We look forward to helping Congress stand up to the drug industry and begin to actually lower drug prices for patients.
I got a four percent raise in my Social Security, but that doesn’t help as Revlimid has gone up almost 25 percent since January 2017.
A stormy turn in the drug pricing world and a Rose Garden speech by the president that could have used more thorns.
Welcome to the Week in Review in Drug Pricing!
1. Novartis should have used $1.2 million to repay cancer patients’ debt instead of paying a Trump attorney for special access.
The pharmaceutical giant paid $1.2 million to a Trump attorney. Here’s a better idea: repay patients who take Gleevec, a Novartis drug that rose in price from $26,000 in 2001 to $140,000 in 2017, an increase of nearly 440 percent. “My out of pocket for that drug with Medicare Part D insurance has come to, so far, $60,000 and has cut deeply into my retirement money, which is incredibly devastating and scary...I’m going to be in the poor house a lot sooner than I thought,” patient advocate Joan Tramontano told us. Watch Joan talk about the impact of Novartis’ price hikes on her life. — (STAT)
2. President Trump’s plans to lower drug prices don’t include direct Medicare negotiation
And that’s a shame, though there are positive steps toward transparency in the 50-point plan released Friday. — (AP)
3. Will the Administration’s proposals make a difference for patients?
David Mitchell, a cancer patient, and the president of Patients For Affordable Drugs, weighed in on PBS NewsHour. “We got a bunch of singles and we got a couple of whiffs. There are some things in this set of proposals that will save money for some people, especially people on Medicare who are using very high-cost drugs. But the president promised that he would lower list prices. And if you look at the proposal, the shortest part is about lowering list prices, and we really have to get at list prices set by the drug companies if we’re going to drive down prices overall.” — (PBS NewsHour)
4. The impact of a 100,000 percent drug price hike on a small town
After the price of a prescription drug for infants experiencing seizures soared 100,000 percent, the mayor of an Illinois town went looking for answers.— (60 Minutes)
5. Drugs don’t work if people can’t afford them
We tend to agree. — (STAT)
In New York, a panel makes a play to lower the cost of a charity-funded Vertex drug. Big Pharma’s shirt buttons pop off after it gorges itself on prescription drug price increases. And there’s this great new way to treat cancer that’s so expensive, the system can’t figure out how to pay for it.
Welcome to the Week in Review!
1. Not having it
In the first test of a new law designed to lower drug prices, a New York panel said NOPE to Vertex Pharmaceutical’s $272,000 price tag for Orkambi. The state is demanding a rebate on the high-priced cystic fibrosis drug. If negotiations on the rebate fail, New York will attempt to get an explanation into the drug price. — (STAT)
2. Big Pharma’s Q1 profit haul soars, despite big talk on lowering drug prices
People are suffering as the industry makes its killing, despite big talk that prices will come down. — (Axios)
3. The million dollar cancer treatment no one knows how to pay for
And that’s a big problem for cancer patients who only want to stay alive. A lower list price would mean greater access. — (MSN)
4. The forever burden
A patient with Crohn’s describes the trifecta of taxes — on her emotions, her time and wallet — as she comes to terms with the fact she needs a med worth tens of thousands of dollars a year, for life, to feel fully human. — (Philly Enquirer)
5. Pro or con?
Patients rely on co-pay assistance, but so do pharmaceutical corporations, to extract maximum profits from patients, consumers and taxpayers, a cost we all bear. This deep dive is worth your time. — (USA Today)
Have a wonderful weekend, everyone. See you next week!
Happy Sunday! Big Pharma pours more money into lobbying than ever before. Scrappy Illinois legislators have come out swinging with a bill to stop price gouging aptly named, PHARMABRO. The president is expected to talk about drug prices — but will list prices come down? And I know this isn’t technically a drug pricing item but can we PLEASE talk about the nurse anesthetist who came in second in the Boston Marathon?
1. PhRMA gets desperate
- PhRMA, the drug industry’s no. 1 apologist, put $10 million big ones into lobbying in the first three months of 2018, more than EVER BEFORE. Stop fighting the sea change and start lowering drug prices, PhRMA! — (STAT)
2. Trump to talk drug prices
- In his State of the Union Address, President Trump promised “prices will come down.” That’s the metric on which Americans will judge next week’s announcement. Will the proposals by the Administration lower the list price of drugs? We’ll be watching. — (MarketWatch)
3. Scrappin’ in Springfield
- A state representative from Chicago is taking on Big Pharma with an anti-gouging bill, dubbed PHARMABRO. Will Guzzardi’s legislation just passed the House. It would would empower the Illinois attorney general’s office to investigate price increases in generic drugs above certain threshholds.
4. A first-of-its-kind
- Heads up. In New York, a drug utilization review board will meet April 26. It could recommend a supplemental rebate to lower the cost of the cystic fibrosis drug Orkambi by Vertex Pharmaceuticals. Forget rebates. We think Vertex should just drop its price. Check out the preview. — (STAT)
5. It’s a crime in our books
- When science hinted cancer patients could take less of a $148,000-a-year drug, its maker tripled the price. Now that’s what they call pharmaceutical innovation. — (The Washington Post)
6. I know this isn’t a drug pricing story...but...
- We can’t let the week go by without giving props to the nurse anesthetist who nabbed second place in the Boston Marathon. I bet she’s into lower drug prices. — (The Boston Globe)
New patient group planning to spend six figures in WV; David McKinley earns support thanks to his work to speed generic drugs and lower prices for patients
WASHINGTON, DC — Patients For Affordable Drugs NOW, a bipartisan national patient organization focused on policies to lower drug prices, announced its first endorsement of the election year will go to Republican Congressman David McKinley (WV-01). McKinley earned the support of patients thanks to his leadership on legislation that would lower drug prices, his independence from Big Pharma, and his work to protect rural hospitals from paying more for prescriptions for low-income West Virginians.
“David McKinley has consistently been on the right side of legislation to lower drug prices, including introducing a key bill aimed at speeding cheaper generics to market,” said David Mitchell, a cancer patient and the founder of Patients For Affordable Drugs NOW. “The truth is, patients and consumers need David McKinley because he’s working to bring cheaper drugs to market that will help West Virginia families and all Americans save money. We are proud to give him our support and look forward to working for his re-election this November.”
In 2017, Rep. David McKinley co-introduced the FAST Generics Act, a bipartisan bill that would prevent brand drug corporations from gaming our system and blocking cheaper generic drugs from coming to market. Unlike many members of Congress, he has taken very little in campaign donations from big brand drug companies. This congressional session McKinley also stood up to the drug lobby’s push to raise drug prices for rural hospitals by opposing harmful cuts to the 340B program.
Patients For Affordable Drugs NOW will spend six figures to educate, activate, and mobilize West Virginia voters in support of David McKinley’s reelection. The nation’s only independent patient group focused exclusively on lowering drug prices will support McKinley through direct voter engagement, organizing, and advertising around the issue of drug pricing.
Americans have consistently said that lowering prescription drug prices should be a top priority in Congress. Millions of Americans routinely choose not to fill prescriptions or skip doses to save money, according to a report from the National Center for Health Statistics.
Patients For Affordable Drugs NOW aims to act as a counterbalance to the pharmaceutical political machine. Drug corporations spent $20 million in lobbying and donated $246 million to politicians in the last election cycle alone. P4ADNOW works across the country on a bipartisan basis to educate the public on policy issues and elevate stories of patients struggling under runaway drug costs.
The week in drug pricing has been marked with dormant dashboards, broken promises and bloated CEO salaries.
So, let’s get to it.
1. Dormant drug dashboards
- HHS has not updated the databases that tell the public how much money the government is paying for drugs. The inaction follows repeated promises from President Trump that "one of my greatest priorities is to reduce the price of prescription drugs.” — (CNN)
2. “We were forced to file for bankruptcy to afford my insulin.”
- A patient speaks in Colorado. — (The Daily Sentinel)
3. Piles of gold skimmed off the backs of the sick and dying.
- Eye-popping CEO salaries that are, umm, not investments in R&D? — (Axios)
4. Kickback schemes at Novartis?
- The accusations flying are sick, and yet, not surprising. — (STAT)
5. The Vertex CEO said a few things he might regret.
- For example, CEO Jeffrey Leiden noted that Vertex now “has a nice problem of accumulating cash very rapidly.” He forgot to mention that his company is holding dying children in a variety of countries hostage over its insane prices. — (Motley Fool)
Have a wonderful weekend, everyone. See you next week!
- "They (drug companies) don't want taxpayers and Americans to know how they price their drugs because they don't price them fairly. In order to lower drug prices, people need this information," Slavitt said.
By Sara Ganim, CNN —The Department of Health and Human Services has not updated the databases that show the public how much money the government is paying for drugs, hospitals and physicians.
The database has been instrumental for researchers, journalists and non-profit groups who keep tabs on trends in drug prices and abuses by physicians, and was considered to be a step toward transparency and accountability for an industry that historically keeps its prices in the dark.
Although President Donald Trump has repeatedly promised "one of my greatest priorities is to reduce the price of prescription drugs" because drug companies are "getting away with murder," critics say the dashboard's dormancy helps the drug industry avoid new scrutiny.
"Drug corporations are thrilled to have this tool be out of date," said Ben Wakana, executive director of Patients for Affordable Drugs, and a former HHS spokesman under President Barack Obama. "If this administration is serious about transparency and serious about holding drug companies accountable, they should update this tool tomorrow."
The Centers for Medicare and Medicaid (CMS), which maintains the website, did not comment on the record for this story. A CMS spokesperson who asked not to be identified told CNN that the department is making "enhancements" to the database, but could not say when those began or when the data would be posted.
Niall Brennan, the former chief data officer for CMS who created the dashboard, said he created the program to make it very easy for the subsequent release of data in following years.
"The code is written," said Brennan, who is now the president and executive director of the Health Care Cost Institute. "This would be one of the first examples of them not updating one of the existing data sources."
The pharmaceutical industry opposed the database when it was created, arguing that it isn't a fair representation of drug prices, since the government isn't allowed to negotiate the cost of drug prices.
The database shows gross prices, not including rebates, meaning the costs reflected in the database may be higher than what someone with insurance would pay for their medicine. That's the main reason the Pharmaceutical Research and Manufacturers of America (PhRMA) says posting the data is a "misleading" representation.
When contacted for comment Monday, PhRMA sent CNN a statement from 2016, saying in part, "The dashboard focuses on a small subset of medicines and ignores the substantial market forces at work to hold down costs."
"The reason this tool is fair is because if you are a person who is uninsured, you are paying the list price in that database," Wakana said. "So to argue that some pay lower prices is completely unjustified. Hundreds of thousands of people each year are draining bank accounts to pay the prices in that database."
Andy Slavitt, the acting administrator of the Centers for Medicare and Medicaid Services under Obama, who started the database, said the purpose of posting this data was to "create a bit of shame for those who increase prices continuously without doing anything to improve the drug."
"They (drug companies) don't want taxpayers and Americans to know how they price their drugs because they don't price them fairly. In order to lower drug prices, people need this information," Slavitt said, later adding, "I've heard transparency and cost reduction out of this administration a number of times, and this is probably the best example of this. So I don't know a good explanation of why this information isn't being kept up."
Under the Obama administration, the CMS dashboard was typically updated in November for the previous calendar year, but no new information has posted since Trump took office. Information going back to 2010 remains on the website.
Trump on Monday reiterated his desire to lower drug prices, in part blaming the drug lobby in a speech.
"If you compare our drug prices to other countries in the world, in some cases, it's many times higher for the exact same pill, or whatever it is, in the exact same package, made in the exact same plant. And we're going to change that," he said in a speech in New Hampshire.
"They're quite valuable files," said Jack Hoadley, a health policy analyst and political scientist at Georgetown University who testified recently before the Senate using the database, but had to use slightly outdated information since it hasn't been updated. He said he uses it "to just get a sense of what are the drugs that are getting the most spending, the highest price increases. I've seen some really good work, on exactly that point, flagging drugs that are showing a lot of price increase over the past few years, and that leads you to look deeper and ask what's going on."
Earlier this month, Health and Human Services Secretary Alex Azar -- a former Eli Lilly & Co executive -- who came to the administration with many drug industry ties -- gave a speech to the Federation of American Hospitals "encouraging transparency from providers and payers" and saying "providers and insurers have to become more transparent about their pricing."
In November, when Trump announced Azar as his nominee to lead HHS, he continued to emphasize his focus on drug prices, tweeting..., "he will be a star for better healthcare and lower drug prices."
He even highlighted it in his State of the Union address.
"Fixing the injustice of high drug prices one of our top priorities," Trump said. "Prices will come down."
Shkreli begs for minimum security. Pharma lobbies Congress to sweeten the donut hole. And the Catholic health community gets a call for help.
Welcome to the week in review in drug pricing!
1. How will Shkreli fare in prison? Jury’s out
- Inmates weigh in. — (VICE)
2. Congress is considering caving to pharma
- Will it lower drug corporations’ costs in the donut hole or hold strong for patients? (Politico)
3. Drugmakers ‘derelict’ if they don’t tackle this issue: Waxman
- Agreed. — (STAT)
4. Give patients a seat at the table
- They must be heard in the spaces occupied previously by industry stakeholders. And, the Catholic health care community can help! — (Journal of the Catholic Health Association of the United States)
5. Heads are snappin’ at health care consolidations
- But will these mergers help patients? Hmmm…— (L.A. Times)
Have a wonderful weekend, everyone. See you next week!
WASHINGTON, DC — Patients For Affordable Drugs NOW Campaigns Director Janice Rottenberg issued the following statement after Oregon Governor Kate Brown signed HB 4005 into law today.
“This bill brings much-needed transparency to drug costs in Oregon, and it builds momentum as more states pass legislation to end drug pricing abuses. Today is a good day for Oregon and for Americans demanding action to lower outrageous drug prices."
“Internal documents reviewed by The Register-Guard show the pharmaceutical industry’s involvement was intended to be kept secret, both from Oregonians enlisted to sign the prewritten letters and legislators who would receive them.” [Register Guard, 2/9/18]
Among those who testified in favor of HB 4005 was Ann Neilson, a retired nurse from Oregon and Patient Advocate for Patients For Affordable Drugs NOW. She told Oregon lawmakers, “When working as a nurse, I discovered scores of patients taking half their prescribed doses or skipping doses. I believe patients deserve to know why drug prices are increasing.”
Oregon is the latest state to step up and tackle drug pricing.
WASHINGTON, DC — Big Pharma is lobbying Congress to repeal a rule that requires drug corporations to pay a higher share of prescription costs for people on Medicare. At the same time, patient advocates descended on Washington, D.C. to tell lawmakers not cave to pharma lobbying without supporting the CREATES Act, a bill to lower drug prices.
“If Congress caves to pharma and repeals drug cost protections for Medicare beneficiaries in the donut hole, the least they can do is stop stalling and pass the bipartisan CREATES Act,” said David Mitchell, a cancer patient and the founder of Patients For Affordable Drugs NOW.
According to news reports, lobbyists and lawmakers “are working to relax a law that would force drug makers to pay a higher percentage of costs for Medicare beneficiaries.”
The CREATES Act (S. 974 and H.R. 2212) would stop big drug companies from blocking competition by refusing to allow their brand name drugs to be used in testing needed to get approval for generic competitors. If passed, patients would get access to lower-priced generic drugs faster.
Among the patients visiting lawmakers are:
Lisa Driggers, of South Carolina, who said: “Just one of my husband's chemo drugs is over $22,639.00 for a 21-day supply. Ungodly!”
Bob Parker, of Colorado, who wrote: “For most of the past 8 years, I have cost the government about $15,000 a month. I have prostate cancer."
- Pam Holt, of Indiana, who has taken on $10,000 in debt to stay alive and afford her prescriptions since her 2012 cancer diagnosis.
The pharmaceutical lobby spent $25 million last year and continues to oppose the CREATES Act despite calls from FDA Commissioner Scott Gottlieb, FreedomWorks, and the Heritage Foundation to pass the bill.
A new national poll shows that Americans across the political spectrum want Congress to make lower drug prices a top priority, and voters support passage of the CREATES Act by an 83 to 9 margin. According to a survey from the Republican-led research firm GS Strategies, 85 percent of voters nationwide say lowering the cost of prescription drugs should be a leading priority for Congress compared to just 12 percent who consider it a low priority.
Patients For Affordable Drugs NOW aims to act as a counterbalance to drug corporation influence and conducts on-the-ground advocacy in support of candidates and policies to curb drug prices. It does not accept funding from any organizations that profit from the development or distribution of prescription drugs.