Welcome to the Week in Review.
1. Big Pharma Caught In Contradiction
2. The Growing Impact Of The Inflation Reduction Act
3. The Power of Public Pressure
PRICE WATCH: Lenmeldy, a new life-saving gene therapy for the genetic disorder metachromatic leukodystrophy (MLD) will be the most expensive drug in the world at $4.25 million. Innovation is worthless if patients can’t afford it — we urgently need to address the high launch prices of transformative cell and gene therapies coming to market.
Have a great weekend!
Welcome to the Week in Review.
1. Biden Promises to Expand The Inflation Reduction Act
2. Exposing Big Pharma Lies
3. Medicare Negotiation Puts Patients Over Profit
BONUS: A new study from Bentley University shows that the National Institutes of Health (NIH) invested $11.7 billion on research leading to the approval of the first 10 drugs up for Medicare negotiation. Lower negotiated drug prices will help ensure patients and taxpayers get a better deal on these widely-used, high-cost medications. We deserve a fair return on the drugs taxpayers paid to invent!
Have a great weekend!
My name is Rose Keller, I am a 22-year-old student at Bowdoin College. As an infant, I was diagnosed with cystic fibrosis, a rare and progressive genetic disorder with no cure. And my ability to breathe depends entirely on numerous prescription drugs.
Like countless others grappling with chronic illnesses, I’ve witnessed firsthand the burden exorbitant drug costs have imposed on my family. Last year alone, my family spent almost $3,000 out-of-pocket for my life-sustaining medications.
The only medication that treats the underlying cause of my disease carries an annual list price upwards of $300,000. The medication brings enormous relief, but its cost casts a shadow over my life.
As a young adult about to graduate from college, I should be focused on my next steps – finding a job, applying to law school, and weathering my dad’s embarrassing stories at graduation. One day, I hope to be an attorney who fights for good governance practices and effective public administration. I want to spend my time planning for that future.
Instead, I am worried about my ability to afford my health care and live an independent life. But amidst these challenges, the Biden Administration has offered a glimmer of hope.
President Biden said he’d take on big pharma and beat them – and he has. His Inflation Reduction Act lowered prescription drug prices for seniors. It’s a big deal.
Now he’s fighting to cap out-of-pocket drug costs at $2,000 for all Americans. For people like my family. For people like me.
President Biden believes health care is a right – not a privilege, and so do I.
Welcome to the Week in Review.
1. Biden Promises to Expand The Inflation Reduction Act
In a week marked by significant developments in the fight to make medicine more affordable, Patients For Affordable Drugs Now (P4ADNow) applauded President Biden’s ongoing commitment to reducing drug prices for patients nationwide. The Biden Administration’s proposals to expand Medicare negotiation to 500 drugs over a decade and extend cost-saving measures to millions of people on private insurance, among other reforms, signals a potentially monumental step toward achieving affordable drugs for every American. Furthermore, President Biden’s State of the Union address underscored the historic achievements of the Inflation Reduction Act for patients and highlighted the proposals he had announced on the eve of the address. P4ADNow patient advocate, Steven Hadfield, emphasized the impact of the reforms, sharing his personal experience and the relief he has felt thanks to capped monthly insulin costs and expressed hope for further relief brought by Medicare negotiation. His presence as a guest of First Lady Jill Biden during the State of the Union exemplifies the urgency and importance of lowering drug prices for millions of Americans. P4ADNow continues to advocate for the implementation of the new drug price law and bipartisan bills in Congress that help address the challenges faced by patients like Steven. We know the momentum and public pressure to reduce drug prices are stronger than ever. – (P4ADNow, P4ADNow, STAT News, Pharma Phorum, P4AD, AARP, NPR, New York Times, Yahoo News, P4ADNow)
A quick selfie with P4AD patient advocate, Steven Hadfield, before he joined First Lady Jill Biden for the SOTU
2. Legal Battles Over Medicare Drug Price Negotiation Heat Up
On Thursday, a federal district judge in New Jersey heard oral arguments in four of several cases challenging Medicare’s authority to negotiate drug prices. In a courtroom exchange that captured attention, Judge Zahid Quraishi probed the industry’s arguments and questioned the purported financial burdens Medicare negotiation would have on drugmakers, injecting a note of skepticism by remarking, “A lot of people would say pharmaceutical companies could give up an arm. They have a lot of appendages.” This observation reinforced the judge’s scrutiny of the industry’s claims. Rachel Cohrs of STAT News highlighted the judge’s remarks that these big drug companies were “businesses with the goal of profit… These companies are not Mother Teresa developing drugs for free for the American public.” A P4AD patient advocate was also in the room representing patients and listening to the arguments, which came just days after a federal judge in Delaware issued a sweeping ruling against pharmaceutical giant AstraZeneca in a case brought by the drug company seeking to overturn Medicare negotiation. Last month, a federal district judge in Texas dismissed a similar lawsuit from the industry trade group Pharmaceutical Research and Manufacturers of America (PhRMA), and in September a District Judge in Ohio ruled against the U.S. Chamber of Commerce’s case. That’s three times that a judge has ruled against pharma and for patients of the United States, and as this headline from Fast Company puts it, “Big Pharma is losing its fight to avoid prescription-drug-price negotiations”. – (P4AD, STAT News, BioSpace, Endpoints News, Georgetown Law, Reuters, FastCompany)
3. Boehringer Ingelheim Caps Inhaler Costs Amid Public Pressure
In a move spurred by mounting public pressure and widespread demand for lower drug prices, Boehringer Ingelheim has announced plans to cap out-of-pocket costs for its inhaler products at $35 per month starting June 1. The decision comes amidst growing criticism, notably from Senator Bernie Sanders, who, in his role as chair of the Senate Committee on Health, Education, Labor, and Pensions (HELP) launched an investigation into efforts by pharmaceutical companies to manipulate the price of asthma inhalers. These big drug companies have heard widespread complaints from American patients and consumers about the inability to afford their inhalers, especially considering they are drastically cheaper in other countries. This move draws parallels to actions taken by insulin manufacturers, including Sanofi, Novo Nordisk, and Eli Lilly, all of whom lowered the price on some of their older insulins after years of criticism over pricing practices. These developments help underscore the power of grassroots advocacy in driving industry reforms. While welcomed by many patients, Boehringer Ingelheim’s action demonstrates the ongoing need for sustained efforts to guarantee access to essential medications for all patients. – (Reuters, STAT News, The Lancet, The Hill, FiercePharma, P4AD)
In response to President Biden’s comments in his State of the Union address about the historic drug price reforms in the Inflation Reduction Act and the forward-looking proposals he announced to further reduce drug prices, Merith Basey, Executive Director of Patients For Affordable Drugs Now, issued the following statement:
“Tonight, President Biden highlighted the monumental drug price reforms achieved through the Inflation Reduction Act, a cornerstone of his agenda and an issue that is overwhelmingly supported by the American people who are tired of being ripped off by pharmaceutical companies to the detriment of their lives and livelihoods.
“The enactment of the historic drug price reforms, coupled with the President’s proposal to more than double the number of drugs subject to Medicare negotiation and expand cost-saving measures to millions of people on private insurance, would be transformative toward ensuring that everyone in the U.S. can access the drugs they need at prices they can afford.
“This landmark legislation is a testament to the relentless efforts of patients. While we are already witnessing the impact of some of these reforms to lower drug prices, we continue to hear from patients burdened with high drug prices who are desperate for relief. On behalf of patients, we will continue to advocate for policies that protect and expand on the drug price reforms in the Inflation Reduction Act, dismantle Big Pharma’s abuse of the patent system, and make drugs more affordable for all who need them.”
P4ADNow patient advocate, Steven Hadfield, was a guest of First Lady Jill Biden in her box during the State of the Union this evening. Steven, who is 71 and a longtime resident of North Carolina, takes Januvia for his diabetes, which is one of the first 10 drugs selected for Medicare negotiation. He is also living with blood cancer and despite being in his 70s, cannot retire due to the price of his medications. He shared the following statement:
“’For far too long, big drug companies have made a fortune while patients like me live in constant fear, wondering how we’ll pay for our medicine. The Inflation Reduction Act has been a lifeline, reducing my insulin costs from $400 to $35 per month. Medicare’s ability to negotiate lower drug prices offers hope for millions of patients like me. Less expensive drugs would finally allow me to rest more often or hopefully help me transition from working full-time to working part-time. I am honored to be a guest of First Lady Jill Biden during the State of the Union as President Biden advocates for lower drug prices. He understands that drugs don’t work if people can’t afford them.”
BACKGROUND
The historic Inflation Reduction Act is lowering prescription drug prices and reducing out-of-pocket costs for millions of people in this country.
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Patients for Affordable Drugs Now, the C4 arm of P4AD, is the only national, bipartisan patient advocacy organization focused exclusively on policies to lower drug prices. We help educate and mobilize patients in support of legislation to fix our broken system. P4ADNOW does not accept funding from organizations that profit from the development and distribution of drugs.
Today, the Biden Administration announced proposals to more than double the number of drugs to be negotiated by Medicare and expand the $2,000 cap on out-of-pocket prescription drugs to people on private insurance – extending savings to an additional 189 million people not on Medicare.
The proposal also includes a $2 cost-sharing limit for specific generic drugs such as statins and beta-blockers for people on Medicare Part D, improving access to cell and gene therapies, starting with addressing sickle cell disease, a condition that affects more than 100,000 people in the United States, and extending requirements for drug companies to pay rebates when their price increases exceed the rate of inflation.
Merith Basey, Executive Director of Patients For Affordable Drugs Now, responded to the proposal with the following statement:
“These proposals would expand on the historic progress already being made as a result of the drug price reforms in the Inflation Reduction Act. For two decades, Americans have been held hostage by a system preventing the United States government from negotiating for lower drug prices on behalf of patients. These proposals would build upon hard-won victories and represent another step forward for patients and advocates in our ongoing fight to ensure that every person can get the drugs they need at prices they can afford. As we continue to hear from patients every day who are being forced to make impossible choices between skipping their medication or paying their bills —the urgency of this fight has never been more apparent.”
Americans pay 3-8 times more than other high-income nations for brand-name prescription drugs, and over 90 percent of voters from across the political spectrum said lowering prices should be an important or top priority for Congress. This announcement on the eve of President Biden’s State of the Union address, signals the Biden Administration’s commitment to prioritizing lowering drug prices in the coming year.
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Welcome to the Week in Review.
1. Court Deals Major Blow to AstraZeneca
2. Legislators Oppose Efforts To Undermine The Inflation Reduction Act
3. The High Cost Of Insulin
A new study published in Diabetes Research and Clinical Practice highlights the escalating financial burden faced by people managing diabetes. Researchers found that from 2009 to 2018, total costs associated with diabetes care increased, with people living with type 1 diabetes experiencing the most substantial rise in out-of-pocket expenses. “Studies show that the more a patient pays out-of-pocket, the less likely they are to stick with their medication long term, which poses a serious risk to their health,” said lead author Evan Reynolds. Fortunately, the $35 monthly insulin copay cap for patients on Medicare in the Inflation Reduction Act has brought significant savings for patients. But, there’s more to be done to ensure everyone can access their insulin at prices they can afford. — (University of Michigan, KFF)
BONUS: A new report from Protect Our Care found that in 2023, 16 of the largest drug companies reported a whopping $684 billion in earnings — ”a figure that is higher than the gross domestic product (GDP) of 88 percent of the countries in the world.” Remind us again how drug companies are hurting from the new drug pricing reforms?
Patients For Affordable Drugs Now Founder Sets The Record Straight On Key Incentives For Innovation In Historic Drug Price Law Ahead of Energy and Commerce Health Subcommittee Hearing
David Mitchell, founder of Patients For Affordable Drug Now and a patient with a rare incurable cancer, urged Congress not to bend to drug industry scare tactics and fear-mongering and not to weaken provisions to lower prices in the Inflation Reduction Act. He made his remarks in an expansive 21-page statement submitted to the House Energy and Commerce Subcommittee on Health, ahead of tomorrow’s hearing focused on legislative proposals related to rare diseases.
Mitchell’s statement sets the record straight regarding the Inflation Reduction Act’s impact on small-molecule drugs. He refutes with real-world evidence, claims from the pharmaceutical industry that investments in small molecules would lag following the passage of the law and underscores the importance of safeguarding orphan drug incentives while preventing pharmaceutical industry abuse.
Drawing from his own experience as a rare disease patient, Mitchell highlights how the Inflation Reduction Act effectively addresses both innovation and affordability concerns. “I care deeply about innovation and new drug development. My life depends on it. Without innovation, I will die sooner than I hope to. That is just an unfortunate fact,” he wrote. “The Inflation Reduction Act restores balance to move us in the direction of fair prices and profits while still getting the innovation we need.”
David’s statement also highlights the stories of two patients, Sue from Wilmington, Delaware, and Cheryl from Louisville, Kentucky. Sue is living with a form of blood cancer and takes Imbruvica, which costs $18,000 a month. After insurance, she pays the first $8,000 in 2-month copays and then $1,000 a month thereafter. At 76 years old, Sue is working full-time to afford this medication, but because of the Inflation Reduction Act, she will save between $12,000-$14,000 this year with the out-of-pocket cap phasing in at the catastrophic level. Cheryl requires inhalers, like Trelegy, but because of the price, she often goes without until she has a bad episode. The $350 to $800 price tag per month presents a significant financial burden for Cheryl, who emphasized the absurdity of such costs for essential medication needed to breathe every day. Their experiences shed light on the urgent need for lower drug prices to ensure access to vital treatments for all patients.
Key highlights from the statement underscore the law’s profound impact on innovation and affordability:
You can find the full written statement HERE. David will also be available for interviews and to comment on tomorrow’s hearing. To schedule please reach out to Emma Sands at [email protected]
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