ICYMI, Senate Majority Leader Schumer sent a Dear Colleague letter indicating his intention to advance bipartisan bills to lower drug costs during the July work period. Then on Thursday, we launched the “Push For Competition To Lower Drug Prices,” calling on the Senate to immediately pass bipartisan drug price competition reforms. Here’s a recap:
Press Conference On The Hill 🎤
Senator Klobuchar, patients, AARP, Patients For Affordable Drugs Now (P4ADNow), and SPACEs in Action launched the “Push For Competition To Lower Drug Prices” with a pressconference on Capitol Hill. The event focused on the burden of high drug prices on patients and the need to pass legislation that cracks down on the drug industry’s anti-competitive practices. “Sky-high prices have kept prescription medications out of reach for far too many Americans. By passing legislation to address the anti-competitive tactics that big pharma uses to keep drug prices high, we will enable more competition and innovation in the pharmaceutical market and lower costs for patients,” said Senator Klobuchar, who has been a champion in the fight to lower drug prices. Jacqueline Garibay, 22-year-old student who lives with ankylosing spondylitis from Austin, Texas shared how Amgen has used shady actions to keep biologic drugs at high prices: “Big Pharma is abusing the system and taking advantage of patients by preventing competition for life-saving drugs to protect its bottom line – people like me have no choice but to pay whatever price the companies set,” she continued. “It’s time to put patients’ lives ahead of drug industry profits.”
Letter To The Senate From 35 Orgs 📝
The morning of the press conference, 35 organizations representing patients, consumers, seniors, churches, students, unions, and disease advocacy groups sent a letter to the Senate calling for passage of bipartisan bills that lower drug prices through increased competition. The letter, lead by P4ADNow and AARP, urges the Senate to pass reforms that crack down on the drug industry’s anti-competitive practices, such as “pay-for-delay” deals and product hopping, and close regulatory loopholes, like the abuse of the citizen petition process, to promote generic and biosimilar competition to lower drug prices for patients. The Senate has a real opportunity to advance reforms to “promote competition, accountability, and transparency that will lower drug prices for patients, payers, and taxpayers.” It’s time to get it done.
Advocacy Campaign Launched 🚀
As part of the kickoff, P4ADNow launched new digital ads and an advocacy hub all about promoting competition to lower drug prices. The advocacy hub includes a breakdown of the legislation, first hand stories of how Big Pharma’s abuses hurts patients, and tools to help advocates write letters urging their Senators to pass a package that includes bipartisan bills that promote generic and biosimilar competition to lower drug prices. Check out an example of a new digital ad running below:
BONUS: Speaking of Big Pharma patent abuse, did you see that John Green called out Johnson & Johnson for seeking secondary patents on tuberculosis drug bedaquiline to maintain its monopoly on the drug? This shady move denies millions of people access to the drug. Worth a watch (plus follow the conversation on #patientsoverpatents, which has been trending on Twitter)!
Have a great weekend!
Senators, Patients, AARP, P4ADNow, and SPACEs in Action Launch Push At Press Conference
WASHINGTON, D.C. — Senator Klobuchar, patients, AARP, Patients For Affordable Drugs Now (P4ADNow), and SPACEs in Action launched the “Push For Competition To Lower Drug Prices” with a press conference on Capitol Hill today. To kick off the push, 35 organizations representing patients, consumers, seniors, churches, students, unions and disease advocacy groups sent a letter to the Senate calling for immediate passage of bipartisan bills that crack down on the drug industry’s anti-competitive practices and close regulatory loopholes to promote generic and biosimilar competition to lower drug prices for patients.
“Right now, drug companies abuse our system through anti-competitive practices that extend monopolies beyond the time intended under law, leaving patients in this country paying more than three times what other wealthy nations pay for the exact same brand name drugs,” said David Mitchell, a patient with incurable blood cancer whose drugs carry a list price of more than $900,000 per year and founder of Patients For Affordable Drugs Now. “The Senate has the chance to pass a package of bipartisan bills that will reform and improve our patent and regulatory systems to encourage earlier market entry of more affordable generics and biosimilars. These are common sense, bipartisan solutions that will deliver real relief to patients through lower drug prices. We urge the Senate to act now.”
As part of the kickoff, today P4ADNow also launched new digital ads and an advocacy hub for people to urge their Senators to pass a package that includes bipartisan bills that promote generic and biosimilar competition to lower drug prices.
This press conference took place following Majority Leader Schumer’s Dear Colleague letter indicating his intention to advance bipartisan bills to lower drug costs during the July work period. The package includes reforms voted out of the Senate HELP, Judiciary, and Commerce Committees on a strong bipartisan basis earlier this year.
The following are quotes from the speakers at today’s press conference:
“Sky-high prices have kept prescription medications out of reach for far too many Americans. By passing legislation to address the anti-competitive tactics that big pharma uses to keep drug prices high, we will enable more competition and innovation in the pharmaceutical market and lower costs for patients,” said Senator Klobuchar. “I’ll keep working to ensure all Americans can get the life-saving medications they need at prices they can afford.”
“Americans can’t afford to pay more than 3 times what people in other countries pay for the same medicine,” said Nancy LeaMond, AARP Executive Vice President and Chief Advocacy and Engagement Officer. “Generic drugs have proven to be one of the safest and most effective ways to ensure that millions of older Americans can afford the prescription drugs they need. Now is the time for Congress to increase competition and help lower drug prices.”
“Lowering drug prices will increase the quality of life for many people like me across this country. We are urgently calling on the Senate to immediately advance and pass the bipartisan bills to lower drug prices.” – Arthur Blair, Board Member, SPACES in Action
“Big Pharma is abusing the system and taking advantage of patients by preventing competition for life-saving drugs to protect its bottom line – people like me have no choice but to pay whatever price the companies set…It’s time to put patients’ lives ahead of drug industry profits.” – Jacqueline Garibay, 22-year-old ankylosing spondylitis patient from Austin, TX
A recording of the event can be viewed here, and photos are available upon request.
1. Celebrating Reforms: The Out-Of-Pocket Cap And Insulin Copay Cap
More good news on how the drug price reforms in the Inflation Reduction Act are helping and will continue to help patients. Yesterday, the Department of Health and Human Services (HHS) released data showing that nearly 19 million people on Medicare Part D will save, on average, $400 per year when the $2,000 out-of-pocket spending cap takes effect in 2025. At a roundtable earlier this week, HHS Secretary Xavier Becerra celebrated the historic drug price legislation and vowed to continue to advocate for strong implementation of the Inflation Reduction Act because “no American should ever have to choose between paying rent or for prescriptions.” Indiana State Rep. Earl Harris Jr. highlighted the benefit of the monthly insulin copay cap in a town hall, stating that “some 81,000 Hoosiers who get their insulin through Medicare will see lower costs due to the act’s $35 monthly cap on the drug.” Congressman Dan Kildee celebrated the recent expansion of the monthly insulin copay cap for people on Medicare Part B that went into effect this month, saying that “No senior should have to pay hundreds of dollars for medicine that costs big pharmaceutical companies just a few dollars to make.” We’re delighted that the drug price reforms deliver long-awaited relief to patients, and glad government officials are spreading the word. — (HHS, Spectrum News 12, Chicago Tribune, WNEM)
2. More Evidence For Increasing Competition
Momentum is growing to stop drug corporations from abusing patent and regulatory processes to prolong their monopolies on prescription drugs. In an op-ed, Senator Bill Cassidy described how drug corporations take advantage of loopholes and “game the regulatory system to delay competition and preserve their ability to charge higher prices.” His piece pointed to reforms that address tactics to delay competition, such as “ending the abuse of the citizen petition process.” In a recent interview, the Initiative for Medicines, Access, And Knowledge (I-MAK) called out AbbVie for the drug company’s extensive patent thickets for its blockbuster drug Humira as a prime example of abuse of the patent system to protect unfettered pricing power. After years of market exclusivity fueled by patent thickets, Humira finally has competition, with seven biosimilars coming to market at lower prices in the last week. Competition that can lower drug prices is an essential step to restoring fairness to the system. Congress, over to you to pass reforms that close loopholes in our regulatory system so generics and biosimilars can come to market sooner. — (STAT, Life Science Leader, Managed Healthcare Executive, Axios)
3. Arriving At A Fair Price For New Treatments
New innovative therapies and treatments are arriving to market — the question of how to price them fairly remains. A new study published this week in The BMJ found that less than half of new approved drugs in the U.S. and Europe offer improved clinical value over existing treatments. Authors of the study noted that when new treatments don’t offer added therapeutic value, that information should be “reflected in the price of the drugs.” Spot on! We need a comparative value analysis tool in the United States to arrive at fair prices for prescription drugs — otherwise, patients may be paying more for drugs that offer less clinical benefit. In the case of groundbreaking gene therapies coming to market, patients and taxpayers are facing exorbitantly high prices despite massive public funding in research and development (R&D). Fyodor Urnov, a genetics professor at UC Berkeley, told The Washington Post that his team regularly receives emails from parents of patients with rare genetic disease who “desperately need treatment but can’t afford it.” He continued to comment that “We haven’t really built a system that spreads the public health joy equitably.” Drugs don’t work if people can’t afford them. — (The BMJ, Endpoints, The Washington Post)
Have a great weekend!
Stay cool over the sweltering-hot holiday weekend! The forecast? High temps and lower drug prices. ☀️
Welcome to the Week in Review.
1. The Inflation Reduction Act: Cost Savings Continue
Three new additional policies that will benefit patients are taking effect under the Inflation Reduction Act. First, all insulin covered under Medicare now has a $35 monthly copay cap starting July 1. Second, additional people will qualify for extra savings on Medicare Part D costs through Medicare’s Extra Help Program. And third, recommended vaccines will be available at zero cost for people with Medicaid or CHIP prescription drug coverage starting October 1st. These new changes will deliver relief to patients in addition to the rest of the provisions in the new drug price law. Out-of-pocket drug spending for people on Medicare is expected to decline thanks to the $2,000 cap on out-of-pocket costs that takes effect in 2025, and in 2026 patients on negotiated drugs could see significant savings, according to a report by Centers for Medicare & Medicaid Services (CMS). Senator Debbie Stabenow emphasized the positive impact of Medicare negotiation with constituents in Michigan: “The US pays the highest in the world for prescriptions.” She continued, “reducing those costs can happen through negotiation, and the passage of The Inflation Reduction Act gave Medicare the power to negotiate prescription drug prices.” Josh Hishta of AARP wrote that Medicare negotiation is long “overdue” — adding that “big drug companies have been exploiting Americans through excessive drug pricing for years.” The new drug price law will rein in excessive drug prices that patients have been forced to pay and hold drug corporations accountable for their behavior. — (P4ADNOW, AARP, Oakland County Times, Daily Gate City)
2. Competition Means Savings
Generic and biosimilar competition can provide real relief for patients burdened with high drug prices. A new study published in Health Affairs found that the entry of biosimilar competition for anticancer medication Herceptin steadily lowered the price of both brand-name Herceptin and its five biosimilar competitors. The study’s authors found the average price of biosimilar competitors for Herceptin were 28 to 58 percent of the cost of brand-name Herceptin. Remarkable — this is even more evidence that competition is essential to lowering drug prices for patients. This is why we’re pushing for reforms that fix our rigged regulatory system so that competition can come to market sooner. — (Pharmacy Times)
3. Patients Need Access to Innovative Medicines
Scientific breakthroughs and innovation in medicines are advancing new treatments for patients. However, there is serious concern that the high price tags attached to these medications will put them out of reach for patients and make them unaffordable to the health care system. Many of these new treatments — like mRNA vaccines and CRISPR gene therapy — were propelled by years of taxpayer-funded research. “It will only be a golden age when research that is publicly funded is actually serving the public,” wrote Tahir Ahmin, executive director of the Initiative for Medicines, Access, and Knowledge (I-MAK). We agree, and are committed to stopping drug corporations from setting unjustified drug prices — especially when one in four Americans struggles with affording prescription drug costs. The latest example of new, high-priced treatments: A gene therapy used to treat patients living with hemophilia A, a rare, inherited bleeding disorder, was approved this week and carries a shocking list price of $2.9 million per treatment. We urgently need to find a way to address high launch prices for drugs coming to market and stop drug corporations from hiking the prices of older drugs. — (The New York Times, ABC)
BONUS READ: Protect Our Care’s new report sheds light on the big drug corporations that systematically game the patent system and spend millions on lobbying to protect their unfettered pricing power. Read more about why Medicare needs the power to negotiate lower drug prices here!
Have a great weekend!
Heard, chef! It’s thyme to lower drug prices for all people.
Welcome to the Week in Review.
1. Lawsuits Over Medicare Negotiation Program Trickle In
More evidence again this week that Big Pharma will stop at nothing to keep drug prices high for patients. Four long-expected lawsuits have been filed across the country in an effort to stop the implementation of Medicare’s new drug price negotiation program. Following the lawsuits filed by Merck and the U.S. Chamber of Commerce earlier this month, drug corporation Bristol Myers Squibb (BMS) and drug industry group PhRMA, alongside two other groups with ties to pharma, also filed suit against the federal government. BMS and Merck’s lawsuits share an allegation that the law violates the First and Fifth Amendments, even going as far as saying the program is “extortion.” But we see through the spin: Corporations like BMS and Merck have been extorting patients with unjustified drug prices for decades and, finally, negotiation addresses its unbalanced power! PhRMA and the Chamber’s suits mirror the others — with the addition of an unfounded claim that drug companies have no say in the process. In fact, the Centers for Medicare & Medicaid Services (CMS) is voluntarily soliciting comments from corporations throughout implementation, it is drug corporations who forced excessive prices that led to patients suffering due to lack of access, and only a narrow amount of drugs are subject to negotiation. Despite legal efforts to stall Medicare negotiation, drug corporations are no match against the power of patient advocacy. The drug price reforms are here to stay. (Fierce Pharma, The Washington Post, Axios, CNBC)
2. Zeroing In On PBM Reform
Pharmacy Benefit Manager (PBM) reform still remains top of mind on Capitol Hill. Senator Chuck Grassley spoke to STAT about the urgency of reforming the middlemen’s practices: “We’ve got to pass legislation. We can’t put up anymore with … middle people, between the companies and the consumer, without knowing what they’re doing, particularly when they’re raking in a lot of taxpayer money.” We agree! A year-long STAT investigation dove deep into the industry and shed light on the secret deals, fees, and kickbacks orchestrated by PBMs who are supposed to be operating in the best interests of patients. The report established that a number of major consulting firms, who are hired by employers to handle and advise on prescription drug coverage, also benefit by collecting fees from large PBMs for each prescription. STAT writes that these firms “often are getting paid more — a lot more — by the PBMs and health insurance carriers that they are supposed to scrutinize than by companies they are supposed to be looking out for.” Who pays the price for these expensive and opaque arrangements? Employees. As both chambers of Congress and the Federal Trade Commission zero in on the shady practices of PBMs, it’s clear that the time is ripe to peel back the curtain. (STAT, STAT)
3. Debunking Drug Industry Lies
Big Pharma doublespeak is rife this week. Eli Lilly announced a $2.4 billion purchase of biotech company DICE Therapeutics which has a small molecule inhibitor in Phase II trials. Yet it was only last week that Lilly’s CEO David Ricks touted a lie that the new drug price law is harming investment into small molecule drugs. It’s evident that drug corporations are not slowing down their investments, despite the fear tactics deployed from industry executives. In fact, Flagship Pioneering — the firm behind Moderna and Laronde — gave $50 million to a new startup “focused solely on small-molecule drugs.” While we constantly hear the refrain about the Inflation Reduction Act “harming” innovation, we know the truth: Big Pharma is dishing out lies to distract us from the enormous profits that they bring in at the expense of patients. (Endpoints, STAT, Arizona Daily Star)
4. Innovation Is Worthless If Patients Can’t Afford It
While cell and gene therapies may soon be able to cure some of the world’s most complex diseases, it is imperative that these new treatments are affordable for patients. First up: sickle cell gene therapy. Bluebird bio is racing to get approval for its one-time gene therapy for sickle cell disease, which is expected to be priced at between $2 million and $3 million per patient. Second: cystic fibrosis treatment. A new analysis showed that the price of cystic fibrosis treatment Trikafta, currently listed at $311,741 per year, is much higher than the value it delivers. “It is essential for therapies to be priced based on value,” echoed the team of scientists that led the study, noting that the high costs of therapies “are straining health care affordability” for patients. And lastly: the world’s most expensive drug. Hemgenix, a single-use gene therapy priced at $3.5 million per dose, was administered to a patient living with hemophilia B for the first time this week. Innovation is worthless if patients can’t afford it — that’s why we need to urgently address high launch prices for new life-changing drugs coming to market. — (Biopharma Dive, Cystic Fibrosis News Today, Pharmaceutical Technology)
Have a great weekend!
Let’s hear it for the underdog! If the Denver Nuggets can bring home their first NBA championship, patients can continue taking on Big Pharma to win lower drug prices for all patients. 🏀💊
Welcome to the Week in Review.
1. 🚨 New P4AD Cancer Drug Price Report 📰
This week, P4AD released a new report that highlights the burden of cancer drug prices on patients and details the positive impact of the Inflation Reduction Act that will bring relief to people living with cancer. “Cancer patients — the majority of whom are on Medicare — can face annual out-of-pocket costs of more than $16,500,” said P4AD’s David Mitchell. In partnership with NORC at the University of Chicago, P4ADexamined the impact of the $2,000 out-of-pocket cap, a provision in the drug price law that takes effect in 2025, and found that people with Medicare who get a brand-name cancer drug through Medicare Part D will save an average of $7,590 annually, with some saving as much as $19,296. This will make a huge difference for patients like Lynn Scarfuto, who takes oral chemotherapy drug Imbruvica to treat her leukemia. Imbruvica carries a monthly list price of over $17,000. “Thanks to the Inflation Reduction Act, cancer patients with traditional Medicare coverage will spend less on the prescription drugs they need,” said Dr. Danielle Carnival, Deputy Assistant to the President for the Cancer Moonshot program. “This report makes clear that as additional provisions get implemented – including the cap on annual out-of-pocket costs for prescription drugs – the President’s Investing in America agenda will give Americans with cancer much needed breathing room and peace of mind.” — (P4AD, The White House)
2. More Momentum For The Inflation Reduction Act
The Biden Administration and Members of Congress are taking steps to further extend the Inflation Reduction Act’s drug price reforms to lower prices for more patients. Last week, the administration announced 43 drugs with prices rising faster than the rate of inflation that may be subject to penalties under the Inflation Reduction Act. That’s no small feat! This would save money for both patients and taxpayers. This week, the administration released new tools to increase enrollment in Medicare’s Extra Help Program, the subsidy that helps low-income people on Medicare pay for prescription drugs. Taking effect in January 2024, these new efforts come in addition to the expansion of the Extra Help program, which was included in the historic drug price law, and will make more people eligible for the subsidy. On Capitol Hill, Representatives Ruben Gallego and Elissa Slotkin introduced the Lower Drug Costs for Families Act, which would build on the drug price law by extending the inflationary rebate penalty to protect patients with private insurance. Bravo! Thank you to these lawmakers for fighting for further reforms to reign in high drug prices. — (HHS, HHS, Office of Rep. Ruben Gallego, The Gander)
3. Bipartisan Movement In Senate Finance To Crack Down on PBMs
Senate Finance Committee Senators Wyden, Crapo, Menendez, Blackburn, Tester, and Marshall introduced bipartisan legislation this week: the Patients Before Middlemen Act would reform Pharmacy Benefit Managers’ (PBMs) practices by delinking the compensation to PBMs from the price of a drug. Democratic Chairman Ron Wyden explained that currently, PBMs often favor higher-priced drugs in their negotiations, which means “seniors are forced to pay more for their prescriptions.” Republican Ranking Member Mike Crapo laid out how the new bill would promote cost-savings for patients: “Delinking PBM compensation from sticker prices would take a critical first step in ensuring that all supply chain participants seek out the best deals available, driving down out-of-pocket spending and promoting cost-cutting competition.” This introduction proves that the committee is taking steps to deliver on its bipartisan legislative framework to address PBM tactics that drive up costs for patients and taxpayers. “It would be a real game changer,” P4AD’s David Mitchell tweeted. “No more would PBMs be paid based on the price of a drug in Medicare, but rather a service fee.” It’s exciting to see Senators from across the political spectrum aligned in this effort — let’s pass reforms to crack down on the middlemen’s secretive practices and advance reforms that protect patients! — (Senate Finance Committee)
BONUS WATCH: P4AD’s Merith Basey joined RJ Eskow on “The Zero Hour” to call out the bogus Merck lawsuit over Medicare negotiation and explain the impact of the drug price reforms in the Inflation Reduction Act. Check out the full interview here!
Have a great weekend!
Happy Pride Month!
Welcome To The Week In Review.
1. Drug Prices Are Too High And Patients Pay The Price
The Centers for Disease Control and Prevention (CDC) released a new report yesterday that shows millions of adults in the United States are not taking their medications as prescribed because of high costs. The data reveals that in 2021, about 9.2 million people “tried to save money by skipping doses, taking less than prescribed or delaying a prescription fill.” Women were more likely than men to “skip, delay or take less medication than was prescribed because of cost,” and people with disabilities were about “three times more likely than those without disabilities to ration their medications, as were people with fair or poor health compared with those with good health.” Not taking medicines can “make health conditions worse, result in more serious illness and lead to additional expensive treatment,” said Eric Tichy, a pharmacist and division chair of pharmacy supply solutions at the Mayo Clinic. And in some cases, it can have life-threatening consequences. We won’t stop fighting until reforms to our drug price system extend to everyone, especially those most historically disenfranchised. — (CNN, NBC)
2. The Truth About The Inflation Reduction Act
Big Pharma dished out more lies this week about the Inflation Reduction Act’s effect on exclusivity periods for small molecule (9 years) versus biologic drugs (13 years). John Barkett, former Biden administration senior policy adviser, set the record straight: “today you get five years of exclusivity for a small molecule drug and 12 years of exclusivity for a biologic. Arguably, those exclusivities have a bigger impact on potential profits than when negotiation occurs,” Barkett told Politico. “I can’t recall ever hearing these arguments made about exclusivities in the past.” ZING! The Inflation Reduction Act actually contains more protections for small-molecule medicines because it narrows the difference in years of exemption from Medicare negotiation between biologics and small molecules to four years. Bottom line: the Inflation Reduction Act helps patients. A recent study in JAMA estimated that over 125,000 people on Medicare Part D would have paid lower out-of-pocket costs for “ultra-expensive” medications if the $2,000 cap on out-of-pocket costs had been in effect in 2019. Thanks to the Inflation Reduction Act, many patients on Medicare will feel relief when the new cap takes effect in 2025. — (Politico, Fierce Pharma)
3. The Looming Question Of Paying For Cell And Gene Therapies
We’re on the brink of new, remarkable cell and gene therapies coming to market – but the question of how individuals and our healthcare system will pay for them remains top of mind. “Paying millions of dollars for one therapy is daunting for payers and has caused a lot of discussion in the sector about how best to address the issue,” explained Inside Precision Medicine. A new gene therapy for sickle cell disease – which affects about 100,000 people in the U.S. and disproportionately impacts African Americans — is a prime example, as the new cure on the horizon will likely be priced at $2 million to $3.5 million. “Because sickle cell disease disproportionately affects minority people… and because it has such an impact on quality of life and productivity, it tends to make people fall into a lower socioeconomic range,” said Dr. Lewis Hsu, chief medical officer of the Sickle Cell Disease Association of America. A new study from Yale echoed similar concerns: “Sickle cell disease is a prototypical rare disease that … historically [impacts a] marginalized patient population.” George Goshua, MD, MSc, assistant professor of medicine remarked. The cure “could be a ‘loss’ on equity when it further separates health outcomes in the poorest versus wealthiest patients.” We need to reform our system to address high prices for cell and gene therapies in order to maximize public health and equity. All patients deserve access to life-saving medication. — (Inside Precision Medicine, KDH News, Yale School of Medicine)
BONUS: William Feldman and Aaron Kesselheim’s new Washington Post op-ed shines light on yet another way drug companies abuse our patent system to protect lucrative monopolies at the cost of patient health and financial well-being. Worth a read!
Have a great weekend!
The 20 highest-paid drug industry CEOs each made $20 million or more last year. That’s enough to buy about 28,000 Taylor Swift tickets or 57,000 Beyonce tickets. Drug pricing sure is ready for its Renaissance Era.
Welcome To The Week In Review.
1. PBM Reforms Are In The House
Bipartisan support is growing in the House for reforms related to the practices of Pharmacy Benefits Managers (PBMs). On Tuesday, the House Oversight Committee continued its investigation into PBMs with a hearing that examined the middlemen’s tactics that drive up costs for patients. Both sides of the aisle participated in lively dialogue. Republican Chairman James Comer’s opening remarks summarized the problem with PBMs’ opaque practices: “PBMs engage in self-benefitting practices that boost their bottom line without a benefit to patients.” Democrat Rep. Alexandria Ocasio-Cortez skillfully explained how the profit-motivated practices of PBMs (who collect undisclosed rebates) is “focused on who’s making how much money, instead of what people are getting the treatment that they need.” Exactly! We need increased transparency with regard to the practices of PBMs to be sure they are serving patients, not just their bottom line. The House Energy and Commerce Committee held a markup on Wednesday that advanced a package that includesbills to address PBM transparency requirements and accountability. We applaud representatives for shining a light on the middlemen’s practices and advocating for patients! — (Endpoints, House Oversight Committee, P4ADNow, Axios)
2. “A Price That Is Simply Too High”
Gene therapies – truly groundbreaking treatments that could treat and possibly cure some of the globe’s most challenging conditions – carry outrageous price tags that raise major concerns about how patients and taxpayers will be able to pay for them. FiercePharma compiled a special report this week that lists the top ten most expensive drugs in the U.S. in 2023. Many of the drugs are gene therapies – and the numbers are shocking. Hemgenix, a one-time hemophilia B treatment, ranks as the most expensive drug in the world with a whopping $3.5 million price tag. Luxturna, a rare-disease treatment for vision loss, arrived on the market at $850,000 in 2018 and still continues to be one of the most expensive treatments today. “Our system cannot handle unjustified prices like this, and the new payment models announced today are merely a way to disguise a price that is simply too high,” shared P4AD’s David Mitchell in regards to the price of Luxturna. Krystal Biotech’s Vijuvek is the first approved gene therapy to treat rare skin disease – but it comes with a price tag of $500,000 per year. Who can afford that? New innovation is worthless unless patients can afford it. — (FiercePharma, CBS News)
3. The Inflation Reduction Act: More Relief Is On The Horizon
While millions of patients are already getting much needed relief from the new drug price law provisions that went into place at the beginning of the year, members of Congress are spreading the word about even more patients who will also see savings from the soon-to-be implemented provisions. At a House Oversight Committee hearing, Rep. Melanie Stansbury explained how Medicare negotiation will deliver much needed savings to her constituents in New Mexico when the provision is implemented in 2026. Stansbury added that this momentum is significant for “our parents, or grandparents, or children, people who are unable to actually access lifesaving care medications, because number one, they cannot afford it.” Rep. Terri Sewell joined Centers for Medicare & Medicaid Services (CMS) Administrator Chiquita Brooks-LaSure at a fireside chat on health care access where they discussed the impact of the new drug price law: “We had a great conversation about the work of Congress and the Biden-Harris Administration to expand health care access and lower prescription drug prices for Alabamians.” It’s clear that the new law will provide relief to patients who have been forced to pay exorbitant drug prices at the mercy of drug companies. (Los Alamos Daily Post, Alabama Today)
BONUS: Advocates are fighting back against high drug prices at the state level as well. In Colorado, patients like Kris Garcia have been pivotal in the passage of Prescription Drug Affordability Boards (PDABs). Read more about the state’s implementation of its new PDAB here!
Happy Memorial Day! Hope everyone enjoys the three-day weekend! ☀️??
