Last October-- a month short of a year ago-- I started treatment for a rare form of cancer. The treatment ended, successfully, about a month and a half ago after a month in the hospital for stem-cell transplants. Today I spent the entire day at City of Hope's day hospital getting maintenance treatment, something I'll probably be doing every few months for the rest of my life. I've kept a sporadic running diary of my adventures in the world of medicine that you can check out here if you'd like. Tuesday you probably read, as I did, the Andrew Pollack piece in the NYTimes that everyone was talking about, Drug Goes From $13.50 a Tablet to $750, Overnight. Short version: A typical greed-obsessed 32-year-old Albanian-American hedge-fund manager buys the rights to a life-and-death drug and jacks the price into the stratosphere. He isn't dragged out of his office and killed but goes on TV instead and will soon be talked about as a Ted Cruz, Jeb Bush or Marco Rubio potential running mate. The piece has been updated because the ensuing uproar caused one of the companies (UPDATE: now Shkreli has partially raised the white flag himself, lowering the cost per pill to a so-far undisclosed price.) involved to rescind the bulk of the increase. Blended, for those who don't have access to the Times, these are the most crucial bits:
A huge overnight price increase for an important tuberculosis drug has been rescinded after the company that acquired the drug gave it back to its previous owner under pressure, it was announced on Monday. However, outrage over a gigantic price increase for another drug spread into the political sphere on Monday, causing biotechnology stocks to fall broadly as investors worried about possible government action to control pharmaceutical prices. The Nasdaq Biotechnology Index fell more than 4 percent. “Price-gouging like this in the specialty drug market is outrageous,” Hillary Rodham Clinton, a contender for the Democratic presidential nomination, said in a tweet on Monday. She said she would announce a plan on Tuesday to deal with rising drug prices. Ms. Clinton was referring to the actions of Turing Pharmaceuticals, which last month acquired Daraprim, a 62-year-old drug used to treat a serious parasitic infection, and raised its price to $750 per tablet, from $13.50. The cases of Daraprim and of the tuberculosis drug, cycloserine, are examples of a relatively new business strategy-- acquiring old, neglected drugs, often for rare diseases, and turning them into costly “specialty” drugs. Cycloserine was acquired last month by Rodelis Therapeutics, which promptly raised the price to $10,800 for 30 capsules, from $500. But the company agreed to return the drug to its former owner, a nonprofit organization affiliated with Purdue University, the organization said on Monday. “We discovered literally on Thursday the strategy that had been undertaken” by Rodelis, said Dan Hasler, the president of the Purdue Research Foundation, which has oversight of the manufacturing operation. “We said this was not what we had intended.” By Saturday, he said, Rodelis had agreed to give back the drug. Rodelis confirmed this in a brief statement on its website. The foundation now will charge $1,050 for 30 capsules, twice what it charged before, but far less than Rodelis was charging. Mr. Hasler said the new price was needed to stem losses. Cycloserine is used to treat multidrug-resistant tuberculosis, a serious form of the disease that does not respond to the usual drugs. There are only about 90 new cases a year in the United States, Mr. Hasler said, and about half those patients get treated with cycloserine. Turing does not appear ready to surrender. Turing’s founder and chief executive, Martin Shkreli, a former hedge fund manager, used television interviews and also Twitter and Reddit to defend his move. He said that toxoplasmosis, the infection Daraprim is used to treat, had been ignored by the pharmaceutical industry because there was little money to be made. Now that Turing can presumably make money, he said, it will be able to educate doctors about the disease, improve delivery to patients and develop better drugs for the infection. Infectious disease specialists, who have protested the price increase, question the need for new drugs for toxoplasmosis and say that if Turing wants to develop such drugs, it should use money from investors. They say the price increase will raise the cost of treating some adult patients with toxoplasmosis to hundreds of thousands of dollars a year. Senator Bernie Sanders of Vermont, who is also vying for the Democratic presidential nomination, sent Turing a letter on Monday demanding information on the price increase. “Without fast access to this drug, used to treat a very serious parasitic infection, patients may experience organ failure, blindness or death,” Mr. Sanders said in a letter written with Representative Elijah Cummings, Democrat of Maryland. The two lawmakers have been investigating sharp price increases in drugs, many of them old generics.
Last night, Chris Hayes had Bernie Sanders on his show talking about this whole outrage-- specifically and general-- and what he's been doing to work on this problem in the Senate. Watch what Bernie had to say about it. Shkreli is just the latest ugly face of a catastrophic problem that needs to be seriously addressed-- but, because of the way our elections are financed, hasn't been. (You can contribute to Bernie's campaign here.)It's lovely that Hillary jumped in; none of the Republicans, to my knowledge, have. But it is a subject that Bernie Sanders has been working on for most of his career. Just before I started my treatment, I started covering how generic drug prices have been skyrocketing and how Bernie was taking on an issue that few others wanted to touch. Remember, Medicare Part D is "Republican Health Care." It was supported by virtually no Democrats except a gaggle of right-wing Blue Dogs, and it demonstrates the inherent unfairness towards working families that is emblematic of the GOP approach to health care. When the House voted on Bush's Medicare Part D scheme on November 22, 2003, it passed by only 5 votes, 220-215. 25 Republicans joined nearly the entire Democratic conference to oppose it. The 25 Republicans who opposed the Bush proposal are against all forms of government involvement in healthcare. Tthe 16 Democrats who backed it were almost entirely reactionary Blue Dogs, and only two of them, Colin Peterson (MN) and David Scott (GA), are still in Congress-- where they're still voting for Republican policies that wreck the lives of ordinary working families. The others were subsequently defeated or forced to retire to avoid being defeated. As Xavier Becerra (D-CA) explained recently on the House floor, "Congress should be in the business of making life better, not worse, for everyday Americans." Bernie's bill, S.1364, the Medicaid Generic Drug Price Fairness Act of 2015, is winding its way through a Republican-controlled Congress hostile to the very idea of, in Becerra's words, "making life better, not worse, for everyday Americans." Since Bernie introduced it, Elizabeth Warren (D-MA) and Sheldon Whitehouse (D-RI) signed on as co-sponsors, joining Bernie, Sherrod Brown (D-OH), Mazie Hirono (D-HI), Richard Blumenthal (D-CT) and Al Franken (D-MN). The bill would make generic-drug manufacturers reimburse Medicaid for excessive price increases (increases greater than the rate of inflation). If Bernie's bill passes, it will save taxpayers $1 billion annually, which would cut into excessive profits by the GOP-enabled pharmaceutical corporations. One of the most common side effects from chemotherapy is neuropathy, extreme pain in the feet, legs and hands. The pain is nerve damage and normal painkillers have no effect on it whatsoever. Lidocaine-based gels, however, ameliorate the worst pains. And the worst pains are pretty bad; it makes many patients suicidal-- many patients. Lidocaine has always been a relatively inexpensive drug. I used to buy a tube for around $25. A tube lasts two to three weeks. Suddenly, though, the generic-drug manufactures were all bought up and the price went from $25/tube to $300/tube, making it unaffordable to thousands of cancer and diabetes patients in extraordinary daily pain. That's what Bernie and other champions of working families in Congress are trying to combat.
Attorneys general in Connecticut and Vermont are also looking at possible collusion among some manufacturers. There have been allegations of practices such as buying up several generic drug companies as a way to corner the market-- and set pricing-- for a specific drug. At the June 6-10 American Medical Association’s House of Delegates meeting in Chicago, the delegates instructed the AMA to pursue efforts to find ways to address the increases. Many physicians spoke of specific instances of generic drug prices go up multiple times their cost, sometimes abruptly but more often over the past few years. For instance, said Georgia delegate John Antalis, MD, the price of the antibiotic doxycycline now costs $276, up from $70 a few years ago. One physician said a patient called him from a pharmacy to report that the generic version of aripiprazole (Ablilify/Teva) cost more than the brand name of the drug. At least 12 states require pharmacists to give patients to generic drugs when available and many more allow the substitution. If the plans permitted patients to get whichever version of a drug was cheaper, that could help fight some generic drug price increases. Health plan specifics are a matter of state regulation. At the AMA meeting, Mario E. Motta, MD, cardiologist in Salem, MA, wondered why generic digoxin, the pharmaceutical version of digitalis (a common garden flower also known as foxglove), cost $180 when it costs about a penny a pill to manufacture and has been used for more than 200 years as an herbal tea.
While I was getting the stem-cell operations, there was another patient of my doctor's in a room down the hall going through the same procedure, a young father who had four small children running around the hospital the whole time I was there. One day my doctor came in and told me he probably wouldn't make it. She was visibly shaken up and grappling with how she was going to tell his wife. Well, since then there's some good news and some bad news since then. The good news is that, although the operation was not successful, he didn't die. The bad news is that my doctor is keeping him alive with a daily pill. More bad news: The insurance co-pay for the monthly prescription is $10,000. This is not a wealthy family. They can't pay. Right now the hospital appears to be picking up the cost. But it's hard to imagine that that's going to last forever. My doctor is scrambling to figure out a way to make this work out. The key for the rest of us is to elect more members of Congress to stand with Bernie and the others taking this seriously. Recently I spoke with Donna Edwards, a congresswoman from Maryland currently running for her state's open Senate seat, and she would certainly be an immediate co-sponsor of Bernie's bill were she to be elected to the Senate next year. Same for P.G. Stittenfeld in Ohio, where Rob Portman, as usual, is on the wrong side of the issue. "If elected to the U.S. Senate," P.G. told us, "I will always be on the side of the people, rather than the special interests, and that is why on Day 1, I would support the Medicaid Generic Drug Price Fairness Act, ensuring that generic drugs remain affordable to those who need them. Not only is a progressive vision for our health care system the right thing to do, in the case of this legislation it would also save taxpayers a billion dollars." You can help make that happen right here.Most Americans (72%) are catching on that we're being ripped off by the Republican-enabled big drug companies. Often, the exact same drugs cost much less overseas. Is this a big enough deal for them to motivate their choice of 2016 candidates? If it is, Bernie Sanders will be the next president of the United States and Donna Edwards, Russ Feingold, P.G. Sittenfeld and Alan Grayson will be in the U.S. Senate.
