The Week in Review in Prescription Drug Pricing: TrumpRx Announced, ORPHAN Re-score Anticipated Soon, New Profile on P4AD Patient Advocates, and more
Welcome to the Week in Review.
TrumpRx Announced
Even in a crowded week of news, prescription drug pricing remained prominent with President Trump’s announcement of TrumpRx — a new government direct-to-consumer platform — alongside a deal with Pfizer to offer Medicaid prescriptions at most-favored-nation (MFN) prices. The rollout underscores that drug pricing is a top administration priority, but key questions remain about the program: Which drugs will be covered? Will patients see any savings? And who ultimately benefits? The program does cut out middlemen, but also allows pharma to continue setting prices at will. Pfizer’s prominent role in the announcement signals that drugmakers expect to come out ahead. The reality is clear: drug companies — not PBMs or pharmacies — dictate launch prices, and that’s the root cause of unaffordable medicines. While DTC programs may offer limited relief to some patients, only structural reforms like Medicare negotiation can rein in monopoly pricing power and deliver lasting affordability. P4AD patient advocate Sarah Wisniewski underscored that point on BBC World Business Report and with CBS, sharing her own struggles with high drug costs and what these announcements could mean for patients like her. — [White House, BBC, CBS, POLITCO, Inside Health Policy, The Hill, Bloomberg, STAT News, Axios, Pink Sheet, Endpoints News, Fierce Pharma, Washington Examiner, Barron’s]
ORPHAN Re-score Anticipated Soon
The Congressional Budget Office (CBO) is still working on a re-score of the ORPHAN Cures Act, but we’re expecting a number well beyond the original $5 billion estimate, which failed to include a range of blockbuster drugs, including Keytruda. Championed by the pharmaceutical industry, ORPHAN exempts many high-cost drugs from negotiation, keeping prices artificially higher even longer. Lawmakers should learn from this mistake and reject pharma’s next push for carveouts through bills like EPIC and MINI. — [KFF, Congress, Congress]
New Profile on P4AD Patient Advocates
The Epoch Times published a profile of three P4AD patient advocates — Sarah, Beth, and Sanie — who traveled from across the country to D.C to share their firsthand experiences with the crushing cost of prescription drugs. During their meetings with lawmakers they pressed Congress to rein in patent abuse and protect Medicare negotiation. Their stories are powerful: spending thousands each month on treatments, rationing doses of life-saving medication, and navigating endless hurdles just to maintain coverage. Sadly, these experiences are all too common in our broken drug pricing system. With one in three Americans struggling to afford their prescription drugs, and nine in ten demanding action on the issue, the message to Congress couldn’t be clearer: it’s time to act. You can read the full profile here. — [Epoch Times]
In Case You Missed It
P4AD Executive Director Merith Basey will be joining GW Law’s Inflation Reduction Act event next Friday for a panel on the bill’s most urgent questions, threats, and challenges around drug pricing.
Patient Advocate Spotlight: Sarah Wisniewsi
Condition: Multiple Sclerosis (MS) Drug: Kesimpta, and a range of immunotherapy drugs
In her words: ““No one can afford to pay for this drug when the monthly out of pocket cost is $8,736!”
“Even though my disease remains active, I am still able to work at a good job and remain a productive, tax paying member of society, but that will not be the case if I have to shoulder the cost of the Kesimpta on top of everything else. I don’t want to have to go on disability just so I can survive and hopefully get my medication paid for.”
P4AD Files 5th Amicus Brief as Pharma Petitions SCOTUS
On Wednesday, P4AD filed its fifth patient-centered amicus brief defending the Medicare Negotiation Program, this time against PhRMA’s appeal to the Fifth Circuit. A Texas district court denied the group’s claims in August, adding to the industry’s 14 defeats. On the same day, AstraZeneca petitioned the Supreme Court to hear its appeal after losing its own case in 2024, seeking to block the price reduction of its diabetes drug, Farxiga, when lower negotiated prices take effect on January 1. While this marks a new escalation, it’s one we’ve long expected and prepared for. P4AD will continue elevating the voices of patients and highlighting the real-world benefits of negotiation, including the $99 billion in taxpayer savings and 656,967 lives projected to be saved over the next seven years. Medicare negotiation is here to stay. — [P4AD, P4AD, SCOTUS, CNN, The Hill, CBO, CIDSA]
Pharma Hikes Abroad ≠ Lower U.S. Prices
With the September 29 deadline approaching for drug manufacturers to respond to President Trump’s demands to reduce U.S. drug prices, BMS is following in Eli Lilly’s footsteps and raising prices in the U.K., claiming the move will somehow “improve affordability in the U.S.” But basic math shows that shifting costs overseas won’t bring down drug prices for Americans, even if some discounts are provided to lessen the inflated sticker price. Pharma has proven time and again that they can’t self-regulate, creating a dangerous crisis for patients who rely on their life-saving drugs but can’t afford them. It’s time for tangible and effective enforcement measures if drugmakers fail to meet the approaching deadline. — [White House, CNN, Pink Sheet, Axios, Inside Health Policy]
100% Pharmaceutical Tariffs Coming Next Month
In a Truth Social post on Thursday, President Trump announced tariffs of up to 100% on “any branded or patented Pharmaceutical Product” starting October 1 — unless the company is already building facilities in the U.S. Reshoring can’t happen overnight, and in the meantime, drugmakers will pass higher import costs directly onto patients. Today, only 10% of the active pharmaceutical ingredients used in U.S medicines are produced domestically. Doubling the cost of importing the remaining 90% would mean higher prices for patients already struggling to afford their prescriptions. — [CNBC, POLITICO, Bloomberg]
New KFF Analysis Slams the ORPHAN Cures Act
New analysis from KFF this week confirms what patients already know: the ORPHAN Cures Act will keep prices artificially increased for people on Medicare for longer, leading to higher out-of-pocket costs at a time when 29 million Americans are already “cost-desperate” when it comes to paying for their medications. The paper also reinforces earlier reporting that the CBO’s $5 billion score vastly underestimates the bill’s true cost for taxpayers, which will skyrocket once blockbuster drugs like Keytruda are factored in. By exempting these medicines from negotiation, ORPHAN hands pharma a massive windfall while weakening one of the most popular cost-cutting programs in the country. Lawmakers should take this as a warning and reject future carveouts like the EPIC and MINI Acts that would further undermine Medicare negotiation. — [KFF, Gallup, WSJ, Congress, Congress]
In Case You Missed It
Administration officials are floating the possibility of a government-run online pharmacy, dubbed TrumpRX. While an HHS characterized the idea as “internal deliberations” and “pure speculation,” it comes in the context of President Trump’s ongoing MFN pricing push and discussions with large U.S. drugmakers. — [Inside Health Policy, Bloomberg, Independent]
Patient Advocate Spotlight: Sa’Ra Skipper
Condition: Type 1 Diabetes Drug: Insulin Background: Student from Indiana. Sa’Ra joined former President Biden in 2021 and shared remarks on the high cost of prescription drugs.
In her words: “As a diabetic, you have to fight so hard physically and mentally just to survive. There shouldn’t be a price tag on my life, and I shouldn’t have to decide if I’m going to pay for living expenses or pay for insulin.”
In a unanimous decision, the Third Circuit U.S. Court of Appeals rejected Novartis’ challenge and stood with Medicare negotiation, exactly one week after the same court delivered a similar defeat to Bristol Myers Squibb (BMS) and Janssen. The judges — appointees from Presidents Trump, Biden, and Bush — once again upheld the constitutionality of Medicare negotiation, and went one step further to rule that Novartis didn’t have legal grounds to sue. One major component of this case was the amicus brief P4AD submitted on behalf of patients, elevating the testimony of three patient advocates. Despite the back-to-back defeats of their tired legal arguments, the industry continues to funnel lawyers and millions in an attempt to roll back Medicare negotiation, and P4AD will be fighting them every step of the way. — [U.S. Courts, HHS, P4AD, Inside Health Policy, Fierce Pharma, Endpoints News, Bloomberg Law, FirstWord Pharma, Pharma Letter, Law360]
Most Favored Nation letters Deadline Approaches
In late July, President Trump sent letters to 17 large pharmaceutical corporations demanding they take steps to bring drug costs in line with comparable countries as part of his Most Favored Nation (MFN) pricing plan. The September 29th deadline is fast approaching, and in the weeks since, pharma has continued to show their disdain for MFN. Pfizer’s Albert Bourla claimed the letter “asks a lot,” referring to the requirements as a mere starting point for negotiations, and Eli Lilly responded with plans to significantly raise drug prices in Europe without making any commitment to reducing prices in the U.S. Despite this, new reporting this week shows that interest in MFN and other price reforms continues to grow across the aisle on Capitol Hill. P4AD patient advocates raised MFN with their representatives during our fly-in day last week, and our community continues to push for concrete action that will lead to lower prices for American patients. — [White House, President Trump, Axios, CNN, STAT News]
In Case You Missed It
In a New York Times op-ed, FDA Commissioner Marty Makary condemned what he calls “a nonstop bombardment of ads.” Direct-to-consumer (DTC) drug ads are a practice largely unique to the U.S., and are immensely profitable for drugmakers — estimates have found that each 1.5% increase in DTC ad spending is associated with a 10% increase in sales. Commissioner Makary is exactly right when he writes that “the billions of dollars drug companies spend on advertising would be better spent on lowering drug prices for American consumers.” — [New York Times, TIME]
In her words: “I’m lucky to have insurance coverage through my husband’s work that helps me afford my medications, but I worry about the strain these prices put on other LEMS patients and the system as a whole. I don’t know how a patient without insurance coverage could afford the astronomical price tag for these drugs.”
P4AD patient advocates from 10 states across the country travelled to D.C. this week to meet with lawmakers on both sides of the aisle. They shared their firsthand experiences with the crushing cost of prescription drugs and pressed Congress to advance reforms that rein in patent abuse and protect Medicare negotiation from industry-backed rollbacks like the EPIC and MINI Acts. With the pharmaceutical industry deploying three lobbyists per member of Congress, patient voices are essential to cut through pharma spin and remind lawmakers what’s really at stake. Patient advocates are the core of P4AD’s mission and advocacy, and the advocates involved had productive conversations and saw a clear appetite for lowering drug prices. As nine in ten Americans want Congress to take further action and millions are struggling to afford the medications they need, lawmakers have the public on their side and must deliver for patients.
Trump Admin Cracks Down on Misleading DTC Ads
The Trump Administration cracked down on the pharmaceutical industry this week, issuing a new executive action targeting misleading advertisements and requiring pharmaceutical manufacturers to replace the abbreviated disclosures they’ve used for decades with full safety warnings instead. Direct-to-consumer (DTC) advertising is a major way that the industry pads its profits in the U.S. But, it’s a rare practice abroad, legal only in New Zealand. Every $1 spent on DTC advertising is estimated to result in $2.20 to $4.20 in increased sales, and even a minor 1.5% increase in DTC spending can result in a 10% increase in drug sales. P4ADNow endorsed two bipartisan bills for this very reason. The No Handouts for Drug Advertisements Act would eliminate a tax break that makes it cheap and easy for Big Pharma to flood the airwaves with ads, and the Drug-price Transparency for Consumers (DTC) Act would require companies to include the prices of their drugs in DTC ads. It’s promising to see momentum in Washington from Congress and the Administration to rein in DTC advertising. — [White House, Inside Health Policy, JHEOR, NIH, TIME, Sen. Hawley, Sen. Durbin, Wall Street Journal, POLITICO]
Pharma Campaigns for Even More Carveouts
New reporting suggests that the $5 billion ORPHAN Cures Act — which is currently being re-scored by the Congressional Budget Office (CBO) and will cost significantly more than originally expected — could make lawmakers hesitant about further carveouts for the industry. That certainly hasn’t stopped pharma from trying. This week, the Alliance for Aging Research (AFAR), a pharma-funded front group that P4AD exposed in a previous report, is leading a letter to Congressional leadership urging support of the EPIC Act, which would further weaken Medicare negotiation. AFAR receives the majority of its funding from industry-tied donors and is now working to manufacture support from pharma aligned patient groups. Pharma’s desperation to mobilize their front groups and push through another handout — mere weeks after their last one — is simply nothing new for an industry that won’t stop until they’ve squeezed American patients and taxpayers for every possible penny. — [Pink Sheet, WSJ, P4AD, STAT News, Open Secrets]
Patient Advocate Spotlight: Beth Kitchin
Condition: Acute Lymphoblastic Leukemia and Graft vs Host Disease (GVHD) Drug: Jakafi ($17,500 / month) Background: Alabama resident and former healthcare professional. Beth attended our lobby day and met with her Senators’ and Representatives’ offices this week.
In her words: “If your drug company doesn’t pick your medication up, what do you do? I had to do all this work on filling out forms, working with the social worker at our cancer center, and at one point, I paid $1,000 for 12 pills just to get me over this little gap until I could get on this other program.”
“I found Patients For Affordable Drugs because I needed an outlet, and somebody that I could tell my story to. Patient stories are very powerful. They can really help people, not just other patients, but they also can help get messages across to the public and to our politicians.”
It’s been four weeks since Trump sent letters to 17 pharmaceutical companies demanding they align prescription drug prices with other high income nations, and Big Pharma is working hard to avoid any and all concessions or reforms. Pfizer’s Albert Bourla has referred to Trump’s executive order (EO) and letters as a “starting point” for negotiations, and Eli Lilly has responded with plans to significantly raise drug prices in Europe, without making any commitment to reducing prices in the United States. As our own Executive Director Merith Basey said late last week, “unless Pharma is forced to give up any power or ability to raise drug prices, it’s highly unlikely that they will do it on their own.” Let’s not forget that despite their public posturing, drug companies are still aggressively raising prices — with July’s price hike seeing the majority of increases far exceeding the rate of inflation. — [White House, Axios, CNN, Inside Health Policy]
August Recess Ends, New Pharma-Backed Lege Push Begins
Even after receiving a $5 billion handout via the ORPHAN Cures Act (which is expected to increase further with the pending rescore), the industry continues to demand even more. We’re closely watching two pharma-backed bills that could come into play before the end of the year: EPIC and MINI. The harmful Ensuring Pathways to Innovative Cures (EPIC) Act (H.R. 1492) would delay small-molecule drug eligibility for negotiation from 9 to 13 years, keeping prices artificially high for patients for even longer. EPIC would be yet another carveout to Medicare negotiation at the taxpayer’s expense, and another insult at a time when polling shows pharma’s popularity with the public is at an all-time low. The Maintaining Investments in New Innovation (MINI) Act (H.R. 1672) is similar to EPIC, aiming to raise the exclusivity period from 9 to 13 years for genetically targeted technologies (GTTs). Both bills rely on faulty arguments and fearmongering around innovation that doesn’t hold up to scrutiny — and both would sabotage President Trump’s ability to secure a better deal for Americans. If legislation results in higher drug prices for patients and higher costs for the federal government, it can only mean one thing: the rampant reach of pharma. — [Wall Street Journal, P4AD]
ICYMI
It’s a “thankless and lonely gig” being a pharma CEO? Try being a patient on a high cost drug, in a drug pricing system rigged against you. The whining of overpaid pharma CEOs isn’t landing with us given they’re fighting tooth and nail to roll back progress and keep prices high at massive harm to patients.
Patient Advocate Spotlight: Victor
Condition: 22q11.2 deletion syndrome, a rare genetic disorder
Drug(s): Metyrosine ($36,700 / month) — currently unaffordable
Background: 23 year old from Virginia
In her words:
In his mother Kelly’s words:“Before he got sick, Victor was smart, funny, and determined. In December 2022, after a sinus infection, everything changed. Almost overnight, Victor began hallucinating, became confused, forgot basic skills, lost continence, had significant behavioral changes and could barely speak. We were told he’d return to baseline in “weeks to months”. It’s been almost three years. He endured misdiagnosis after misdiagnosis, before finally learning the truth: 22q11.2 deletion syndrome, a rare genetic disorder.”
“[Our doctor] recommended metyrosine for Victor because it targets the excess catecholamines driving his symptoms and no other alternatives address this root cause. However, insurance has denied it. Without insurance, 120 capsules cost $36,700 a month; far beyond our reach. Without this medication, Victor will have no quality of life and may ultimately be forced into an institution, a devastating and preventable outcome.”
“Metyrosine can treat the root cause of these symptoms, it could give Victor the chance to speak again, care for himself, and return to the passions he once loved. Instead, my son is left to suffer because of cost, policy gaps, and a system that fails rare disease patients.”
AstraZeneca, Bristol Myers Squibb, Eli Lilly, and Merck have launched a new lobbying group aimed squarely at undermining the popular Medicare Drug Price Negotiation Program — the most significant check on pharma’s monopoly power in decades. Since the law’s passage in 2022, the industry has poured billions into lobbying and filed numerous lawsuits to block this progress. But the courts continue to side with patients. Having failed in court 12 times, drug companies are doubling down on their legislative strategy, with record-breaking lobbying spends in Q1 and Q2 and the launch of this new front group. Yet momentum remains with patients: Medicare negotiation continues to move forward, with STAT News reporting that the administration may push for even lower prices in the next round of negotiation, another win for Americans who are tired of paying the highest drug prices in the world. — [STAT News, P4AD, Endpoints News, POLITICO Pro, STAT News, Bloomberg Law]
Eli Lilly’s Price Hikes Abroad
Eli Lilly has indicated plans to significantly raise drug prices in Europe, without making any commitment to reducing prices in the United States. The company, like other manufacturers, already earns healthy profits in every country where it operates, yet Americans pay four to eight times more than people in peer nations for the same medicines. Raising prices abroad will do nothing to make medicines more affordable for Americans. By moving forward with a Most Favored Nation-style approach, the administration has the potential to secure a better deal for U.S. patients, but only if it includes enforcement mechanisms to prevent pharma from gaming the system and shifting costs elsewhere. Pharma action alone will not lower prices. — [CNN, STAT News, BioPharma Dive, Reuters, CNBC, Inside Health Policy]
MAHA Takes Aim at Pharma DTC Advertising
On Wednesday, it was reported that leaked documents from the Make America Healthy Again (MAHA) Commission included plans to implement new oversight measures on pharma’s direct-to-consumer (DTC) advertising — specifically on “deceptive” marketing tactics. In recent months, we’ve seen a growing trend of legislation introduced that would target these practices, including the bipartisan and P4ADNow-endorsed No Handouts for Drug Advertisements Act, which would eliminate a tax break that allows Big Pharma to flood the airwaves and grow their influence at the expense of taxpayers. The U.S. is one of only two countries that allows DTC advertising for pharmaceutical drugs, and HHS Secretary RFK Jr. has long criticized this practice. Americans understand that pharma is the reason drug prices are high, and the desire to crack down on this practice shows there’s a real appetite for common sense industry reform. — [PharmaVoice, Washington Examiner, Hawley, X]
ICYMI
A new op-ed in Health Affairs this week highlighted Congress’s opportunity to crack down on patent thickets: a pharma tactic used to block competition in the drug market. The piece underscores the need for bipartisan bills like the Affordable Prescriptions for Patients Act, a bill unanimously passed by the Senate last year, which would limit the number of patents a drug company can assert on a biologic drug. — [HealthAffairs, P4ADNow]
Patient Advocate Spotlight: Jackie Trapp
Condition: Multiple Myeloma, an incurable blood cancer
Drug(s): Revlimid ($180k / year before the $2k cap) and Xarelto
Background: Former high school teacher from Muskego, WI
In her words:
“Since my diagnosis ten years ago, the price of my prescriptions has been a constant source of stress and instability in my life. We have decimated our life savings and equity and have put off appointments we deem less vital. I am grateful for the drug that has saved my life, but I am also resentful that the financial burden is draining my life at the same time. The out-of-pocket cap is life-changing for my husband and me. We are finally able to replenish our savings account and do things we have been putting off, like seeing the dentist — and I don’t have to worry about leaving my husband bankrupt.”
Fierce Pharma’s latest ranking of the most expensive drugs in the U.S. underscores the rapid escalation in launch prices, driven primarily by gene therapies priced between $2.2 million and $4.25 million per dose. While some of these treatments face other hurdles to patient uptake, the price tag itself is a major barrier – especially when the same drugs often launch at significantly lower prices in countries like Spain and Brazil. P4AD has long pushed to rein in high launch prices so medical breakthroughs are affordable for the patients who need them. — [Fierce Pharma, P4AD]
Three Years of Drug Price Reforms
Tomorrow marks the third anniversary of the 2022 Prescription Drug Law — the historic law that, for the first time, gave Medicare the power to negotiate lower drug prices, capped insulin at $35 a month for Medicare beneficiaries, established a $2,000 annual out-of-pocket cap for Medicare drug costs, and made vaccines free for people with Medicare. Patients are already seeing the impact: over 10 million people received free vaccines in 2023, an estimated 1.5 million people benefited from the insulin cap in its first year, and more than 11 million people are expected to save in 2025 because of the out-of-pocket cap, and there are more savings to come. The first round of negotiated prices will take effect in January 2026, saving patients and taxpayers billions, with billions more in savings in subsequent years expected. However, Big Pharma continues to spend millions to overturn these monumental reforms — and P4AD is working alongside our patient community to defend them. What patients are saying about the law:
Bob Parant, who takes insulin: “This law changed my life. I’ll spend less on prescriptions, which means I can visit my grandchildren more and not worry as much about my retirement.”
Judy Aiken takes a drug included in the first round of negotiation: “Seeing Enbrel on the list gave me hope. Its high price has been a constant anxiety. A better deal on this drug will be life-changing for me and thousands of other patients.”
Lynn Scarfuto takes Imbruvica (drug included in the first round of negotiation) and reached the $2,000 cap: “I hit the $2,000 cap in January — and now I pay $0.”
Update On Imported Drugs Tariffs
The Trump administration’s probe into pharmaceutical imports and potential sector-specific tariffs — which could eventually reach 250% — is now likely weeks away, despite earlier timelines. Meanwhile, President Trump issued an executive order directing health officials to secure a six-month domestic supply of active pharmaceutical ingredients (APIs) for about 26 critical drugs, with plans to expand to a broader list of 86 essential medicines. Currently, only 10% of U.S. prescription drug APIs are made domestically, raising concerns about both supply chain security and potential impacts on drug prices and patients. — [Reuters, Axios]
In Case You Missed It
In July alone, drug companies hiked prices on 152 medications — and more than 60% of those increases were above the inflation rate. Some drugs, like Novartis’ gene therapy Zolgensma, increased by more than $119,000 in a single hike. Twenty drugs were hiked in both January and July, underscoring that price hikes aren’t about innovation; they’re about profit.
*Introducing a new weekly patient advocate spotlight. These advocates are the heart of our movement and courageously share their stories to drive change.
Patient Advocate Spotlight: Lisa McRipley, Michigan
Condition: Multiple Sclerosis (MS)
Drug(s): Kesimpta ($8,000/year). Lisa met the $2,000 out-of-pocket cap.
Background: Former Higher Education Administrator, and current caregiver to her mother.
In her words:“…the costs of the prescription medication to treat my symptoms add up to several thousand dollars a year, and living on a fixed income, I can’t afford it. My parents and siblings help pay for my groceries and meals to supplement my ability to pay for my medication.. Since [IRA’s] passage, I can see the light at the other end of the tunnel! … Now, I will pay no more than $2,000 a year!”
Three Major Defeats to Pharma’s Legal Campaign Against Medicare Negotiation
This week saw three blows to pharma’s multi-million dollar legal campaign against the Medicare Negotiation Program. On Wednesday, the Sixth Circuit U.S. Court of Appeals blocked a legal challenge brought by various Chambers of Commerce. The case was originally dismissed in August 2024 by a federal district judge in Ohio, with this week’s decision upholding the lower court’s ruling. Less than 24 hours later, the Second Circuit U.S. Court of Appeals denied Boehringer Ingelheim’s attempt to stop the program in its tracks. The three-judge panel — which included two judges appointed by President Trump and one Clinton appointee — affirmed last July’s lower court decision that the Medicare Negotiation Program is fully constitutional and lawful. Finally, the U.S. District Court for the Western District of Texas rejected a sweeping constitutional challenge from PhRMA, affirming that the program is a lawful and appropriate exercise of congressional authority. These decisions mark the 10th, 11th, and 12th court rulings in favor of patients and against the industry’s attacks on Medicare negotiation. — [The Hill, U.S. Court of Appeals, P4AD, Litigation Tracker, First Word Pharma, FightPharma, Public Citizen, Fierce Healthcare, IP Watchdog, Bloomberg Law, Endpoints News, POLITICO, Bloomberg Law, Healthcare Finance, The Hill, POLITICO, Inside Health Policy]
ORPHAN Cures Gets A Re-Score – and it’s Even Worse Than What We Thought
Last weekend, The Wall Street Journal revealed that the Congressional Budget Office (CBO) will be re-scoring the ORPHAN Cures Act to account for its impact on even more blockbuster drugs than previously anticipated, meaning its already massive $5 billion price tag is set to grow. When first scored, the ORPHAN Cures Act was projected to cost taxpayers nearly $5 billion over the next decade, allowing drugmakers to reap the rewards of a weakened Medicare Negotiation Program. This policy change is not needed, as Medicare negotiation already preserves all the incentives for rare disease research under the 42-year-old Orphan Drug Act. With the upcoming re-score revealing the full scale of this pharma-backed carveout, patients have already been mobilizing to stop another potential pharma giveaway: the harmful EPIC Act, which would further undermine the negotiation program’s ability to lower drug prices. — [Wall Street Journal, P4AD, Congress]
PhRMA Hits New Q2 Lobbying Record
After breaking the record for the most spent in a single quarter with $12.9 million in Q1, PhRMA followed it up with $7.58 million last quarter, the highest Q2 spend in its history. This investment is being deployed in an attempt to roll back provisions in the 2022 prescription drug law and keep prices extortionately high for patients. At the same time, drugmakers are ramping up efforts to deflect blame for high drug prices onto pharmacy benefit managers (PBMs). With three lobbyists per member of Congress, the pharmaceutical industry is only escalating its campaign to drown out the voices of patients — but P4ADNow continues fighting to elevate the voices of our advocates and continue fighting back against pharma’s monopoly. — [POLITICO, Endpoints, Sludge, WSJ, KFF Health News]
Pharma’s mid-year price hikes are hurting patients across the country. This week, we’re highlighting one particularly egregious example: Vertex Pharmaceuticals raised prices on its two flagship cystic fibrosis (CF) medications, Trikafta and Kalydeco, to over $28,400 per month — a hike more than 2.5 times the rate of inflation. Trikafta is Vertex’s top-selling drug by far, with the company stating that its 2024 revenue of over $11 billion is “primarily driven by [Trikafta’s] continued performance.” Vertex has long beenunderfire from patients and doctors for its predatory pricing practices, and it’s the sole manufacturer of drugs that can add years to the life expectancy of people with CF. They’re choosing to maximize profits by drastically hiking prices on vulnerable patients with no other alternatives to fight their rare disease. — [Vertex, Boston Globe, BioPharma Dive, Fierce Pharma]
In Case You Missed It
New reporting from the Washington Post revealed that the Trump administration is planning a five-year experiment to cover GLP-1 weight loss drugs under Medicare and Medicaid. According to documents from CMMI, the proposed plan would allow state Medicaid and Medicare plans to cover drugs like Ozempic, Wegovy, Mounjaro, and Zepbound for weight management purposes. — [Washington Post]
*Introducing a new weekly patient advocate spotlight. These advocates are the heart of our movement and courageously share their stories to drive change.
Nicholas from Ellenton, Florida
Condition: Multiple Sclerosis (MS)
Drug: Vumerity ($1,949/month)
In his wife Diane’s words: “Due to the high cost charge differences and bills, between our insurance and Medicare Part D, Nicholas has not been able to get Vumerity and has seen his health decline. As a retired nurse, I just can’t let this happen, but the entire situation has consumed my life, from looking for other grants, reaching out to organizations, and calling our insurance plan to dispute the coverage.”
“We hope that the Medicare Negotiation Program will continue to lower the costs of selected medications, and hopefully include MS drugs in the negotiation process.”
