The Week in Review in Prescription Drug Pricing: P4AD Releases New Video on The ETHIC Act, SCOTUS Protects Generic Competition, and more
Welcome to the Week in Review.
P4AD Releases New Video on The ETHIC Act
Patients For Affordable Drugs Now released a new video featuring patient advocates and staff highlighting the bipartisan ETHIC Act ahead of this week’s House Judiciary hearing on patent law and prescription drug access. Introduced by Sens. Peter Welch, Josh Hawley, and Amy Klobuchar, the bipartisan ETHIC Act would make it easier for generic manufacturers to challenge duplicative patents — lowering barriers to entry and helping drive down costs for patients as well as taxpayers. The bill is gaining traction as lawmakers increasingly focus on how patent thickets delay competition. To date, P4ADNow has mobilized nearly 16,000 patient advocates to contact Congress in support of ETHIC and submitted written testimony to a House Judiciary Subcommittee hearing on ETHIC Thursday. AARP and the ERISA Industry Committee also joined P4ADNow in a joint letter to Congressional leadership urging action. — [P4AD, Testimony, Joint Letter]
SCOTUS Protects Generic Competition
The Supreme Court unanimously ruled in favor of generic drugmaker Hikma Pharmaceuticals, preserving a critical pathway that allows lower-cost alternatives to come to market. The case focused on “skinny labeling,” which lets generics launch for unpatented uses, without waiting for every patent on a drug to expire. Had the court ruled the other way, generic manufacturers could have faced increased legal risk when following the rules established by Congress and the FDA — meaning delayed competition, and higher drug prices for patients and taxpayers. Competition is one of the most effective mechanisms for lowering prescription drug prices. — [SCOTUS, Fierce Pharma, IP Watchdog, POLITICO, STAT News, Endpoints News]
New TrumpRx Drugs Don’t Fix Existing Problems
Despite the Trump administration billing the 160 new medications coming to TrumpRx as new deals, these — like last month’s announcement of 600 generic drugs — are instead simply links to existing cash-discount programs already available to patients. While TrumpRx may help some patients navigate existing options, it does not address the underlying drivers of high costs — including the structural conditions that allow drug companies to price-gouge Americans for their essential medicines. — [Washington Times]
ICYMI: The FDA released new draft guidance allowing developers to leverage existing scientific and manufacturing knowledge (from past studies, similar therapies, or their own previous work) to streamline the development of cell and gene therapies. The move is part of a broader effort to reduce regulatory friction and speed approvals of these complex treatments. While faster development can improve access, it does not necessarily translate to lower prices, particularly with therapies that already launch at extremely high costs, such as a treatment for sickle cell disease that costs $2.2 million per patient. — [Endpoints News, Axios]
Patient Advocate Spotlight
Name: Mary Schmidt
Condition: Pityriasis Rubra Pilaris (PRP) Drugs: Prescribed Otezla ($3,000 / month) but is unable to afford the cost Background: Patient Advocate from Devine, Texas
In Her Words: “When I was first prescribed Otezla, it worked very well. In an attempt to continue the medication, I applied to the drugmaker’s assistance program because I knew it was very expensive. I attempted to prove to them that I was on a limited income. I even had to apply for Extra Help via Texas’s Health and Human Services which sent me a letter saying I could get $1,600 of additional coverage, but that would still be way too expensive.
As a result, I had to go on Methotrexate — a drug that has the potential to do more harm than good for me. I had to have my blood drawn regularly and would bruise badly because of my condition. Next, I was put on Skyrizi and was accepted into their assistance program for a year — but it then came time to renew, and I haven’t been able to get back into the program again.
This has been an ongoing issue, and I’ve done everything possible on my part. In the meantime, I’m forced to call my dermatologist and ask if they have a sample, simply to get my next dose. Otezla and Skyrizi cost thousands of dollars that I do not have. Medication for profit is really sad and life-threatening to patients like me.”
WASHINGTON, D.C. — Today, Patients For Affordable Drugs Now released a new video featuring patient advocates and P4ADNow staff highlighting the bipartisan ETHIC Act and how the legislation would help curb one of Big Pharma’s most common tactics for blocking lower-cost competition to keep drug prices high.
The ETHIC Act would address patent thickets — a practice in which brand-name drugmakers accumulate dozens, and sometimes hundreds, of overlapping patents on a single medicine. These patent thickets can be used to block generic and biosimilar competition through costly litigation, entrenching monopolies and forcing patients to pay higher prices for brand-name medications for longer.
Introduced by Sens. Peter Welch, Josh Hawley, and Amy Klobuchar, the bipartisan ETHIC Act would require generic manufacturers to challenge only one patent per patent family rather than litigating against dozens of duplicative patents. The reform would preserve legitimate patent protections while helping prevent abuse of the system to delay competition.
Patent-protected brand-name drugs only make up about 10% of prescriptions, but account for three-quarters of drug spending in the U.S. On average, there are 74 patents per top-selling drug, and when challenged, more than two-thirds of secondary patents are invalidated.
Kris Garcia, Patient Advocate: “Americans pay the highest drug prices in the world.”
Lisa Ann Trainor:“A big reason why is because branded drug companies game the patent system to block patients from accessing lower-cost generics and biosimilars.”
Sarah Wisniewski, Patient Advocate: “One of the ways they do this is by amassing dozens, often hundreds, of patents on a single drug. Then their lawyers use these patents to sue competitors when they try to launch lower-cost generics.”
Alejandra Borbolla Diaz:“Often, brand-name drug companies aren’t even necessarily trying to win the lawsuit. They just want to tie their competitors up in court so they can’t launch their products.”
Merith Basey:“The ETHIC Act is a bipartisan bill introduced by three Senators: Peter Welch, Josh Hawley, and Amy Klobuchar. If passed, this bill would help stop big pharma from bombarding competitors with frivolous patent lawsuits that delay them from launching generics and biosimilars.”
Emma Sands:“So, the ETHIC ACT. It’ll rein in these patent games, which will lead to more competition, which will lead to lower drug prices.”
Kris Garcia:“That’s good for patients. Really good for patients. That’s why we’re fighting to pass the ETHIC Act. Get involved at www.patientsforaffordabledrugsnow.org.”
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Patients For Affordable Drugs Now is the only national, patient advocacy organization focused exclusively on policies to lower drug prices. We empower and mobilize patients and allies, hold accountable those in power, and fight to shape and achieve system-changing policies that make prescription drugs affordable for all people in the United States. P4ADNow is bipartisan and does not accept funding from organizations that profit from the development or distribution of prescription drugs. To learn more, visit: PatientsForAffordableDrugsNOW.org
Welcome to the Week in Review.
Patent Barriers Delay Generic Ozempic in the U.S.
Generic versions of semaglutide – the active ingredient in Ozempic and Wegovy – are beginning to enter the market in countries such as India and Canada. At the same time, Americans may not see a generic version until at least 2031, and potentially much later. The gap reflects how the U.S. patent system allows manufacturers to layer dozens of additional patents on top of a single drug — delaying competition and extending monopoly pricing. Ozempic can still cost up to $1,000 per month in the U.S., putting it out of reach for many patients. As lower-cost alternatives expand globally, the contrast highlights the need for patent reforms to ensure generics can enter the market sooner and patients aren’t left waiting years longer for affordable options. — [NBC News]
Bipartisan Push Targets Pharmacy-PBM Integration
A bipartisan group of lawmakers reintroduced legislation this week that would forbid large health care companies that own pharmacy benefit managers, or insurance companies, from directly owning pharmacies. If passed the bill would give companies a year to sell their pharmacies. The Patients Before Monopolies Act reflects growing scrutiny of vertically integrated firms like CVS, UnitedHealth, and Cigna, which control key parts of the drug supply chain. The proposal underscores rising frustration in Congress over the complexity and opacity of the system. Following the PBM reforms that passed earlier this year, vertical integration is receiving more scrutiny as a way to lower prices for patients and the system as a whole. — [USA Today, Fierce Healthcare]
Tariff Policy Drives Industry Workarounds – Not Lower Prices
As the Trump administration moves toward potential 100% tariffs on imported drugs, companies are already adjusting – with larger manufacturers better positioned to navigate the policy framework than smaller firms. The early response makes one thing clear: tariffs are reshaping how companies operate, but not addressing the root causes of high drug prices. For patients, the risk is that added costs and disruption will be absorbed into the system–and undoubtedly passed on to themat the pharmacy counter.— [Fierce Pharma, Endpoints News]
ICYMI: Sen. Peter Welch (D-Vt.) said this week he would “actively and aggressively” support a most-favored-nation drug pricing policy, pointing to growing bipartisan interest in aligning U.S. prices with those in other countries. His comments come as questions remain about the scope and transparency of the administration’s current MFN deals. Senator Welch is a co-sponsor on an International Reference Price bill with Sen. Hawley (R-MO).
More than 40,000 vetted patient stories are now featured on P4AD’s interactive map, representing every state and congressional district and documenting the harm of high drug prices. What began with one story – from founder David Mitchell – has grown into a nationwide movement of patients pushing for policies that lower drug prices. The sobering milestone underscores both the scale of the crisis, which spans every congressional district, and its impact across communities. — [P4AD]
White House MFN Savings Estimates Raise Questions
The administration’s projected savings from its most-favored-nation (MFN) deals rely heavily on modeling and a series of optimistic assumptions rather than observed policy outcomes. The estimates span all payers — including Medicare, Medicaid, and commercial insurance — even though the underlying agreements are limited in scope and largely confidential, making it difficult to verify the White House’s projections. The analysis assumes codification of the deals, a 30% reduction in U.S. drug prices over time, broad and sustained manufacturer participation, and even global price shifts – all of which are uncertain. It also counts significant savings from applying MFN pricing to future drugs that don’t yet exist, based on historical data projected forward. The projections also hinge on the passage of a bill that would allow people with employer-based insurance to apply expenditures through direct-to-consumer purchasing programs to their deductible. Early disclosures further complicate the picture: filings from companies like Merck and Sanofi indicate that some high-cost and newly launched drugs are excluded, while others suggest agreements may expire after three years – raising questions about how long any savings would last. Taken together, the estimate reflects a potential future scenario rather than a clear picture of what patients are likely to experience in the near term. [White House, STAT News, Forbes]
New Report Highlights Growing Use of Patent Tactics to Delay Competition
A new report from Generation Patient finds that pharmaceutical companies are increasingly using a mechanism called terminal disclaimers to build patent thickets that delay generic competition and keep drug prices high. Nearly 70% of drug patents filed between 2017 and 2021 included terminal disclaimers, up from 36% in the early 2000s. These patents are also appearing more frequently in litigation, with 74% of drug patent cases filed in 2020 involving them. The findings add to growing evidence that brand-name manufacturers are layering patents to stymie the entry of lower-cost generics. For patients – particularly those managing chronic conditions – that means artificially prolonged periods of high prices and limited access to affordable alternatives. The report strengthens the case for the bipartisan ETHIC Act, which would limit how these terminally disclaimed patents can be used to block competition and is designed to address one of the key structural drivers of high drug prices. — [Generation Patient]
TrumpRx Drugmakers Boost Lobbying as Program Took Shape
Pharmaceutical companies participating in TrumpRx increased their federal lobbying spending by nearly 23% in 2025, outpacing the broader industry as the program was negotiated behind the scenes. The 17 companies collectively spent over $130 million – more than a quarter of total industry lobbying – while securing key policy concessions tied to the program. At the same time, many of these companies intensified lobbying on policies that would delay Medicare price negotiation and expand coverage of high-cost drugs like GLP-1s. The overlap highlights a broader dynamic: even as companies participate in high-profile pricing initiatives, they continue to invest heavily in maintaining their monopoly power at the expense of American patients. — [OpenSecrets]
ICYMI: In a new contribution to a broader report on Medicare reform, P4AD CEO Merith Basey pushes back on pharmaceutical industry arguments to roll back drug price negotiation and advocates for an expansion of the program. She highlights that since the policy was enacted, R&D spending has increased, and it is projected to save taxpayers $98.5 billion through 2031, with minimal impact on new drug development.
Patient Advocate Spotlight: Aarolyn McCullough
Condition: Diabetes
Drugs: Everolimus, Zortress, and Ozempic ($2,000 / month before her former employer’s assistance)
Background: Retired liver transplant survivor living in Oak Park, MichiganIn her words: “I can thankfully afford my prescriptions due to manufacturer assistance and health coverage benefits I receive through my former employer: the United States Postal Service. But without such assistance, a situation which I have faced before, I would be paying about $2,000 per month for all of my medications… As a retired individual, this should not be my reality. As an American citizen, I believe we deserve lower-cost prescription drugs because we are simply overpaying compared to the rate other countries pay for the same or equivalent medications.” You can read more about Aarolyn and her story in her recent interview here.
SCOTUS Examines Skinny Labels that Drive Low-Cost Generics to Market
The Supreme Court heard arguments this week in a case that could limit how and when lower-cost generics come to market. The case, Hikma Pharmaceuticals USA Inc. v. Amarin Pharma, Inc., focuses on “skinny labeling,” which allows generics to launch for off patent uses of a drug while brand-name manufacturers retain patents on other indications — providing a key pathway for earlier competition that saves patients and taxpayers billions annually. While justices appeared skeptical of their case, a ruling for Amrin could significantly limit that pathway by exposing generic manufacturers to liability based on routine marketing, creating a chilling effect that delays or deters generic entry across multiple drug classes. The stakes for patients are significant, given that a single generic can reduce drug prices by 39%, and multiple competitors can lower prices by as much as 95%. A decision is expected in June. — [SCOTUS, NPR, SCOTUS Blog, FDA, JD Supra, Endpoints News, Reuters]
Delayed Competition for Pfizer’s Vyndamax Raises Concerns
Pfizer struck agreements this week with three generic drugmakers to delay competition for its blockbuster heart drug Vyndamax until 2031, two years later than previously expected. Vyndamax, which treats a serious and potentially fatal condition, carries a list price of approximately $23,000 per month for 30 capsules. Artificially extending the monopoly on the drug means patients will face high prices for longer without meaningful competition or pricing relief. While the terms remain secret, these types of settlements raise familiar concerns about “pay-for-delay” arrangements where brand-name manufacturers compensate generic competitors for postponing market entry of lower-cost alternatives. Policymakers have increasingly scrutinized these practices, and P4ADNow has endorsed the bipartisan Preserve Access to Affordable Generics and Biosimilars Act to curb them. — [Endpoints News, Congress, Sen. Klobuchar]
Healthcare Costs — and Rx Prices — Remain A Top Voter Concern
NewKFF polling shows affordability remains a top concern for Americans, with 64% of adults worried about the cost of health care, on par with concerns about gas and transportation costs amidst the U.S. conflict with Iran. Prescription drug costs remain a key driver, as insured adults overwhelmingly point to lowering out-of-pocket costs as their top priority.The political implications are clear: nearly 9 in 10 voters say healthcare costs will influence their vote in the 2026 midterm. High drug prices are a central political issue, and lawmakers should be feeling the pressure to legislate against pharmaceutical industry greed. — [KFF]
ICYMI: CMS extended the deadline for applications to the GENEROUS Model for a second time this week, from April 30th to June 11th, stating that they’re looking to give “potentially interested” drug manufacturers additional time to engage. Even if the model is able to eventually achieve broad drugmaker participation, its impact on patient costs is likely limited. — [CMS, Fierce Healthcare]
Patient Advocate Spotlight: Harold Brown
Condition: Type 2 diabetes, high blood pressure, and heart failure
Drugs: Entresto ($700 / month), among other prescriptions
Background: Retired, worked at the Cleveland Electric Illuminating Company for 27 years
In His Words: “As a patient with Medicare coverage through United Healthcare, I am thankful for having a majority of my health care costs covered. But there were instances in which my Entresto prescriptions were costing me hundreds of dollars a month before getting into a patient assistance program, which I have to apply to each year and see if I am approved. This is just not right.
If I had to pay out of pocket for my heart medication, I would just have to go without it and trust in God for my life. I mean this. I have already had to decline to purchase prescription medications because I couldn’t afford them, and I wish not to do so again. But the truth of the matter is, as Americans, it shouldn’t have to be this way.”
TrumpRx Expands with AbbVie and Genentech Additions
AbbVie and Genentech have joined TrumpRx, bringing the total number of participating companies to 11 and the total number of drugs available through the platform to 69. AbbVie’s blockbuster medication Humira, which was the world’s best-selling drug for nearly a decade, will be offered for $950 per month, an advertised 86% cash discount. But, at $950 per month, the price is still unaffordable for many uninsured patients, and for those with insurance, lower prices are often already available through their plans. Additionally, lower-cost biosimilars — Abrilada ($207) and Amjevita ($299) — were already available through TrumpRx. TrumpRx is only helpful for a small subset of patients, and it does little to address systemic affordability challenges. — [CBS News, TrumpRx, Endpoints News, BioSpace]
Colorado Considers Orphan Exemptions to PDAB amidst Pharma’s Threats
Colorado lawmakers are considering a massive carveout to the state’s Prescription Drug Affordability Board (PDAB), a first-in-the-nation effort to set upper payment limits on high-cost drugs. The PDAB has already demonstrated its impact — capping the price of Enbrel at $600 per 50mg dose, which adults typically take weekly, projecting $32 million in taxpayer savings for Coloradans. However, this proposed legislation would exempt nearly 70% of eligible drugs from review, drawing concerning parallels to the successful pharma-backed push to pass the federal ORPHAN Cures Act, which allows certain high-revenue drugs with multiple orphan indications to avoid Medicare price negotiation. Drug makers have threatened to pull their orphan treatments from the state if upper payment limits were applied to the products, claiming the loss in profits would hurt R&D. Such statements are the run-of-the-mill scare tactics from the industry, one of the most lucrative sectors in the world. Plus, drug companies already receive special incentives, including significant tax credits, to develop orphan drugs. Colorado has an opportunity to continue leading the nation on drug affordability through their PDAB, and this bill would move the state in the wrong direction by narrowing the board’s authority and excluding the very drugs whose prices need reining in. — [Colorado Newsline, Colorado Sun, STAT News, P4AD]
Ubl Out After a Decade of PhRMA Fearmongering
PhRMA CEO Stephen Ubl announced he will step down at the end of the year after more than a decade leading the pharmaceutical industry’s largest trade group. During his tenure, Ubl has played a central role in shaping the industry’s favorite lie that lowering drug prices would come at the expense of innovation, while consistently pointing to PBMs and other parts of the supply chain to deflect from drugmakers’ pricing practices. Despite his efforts, significant policy changes have moved forward — including the drug pricing reforms in the IRA. Public trust in the pharmaceutical industry is also at an all-time low, and a majority of Americans blame the pharmaceutical industry for their high drug prices. — [Endpoints News, AV]
Patients For Affordable Drugs Expands Board Leadership
Dr. Utibe Essien and Jesse Fuchs-Simon have joined P4AD’s Board of Directors, alongside Chair Charles Hurley and Tomi Fadeyi-Jones, who have helped shape the organization since its inception. Dr. Essien, an internal medicine physician and UCLA assistant professor, focuses his research on improving access to novel medications. Fuchs-Simon is a real estate developer and attorney who co-founded AYUDA, an international nonprofit advancing youth leadership in diabetes communities. Together, they bring expertise across medicine, law, public health, and business – strengthening P4AD’s leadership at a time of growing momentum around drug pricing reform. The P4ADNOW board continues to be led by Chair Robert Jones, and has likewise grown over the past year with the additions of Dr. Gloria Tavera and Jamila Headley. Dr. Gloria Tavera is a physician, scientist, and advocate, and the co-founder of Universities Allied for Essential Medicines (UAEM). Jamila Headley is a Caribbean immigrant from Barbados and a global health leader with more than 18 years of experience advancing health care and social justice campaigns across five continents. — [P4AD, POLITICO]
ICYMI: I-MAK released a new report this week, The Monopoly Extension Menu, examining how drugmakers abuse the patent system with techniques like patent thickets, formulation switches, and device lock-ins to extend their patents and monopoly power well beyond what’s intended. I-MAK examines three of the worst offenders, but these tactics are seen across the industry and result in fewer generic alternatives coming to market and higher prices for patients. — [I-MAK]
Patient Advocate Spotlight: Audrey Mclean
Condition: Stroke proclivity
Drugs: Lisinopril, Vyvanse, Buspirone, and other drugs
Background: Patient advocate living and working in New Jersey
In Her Words: “I have been on Lisinopril, a high blood pressure medication, since I was 26 years old because of my proclivity for and history of a stroke. After it came to light that I had a stroke back when I was 16 years old, my birth control medication shot up to around $900 a month. That’s not even mentioning how all my other medications have been on a steady and not-so-subtle price increase for the past decade or so, which is insane.
Thus, my rising prescription drug prices have slowly but surely made it near impossible, even as a hard-working blue-collar individual such as myself, to afford the medications that keep me alive and able to function.
President Trump unveiled 100% tariffs on patented medications and their active ingredients in a move that could raise costs for patients. While these tariffs aim to pressure pharmaceutical corporations into U.S. manufacturing and Most Favored Nation agreements, the current MFN deals remain opaque and voluntary, and have not delivered meaningful savings for the vast majority of Americans. Under the policy, tariffs are set to take effect July 31, 2026, with companies able to avoid or reduce them by entering into agreements that include MFN pricing and commitments to onshore manufacturing in the United States. Companies that agree to both may receive full tariff exemptions through January 20, 2029, while those that only commit to onshoring would face a 20% tariff. With a majority of Americans already worried about the cost of their prescriptions, there is a significant risk that new tariffs will increase costs in the near term — costs that are unlikely to be absorbed by pharmaceutical companies and instead passed on to patients and taxpayers. — [AP, NYT, POLITICO, USA Today, STAT News, Axios, ABC News]
Analysis: Big Pharma Hikes Cancer Drugs Prices, While Lobbying Against Price Reforms
New analysis from P4AD finds that despite cancer drugs already costing, on average, $74,000 more per year than other drugs, pharmaceutical corporations raised prices on 64 oncology drugs in the first week of January alone, with more than 73% of the increases exceeding the rate of inflation. The price hikes affected treatments such as Brukinsa (which is now $16,673/dose), Qinlock ($46,620/dose), and Xpovio ($34,722/dose). Simultaneously, many of the same drug companies are lobbying Congress to pass the EPIC Act, which would delay Medicare price negotiation eligibility for small-molecule cancer drugs by four additional years. The delay would postpone negotiations for high-cost cancer drugs, prolonging already steep costs for patients This is P4AD’s third analysis in a series examining how pharmaceutical companies are hiking prices on lifesaving medications across disease areas while aggressively fighting reforms designed to lower them. — [P4AD, KDKA-AM]
Admin Admits Current MFN Deals Won’t Lower U.S. Prices
Medicare Director Chris Klomp recently admitted that the administration’s Most Favored Nation (MFN) approach is designed to raise drug prices in other wealthy nations, not directly lower prices for U.S. patients — a key detail as the White House pushes Congress to codify MFN pricing. While the president has framed MFN as a tool to reduce costs, the current voluntary deals with drugmakers, including AstraZeneca, Bristol Myers Squibb, Eli Lilly, and Merck, are time-limited, opaque, and fall short of systemic reform. All the while, Pharma is signaling resistance. Some corporations are reported to be delaying the launches of new medications in Europe to avoid triggering international price comparisons, and industry leaders have made clear they supported voluntary deals in part to stave off legislation. The result is a policy approach that may increase drug prices globally without savings for U.S. patients — putting affordability at risk for patients both in the U.S. and abroad. — [STAT News, P4AD, Reuters, Washington Post, Reuters]
Need for Generic Competition Tops Americans’ Desired Drug ReformsPolicies that make it easier to bring generic drugs to market are among the most popular tools to lower drug costs, with 88% of Americans supporting them, according to KFF. That’s higher than the support for allowing drug importation from Canada (78%), expanding the $35 insulin cap beyond Medicare (75%), or increasing taxes on drugmakers who refuse to negotiate prices (72%), all incredibly popular reforms. While the U.S. patent system was designed to reward innovation by granting limited exclusivity for novel inventions, the pharmaceutical industry continues to exploit it to extend monopolies and delay competition. These tactics keep drug prices high long after a drug’s initial development costs have been recouped. Patients understand what’s driving America’s high drug prices, and the data reflect it: there is overwhelming support for policies that increase competition and bring lower-cost alternatives to market. P4AD has long supported bipartisan legislation to do just that, including the ETHIC Act, which would curb patent thicketing as well as other reforms to eliminate product hopping and pay-for-delay deals. There is a clear appetite from Americans for Congress to urgently address pharmaceutical industry patent abuse in pursuit of lower prices. — [KFF, P4AD]
Patient Advocate Spotlight:Amelia Schachter
Background: Myelofibrosis, a rare blood cancer, and chronic migraines Drugs: Botox ($1,500-$3,000/session) and Jakafi ($17,775.89/60 tablets) Background: Retired oncology nurse and a cancer survivor from Firestone, Colorado
In Her Words: “My personal struggle began in 2020 when I was diagnosed with a rare blood cancer called myelofibrosis. I was prescribed a drug called Jakafi at a list price of $17,775 for 60 tablets. I no longer need to take Jakafi because I had a life-saving bone marrow transplant, but I also face the expense of periodic Botox injections to help relieve my chronic migraines, an essential treatment that can cost between $1500 and $3000 per session. Because I am forced to forego these injections due to unavailability and unaffordability, I endure more frequent and sometimes debilitating migraines.
As a healthcare professional and advocate who became a patient, I have witnessed the failures of a system that prioritizes profit over people. I am sharing my story and my voice to step up and ensure that all Coloradans, and all Americans, have guaranteed access to life-saving medications they need at prices they can afford.”
Analysis: After OBBB Weakened Medicare Negotiation for Rare Disease Drugs, Pharma Hikes Their Prices
A new P4AD analysis found that pharmaceutical companies raised prices on 208 rare disease drugs in the first week of the year, just months after the ORPHAN Cures Act was signed into law, weakening Medicare’s ability to negotiate lower prices for many rare disease drugs. ORPHAN Cures permits drugs that treat multiple rare conditions to be excluded from negotiation, even if they are blockbuster drugs that generate billions in revenue. While each individual condition treated by this class of drugs may be rare, an estimated 1 in 10 Americans lives with a rare disease. The inclusion of this provision in the 2025 reconciliation package will result in extremely high-cost treatments like cancer drugs Keytruda ($12,031/dose) and Opdivo ($7,787/dose) being excluded from negotiations, despite expectations they’d be selected. P4AD’s analysis is one of three in a series examining how pharmaceutical companies are hiking prices on lifesaving medications across disease areas while fighting reforms designed to lower them. — [P4AD]
FTC Settles Second PBM Insulin Price-Gouging Case
The FTC reached a second settlement against another major PBM this week, this time with CVS Caremark, over allegations that CVS Caremark, in conjunction with Cigna’s Express Scripts, and OptumRx artificially inflated insulin prices at the expense of patients. The terms of CVS’s agreement are still pending final approval and largely redacted, but the settlement follows a broader FTC investigation that found that PBMs generated over $7.3 billion by inflating the prices of 51 lifesaving drugs between 2017 and 2022. While the case against OptumRx is still ongoing, the settlements with both Express Scripts and now CVS Caremark are welcome news. — [STAT News, FTC, Axios]
Merck Spends $26 Billion on Acquisitions as Keytruda Patent Cliff Approaches
As the patent expiration for the best-selling cancer drug, Keytruda, approaches, Merck is moving aggressively to protect its revenue — finalizing its third biotech acquisition of the year, this time for blood and bone cancer-focused company Terns Pharmaceuticals. The three deals total $26 billion. The strategy is clear: build a pipeline of new, patent-protected cancer drugs ahead of Keytruda’s 2028 patent expiration, when its exclusivity begins to expire. Keytruda accounts for a significant share of Merck’s revenue, and rather than lowering prices on existing treatments, the company is investing billions to secure the next generation of high-priced, monopoly-protected drugs. The drug industry is one of the most profitable industries in the world, making their common arguments that any reforms undermine innovation fall flat. — [BioSpace, Reuters, Axios, West Health]
New Study: Medication Nonadherence Dropped with IRA Reforms
A new study in the American Journal of Managed Care (AJMC) finds that capping out-of-pocket costs under the Inflation Reduction Act is already improving medication adherence. Focusing on key provisions — including eliminating the 5% coinsurance in catastrophic Medicare coverage and introducing an annual out-of-pocket cap ($3,300 in the first year, now reduced to $2,100) – the study shows patients were more likely to fill and consistently take their prescriptions once costs were lowered. The findings add to growing evidence that reducing out-of-pocket costs improves patient access and adherence — and strengthen the case for extending similar protections beyond Medicare.— [AJMC]
In Case You Missed It
Senators Shaheen (D-NH), Warnock (D-GA), Collins (R-ME), and Kennedy (R-LA) reintroduced a bipartisan bill that would cap insulin costs at $35 per month for Americans with private insurance beginning in 2027 — similar to the cap passed by the IRA for patients on Medicare. — [POLITICO, The Hill]
Condition: Crohn’s disease, severe chronic migraines, arthritis, sacroiliitis, fibromyalgia, psoriasis, and chronic painIn Her Words: “Something they don’t tell you when you’re diagnosed: You may not be able to pay for your treatment. I am fortunate enough to have great insurance coverage, but I still remember the day I received a bill for a chemotherapy treatment I received. It was for $100,000. The number hit me in the chest. How could anyone afford that? I keep this bill as a reminder: The prescription drug pricing system is broken.”
