Over the last 12 months, our community has been at the forefront of amplifying patient voices in the fight to lower drug prices, fighting back against pharma lies, and advocating for bills that will increase competition and reduce patent abuses. From launching the Push for Competition with AARP alongside key allies to supporting the continued fight to ensure the successful implementation of the drug price provisions in the Inflation Reduction Act, our daily efforts have centered on uplifting patient voices and holding those in power to account so everyone in the United States can get the prescription drugs they need at prices they can afford. Highlights from the year include:
1. Patient Advocates Celebrating the Popular Drug Price Reforms
Throughout the year, P4AD patient advocates led the charge in celebrating the impactful drug price reforms in the Inflation Reduction Act. From, Ginny Boynton sharing her story with President Biden about the impact of the Inflation Reduction Act provisions, to Steven Hatfield’s delivery of remarks during the announcement of the first 10 drugs for negotiation, to P4AD Founder and patient David Mitchell’s introduction of President Biden at the White House’s event at the National Institute of Health, patient stories have remained the cornerstone of our advocacy. Approaching the Inflation Reduction Act’s first-anniversary milestone, tangible benefits such as insulin copay caps, free vaccines, and inflation-based rebates underscore its concrete advantages for patients. In the face of Big Pharma’s misinformation, our advocates countered through insightful op-eds and discussions. David’s contributions to The Hill and Bloomberg Law’s podcast shed light on the longstanding ban on Medicare negotiation and the challenges patients endure due to exorbitant drug prices and why the drug law matters. Meanwhile, P4AD Executive Director, Merith Basey’s defense of the Act in conferences and interviews, along with Steven Hadfield’s feature in the Financial Times, emphasized the profound relief brought by Medicare negotiation, particularly evident in the implementation of insulin copay caps for crucial medications. Patient advocates including David Mitchell as well as Judy Aiken, Bob Parant, Lynn Scarfuto, Steven Hadfield, and Doug Lusty represented P4AD at 7 of the 10 Centers for Medicare and Medicaid patient listening sessions, sharing their struggles with high drug prices and countering the lies from pharma shills. These combined efforts epitomized the unwavering dedication of P4ADNOW advocates in dismantling industry resistance and championing the lasting benefits of these pivotal reforms alongside allies.
2. Push For Competition Launch And Building Momentum
Competition in the pharmaceutical landscape is a direct challenge to Big Pharma’s long-protected monopoly, disrupting their firm grip over drug pricing. At the forefront of our organizing and advocacy efforts, this year has been our “Push for Competition to Lower Drug Prices”, headlined by a press conference in July alongside Senator Klobuchar. This push included a 6-figure digital ad campaign, featuring two powerful patient stories from Jacquelineand Lisa, culminating in over 20,000 letters sent and nearly 20,000 calls to Senate offices, echoing the voices of patients demanding legislation to combat pharmaceutical monopolies and prevent patent abuses that keep prices high. In November, along with 60 other organizations, P4AD and AARP sent a letter addressed to Senator Majority Leader Schumer and Senator Minority Leader McConnell, underscoring the urgent need for bipartisan reforms. Furthering this momentum, patient advocates including Lisa of Richmond, Texas, Sue of Crestwood, Kentucky, Pam of Granger, Indiana, Judy of Portland, Maine, and Jacqueline of Cedar Falls, Iowa, took their impassioned pleas to their representatives’ offices in a powerful display of grassroots activism. In other grassroots efforts, patient advocate Bob Parant’s op-ed in the New York Daily News and David Mitchell’s TIME op-ed alongside Tahir Amin of I-MAK emphasized the critical need for legislative action to counter Big Pharma’s monopolistic practices. Further as a result of the recent passage of the Lower Costs, More Transparency bill in the House, there is increased momentum for a comprehensive healthcare package in the Senate this month which presents an opportunity to pass a package of these bipartisan bills.
3. Spanish Language Program Expansion
Through a strategic collaboration with Jamii, we were able to bolster our multilingual outreach efforts to engage new and more diverse communities. This partnership was instrumental in launching a Spanish version of the Medicare Negotiation website and patient advocacy Hub, coinciding with the first anniversary of the Inflation Reduction Act in August 2023. Acknowledging that Latinos, many of whom are Spanish speakers, are disproportionately impacted by high drug prices our goal was to ensure more patients across the country were not only made aware of these new provisions but could more easily understand how they will be able to benefit from them now and into the future. P4AD further expanded its multilingual reach, through releasing Spanish-language content that included Bilingual Organizer Jesse Aguirre’s impactful op-ed in El Planeta and other communications. We introduced 152 new patients to our community who have shared their stories about high drug prices in Spanish.
4. Reports Driving Change
P4AD’s relentless research efforts continued to drive toward critical policy change throughout the year. Our updated “Hidden Hand” report – Hiding in Plain Site’ illuminated the drug industry’s ties to three so-called “patient advocacy groups”: The Haystack Project, No Patient Left Behind, and the Community Oncology Alliance which operate to boost the power and profit of the drug industry.
Meanwhile, keeping pace with the ongoing developments, here’s a snapshot of the latest events in the world of prescription drug pricing.
1. Capping the Cost of Insulin
This week saw another step forward in the ongoing battle for more affordable insulin for millions of Americans. Sanofi, aligning with announcements in 2023 from Eli Lilly and Novo Nordisk, finally put a lid on the monthly out-of-pocket costs for its most popular Lantus insulin, capping it at $35. It’s a stark reminder that claims from major drug companies about their inability to lower prices are false. These corporations have arbitrarily maintained high prices in the US for years, prioritizing profits over people’s lives. Despite a decade of advocacy from insulin activists and increased pressure as a result of the Inflation Reduction Act, this initiative by the Big 3 does offer a new glimmer of hope for those grappling with the outrageous costs of this crucial medication. (Axios, USA Today, The Copper Courier)
2. Importing Rx From Canada
The FDA’s approval of Florida’s plan to import cheaper prescription drugshighlights the pressing issue of exorbitant drug prices in the United States. While this move offers some relief, it’s not a comprehensive solution. Relying solely on state-by-state importation from Canada isn’t feasible as it’s not a sustainable way to meet the nation’s medication needs. The limitations include Canada’s inability to supply the entirety of the U.S. demand and the pharmaceutical industry’s reluctance to supply Canada adequately for further exports to the U.S. It’s clear that we require federal-level solutions to address this issue comprehensively. Expanding Medicare negotiation and implementing reforms to curb drug companies’ patent system exploitation, which stifles competition and maintains high prices, are essential. While the Inflation Reduction Act marked a critical step, more federal actions are necessary. Bipartisan bills in Congress have gained significant public support and offer potential pathways toward achieving widespread and enduring price reductions for all Americans. (FDA, New York Times)
Welcome to the Week in Review.
1. Pharma’s Legal Assault on the Inflation Reduction Act
The pharmaceutical industry’s opposition to the new Medicare drug negotiation program introduced via the Inflation Reduction Act was back in the news this week. The continued legal assault on negotiating lower drug prices for patients reveals a familiar pattern: prioritizing massive profit margins over the affordability of life-saving medications for Americans. Large pharmaceutical corporations are using whatever avenues available to protect their financial interests rather than reduce drug prices for patients. The Department of Justice’s dismissal of these challenges this week highlights the Inflation Reduction Act’s constitutional backing and Congress’s authority to enact measures to address exorbitant drug pricing. Yet, the ongoing legal battles underscore the industry’s persistent efforts to manipulate systems to their benefit and their willingness to do whatever it takes to maintain a monopoly chokehold on medicines priced in the United States. In our commitment to supporting fairer drug pricing, Patients For Affordable Drugs endorsed two amicus briefs this week as part of our ongoing efforts in defense of the Inflation Reduction Act and support of lower drug prices for patients. And in 2024, get ready for an exciting announcement from us about a new patient-centered strategy set to shake up the status quo in favor of lower drug prices for patients across the country! (Inside Health Policy)
2. AbbVie’s Tactics Highlight Need for Pharmaceutical Reforms
AbbVie’s relentless pursuit of market dominance for Humira continues to yield staggering profits at the expense of patients. The company’s efforts to maintain revenue by stifling competition through patent manipulation have drawn intense criticism, highlighting the controversial tactics prevalent among pharmaceutical giants to maintain their monopolies. These practices are emblematic of wider issues in the pharmaceutical industry and underscore the need for reforms aimed at preventing such abuse and fostering a more competitive and fair marketplace. The recent passage of the ‘Lower Costs, More Transparency Act’ in the House reflects increasing momentum toward a comprehensive healthcare package in January, where reforms aimed at tackling patent abuses and fostering competitive markets could be included. This recent op-ed by patient advocate Bob Parant in the New York Daily News similarly urges further action from Senator Schumer on these competition bills. Additionally, our community at Patients For Affordable Drugs is once again ramping up calls and letters into Senate offices, amplifying the push for these competition bills, reflecting a groundswell of support for addressing these critical issues. (Forbes, MedCity News, Politico, New York Daily News)
3. Rising Healthcare Costs and the Push for Affordable Medications
In 2022, retail spending on prescription drugs surged, accounting for about 9% of total healthcare spending and reaching $405.9 billion—an 8.4% increase from 2021, following a 6.8% growth in 2020. The Biden administration has aimed to curb some of these escalating retail drug prices through the reforms in the Inflation Reduction Act, but also through the recent announcement that the administration could break the patents on drugs funded by taxpayer money if their prices prove excessively high, and highlighting agencies have the right to “march-in” if a drug isn’t reasonably available or affordable—a critical detail and an extra too use in the battle for fair drug pricing. (Idaho Capitol Sun, White House Fact Sheet)
Patients For Affordable Drugs will be closed through January 1st. Wishing you peaceful and restorative holidays and we look forward to sharing some exciting new updates in the New Year!
Welcome to the Week in Review.
1. Taking Aim At Soaring Drug Prices
Yesterday, President Biden visited the National Institutes of Health, to announce that dozens of pharmaceutical companies will be required to pay rebates to Medicare for excessive price hikes on prescription drugs used by over 750,000 seniors annually. In the last quarter of 2023 alone, 48 Medicare Part B drugs surged in prices faster than the rate of inflation, leading to potential rebates under the Inflation Reduction Act. President Biden’s initiative aims to curb these exorbitant price hikes, ensuring companies repay Medicare, saving seniors between $1 and $2,786 per dose on these medications. Patients For Affordable Drugs (P4AD)’s President and Founder, David Mitchell, introduced President Biden at the event. As a patient on Medicare living with multiple myeloma, David shared his personal journey with high drug prices and celebrated the significant strides made in drug pricing reforms as a result of the Inflation Reduction Act. David is one of millions of patients whose drugs will cost him less from 2026 since Eliquis, one of his medications, is one of the first 10 being negotiated by Medicare. (The Hill, Reuters, Fortune, YouTube)
2. Enforcing Fair Drug Pricing
The White House and Health and Human Services (HHS) have also made significant progress this week towards ensuring Americans pay fairer prices for medical products they helped pay to invent through their taxpayer dollars by making fair pricing a new standard part of negotiations. The Administration for Strategic Preparedness and Response (ASPR) has integrated fair pricing criteria into recent contract agreements. Notably, contracts with organizations like Regeneron, CastleVax, Codagenix, and Gritstone Bio, as part of Project NextGen, outline provisions that require their commercialized products to be priced in the U.S. at levels equivalent to or lower than those in comparable global markets. This initiative aims to protect people from disproportionately high drug costs, ensuring that innovations backed by taxpayer dollars are affordable and accessible. (White House Fact Sheet, MedPage Today)
3. Setting the Stage For Senate Health Care Package
The House of Representatives passed the “Lower Costs, More Transparency Act” on Monday night, a pivotal step toward addressing high drug prices. The firm bipartisan passage of this legislation increases the momentum for a comprehensive healthcare package in the Senate in January and presents an opportunity to pass bills aimed at lowering drug prices by addressing patent abuses and other anti-competitive tactics employed by drug companies to delay generic and biosimilar competition. This overwhelmingly bipartisan effort paves the way for a bipartisan end of year package that can lower prescription drug prices for all patients. (MedCity News, Pink Sheet)
BONUS: Not all patient groups are what they seem! This new report from Public Citizen shows the power of Pharma dollars at work and how they leverage patient groups to do their bidding including during the fight to pass the drug price reforms in the Inflation Reduction Act. Their actions keep prices high for patients. From the report; “if a patient advocacy group expresses doubts about a drug-pricing bill, that may have a greater impact. If a local advocacy organization publishes an op-ed in the member’s local paper, that will no doubt get a member’s attention. If a new controversial drug to treat a disease gets the ringing endorsement of the patient group representing those inflicted with the disease, that could carry great weight”. Bottom line: If you’re in bed with pharma, you’re not doing enough on drug pricing. To understand the influence of Pharma on a patient group see P4AD’s The Hidden Hand and the 2023 Update Hiding in Plain Sight. (KFF Health News)
Have a great weekend!
As we approach the end of 2023, we wanted to highlight the historic drug price reforms in the Inflation Reduction Act delivering relief to millions of patients on Medicare.
Medicare negotiation is critical for patients who have been forced to pay exorbitant prices for some of the most widely-used, expensive medications. Bristol Myers Squibb (BMS) blood thinner Eliquis, one of the drugs selected for the first round of Medicare negotiations, has been priced out of reach for many patients since hitting the market in 2013. Since there are no generic competitors to Eliquis, BMS is able to dictate the price to patients and taxpayers and extract increasing amounts of profit without any meaningful improvement to the drug. During periods of market exclusivity, “drug companies use their market power to set prices well above the costs of production and distribution,” said Richard G Frank, a professor emeritus of health economics at Harvard Medical School. Christen Linke Young, White House Domestic Policy Council’s deputy assistant to the president for health and veterans affairs, called out BMS at a STAT event for fending off generic competition to Eliquis and as a result “earned themselves the privilege of getting paid $16 billion by Medicare last year alone.” This long history of unjustified price hikes has hurt patients who depend on this life-saving medication. Thankfully, a lower negotiated price for Eliquis will deliver relief to millions of patients on Medicare starting in 2026. (Philadelphia Inquirer, STAT)
2. Patent Abuse Watch
In the latest Big Pharma shenanigans, AbbVie is suing potential competitors to its blockbuster drug Rinvoq, alleging that generic makers are infringing on more than 30 patents. This is a classic tactic in Abbvie’s patent abuse playbook, which also propelled its blockbuster drug Humira to earn billions of dollars of profit by obtaining dozens of unmerited patents and charging patients unjustifiably high prices. This latest example of patent abuse underscores the urgent need for reforms to our patent and regulatory systems. Johnson and Johnson’s (J&J) is attempting to exploit our patent system in a similar fashion by reaching settlements with generic makers to delay biosimilar versions of its psoriasis and irritable bowel drug Stelara. As a reminder, every additional day of market exclusivity for Stelara in the U.S. drives almost 18 million in revenue for J&J. Patients deserve lower priced competition to come to market and deliver relief from the unfettered pricing power held by profit-hungry brand name drug corporations. (Fierce Pharma, Biospace)
3. States Push For Lower Insulin Prices
There’s growing momentum within state and local governments to ease the financial burden of expensive insulin medications. Lawsuits have been filed in Utah, Arizona, New York, Virginia, and Maryland alleging that big insulin makers — Eli Lilly, Sanofi, and Novo Nordisk — worked in tandem with pharmacy benefit managers (PBMs) to price insulin out of reach for many patients who depend on this life-saving medication. These profit schemes hurt patients–too many of whom have been forced to ration their insulin supply or completely go without because of its high price tag. Taxpayers are also directly affected by the enormous costs placed on the U.S. healthcare system. The $35 monthly insulin copay cap for patients is just the start — we will keep fighting until insulin is affordable and accessible to everyone! — (STAT)
BONUS: P4ADNow salutes Senators Dick Durbin and Chuck Grassley for introducing bipartisan legislation to increase price transparency in direct to consumer advertisements on prescription drugs. Thank you Senators for prioritizing patients over the interests of Big Pharma!
Have a great weekend!
Wishing everyone a restful and restorative Thanksgiving break! Here’s a roundup featuring P4AD patient advocates at the virtual CMS Listening Sessions for the Medicare Negotiation Program
David Mitchell, a cancer patient and founder of Patients For Affordable Drugs whose drugs carry a combined list price of more than $900,000 per year, kicked off the first day of the Centers for Medicare & Medicaid (CMS) patient focused listening sessions with remarks on taking blockbuster blood thinner Eliquis and the relief to come from its negotiated drug price. “Negotiation on Eliquis is going to help millions of patients like me have both better health and improved financial well-being,” David explained. The following day, longtime P4AD patient advocate Judy Aiken shared her experience from her home in Maine at the Enbrel listening session: “Enbrel’s high cost has been a real burden, a constant anxiety. A lower price for this drug will be life changing for me and thousands of other patients.”
P4AD patient advocate Bob Parant, who lives with type 1 diabetes and introduced the President in September last year following the passage of the Inflation Reduction Act, spoke at the listening sessions about his high out-of-pockets costs for Entresto — a heart failure medication that keeps him alive following a recent triple bypass surgery. “I am always on high alert with all of my meds. Many do not realize what additional stress this presents besides living with the disease itself,” remarked Bob at the patient listening session for Entresto. Thankfully, in 2026, he won’t have to worry so much about managing the high costs of his life-saving medication due to Medicare negotiation. Lynn Scarfuto, a P4AD advocate who takes oral chemotherapy drug Imbruvica for her leukemia, celebrated the announcement that her anticancer medication will be eligible for Medicare negotiation in 2026. She shared at the Imbruvica listening session that the monthly list price of her medication is hugely cost prohibitive at $17,000 a month and hopes that “future negotiations will make these meds more affordable” for patients like her on Medicare.
P4AD patient advocate Steven Hadfield, who lives with a rare blood cancer and type 2 diabetes, and who introduced the President when the first 10 drugs selected for negotiation were announced, shared the relief he felt when his diabetes medication, Januvia, was announced as one of the first drugs that Medicare will negotiate a lower price for in 2026. “I know Medicare negotiation is a blessing not a detriment for patients like me, as a decrease in price would allow working class Americans to feel some well needed financial relief and enjoy access to more affordable medications,” said Steven during the Januvia listening session. At the Stelara listening session, P4AD patient advocate Doug Lusty commented on the financial burden caused by the high cost of Stelara in addition to his other expensive medications that he depends on to treat his Crohn’s disease and diabetes. “I am already on a fixed-income and have been hit financially hard with medical expenses between my wife and I, which means lower drug prices will ultimately let us enjoy some savings and give us more breathing room that we desperately need.”
Despite the presence of pharma talking points saturating the sessions, we want to express our deepest thanks to all P4AD patient advocates, whose stories illuminate the urgency and impact of Medicare negotiations. It’s undeniable that the success of the historic drug price reforms within the Inflation Reduction Act is due to the power and dedication of these patient advocates speaking out in direct opposition to pharma interests.
Have a great holiday!
Welcome to the Week in Review.
1. Deflating Big Pharma Lies
We know that Big Pharma will go to extreme lengths to preserve its monopoly pricing power and egregious profits. It turns out that their fear mongering claims about the Inflation Reduction Act are falling flat. Compared to last year, drug company research & development (R&D) spending is increasing and mergers and acquisition (M&A) is on the uptick, according to a study by ATI Advisory. Big Pharma is flush with cash! Despite Big Pharma’s constant spewing of misinformation, patients are able to steer through this shroud of propaganda and are already feeling relief from the drug price reforms in the Inflation Reduction Act. “Innovation is meaningless if no one can afford it,” wrote Jim from Minnesota in a letter-to-the editor. “Medicare negotiation will finally allow the program to look at whether drug prices are justified and move toward a system that rewards meaningful advances, leading to more innovation.” The historic drug price law is prioritizing patients’ health and financial well-being, while also continuing to enable innovation. — (ATI Advisory, Duluth News Tribune)
2. Patients Need Competition To Lower Prices
There was more evidence this week that drug companies game our patent and regulatory systems to maintain market exclusivity and charge patients high prices. According to analysis published in JAMA, between 2004 and 2021, a U.S. appeals court found 36 cases in which companies failed to disclose accurate information to the U.S. Patent and Trade Office (USPTO). More than 60 percent of those invalidated patents were attributed to medical products covered by the Food and Drug Administration (FDA). This draws attention to the question of the genuine “innovation” being brought by these patents filed by drug companies. One of the study’s authors, Sean Tu, argued that the USPTO should improve communication with the FDA to prevent patent abuse. “If somebody asked me how many people are speeding on the highway? I would say I‘ve no idea, but I can tell you how many are caught speeding. And if 50% are driving red Corvettes, then maybe we should look at red Corvettes. In this instance, the companies with FDA-approved products are red Corvettes,” Tu told STAT. “Perversely, patents can also create incentives for innovations that create very little value,” wrote James and Robert Rebitzer in a STAT opinion. They continue to explain that Big Pharma uses secondary patents and other tactics that “offer little benefit to patients and society” and exist purely to extend monopoly periods. That’s why we’re pushing for bipartisan bills that will fix our rigged patent system and close regulatory loopholes to encourage competition and lower drug prices. — (JAMA, STAT, STAT)
3. Insulin Affordability Crisis
On Monday, the Congressional Black Caucus convened to discuss how diabetes disproportionately affects Black Americans and called for more action to help provide relief for insulin costs. Rep. Shontel Brown cited a study last year that found 23 percent of Black people were rationing their prescribed insulin due to high costs. This devastating reality for many patients who depend on insulin is enabled by rampant patent abuses from the drug corporation cartel that controls the world’s insulin market. Drug companies making insulin products regularly file for multiple patents after FDA approval and extend market exclusivity, according to a study published in PLOS Medicine. While the $35 insulin copay cap in the Inflation Reduction Act for patients on Medicare represents a significant step in the right direction, many people in the U.S. are still facing high costs and can be forced to ration or go completely without their insulin which can be deadly. We will keep fighting to ensure that everyone can access insulin at prices they can afford. — (Cleveland.com, PLOS Medicine)
BONUS: P4AD’s David Mitchell was one of several co-authors on this new paper in Nature that examines the ways that universities and academic medical centers, which receive large amounts of funding from taxpayers, can better ensure medicines including novel gene therapies are priced to maximize public health and lessen the burden that high drug prices impose on patients and society.
Have a great weekend!
Happy Veterans Day to our nation’s heroes and their families.
In the spirit of the Medicare negotiation listening sessions, a reminder that the Department of Veteran Affairs has been negotiating drug prices since 1993.
Welcome to the Week in Review.
1. CMS Listening Sessions Continue
This was the second week of Centers for Medicare & Medicaid Services (CMS) virtual listening sessions where patients taking the first 10 drugs eligible for Medicare negotiations shared their experiences with high drug prices and what this relief will mean to them. And once again, we witnessed the reiteration of pharmaceutical industry talking points that do not align with the best interests of patients. Standing up to Pharma, P4AD patient advocate Lynn Scarfuto applauded the inclusion of her costly cancer treatment, Imbruvica — which carries a monthly list price of $17,000 — on the list of negotiated drugs. P4AD patient advocate Steven Hadfield, 71, (who introduced the President when the first 10 drugs selected for negotiation was announced) shared the relief he felt when his diabetes medication, Januvia, was announced as one of the first drugs that Medicare will negotiate a lower price for. “Lower drug prices will firmly allow me to rest more often and hopefully allow me to transition from working full time to working part time,” said Steven during the Januvia listening session. Bob Parant, who shared his story with CMS last week, was featured on the White House’s Facebook page, highlighting the power of patient advocacy. We are eager to see the negotiation process continue, and long-awaited relief delivered to patients, like Lynn, Bob, and Steven, who have been forced to pay unreasonably high drug prices. Millions of patients on Medicare will see significant savings when lower negotiated drug prices take effect in 2026. (P4ADNOW, Protect Our Care)
2. Momentum To Curb Patent Abuses
It’s no secret that big drug companies game the patent system to preserve their monopoly pricing power, delay generic competition from coming to market, and push medications out of reach for far too many patients. This week, the Federal Trade Commission (FTC) doubled down on its promise to address patent abuses and challenged more than 100 patents held by the makers of asthma inhalers, epinephrine autoinjectors, and other essential medications. “We’re taking this action because I think, as we all know, there is a crisis in our country when it comes to health care costs,” FTC Chair Lina Khan told NPR. “And all too often, people are not able to afford the medicines they need, the life-saving drugs that they need.” In an interview with Current Affairs, Nick Dearden, global director of Global Justice Now and author of Pharmanomics, detailed how drug companies game the patent system to extend market exclusivity, such as “evergreening” where drug companies make small, insignificant changes to a drug just to earn more patents. As a result, lower-cost generics are prevented from hitting the market and delivering relief to patients who depend on these life-saving medications. We must continue to crack down on Big Pharma’s deceitful maneuvers and pass laws to fix our patent system and close regulatory loopholes. — (NPR, Current Affairs)
BONUS: For our bilingual readers – shout out to our very own Jesse Aguirre for his op ed published in El Planeta yesterday in Spanish on how Patient stories have the potential to overturn the status quo of Big Pharma. Bravo!
Have a great weekend!
On November 1st, Ady Barkan, co-founder of Be A Hero, widely-known advocate in the fight for health justice, and who got his start in health advocacy at UAEM, died of complications from amyotrophic lateral sclerosis (ALS) at 39 years old. When he was diagnosed in 2016, Ady chose to leverage his own powerful patient story to persuade policymakers to prioritize people over profit. He will be sorely missed but his impact and legacy to help transform the US healthcare system will continue.
Welcome to the Week in Review.
1. P4ADNow Urges Senate Leadership To Pass Competition Bills
On Tuesday, over 60 organizations sent a letter, co-led by P4ADNow and AARP, to the Senate toadvance a package of bipartisan bills to lower drug prices through reforms to our patent and regulatory systems and increased competition. The organizations — representing patients, consumers, seniors, churches, students, and disease advocacy groups — called on senators to urgently pass these reforms to lower prescription drug prices for millions of patients. The letter addressed to Senate leadership underscored that these reforms have significant bipartisan backing from a majority of voters and that this package of bills will save taxpayers $2.5-3 billion over the next 10 years. “Senators on both sides of the aisle have put in far too much work on these bills over several years to let this opportunity be lost,” said P4ADNow’s Merith Basey. “The moment is at hand to enact reforms that voters overwhelmingly support and which will help patients of all ages regardless of whether they get their health care in the private or public sector.” We urge the 118th Senate to ensure that patients and consumers are seeing relief from high drug prices and advance bipartisan legislation to curb abuses to our patent and regulatory systems and encourage generic and biosimilar competition coming to market. Congress, over to you! — (P4ADNow, MedPage City, Inside Health Policy, Campaign For Sustainable Rx Prices)
2. P4AD Patient Advocates At CMS Listening Sessions
As part of the Medicare Drug Price Negotiation Program, Centers for Medicare and Medicaid Services (CMS) began its series of virtual patient-focused listening sessions this week. Dedicated P4AD patient advocates Judy Aiken and Bob Parant, shared their experiences with high drug prices and what Medicare negotiation would mean for them. “Enbrel’s high cost has been a burden, in cost and anxiety. A lower price for this drug will be life changing for me and thousands of other patients,” remarked Judy at the Enbrel listening session. While the sessions are intended to be an opportunity for patients, caregivers, and patient advocacy groups to share input related to the first 10 drugs eligible for Medicare negotiations, common Big Pharma talking points were clearly on display via numerous representatives of so-called advocacy groups. P4AD’s David Mitchell, who participated in the initial session for Eliquis, a blood thinner medication he relies on as a patient living with multiple myeloma, toldPolitico that “[Big] Pharma tried to hijack the first meeting with its paid front groups.” Next week, the listening sessions continue through November 15th. Keep an eye out for passionate P4AD patient advocates expected to share their lived experiences with unjustified high drug prices and what it means to have Medicare negotiate lower drug prices for their essential medicines. — (The White House, Protect Our Care, Politico)
3. Medicare Negotiations Will Bring Relief To Patients
Patients on Medicare are eager for successful implementation of the historic program and will begin to feel relief when lower negotiated drug prices take effect in 2026. In an interview with MedPageToday, Centers for Medicare and Medicaid Services (CMS) Administrator Chiquita Brooks-LaSure explainedhow patients and taxpayers will see relief from Medicare negotiation: “So it helps people in Medicare, but it also helps all of us as taxpayers who are supporting the Medicare system to make sure we’re getting the best deal.” Public Citizen released a report that called out Amgen for the drug company’s extensive patent abuses for its blockbuster drug Enbrel, one of the first selected drugs to be negotiated. Public Citizen argued that Medicare could have saved “$1,053,023,122 in less than four years” if competition had been allowed to come to market in 2019. Thankfully, patients on Medicare will see a lower negotiated price for this essential medication. — (MedPage Today, Public Citizen)
4. On The Horizon:Sickle Cell Disease Gene Therapy
We are on the cusp of revolutionary cell and gene therapies coming to market that offer potentially curative benefits to patients. However, the looming question of how patients, taxpayers, and our health care system will pay for these treatments still remains to be answered. On Tuesday, the FDA advisory committee reviewed Exa-cel — a treatment using gene-editing tool CRISPR — which could become the first gene therapy for sickle cell disease if approved next month. Sickle cell disease affects 100,000 people in the U.S., and disproportionately impacts people who are Black or Brown. This cutting-edge, one-time treatment could save patients living with sickle cell disease from a lifetime of severe illness — but it’s expected multi-million dollar price tag will put this treatment out of reach for those who need it the most. “I’m worried that this will be a very highly lauded technology that people will not be able to use,” said Melissa Clearly, an assistant professor at the University of Michigan School of Public Health who studies sickle cell. In an op-ed for STAT News, Dr. Vivian G. Cheung wrote that “without targeted investment in medical infrastructure, these innovations will remain inaccessible to many.” Drugs don’t work if people can’t afford them. — (NBC, WPR, STAT)
