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.
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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.
WASHINGTON, D.C. — Today, the Senate passed a reconciliation bill that includes a nearly $5 billion giveaway to the pharmaceutical industry: the ORPHAN Cures Act. This bill ignores the will of patients and undermines the historic and wildly popular Medicare negotiation program, ensuring patients will continue to pay high prices on drugs that should be negotiated. P4ADNow is now calling on the House to stand up for patients, protect the program that would lower costs for patients and taxpayers, and remove the ORPHAN Cures Act from the final package.
“The ORPHAN Cures Act is a betrayal of millions of patients on Medicare, and a completely unnecessary $5 billion giveaway to the pharmaceutical industry,” said Merith Basey, Executive Director of Patients For Affordable Drugs Now. “While nine in ten Americans are demanding Congress go further to lower drug prices, this decision moves us in the wrong direction, undermining hard-fought progress to lower drug prices. Pharma lobbyists will stop at nothing to maintain industry profits, and when a majority of the Senate caves to their interests, it’s a reminder to Americans why they’re paying the highest drug prices in the world. Simply put: it’s because Congress allows it. Once again, we call on the House to stand with patients against industry interest and remove ORPHAN Cures and its unnecessary pharma handouts immediately.”
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 17,215 letters to Congress, met with legislative offices, spoken out publicly, and talked to the media demanding lawmakers reject the ORPHAN Cures Act.
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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.
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.
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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.
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.
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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.
WASHINGTON, D.C. — Today, the House passed a reconciliation package that includes the ORPHAN Cures Act (H.R. 946), a pharma-backed provision that would create new loopholes in the Medicare Drug Price Negotiation Program — just months before the first lowered prices take effect. Patients For Affordable Drugs Now strongly opposes the inclusion of this policy, which serves the interests of drug corporations at the expense of patients and taxpayers.
“In a giveaway to Big Pharma, the House just voted to weaken one of the most effective and popular drug pricing reforms in decades — ignoring the will of nine in ten Americans who are demanding Congress do more to lower prescription drug costs,” said Merith Basey, Executive Director of P4ADNOW. “By letting high-cost drugs with multiple orphan uses avoid negotiation and extending the timeline before negotiation for other medications, lawmakers have handed pharmaceutical corporations a new and unnecessary way to protect monopoly pricing — all while 1 in 3 Americans can’t afford their medications.”
Despite industry claims, the ORPHAN Cures Act does nothing to advance innovation. The 2022 prescription drug law already safeguards orphan drug development incentives. Instead, this bill keeps U.S. prices high while other nations pay far less. According to the CBO, the bill would cost taxpayers at least $5 billion over the next 10 years — a massive giveaway to the pharmaceutical industry at the expense of patients.
P4ADNOW patient advocates have mobilized in opposition to this bill, sending thousands of letters to Congress urging its rejection. The fight is not over — the reconciliation package now heads to the Senate, where P4ADNOW will continue working to protect patient savings and block harmful industry carveouts.
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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.
P4ADNOW urges Congress to Reject The Pharma-Backed Bill and Protect Key Drug Pricing Reforms
WASHINGTON, D.C. — Today, the House Energy and Commerce Committee advanced the ORPHAN Cures Act (H.R. 946) through their markup. This legislation, driven predominantly by the pharmaceutical industry and its allies, would create an unnecessary loophole in the Medicare Negotiation Program — allowing even more drugs to avoid price negotiation, including those indicated for multiple rare diseases — right before the first round of negotiated prices take effect in January. Patients For Affordable Drugs Now urges Congress to stop progression of this harmful bill.
“The overwhelmingly popular Medicare negotiation program is on the verge of delivering savings to nine million patients, and the last thing patients and the taxpayers need is a new loophole for the pharmaceutical industry to exploit,” said Merith Basey, Executive Director of P4ADNOW. “The Orphan Cures Act is yet another industry handout designed to protect corporate monopolies while undermining widely popular drug pricing reforms and overdue relief for patients”
An orphan drug designation applies to a treatment for conditions affecting fewer than 200,000 people in the United States. However, many drugs with multiple orphan indications reach much larger patient populations and are highly profitable for pharmaceutical manufacturers. The industry has spent millions of dollars misleading patients by falsely claiming that allowing multi-orphan drugs to remain eligible for price negotiation will harm innovation. The reality is the 2022 prescription drug law maintains all existing incentives for the development of orphan drugs, and only a small percentage of drugs approved for more than one orphan disease gross over $200 million under Medicare each year, the threshold for negotiation eligibility. Instead, the ORPHAN Cures Act will ensure prices are kept artificially high, unjustly undermining the victories that patients fought for.
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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.
WASHINGTON, D.C. – Patients For Affordable Drugs Now Executive Director Merith Basey issued the following statement in response to President Trump’s new Executive Order (EO) on drug pricing:
“We completely agree with President Trump that Americans shouldn’t be paying the highest drug prices in the world for the exact same brand-name prescription drugs. And we broadly support international reference pricing — including ‘Most Favored Nation’ style policies — that, if well designed, could help rein in inflated drug prices and deliver savings for patients.
This Executive Order is a step in the right direction, but without additional guardrails, it leaves room for pharmaceutical companies to continue gaming the system at the expense of patients. The reality is: drug companies set high prices in the U.S. because U.S. policy lets them – unlike other high income countries that negotiate lower prices.
With nearly nine in ten Americans demanding lower prices and greater accountability from drugmakers, the administration can pursue an even better deal, in line with other high income nations, including through the popular Medicare Negotiation program.
While outstanding questions remain, P4AD is committed to working to ensure this executive order is implemented in a way that delivers lower drug prices for patients. We’ll continue to monitor implementation closely and urge the administration to stay focused on patient-centered reforms that hold the true driver of high drug prices accountable: drug corporations.”
BACKGROUND
Several aspects of the EO raise immediate questions:
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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.
WASHINGTON, D.C. — Patients For Affordable Drugs Now (P4ADNow) and AARP sent a joint letter to key House committee leaders opposing The EPIC Act (H.R. 1492), a bill that would delay when Medicare can negotiate lower prices on small-molecule drugs. The letter urges Congress to reject the measure, which would weaken the historic Medicare Drug Price Negotiation Program and cost patients and taxpayers billions in higher drug prices.
“Congress should be building on the success of Medicare negotiation in line with what the American people are urgently demanding — not actively undermining it,” said Merith Basey, Executive Director of Patients For Affordable Drugs Now. “The EPIC Act would delay lower prices, prolong high costs, and hurt the very people this program was designed to help. If lawmakers want to align exemption periods, they should support reducing the negotiation exemption period for biologic drugs to match that of small molecules — not hand the drug industry a $10 billion giveaway and four more years to price-gouge patients.”
The joint letter highlights that under the proposed legislation, more than half of the drugs already selected for Medicare negotiation would not have qualified, including widely used treatments like Eliquis, Jardiance, and Ozempic. It also points out that shortening the timeline for biologics, rather than extending the delay for small molecule drugs, could save billions of dollars — a win for both patients and the federal budget.
Polling shows overwhelming bipartisan support for Medicare drug price negotiation, with 67% of voters supporting expansion of the program to all drugs covered by Medicare. Yet pharmaceutical companies are lobbying hard to gut the program through legislative changes like the EPIC Act, falsely claiming that earlier negotiation will hurt innovation. In fact, small-molecule innovation has remained strong since the passage of the 2022 prescription drug law, and American taxpayers already fund the majority of early-stage drug development.
Read the full letter here.
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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.