Latest News | May 17, 2024

This Week in Drug Pricing: Bearing The Cost Of Gene Therapies, Public Awareness Of Relief From The Inflation Reduction Act Grows, and P4ADNOW On The Hill

Welcome to the Week in Review.

1. Bearing The Cost Of Gene Therapies
A major milestone was reached earlier this month as 12-year-old Kendric from Washington, D.C. became the first patient living with sickle cell to begin a Food and Drug Administration (FDA) approved gene therapy with the potential to cure his disease. Sickle cell disease is a lifelong blood condition that affects 100,000 people in the United States and 20 million people worldwide — most of whom are Black and Brown. However, the newly approved sickle cell gene therapies, Lyfgenia and Casgevy, are currently priced at $3.1 million and $2.2 million per patient respectively. Such exorbitant launch prices will create unsustainable budget pressures for governments, insurers, and employers — and most critically will limit patient access to these treatments. While gene and cell therapies have the potential to transform medicine and patients’ lives, potentially offering cures for previously intractable diseases like sickle cell, and leukemia or lymphoma, there is an urgent need to find sustainable pricing models. These models must strike a balance between incentivizing innovation and improving access and affordability, because everyone deserves access to the medicines they need at prices they can afford. — (The New York TimesPress-TelegramX)

2. Public Awareness Of Relief From The Inflation Reduction Act Grows
KFF poll released this week highlights the growing awareness among older voters of the drug pricing provisions in the Inflation Reduction Act — which enjoys support from 71 percent of all voters. Between November 2023 and May 2024, the share of voters ages 65 or older who knew about Medicare’s authority to negotiate drug prices increased from 36 to 48 percent, those aware of the $35 monthly insulin copay cap increased from 45 to 52 percent, and those familiar with the $2,000 cap on out-of-pocket costs went up from 27 to 40 percent. Notably, a majority of voters across the political spectrum support extending certain provisions of the monumental drug price law to all adult patients with insurance, as well as increasing the number of drugs subject to Medicare negotiation. However, the reality remains that only 45 percent of Americans have heard about the drug price reforms in the Inflation Reduction Act, underscoring the ongoing need to ensure patients are not only aware of the benefits of the drug price provisions, but are able to access them. — (KFFThe Washington PostNavigator ResearchKFF)

P4ADNOW ON THE HILL: On Tuesday, May 21st at 10 a.m. P4ADNOW’s founder and cancer patient David Mitchell will testify before the Senate Judiciary Committee at a hearing titled “Ensuring Affordable & Accessible Medications: Examining Competition in the Prescription Drug Market.” In his testimony, David will highlight how drug companies use anti-competitive tactics and abuse loopholes in the patent system to prolong their monopolies on drugs, blocking competition and keeping prices high for patients. 

WATCH: Major drug companies have launched aggressive lawsuits seeking to dismantle the new Medicare negotiation program and regain their complete pricing power. P4AD’s Merith Basey joined RJ Eskow on “The Zero Hour” to talk about Big Pharma’s legal assault and the recent rulings in favor of patients. 

Welcome to the Week in Review.

1.  Drug Companies Game The Patent System
As blockbuster drugs approach patent expiration, major pharmaceutical companies are deploying manipulative tactics to extend their monopoly pricing power and delay or prevent lower-cost competition. In 2023, the cancer drug Keytruda was the top seller with $23 billion in sales, in 2028 the manufacturer Merck is set to lose a key patent on the drug which would allow biosimilar alternatives into the market and reduce the corporation’s revenues. Merck is not alone in exploiting the patent system. AbbVie, the maker of best-selling Humira, notoriously constructed a “thicket” of more than 160 patents around the drug, delaying affordable biosimilar alternatives for decades and forcing patients to bear exorbitant prices. While the drug companies stop at nothing to maximize their profit margins, even at the expense of patients, P4ADNOW is working to advance bipartisan legislation to curb these anti-competitive practices and secure lower drug prices for all Americans. — (Quartz, The New York Times, P4ADNOW)

2. Big Pharma’s Actions Belie R&D Claims
In the first quarter of 2024, the ten drugs selected for Medicare negotiation brought in $16.5 billion in revenue, contributing to $25.4 billion in combined profits for the drug manufacturers. An Accountable.US report revealed this week that in 2023, the eight drug companies that manufacture these 10 drugs collectively spent $95.9 billion on research and development (R&D), while also shelling out $162 billion, almost twice as much, for stock buybacks, dividends, and marketing and administrative costs and nearly $500 million on executive compensation. The findings expose the continued hypocrisy of the pharmaceutical corporations that are challenging the Medicare negotiation program in court. While claiming that lower negotiated drug prices will severely impact their ability to innovate and invest in new drugs, these companies dedicated a disproportionate amount of their resources for payments to executives and shareholders and have plenty of capital to spare to invest in new R&D. — (Protect Our CareAccountable.USThe Hill

BONUS: According to a national poll conducted by the University of Michigan, 54 percent of adults over the age of 50 said they were “very concerned” about the cost of prescription drugs. While the drug price reforms in the Inflation Reduction are already lowering drug costs for millions of patients on Medicare there are more victories to be won that will lower drug prices for everyone in the US.

Welcome to the Week in Review.

1. Pharma Faces Setback in Legal Battles To Stop Medicare Negotiation
Big Pharma’s bid to obstruct the implementation of the Medicare Negotiation program suffered a significant setback on Monday as a federal judge ruled against Bristol Myers Squibb and Janssen Pharmaceuticals in their lawsuits challenging the constitutionality of the program – marking the fourth time a judge has ruled against the drug industry and in favor of patients. “There is no doubt that this ruling is a win for patients. It eviscerates the strongest arguments in Big Pharma’s coordinated multi-million dollar attack on Medicare negotiation,” shared P4AD’s Merith Basey following the decision. Since the ruling, both drug companies have indicated that they will appeal the ruling, despite the judge’s unequivocal rejection of their central arguments. On the same day, AstraZeneca filed a separate notice to appeal a judge’s March decision rejecting the corporation’s lawsuit challenging the program. On Wednesday, the Pharmaceutical Research and Manufacturers of America (PhRMA), alongside the Global Colon Cancer Association and the National Infusion Center Association (NICA), presented oral arguments in their appeal in Texas. Currently the scoreboard reads patients: 4, Big Pharma: 0. — (ReutersPatients For Affordable DrugsFierce PharmaPatients For Affordable DrugsCNN

2. Drug Price Reforms Enjoy Broad Support Despite Low Awareness
A Navigator Research poll released this week revealed robust bipartisan support for the drug price reforms in the Inflation Reduction Act, with 71 percent of voters backing the historic law. Across the political spectrum, a majority of voters strongly support key provisions benefiting patients on Medicare: 87 percent support capping insulin out-of-pocket costs at $35 a month, 83 percent support penalizing drug companies that raise prices faster than the rate of inflation, and 74 percent support the $2,000 cap on out-of-pocket costs taking effect next year. Despite widespread support, less than a third of respondents report awareness about these reforms, highlighting the need for broader education efforts. In a Washington Post column this week, Leana S. Wen, a professor at George Washington University, outlined the key provisions of the drug price law and emphasized the urgent need they seek to address: one in five older adults forgo their prescriptions due to cost. — (Navigator ResearchThe Washington Post)

3. The Looming Cost of Inhalers 
GlaxoSmithKline (GSK) is facing criticism over its decision to discontinue its popular Flovent asthma inhaler, one of the most commonly prescribed inhalers for children, and replace it with a costly generic inhaler not covered by many insurers — forcing thousands of families to pay its full list price ranging from $150 to $250 per month. Given that asthma is more common and often more severe for Black, Latino, and low-income children, it is these families who are disproportionately harmed when already high inhaler prices increase. Exploiting loopholes in the patent system, these companies routinely withdraw effective treatments from the market and force patients to transition to newer, more expensive versions. This deceptive practice of “product hopping” is one of the drug industry’s favorite tactics. Fortunately, several bipartisan bills in Congress, supported by P4ADNOW, are poised to address such tactics and bring down costs for patients. — (The Washington PostCNNUS News)

BONUS: New data released by the Department of Health and Human Services (HHS) showed that more than 10 million people on Medicare received a free vaccine in 2023 thanks to the Inflation Reduction Act, a significant increase from 2021 when just 3.4 million people received a vaccine covered under Medicare. 

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. 

Welcome to the Week in Review.

1. Drug Industry’s Lobbying Surge
New lobbying disclosures show that Big Pharma increased their lobbying spending during the first three months of 2024 compared to the same period last year, to stop reforms that would lower drug prices. Pharmaceutical Research and Manufacturers of America (PhRMA), the top industry trade association which filed a lawsuit alongside the National Infusion Center Association and the Global Colon Cancer Association to block the implementation of Medicare negotiation, also increased their lobbying spending by 20 percent in the first quarter of 2024, to $9.6 million. Novartis, the drug manufacturer suing to stop Medicare from negotiating the price of its heart failure drug Entresto, boosted their lobbying spending by 44 percent during the same period. Recent quarterly earnings show that three other drug corporations filing lawsuits to block implementation of the Medicare negotiation program — AstraZeneca, Bristol Myers Squibb, and Merck — reported $40.33 billion in combined revenue last quarter. Despite the drug industry’s claims that the historic drug price law would stifle their revenue, it appears that pharma has plenty of money to double down on lobbying efforts to continue to protect their unfettered pricing power. — (PoliticoAxiosFierce PharmaReutersAccountable.US)  

2. Court Watch 
Next week could bring new twists in Big Pharma’s legal efforts to stop the implementation of Medicare negotiation. AstraZeneca has until Tuesday to file a notice of appeal in its case, after a March ruling that rejected the company’s attempt to overturn Medicare negotiation. Then on Wednesday, PhRMA, the Global Colon Cancer Association, and the National Infusion Center Association will present oral arguments as they appeal the dismissal of their earlier lawsuit challenging Medicare’s negotiation authority. Thus far, judges have ruled three times in favor of patients over the pharmaceutical industry, and we continue to watch closely as the industry’s multi-million-dollar assault on the Inflation Reduction Act wages on. P4AD has launched the “US v Pharma” campaign (in English and Spanish), to mobilize patients and allies to defend this hard-won victory against Big Pharma’s relentless attacks. — (Endpoints NewsGeorgetown

BONUS: The Senate Health, Education, Labor, and Pensions (HELP) Committee launched an investigation this week into the high list prices of Novo Nordisk’s drugs for type 2 diabetes and weight loss, Ozempic and Wegovy, which cost $969 and $1,349 for a month’s supply respectively. Groundbreaking treatments coming to market must be fairly priced in order to maximize public health and lessen the financial burden of essential medicines for patients.

Welcome to the Week in Review.

1. Companies Opposing Medicare Negotiation Rake In Huge Profits 
Leading drug companies are going to great lengths to protect their profits at the expense of patients. Despite being the top pharmaceutical earner with $85.16 billion in 2023 revenue, Johnson & Johnson (J&J) is suing to block Medicare’s new price negotiating authority. Three of J&J’s medications – Xarelto, Imbruvica, and Stelara – are among the first 10 drugs subject to these negotiations. And the human impact of Big Pharma’s efforts is enormous. Medicare negotiation is crucial for P4AD patient advocate Lynn Scarfuto, who takes Imbruvica to treat her cancer, and which has a list price of $17,000 per month. After negotiation, the net price for a 30-day supply of Imbruvica could be reduced to an estimated $6,548. Merck, which ranked close behind J&J with $60.1 billion in 2023 revenue, spearheaded opposition to the program aimed at lowering costs for people like Lynn, filing the first lawsuit against Medicare negotiation last summer. Merck’s diabetes drug Januvia, also selected for negotiation, currently carries a list price of $573 per month. Rather than accept reforms that are expected to save patients on Medicare hundreds of dollars per month, Big Pharma is forcing patients to make impossible choices between their health and financial security. — (Fierce PharmaFightPharma.orgCenter For American ProgressFierce Pharma)

2. Insulin Maker’s Bait and Switch
The insulin industry’s exploitative practices are once again on display in Novo Nordisk’s latest shady maneuver. As one of the “big three” manufacturers controlling 90 percent of the global insulin supply, Novo Nordisk faces intense scrutiny for its pricing practices. Last year, in a move that at face value signaled progress to some, the company announced plans to reduce the list prices of several of its insulin products beginning January 1, 2024. This included lowering the price of Levemir by 65 percent, bringing it in line with the $35 insulin copay cap established in the Inflation Reduction Act. This move followed a similar commitment by competitor Eli Lilly and came just days before Sanofi’s announcement. But, before the price cut took effect, Novo Nordisk announced that Levimir would be discontinued. This decision left patients like Sara in Ohio scrambling to find an alternative to the drug she had relied on for years to manage her diabetes. Senators Shaheen, Warnock, and Warren were quick to condemn Novo Nordisk’s actions and demanded clarification on whether patients would have access to affordable long-acting insulin alternatives or if a biosimilar version of Levemir was planned. The Senators’ letter highlighted the insulin industry’s long history of exploiting patients through exorbitant pricing and seemingly temporary promises of relief. — (USA TodayCNNNBC NewsAxiosReutersFierce PharmaOffice of Senator Shaheen

PATIENT SPOTLIGHT: In 2023,patient advocate Ginny Boynton, a mother of two, who lives with Lambert-Eaton myasthenic syndrome, faced out-of-pocket costs totaling over $30,000 for her essential medications. But this year, thanks to the Inflation Reduction Act, Ginny is celebrating. Due to the phasing in of the new cap on out-of-pocket costs at about $3,500 if you reach the catastrophic coverage phase for drugs covered by Medicare Part D, her costs have dramatically been reduced. Next year, Ginny can look forward to even greater savings when the $2,000 out-of-pocket cap is implemented. 


Welcome to the Week in Review.

1. Facts VS Pharma Fear Mongering

2. Becerra’s National Latino Health Tour

BONUS: Chimeric antigen receptor T-cell therapy (CAR-T), a groundbreaking type of cancer immunotherapy, is currently priced upwards of $350,000 for patients in the U.S. Last month, Fiocruz, a research foundation, and Caring Cross, a nonprofit working to develop advanced medicines, announced local efforts in Brazil to produce CAR-T treatments. The cost? Likely one tenth of the U.S. price, at around $35,000 per dose. Given the many cell and gene therapies in the pipeline here in the United States, it’s imperative that we find a way to tackle launch prices so that people who need these revolutionary drugs can access them at prices they can afford. 

Welcome to the Week in Review.

1. Patient Advocate Introduces POTUS

Kris Garcia following the event focused on lowering inhaler costs at The White House

2. P4AD Launches New Tool to Defend Medicare Negotiations

3. Lowering Drug Costs For Women

PHARMA FACT CHECK: The Centers for Medicare and Medicaid Services (CMS) remains in negotiation with manufacturers of the initial 10 drugs selected for negotiations, having rejected their latest counter offers. Contrary to the assertions of Big Pharma and its allies that Medicare negotiation constitutes “price-setting,” recent actions by both drug companies and CMS, involving offers and counteroffers, debunk this narrative and underscore a genuine negotiation process.

Welcome to the Week in Review.

1. Curbing Drug Price Hikes

2. Cracking Down On Inhaler Patents 

3. Big Pharma’s Big Bag

BONUS: According to a new study published in JAMA, blockbuster diabetes, heart disease, and weight loss drug, Ozempic, could be manufactured for less than $5 monthly, and still be profitable, despite carrying a monthly list price of nearly $1,000. We urgently need legislative action to rein in these exorbitant prices. Drugs don’t work if people can’t afford them. 

Follow our social channels for an exciting announcement next week in our ongoing fight against Big Pharma and efforts to defend the hard-fought reforms already lowering drug prices!

Have a great weekend!