-cost issue, and solutions will have to come soon “at the federal level.”

“Costs are rising too quickly,” Jeppesen said.

John DiLoreto, executive director of the Bulk Pharmaceuticals Task Force, based in Washington, D.C., specializes in regulations affecting generic drug manufacturers, and has worked to deliver U.S. consumers more generic options.

His group is helping the federal Food and Drug Administration streamline reviews of generic drug applications from a roughly five-year process to just 10 months. He said FDA has hired more than 1,000 new reviewers, and “that net effect is just starting to come into play.” FDA took action on more generic drug reviews in the last half of 2017 than during any pervious six-month period.

Far more inspectors have also been hired to address quality concerns, including increased inspections of foreign facilities shipping drugs into the U.S., he said. Pharmaceutical companies have contributed toward the new positions, he said.

DiLoreto shares concerns about the widespread use of copay cards, and believes the better option for patients is simply lowering the price of drugs.

“While they might help individual consumers, it’s not a very large number of consumers who benefit from those coupons, and the drug companies would rather do that because it gives the perception they’re offering a discount, but the discount is limited,” DiLoreto said.

In May, the Trump Administration unveiled a blueprint, called American Patients First, outlining strategies to bring down prescription drug prices. The plan lists “improved competition, better negotiation, incentives for lower list prices and lowering out-of-pocket costs” as its key strategies.

Sen. Bill Cassidy, R-La., who is also a doctor, believes Trump’s plan will make U.S. health care affordable again by “taking power away from special interests, protecting innovation, but not protecting drug monopolies.”

Cassidy specifically questioned the discrepancy between prices U.S. and Canadian patients pay for Gleevec June 26 during a U.S. Senate Finance Committee hearing on prescription drug affordability.

Dr. Diljeet Singh, a San Diego oncologist and adviser to the board of Physicians for a National Health Plan, believes wholesale changes to the U.S. medical system are in order.

Often, Singh said care that should be covered is denied to patients, who don’t pursue the denials.

As long as profit is a factor, Singh believes U.S. health care will never live up to its potential to meet the medical needs of Americans. Singh has read studies showing 35 cents of every health care dollar spent in the U.S. goes toward profit or “pure bureaucracy.”

“We keep coming up with little Band-Aids, but we have to fix the whole system,” Singh said.

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