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How Drug-Company 'Benevolence' Silences the Sick

Joe Nocera is a Bloomberg View columnist. He has written business columns for Esquire, GQ and the New York Times, and is the former editorial director of Fortune. He is the co-author of "Indentured: The Inside Story of the Rebellion Against the NCAA."
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Among the drugs that helped bring Valeant Pharmaceuticals International low, none did more damage to its reputation and stock price than Syprine. Syprine is a drug that treats a rare illness called Wilson disease,  which prevents the body from metabolizing copper and can lead to liver failure and death if left untreated.

For decades, the price of Syprine was $1 per 250-milligram tablet, according to a recent article in the medical journal Hepatology.  For most people, a maintenance dose requires four pills a day, bringing the price during that era to $1,460 a year.

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With only 3,000 diagnosed cases of Wilson disease in the U.S., the drug was hardly worth the trouble for its longtime manufacturer, the giant pharmaceutical company Merck & Co. So in 2006, Merck sold Syprine, along with another Wilson-disease treatment, Cuprimine, to the much smaller Aton company, which began hiking the price. By the time Valeant bought Aton four years later, Syprine had risen fivefold, to $7,824 a year, according to the Senate Special Committee on Aging.

QuickTake Drug Prices

To the delight of Wall Street, Valeant had built its business by buying companies with drugs that were the gold standard for a particular disease, and then raising prices relentlessly. Today, Valeant charges around $300,000  for a year’s worth of Syprine. The company’s most recent annual report shows that the division that houses Syprine and many other controversial drugs generated $1.5 billion in profit in 2016, on 1.9 billion in revenue. That is a margin of 79 percent.

In the fall of 2015, however, the Valeant bubble burst and the company came under intense scrutiny for its pricing strategy. Syprine was Exhibit A. When that Senate aging panel conducted a hard-hitting investigation into prescription drug prices, Syprine and Cuprimine were two of the four Valeant drugs included in the committee’s examination.

The Bubble Bursts
Valeant Pharmaceuticals International, weekly closing stock price
 
Source: Bloomberg

And when my former colleague Bethany McLean  wrote an account of Valeant’s financial meltdown for Vanity Fair, she led with the story of a man she called J. He had become obsessed with Valeant’s pricing practices after one of his relatives went to refill a Syprine prescription, only to be told that her insurance company would no longer cover it, and that she would have to pay $20,000 for a month’s supply. (The insurer eventually relented, but her co-pays are now $500.)

J is John Brennan, a lacrosse coach in suburban Chicago. He agreed to shed his anonymity because there is another story about Syprine and Valeant that he wanted to get into the public realm. It’s about the relationship between the company and the Wilson Disease Association, the advocacy group working on behalf of patients. Just about every serious disease has at least one nonprofit devoted to curing the illness or helping patients. Yet with all the furor over skyrocketing drug prices, virtually all these groups have been curiously silent. The story Brennan brought me may help explain why.

Last May, after Valeant’s share price had dropped from $260 to $32 in nine months, the board fired its chief executive, Michael Pearson, the man who had devised the price-hike strategy.

His replacement was Joseph Papa, a longtime pharmaceutical executive, whose job was not only to repair the company’s deteriorating balance sheet but to restore its tattered reputation. One of the ways Papa took on the latter task was by flying to Milwaukee to visit Mary Graper, who was president of the Wilson Disease Association at the time and whose son has the disease.

Prior to Papa’s hiring, Graper had three meetings with Valeant executives, begging them to lower the price of Syprine and Cuprimine. They had refused. As she wrote in a February 2016 email to Brennan:

I have given them countless stories of patients who are struggling for access to their meds. They keep telling me that they want to help everyone with their patient-assistance program, which as you already know is of little or no help to most patients. Now I am working with them to make the program eligibility standards less stringent so that more patients will be helped.

She added: “We have not and will not accept any funding from them. Our board decided that it just would not be morally responsible to do so.”

When Graper met with Papa shortly after he took over, she again raised the issue of price reductions. Like his predecessor, he refused to consider it. According to Graper, Papa then asked her, “Has Valeant ever supported you financially?” When she said no, Papa offered to donate $100,000.

The Wilson Disease Association is tiny. Its paid staff consists of one part-time employee. In 2014, according to a filing it made to New York State, its revenue barely topped $90,000.

Despite the qualms she had expressed to Brennan months earlier, Graper recommended that the association take the money, which she felt could be put to good use. She was opposed by her board colleague Carol Terry, a co-founder of the Wilson Disease Association and a sufferer herself.

Terry feared that the Valeant offer was an exercise in public relations, a way to use the association as a shield against accusations of price gouging. After a great deal of soul-searching, the board decided that if Valeant would commit to a handful of conditions, most importantly improving its patient-assistance, the association would take the money. Which it did.

The association’s board also made it clear that its new relationship with Valeant should not be described as a partnership. Yet when Valeant drafted a press release announcing the donation, it used the words “partner” or “partnership” five times, and made it appear to be a joint statement. Graper rewrote the release, taking out all mention of a partnership and insisted that the release come from Valeant alone. Valeant was so eager to get the press release out that it did so even before the conditions were finalized in writing. It went out on Aug. 8.

There was a reason for Valeant’s haste: Its second-quarter earnings call was taking place the next day.  And wouldn’t you know it? Early in Papa’s remarks, as he listed a series of events purporting to show that the company was turning around, he included Valeant’s relationship with the Wilson Disease Association. Except he didn’t use the word “relationship.” He used the word “partnership.” When Papa was questioned about this by an analyst, here’s what he said:

We’ve realized that some of the pricing that we’ve taken was a mistake and we’ve acknowledged that mistake. We’re working very closely to try to make a difference in patients’ lives, and that’s exactly what we think our effort with the Wilson’s Disease Association is meant to do.

Brennan somehow missed the Aug. 9 conference call, so it wasn’t until five months later, while poring through a slide deck Papa had used at a J.P. Morgan Chase & Co. health-care conference -- where he again touted the “partnership” -- that he realized Valeant had struck some kind of deal with the Wilson Disease Association.

Outraged, Brennan fired off an email to Graper, Terry and Jean Perog, the association’s current president. After noting that Valeant had made $303 million from sales of Syprine and Cuprimine over the last three years, he wrote:

My question to you all is this: after taking what amounts to 0.0329% of the money this company has made off of Wilson’s patients over the past three years what did you get? I know what Valeant got because they are telling Wall Street they changed their tune and now they are your “partners.” The inference they are making, in an attempt to get their stock price back up, is that the price controversy they created must not be so bad because now you are their partners.

He encouraged the association to send back the $100,000 and start a publicity campaign that would call on the company to roll back prices to 2010, when Valeant acquired Syprine and Cuprimine. “Public shaming,” he said in a second impassioned email, was the only thing that had a chance to work.

Terry’s response was curt and cautious. But she was actually distraught. “I am really bothered that Valeant is calling us ‘partners’ in order to boost their stock price,” she wrote in an email to her Wilson Disease Association colleagues. “Valeant’s use of the fact we took their $100K to boost their image completely disgusts me. It’s just the kind of thing I was afraid of, and why I voted ‘no’ on taking the money.”

Although Terry told Brennan that the board would get back to him after addressing his concerns, nobody ever did. Ultimately, the association decided not to give the money back.

When I asked a Valeant spokeswoman about Papa’s use of the word “partner” despite the association’s objection, I was told that it was not meant to be taken literally but rather in “the colloquial sense of working together for patient support.” She added that the company and the association were working together on a number of initiatives that would be announced at the association’s annual meeting in October.

Graper told me that some of the $100,000 grant was being used to set up a patient registry, something that had never been done with Wilson disease patients before. She was happy about that. And she said that Valeant’s financial-assistance programs had been improved. 

“The only time I interact with Valeant,” she said, “is when somebody calls and says they can’t get their medicine.” That happens when people lose their insurance, for instance, or their job status changes and the co-pays become unaffordable. Then the association goes to the company and lobbies for the patient to be included in one of its assistance programs. Last year, of the 700 or so patients taking Syprine, 188 got some form of financial help from Valeant.

What the Wilson Disease Association has never done, however, is speak out publicly about the problems that Valeant’s pricing strategy has caused for Wilson sufferers. Graper told me that she helped the Senate aging panel find patients to testify (there was only one such witness with Wilson disease), and it’s true that she has worked (unsuccessfully) behind the scenes to persuade Valeant to lower the price. But despite its anguish over Valeant’s use of the “partnership,” the association never uttered so much as a word of public complaint.

The main reason, plainly, is fear. In that 2016 email to Brennan, Graper told him that the association had not gone public because it feared retribution from Valeant “since they are the only game in town on these meds.”

And now there is another reason to be quiet. The association has taken Valeant’s money. For $100,000, Valeant purchased the right to say that it was working hand in glove with the Wilson Disease Association. As for the “conditions” it agreed to, consider this: Every time it uses its assistance programs to cover part or all of a patient’s co-pay, it is generating revenue that would be lost if the patient could no longer obtain the drug.

Like most companies that sell high-priced drugs, Valeant says that no patient will ever be deprived of Syprine because of cost. And I can see why, if you’re the Wilson Disease Association, that would be the most important thing.

But the societal costs are high. No matter what the patients’ out-of-pocket costs are, insurance companies and Medicare are still paying Valeant millions of dollars for a drug that just 11 years ago cost $1 a tablet. Which means that we’re all paying for Syprine, either as taxpayers or as insurance customers.

Finally, though it is not something most of us think about, the need to rely on a drug so exorbitantly expensive takes a tremendous toll on patients and their families. They are always conscious that their insurance needs are costly to co-workers, especially if they work for a company that is self-insured.

Brennan told me that some of his relatives are reluctant to go to the doctor fearing they could lose their jobs if escalating insurance costs hurt their employers. “It is a terrible feeling,” he said.

Graper’s son who has the disease works in a small office that recently changed insurance plans. Under the new plan, everyone in the office now has to pay a $4,000 deductible. “How do you think it feels,” she told me, “to know that everyone in your office is paying for your Syprine?”

  1. It is called both Wilson disease and Wilson’s disease.

  2. “Costly Choices for Treating Wilson’s Disease,” by Michael L. Schilsky, Eve A. Roberts, Silhoun Hahn and Frederick Askari.

  3. Though my focus here is Syprine, Cuprimine’s pricing history is similar.

  4. McLean and I worked together at Fortune, and in 2010 we wrote All the Devils Are Here: The Hidden History of the Financial Crisis.

  5. Valeant says that it issued four press releases on Aug. 8, and that coordination with the other press releases was likely a factor in its timing of the Wilson Disease Association release.

  6. Terry’s email was accidentally sent to Brennan, who showed it to me. When I asked Terry about her dissent in an email, she responded: The way I or any individual Board member voted is beside the point. The majority of the Board voted to accept the donation and the rest of the agreement, which includes several important commitments by Valeant to ensure that no patient would go without needed medication due to price.

  7. Those were their words, not ours, Graper told me.

  8. In a letter to Senator Claire McCaskill, former Valeant CEO Pearson wrote: Valeant devotes a significant portion of its revenues to patient assistance programs that are designed to make important medicines more affordable to patients who need them.

This column does not necessarily reflect the opinion of the editorial board or Bloomberg LP and its owners.

To contact the author of this story:
Joe Nocera at jnocera3@bloomberg.net

To contact the editor responsible for this story:
Jonathan Landman at jlandman4@bloomberg.net