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)
On Friday, the Food and Drug Administration cleared the way for Florida to become the first state in the country to import prescription drugs from Canada. The following statement was issued by Merith Basey, executive director of Patients For Affordable Drugs Now in response to the decision:
“The FDA’s approval today of Florida’s plan to import cheaper prescription drugs is yet another reflection of the fact that drug prices in the U.S. are simply too high and Americans need relief. Unfortunately, state-by-state importation from Canada is not a workable solution for all of us who need lower prices. Canada can’t supply all our drug needs and the pharmaceutical industry won’t ship Canada enough drugs to turn around and send them to the U.S. The Canadian government is not going to send drugs to the U.S. if it creates shortages in Canada. We need workable federal solutions that will lower prices for everyone in the U.S. like expanded Medicare negotiation and reforms to stop drug company abuse of our patent system that blocks competition and keeps prices high for all of us. The Inflation Reduction Act was a historic start but there is more work to do. There are bipartisan bills in Congress right now that would move us forward and enjoy overwhelming public support.”
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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!
My name is Grace Shults, I am 23 years old, and I am from Columbus, Ohio.
My story with high prescription drug costs started when I was just a teenager in high school. I had gotten really sick all of sudden and went undiagnosed for years, which only until later revealed I had Lyme disease – I was puking all the time and easily got sick – It wasn’t until recently that I was also diagnosed with gastroparesis, a disorder that slows or stops the movement of food from your stomach to your small intestine. Because of these health issues, I’ve had to take antibiotics and a drug called Motegrity, which after partial insurance coverage, has been an issue to afford.
I grew up in a single parent household, where my personal health issues were essentially the big elephant in the room while my mother constantly scrambled financially. Though I thankfully was covered under my father’s health insurance plan and still am today, having ongoing medical issues was a financial burden that has caused undue stress for years.
Personally, the combination of Lyme disease, gastroparesis, and the other health issues it has created for me does not make life any easier. Because of my symptoms, there were times I was not eating or simply could not get myself to eat because of the pain I would later undergo. After trialing a couple of medications, I successfully landed on Motegrity, which has a list price of $505.40, which has provided consistent relief thus far at a cost of $165 per month out-of-pocket. Along with my other medications that I need, I pay on average $250 a month and try to get as many free samples from my doctors that I can. I consider myself disabled because of my health condition, am currently in school studying psychology and work remotely part time, which makes affording my medications a lot harder than most would think.
Socially, my life has also been impacted by the interconnection of my health and the medications I can afford. To put it simply, my social life is contingent on my health. I feel as if I do not have as many friends anymore while it is difficult to maintain a good social life while experiencing the many debilitating symptoms I confront on a regular basis. I am 23 years old and I should not feel alone in this way.
When faced with the question of why I believe in more affordable drugs, my answer is straightforward. I care because people need these medications to function. Affordable healthcare is not a privilege, it is a basic human right. We, the people, are not asking for crazy ludicrous things from society, we simply are asking for affordable medications to function in our society and live comfortable lives. I have seen family members before me struggle with affording their medications and now join them in this hurdle; it should not be this way at all. If Big Pharma made prescription drugs more affordable, they would still be profiting billions of dollars, all the while people would die and their health would decline.
Whenever I would imagine my future life, I never thought public health was for me, but my story has motivated me to pursue a career in this field. It is time for lower prescription drug prices.
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!
Patients Thank Senator Schumer For Leading Historic Reforms To Lower Drug Prices And Push For Bills To Curb Anti-Competitive Practices And Boost Generic Competition
NEW YORK — Over 100 patients from New York who depend on essential, high-priced medications sent a letter to Senate Majority Leader Chuck Schumer thanking him for his work to lower drug prices and urging him to continue his efforts to make medicines more affordable by including legislation that would curb patent abuse and increase competition in a January health care package.
The letter to Senator Schumer endorses a package of bipartisan bills, which, having received committee approval, address the anti-competitive tactics employed by drug companies to delay the entry of generic competition necessary to reduce drug prices. These legislative reforms are anticipated to substantially decrease prices and out-of-pocket expenses for millions of patients and result in significant savings for taxpayers.
“We stand in support of the bipartisan bills aimed at curbing these anti-competitive practices,” the letter reads. “We know that you and Senators on both sides of the aisle have been working to advance these measures. It’s critical that we take action now to improve competition and address the loopholes exploited by Big Pharma. Doing so will lead to lower out-of-pocket costs for millions of people and substantial savings for taxpayers.’
The bills included are:
S. 142 to curb pay-for-delay deals in which brand name drug makers pay would-be generic and biosimilar competitors to keep them from bringing their products to market.
S. 150 to crack down on patent thickets and product-hopping, which are used to build a patent wall around existing brand name drugs and block lower-priced competition.
S. 148 and S. 1067 to stop drug company abuse of citizen petitions before the Food and Drug Administration (FDA) which drug companies use to delay generic and biosimilar market entry.
S. 775 to improve the ability of the FDA to disclose information generic companies need for speedy approval.
S. 79 to establish a task force between the U.S. Patent and Trademark Office and FDA in order to improve each agency’s patent-related activities.
“As your constituents in New York, we are committed to supporting your efforts to make progress on these critical bills,” the letter continues. “We laud your dedication to this cause and we are eager to see you build on the work you’ve already achieved to ensure these bipartisan bills are enacted to further lower prescription drug prices for patients nationwide.”
Read the full letter and list of signers here and below.
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Senator Chuck Schumer Majority Leader 322 Hart Senate Office Building Washington, DC 20510
Dear Senator Schumer,
As patients from New York who rely on expensive medications to treat our illnesses or conditions we are particularly impacted by the high price of prescription drugs. We are writing to express our gratitude for your tireless efforts in championing vital prescription drug reforms to make medications more accessible and affordable for all.
The Inflation Reduction Act was instrumental in securing historic reforms such as drug price negotiation under Medicare, an out-of-pocket cap in Medicare Part D, and inflation-based rebates for drugs in Medicare Part B and D. These initiatives will significantly alleviate the burden of high prescription drug costs for many of us in our community and millions across the country. The actions you’ve taken are positively impacting the lives of seniors, people with disabilities, and many others relying on Medicare for essential medications.
Despite all that progress, we recognize that you are well aware that more work is needed to ensure continued progress to combat exorbitant prescription drug prices. As you know, Big Pharma uses anti-competitive practices, like patent thickets, product hopping, and pay-for-delay arrangements, to hinder the entry of generic and biosimilar medications into the market, obstructing market competition that would reduce drug prices for patients across the country.
We stand in support of the bipartisan bills aimed at curbing these anti-competitive practices. We know that you and Senators on both sides of the aisle have been working to advance these measures. It’s critical that we take action now to improve competition and address the loopholes exploited by Big Pharma. Doing so will lead to lower out-of-pocket costs for millions of people and substantial savings for taxpayers.
As your constituents in New York, we are committed to supporting your efforts to make progress on these critical bills. We laud your dedication to this cause and we are eager to see you build on the work you’ve already achieved to ensure these bipartisan bills are enacted to further lower prescription drug prices for patients nationwide.
Thank you for your unwavering commitment to lower drug prices for all Americans. We stand with you and eagerly anticipate this package of crucial bills being brought to the floor so we can enhance competition for prescription drugs and reduce costs for patients.
Sincerely,
[Patient Signatures]
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Vote Sets Stage For Negotiation On Bipartisan Bills Promoting Competition Making Their Way Through The Senate
The following statement was issued by Merith Basey, executive director of Patients For Affordable Drugs Now, after the House of Representatives passed the “Lower Costs, More Transparency Act”:
“The House’s decisive bipartisan action tonight in passing the “Lower Costs, More Transparency Act” including measures to increase transparency and further tackle high drug prices by improving the generic drug approval process, is highly encouraging and moves the Congress in the right direction. This development boosts the momentum for the Senate leadership to move forward with a comprehensive health care package, encompassing 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 action helps to pave the way for a bipartisan end of year package that can lower prescription drug prices for everyone.”
