This Week in Drug Pricing: Pharma Handouts, Not Patient Relief: Congress Passes The ORPHAN Cures Act, PhRMA Panics as “Most Favored Nation” Pricing Gains Traction, and ICYMI
Welcome to the Week in Review.
Pharma Handouts, Not Patient Relief: Congress Passes The ORPHAN Cures Act
Today, the House passed a reconciliation bill that includes a nearly $5 billion giveaway to the pharmaceutical industry: the ORPHAN Cures Act, just a day after the Senate passed the same legislation, which now heads to the President’s desk. By including ORPHAN Cures, the reconciliation bill is ensuring drugs that should be included in Medicare negotiation — a program that’s supported by 86% of Americans on both sides of the aisle — won’t see lower prices in the coming years. It’s deeply disappointing that for many members of Congress, appeasing industry interests seems to come before standing with the nine in ten Americans demanding lawmakers lower drug prices and the millions of patients forced to make impossible choices because of their prescription costs. The reconciliation bill may have undermined historic affordability progress, but P4ADNow, alongside our community of patients, will continue fighting implementation of ORPHAN Cures and working to protect the Medicare negotiation program from any other attacks. — [Arnold Ventures, CSRxP, POLITICO Pro, CNBC, POLITICO Pro, Healthcare Finance, Fierce Pharma, Common Dreams, Nation of Change]
PhRMA Panics as “Most Favored Nation” Pricing Gains Traction
The pharmaceutical industry is panicking over a potential “Most Favored Nation” pricing policy. In an op-ed for STAT News, PhRMA CEO Stephen Ubl rolled out the industry’s usual fearmongering and blame-shifting to argue against aligning U.S. drug prices (which are the highest of anywhere in the world) with those in other wealthy nations. He even cites data from No Patient Left Behind, one of the pharma-funded front groups we exposed in our 2023 “Hidden Hand” report, to push the narrative that patients abroad are “freeloading.” Here’s the truth: drug companies already make huge profits in countries with lower prices. They want to keep the U.S. as their cash cow, charging Americans four to eight times more for brand-name drugs than patients elsewhere. MFN pricing threatens that status quo, which is exactly why pharma is fighting it. Aligning prices with peer nations is a path toward real relief for patients, but we must ensure it’s done right, without letting pharma raise prices abroad to protect their margins. Don’t let their talking points distract from the real problem: drug corporations, not other countries, are driving high prices in the U.S., and increasing prices internationally wouldn’t do anything to lower prices at home. — [STAT News, P4AD, HHS]
In Case You Missed It
On Monday, the FTC and DOJ held their first of three listening sessions examining how drug companies use tactics like pay-for-delay, product hopping, and rebating to block competition and keep prices high. Drug companies abuse the patent system to extend their monopolies and maximize profits, and the U.S. desperately needs increased competition and transparency if we want to see lower prices. According to the FDA, introducing one generic drug into the market reduces drug prices by 39%, while six or more result in a staggering 95% reduction in price. That’s why P4ADNow continues to fight for legislation to reduce patent abuses by drug corporations. — [FTC, FDA]
WASHINGTON, D.C. — Today, the House passed a reconciliation bill that includes a nearly $5 billion giveaway to the pharmaceutical industry: the ORPHAN Cures Act. Despite outrage from tens of thousands of patients on Medicare to halt its progress, ORPHAN Cures was included in the reconciliation bill, was passed by both chambers this week, and now heads to the President’s desk. Its inclusion defies the will of American patients and, if implemented, will diminish the savings due to be generated for patients via the historic and wildly popular Medicare negotiation program.
“When nine in ten Americans want Congress to go further to lower prescription drug prices, there is no good reason to hand Big Pharma a new loophole to exploit — and stick taxpayers with a $5 billion bill,” said Merith Basey, Executive Director of Patients For Affordable Drugs Now. “This unnecessary carveout keeps prices high on drugs that should be negotiated, weakening Medicare negotiation before it even begins to deliver savings. It sends a clear message to the 1 in 3 Americans struggling to afford their prescriptions: a majority of Congress chose Big Pharma over patients. Patients across all 50 States fought too hard for the historic progress we’ve made to watch this legislation undermine it at the last moment. We will keep fighting the implementation of ORPHAN Cures and any bills like it that would weaken Medicare negotiation, a program supported by 86% of Americans across party lines.”
The ORPHAN Cures Act creates a new loophole allowing some of the most profitable drugs with multiple orphan indications to avoid Medicare price negotiation, even as these drugs generate massive sales. The CBO estimates this carveout would cost taxpayers nearly $5 billion over the next decade while weakening the Medicare Negotiation Program just as it’s set to deliver savings to 9 million seniors starting in January.
P4ADNow patient advocates have sent 19,545 letters to Congress, met with Members of Congress, spoken out publicly, and talked to the media demanding lawmakers reject the ORPHAN Cures Act. While this bill now heads to the President’s desk, Patients For Affordable Drugs Now will continue to fight its implementation, protect the Medicare negotiation program, and work to secure lower prices for patients who need relief now more than ever.
### 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.
WASHINGTON, D.C. — Just days after patients won a critical victory to keep the ORPHAN Cures Act out of the Senate reconciliation bill text, lawmakers have reinserted this harmful, pharma-backed proposal into the proposed final text. P4ADNow is calling on Congress to remove the ORPHAN Cures Act once and for all and protect the historic Medicare negotiation program that patients fought to secure.
“Patients are infuriated to see the Senate cave to Big Pharma by reviving the ORPHAN Cures Act at the eleventh hour,” said Merith Basey, Executive Director of Patients For Affordable Drugs Now. “This is a blatant giveaway to the pharmaceutical industry that would keep drug prices high for patients while draining $5 billion in taxpayer dollars. We call on lawmakers to remove this unnecessary provision immediately and stand with an overwhelming majority of Americans who want the Medicare Negotiation program to go further. Medicare negotiation will deliver huge savings for seniors and taxpayers; this bill would undermine that progress.”
The ORPHAN Cures Act would create a new loophole allowing some of the most profitable drugs with multiple orphan indications to avoid price negotiation under Medicare, even as they generate massive sales. The CBO estimates this carveout would cost taxpayers nearly $5 billion over the next decade while diminishing the popular and effective Medicare negotiation program that is poised to deliver savings to millions of seniors starting next year.
P4ADNow patient advocates have sent over 13,000 letters to Congress demanding lawmakers reject the ORPHAN Cures Act, met with legislative offices, spoke out publicly, and talked to the media to make it clear that patients should not have to pay more just to pad pharma’s bottom line. Once again, patients are mobilizing to push back against this dangerous provision.
P4ADNOW urges Congress to protect patients and taxpayers by removing the ORPHAN Cures Act from the reconciliation package now.
### 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.
Investors- and Lawmakers – Aren’t Buying Pharma’s “Warnings”
New reporting from POLITICO reveals that lawmakers from both parties have been snapping up stocks in the 13 largest U.S. pharma companies in recent weeks — all while the drug industry ramps up its warnings that Inflation Reduction Act reforms and Most-Favored-Nation pricing momentum will hurt innovation and slash profits. The takeaway? Behind the industry’s sky-is-falling rhetoric, Wall Street and Washington still see pharma as a safe bet. No surprise, given that analysts have long noted that drugmakers could lose $1 trillion in revenue over a decade and remain the most profitable industry sector. The gap between the industry’s doomsday messaging and investor behavior is hard to ignore, and it’s patients who are left to slip through the cracks. — [POLITICO, West Health]
Pharma Front Groups Working Overtime For Big Drug Companies
It’s been a month since P4AD releasedThe Rampant Reach of Pharma’s Hidden Hand, exposing six major pharma-funded front groups masquerading as patient advocates while quietly pushing Big Pharma’s agenda. Since then, these groups have continued their efforts to protect drug industry profits. The Center for Medicine in the Public Interest (CMPI) — whose entire board has pharmaceutical industry ties — is now pushing a new report blaming high U.S. drug prices on so-called “global freeriding”, a classic pharma talking point that deflects blame and distorts reality. Meanwhile, Pacific Research Institute (PRI) President and CEO Sally Pipes is parroting similar messaging in a new op-ed, dismissing Most Favored Nation (MFN) as “a distraction” — no surprise given PRI’s deep financial ties to pharma. The problem isn’t that other countries pay too little, it’s that we’ve failed to hold pharmaceutical corporations accountable at home. The drug industry is one of the most profitable industries in the world, and its network of front groups continues to spread misinformation to protect its bottom line. Patients and policymakers deserve to know whose interests these groups serve. — [P4AD, CMPI, Newsmax, West Health]
P4AD Patient Advocate Speaks Up in New Op-Ed
The U.S. is experiencing a drug pricing crisis, and Latino communities are among those hit the hardest. 11% of U.S. adults have been unable to afford or access quality healthcare — its highest level since 2021 — and the most notable increases have been among Hispanic adults, rising 8% to 18%. This week, the Latino Newsletter published an op-ed from P4AD patient advocate Sonia Vega about her struggles to afford the Ozempic needed to manage her diabetes. Despite Ozempic costing less than $5 to manufacture, Sonia’s “out-of-pocket cost is over $1,000 a month” — and she’s not alone. P4AD is committed to fighting for equitable and affordable medication access in the Latino community, because no one should be forced to skip prescription doses or avoid treatment just to make ends meet. You can read Sonia’s full op-ed at the link here. — [Gallup, Latino Newsletter, CNBC]
Patient Victory: ORPHAN Cures Act Excluded from Reconciliation Text
This week, patients scored a key victory as the Senate Finance Committee released reconciliation text that excluded the harmful ORPHAN Cures Act – a pharma-backed proposal that would have weakened the Medicare Negotiation Program and protected drug company profits at the expense of patients. Over the past several weeks, P4ADNOW patient advocates mobilized to oppose the provision: sending 13,326 letters to Congress, meeting with lawmakers, and telling their powerful stories – including an Alabama patient advocate, Beth, who spoke with her senators. Beth takes Jakafi, an orphan drug that costs $17,500 every month, and she spoke out about how the Orphan Cures Act would exempt Jakafi and other orphan drugs from eventual price negotiations. Last Thursday, P4ADNOW and AARP joined forces to send a letter to Senate offices opposing the inclusion of ORPHAN. We’re proud to stand with the patients who made this happen, and we’ll keep fighting to ensure no version of ORPHAN resurfaces and every patient can get the medications they need at prices they can afford. — [P4ADNow, InsideHealthPolicy, POLITICO, Endpoints, Fierce Pharma, FirstWord Pharma, AInvest, Global Genes, The Pharma Letter]
I-MAK Releases New Report on Pharma Patent Abuse
On Tuesday, I-MAK published a new report chronicling how drug companies continue to manipulate the patent system to extend monopolies and keep drug prices artificially high. The report, which is part of I-MAK’s Overpatented, Overpriced series, focuses on the top-selling blood thinner Eliquis and the blockbuster family of diabetes and weight-loss drugs, including Ozempic, Rybelsus, and Wegovy — all of which are included in the second round of Medicare negotiations. By stacking patents to block competition, the report found that Bristol Myers Squibb and Pfizer have raked in an estimated additional $50.7 billion off Eliquis alone. Novo Nordisk is projected to make a staggering $166 billion over five years in additional profits by extending monopolies on its GLP-1 drugs. The report reinforces why patent reform is one of P4AD’s top priorities — and why Congress must act to stop pharmaceutical companies from using monopoly tactics to keep drug prices high for patients. — [I-MAK]
In Case You Missed It
The administration’s termination of over $1 billion in National Institute of Health (NIH) research grants was overruled by a federal judge this week. The NIH plays a critical role in drug development. In fact, 99 percent of drugs that received FDA approval between 2010 and 2019 received federal funding during their R&D. — [NIH, NBC News, Reuters, The Hill, Axios]
WASHINGTON, D.C. — Patients For Affordable Drugs Now is applauding a patient-driven victory as the harmful ORPHAN Cures Act was excluded from the reconciliation text released by the Senate Finance Committee today – protecting the Medicare Negotiation Program from a pharmaceutical industry carveout that would have driven up drug prices and padded Big Pharma’s profits at a time when one in three Americans still cannot afford their prescription drugs.
“The exclusion of the ORPHAN Cures Act from the Senate Finance Committee’s reconciliation text is a victory powered by patient advocacy and a direct rejection of the pharmaceutical industry’s greed-driven agenda,” said Merith Basey, Executive Director of P4ADNOW. “This decision helps protect the popular and effective Medicare Negotiation program and its promise of lower prescription drug prices for millions of Americans on Medicare. We remain vigilant against any effort to revive this harmful proposal, or anything like it, and will continue fighting to ensure every patient can get the medications they need at prices they can afford.”
Over the past several weeks, P4ADNOW patient advocates sent over 13k letters to the Hill, met with congressional offices, and spoke out publicly to oppose the ORPHAN Cures Act – legislation that would have allowed some of the most profitable drugs with multiple orphan indications to avoid price negotiation, despite being widely used and costing Medicare hundreds of millions of dollars each year. Last week, P4ADNow and AARP sent a joint letter to the Senate opposing ORPHAN Cures.
An “orphan” drug designation is meant to incentivize treatments for rare diseases affecting fewer than 200,000 people. But too often, pharmaceutical companies abuse the system by stacking multiple orphan indications to extend monopolies and keep prices high for as long as possible. The ORPHAN Cures Act would have enabled those abuses while weakening Medicare negotiation. To make matters worse, the Congressional Budget Office (CBO) found that this would cost the federal government nearly $5 billion over the next 10 years, an unnecessary gift to drug companies at the direct expense of patients and taxpayers.
Thanks to the leadership of champions in Congress and the groundswell of advocacy from patients nationwide, this proposal has been removed.
### 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.
P4ADNOW and AARP Send Letter on OPRHAN Cures to Senate
To safeguard hard-fought and cost-saving drug price reforms, P4ADNow and AARP sent a joint letter to all Senators to oppose the inclusion of the ORPHAN Cures Act in the reconciliation bill. At a time when nine in ten Americans want further action from Congress to lower the price of prescription drugs and an overwhelming majority support giving Medicare the power to negotiate lower drug prices for ALL drugs, including this policy in the reconciliation package would be a step backward. The Congressional Budget Office (CBO) found that the ORPHAN Cures Act would increase federal spending by $4.87 billion over the next 10 years. That’s billions of dollars going straight into the pockets of big drug companies. We’re urging Congress to put patients first rather than bend to the whims of greedy drug manufacturers. — [P4ADNow, AV, CBO]
Most Favored Nation: One Month Out
This week marked 30 days since President Trump issued his executive order to align U.S. drug prices with other high-income nations through the “Most-Favored-Nation” (MFN) approach. In the U.S., drug companies charge Americans between four and eight times what patients in other high-income countries pay for the very same brand-name drugs because the current system lets them. If done right, international referencing pricing could help lower prices in the U.S. But as expected, Big Pharma is already pushing back hard. Pfizer and other drugmakers met with the administration, but failed to make any commitments to lower prices. Instead, Pfizer CEO and PhRMA Board Chair Albert Bourla said he hopes prices in Europe increase, even threatening to pull drugs from some countries if they don’t pay more. We’ve said it before: any proposal that seeks to raise prices abroad is a nonstarter. The real problem is that the U.S. has failed to rein in the pharmaceutical industry. Americans know who the drivers of high drug prices are, and pharma’s recent comments make it even clearer where their priorities lie. — [White House, P4ADNow, Quartz, Reuters]
Spotlight on Cell and Gene Therapies
The heads of HHS, FDA, NIH, and CMS came together for a roundtable discussion on the future of cell and gene therapies, where NIH Director Jay Bhattacharya emphasized the importance of making these life-saving treatments both scalable and affordable. Treatments like these have been critical for patients like Janet Kerrigan, whose CAR-T therapy put her multiple myeloma into remission. But no one should be saddled with the enormous price tags these innovations currently carry, which can reach nearly $3 million for disorders like sickle cell. Lowering this cost is a priority, and we’re encouraged to hear that affordability might also be on the radar for federal leaders as they chart the path forward. — [Endpoints News, P4AD, Ortho]
In Case You Missed It
On Monday, the FDA announced it would be reinstating the internal team responsible for advancing generic drug approvals, reversing its controversial decision to dismantle the office earlier this year. As Endpoints News noted, the team played a key role in driving the agency to a record number of new generic drug approvals before its elimination in April. — [BioSpace, Endpoints News, Pink Sheet]
As the Senate considers the House-passed reconciliation package, P4ADNow is urging lawmakers to reject the inclusion of the ORPHAN Cures Act — an unnecessary Pharma handout that would weaken the effective and popular Medicare Negotiation Program. At a time when nine in ten Americans want further action from Congress to lower drug prices and an overwhelming majority support giving Medicare the power to negotiate lower drug prices for every drug, including this policy that would reduce the number of drugs eligible for negotiation would be a harmful step backward. The Congressional Budget Office (CBO) found that the bill would cost taxpayers $4.8 billion over the next 10 years. That’s nearly $5 billion in lost savings — not to support innovation or new treatments, but to allow drug companies to keep prices high for longer at the expense of patients. Americans know that Pharma is to blame for their high drug prices, and over the coming days, P4AD patient advocates who would be impacted by this legislation will be speaking to their Senators to express their strong opposition to the ORPHAN Cures Act. — [Axios, CMS, CBO]
The Tide Continues to Turn Against PBMs
Arkansas is taking on PBMs with its first-in-the-nation law barring PBMs from owning pharmacies in the state. The profitability of PBMs has risen in recent years as a result of vertical mergers between PBMs, insurance companies, and pharmacies, leading to higher prices for patients. Arkansas’ law represents a major step toward dismantling these vertically integrated monopolies that contribute to keeping prices artificially high. While PBMs claim to be utilizing their bargaining power on behalf of patients, they’ve simultaneously fought to ensure their rebate practices stay hidden from view. As Axios reported, “the ramifications are nationwide, with many other states weighing new restrictions, including prohibitions on steering business to affiliated pharmacies.” — [Axios, Axios, Reuters, Pharmacy Times]
Supporting Transparency in Drug Advertisements on Capitol Hill
On Thursday, Reps. Dave Taylor (R-OH) and Jan Schakowsky (D-IL) introduced the Drug-Price Transparency for Consumers Act of 2025, companion legislation to the Senate version that would mandate pharmaceutical companies disclose the cost of their drugs in all direct-to-consumer (DTC) advertising. This joins the growing trend against DTC Pharma advertising, after Senators Josh Hawley (R-MO) and Jeanne Shaheen (D-NH) introduced the bipartisan and P4ADNow-endorsed No Handouts for Drug Advertisements Act last month. The U.S. is one of only two countries that allows DTC advertising for pharmaceutical drugs, and the least patients deserve is transparency on the cost of what’s being advertised to them. P4ADNow endorsed this bill, and is supportive of efforts to bolster transparency at all steps of the pharmaceutical process. — [Washington Examiner]
In Case You Missed It
This week, P4AD attended Latino Magazine’s LATINO 100 luncheon. Latino patients are more likely to report difficulty affording prescription medications, and Gallup polling earlier this year found that Hispanic adults are reporting the greatest increase in lack of ability to afford or access quality healthcare. P4ADNow is working closely with organizations and groups who serve the Latino community as part of our push to expand our community in the fight to lower drug prices.
