SUBSCRIBE TO OUR FREE NEWSLETTER
Daily news & progressive opinion—funded by the people, not the corporations—delivered straight to your inbox.
5
#000000
#FFFFFF
To donate by check, phone, or other method, see our More Ways to Give page.
Daily news & progressive opinion—funded by the people, not the corporations—delivered straight to your inbox.
The provision, part of the Senate budget bill, was described as "a blatant giveaway to the pharmaceutical industry that would keep drug prices high for patients while draining $5 billion in taxpayer dollars."
The deep-pocketed and powerful pharmaceutical industry notched a significant victory on Monday when the Senate parliamentarian ruled that a bill described by critics as a handout to drug corporations can be included in the Republican reconciliation package, which could become law as soon as this week.
The legislation, titled the Optimizing Research Progress Hope and New (ORPHAN) Cures Act, would exempt drugs that treat more than one rare disease from Medicare's drug-price negotiation program, allowing pharmaceutical companies to charge exorbitant prices for life-saving medications in a purported effort to encourage innovation. (Medications developed to treat rare diseases are known as "orphan drugs.")
The consumer advocacy group Public Citizen observed that if the legislation were already in effect, Medicare "would have been barred from negotiating lower prices for important treatments like cancer drugs Imbruvica, Calquence, and Pomalyst."
Among the bill's leading supporters is Sen. Martin Heinrich (D-N.M.), whose spokesperson announced the parliamentarian's decision to allow the measure in the reconciliation package after previously advising that it be excluded. Heinrich is listed as the legislation's only co-sponsor in the Senate, alongside lead sponsor Sen. John Barrasso (R-Wyo.).
"Sen. Heinrich should be ashamed of prioritizing drug corporation profits over lower medicine prices for seniors and people with disabilities," Steve Knievel, access to medicines advocate at Public Citizen, said in a statement Monday. "Patients and consumers breathed a sigh of relief when the Senate parliamentarian stripped the proposal from Republicans' Big Ugly Betrayal, so it comes as a gut punch to hear that Sen. Heinrich welcomed the reversal and continued to champion a proposal that will transfer billions from taxpayers to Big Pharma."
"People across the country are demanding lower drug prices and for Medicare drug price negotiations to be expanded, not restricted," Knievel added. "Sen. Heinrich should apologize to his constituents and start listening to them instead of drug corporation lobbyists."
The Biotechnology Innovation Organization, a lobbying group whose members include pharmaceutical companies, has publicly endorsed and promoted the legislation, urging lawmakers to pass it "as soon as possible."
"This is a blatant giveaway to the pharmaceutical industry that would keep drug prices high for patients."
The nonpartisan Congressional Budget Office has estimated that the ORPHAN Cures Act would cost U.S. taxpayers around $5 billion over the next decade.
Merith Basey, executive director of Patients For Affordable Drugs Now, said that "patients are infuriated to see the Senate cave to Big Pharma by reviving the ORPHAN Cures Act at the eleventh hour."
"This is a blatant giveaway to the pharmaceutical industry that would keep drug prices high for patients while draining $5 billion in taxpayer dollars," said Basey. "We call on lawmakers to remove this unnecessary provision immediately and stand with an overwhelming majority of Americans who want the Medicare Negotiation program to go further. Medicare negotiation will deliver huge savings for seniors and taxpayers; this bill would undermine that progress."
"This moment calls for bold public funding, strong private sector leadership, and a shared commitment to making HIV prevention accessible, affordable, and a cornerstone of our national response," said one campaigner.
While joining Gilead Sciences in welcoming the U.S. Food and Drug Administration's Wednesday approval of a six-month shot that CEO Daniel O'Day said "offers a very real opportunity to help end the HIV epidemic," public health advocates this week have expressed concern that Big Pharma greed could impede access to lenacapavir.
Gilead announced that the FDA has approved lenacapavir—which will be sold under the brand name Yeztugo—as pre-exposure prophylaxis (PrEP) to reduce the risk of sexually acquired HIV in adults and adolescents weighing at least 77 lbs., "making it the first and only twice-yearly option available in the United States for people who need or want PrEP."
Responding in a statement, Save HIV Funding campaign manager Maxx Boykin said that "the FDA's approval of lenacapavir for HIV prevention has the potential to be a pivotal moment for the broader fight to end HIV. It's a reminder that prevention must be a national priority, backed by serious investment and political will."
"Ending the epidemic requires equal focus on prevention and treatment, delivered through equitable, community-driven systems," Boykin continued. "This moment calls for bold public funding, strong private sector leadership, and a shared commitment to making HIV prevention accessible, affordable, and a cornerstone of our national response."
"If lenacapavir has any chance of becoming a viable choice for people who could benefit from PrEP, the price will have to be low enough that safety net providers can afford to procure it."
The Save HIV Funding campaign was launched in 2023 by multiple groups, including PrEP4All, to fight proposed cuts to federal funds. PrEP4All senior policy consultant Amy Killelea and executive director Jeremiah Johnson wrote Tuesday at Health Affairs that "lenacapavir's PrEP approval comes four years after the first long-acting injectable product for PrEP—a once-every-two-month injection made by ViiV and sold under the brand name Apretude—hit the market. Despite a lot of fanfare about its ability to change the HIV prevention landscape, Apretude sales have been fairly anemic since its launch."
"This likely reflects the many barriers to PrEP access, including provider willingness to prescribe PrEP, individual awareness about HIV risk, and complicated procurement and financing considerations for provider-administered products," they explained. "Whether the fact that lenacapavir requires far fewer provider visits than Apretude will make it a better option for people remains to be seen. But regardless of whether lenacapavir truly disrupts the PrEP landscape, it provides another important tool in the HIV prevention toolbox and an option that could help anyone who might struggle with adherence to a daily pill regimen."
The FDA approval comes as congressional Republicans push a budget reconciliation package that would deprive millions of Americans of health insurance, and "given the anticipated high price tag of lenacapavir, any coverage losses could impede access," Killelea and Johnson warned. "The launch of lenacapavir also comes amidst an intentional hollowing out of governmental public health programs by the Trump administration."
"Gilead's charitable assistance programs cannot alone ensure that PrEP is available and accessible to the people who need it most," they stressed. "If lenacapavir has any chance of becoming a viable choice for people who could benefit from PrEP, the price will have to be low enough that safety net providers can afford to procure it. This is particularly true for provider-administered products, which are often covered as a medical benefit."
Given the challenging last few months, this is a bright spot - the approval of lenacapavir twice yearly to prevent HIV. Unlike past PrEP meds, it was found t be 100% protective in cisgender women.But it will only work if gets to people, especially those communities that need it most.
[image or embed]
— Oni Blackstock, MD MHS (@oniblackstock.bsky.social) June 18, 2025 at 3:54 PM
The Guardian reported Tuesday that Gilead "has not yet made the price of the drug public, but it has been estimated... that it is likely to be on par with current preventive medications at about $25,000... a year. As a treatment for people already living with HIV, it costs about $39,000 annually."
However, the "HIV-ending" injection could "be made for only $25... a year—including a 30% profit margin," the newspaper noted, citing an analysis from the University of Liverpool and others. The researchers found that "lenacapavir could be mass produced for $35 to $46 a year, if there was annual demand for 2 million doses, falling to $25 at scaled-up production of 5 million to 10 million doses each year."
The watchdog Public Citizen also highlighted that study in a Wednesday statement:
The closest drug to an HIV vaccine, lenacapavir has shown 99% efficacy in preventing HIV infection, but its manufacturer, Gilead, is overcharging for the drug and gripping tightly to its patents in certain countries.
Patented in many Latin American countries, lenacapavir as an HIV treatment is priced at more than $40,000 (U.S. dollars) per year, but experts estimate lenacapavir's production (plus a margin for profit) could price the drug as low as $25 with process improvements and an increase in demand...
Public Citizen has been working with 100 health groups across Latin America to overcome the patent barrier, issuing multiple compulsory license requests and calling on governments to take action to make long-acting PrEP more accessible.
Public Citizen Access to Medicines Director Peter Maybarduk said that "the world has an historic opportunity to end AIDS," a condition caused by HIV, but "that requires confronting the triple threat of funding cuts, stigma, and pharma power."
Reporting on the FDA approval Wednesday, The Associated Press pointed out that "global efforts at ending the HIV pandemic by 2030 have stalled. There still are more than 30,000 new infections in the U.S. each year and about 1.3 million worldwide."
"When your board is stacked with industry insiders, your primary funding comes from pharma, and your talking points mirror those of drug lobbyists, you're not a patient advocacy organization—you're a PR operation."
A report published Monday reveals that a number of organizations claiming to represent the interests of patients are actually pharmaceutical industry front groups working against efforts to bring down drug costs in the United States, including by lobbying the Trump administration to scale back Medicare price negotiations.
The new analysis by Patients for Affordable Drugs Now (P4AD), which stressed that it doesn't take money from organizations that profit from the production or distribution of prescription medications, spotlights six groups: the Alliance for Aging Research, the American Action Forum, the Center for Medicine in the Public Interest, the Council for Affordable Health Coverage, the Pacific Research Institute, and Seniors 4 Better Care.
The featured organizations, according to P4AD, "are posing as independent patient or policy groups while acting as mouthpieces for the drug industry's agenda—all while raking in pharma cash, fighting Medicare negotiation, and pushing misleading claims to block reforms."
Seniors 4 Better Care, for instance, is a shell group of the American Prosperity Alliance, the president of which "has a history of lobbying for the healthcare industry, including for organizations at the Healthcare Association of New York and insurance providers such as MVP Healthcare," P4AD's report observes.
"The group's treasurer, Parker Hamilton Poling, is a former lobbyist for pharmaceutical companies like Roche and Cencora," the report notes. "Brian Berry, the organization's secretary, also has a history of lobbying for Chinese biotech companies like Complete Genomics."
Earlier this year, Seniors 4 Better Care bankrolled an ad that directly urged President Donald Trump to end the "pill penalty," a label the pharmaceutical industry has used to describe the treatment of small-molecule prescription drugs under the Inflation Reduction Act's Medicare price negotiation provisions.
Last month, in a major gift to Big Pharma and industry lobbyists, Trump signed an executive order aimed at delaying Medicare negotiations for small-molecule drugs, which represent 90% of prescription medicines currently in circulation.
Another group highlighted in P4AD's report is the Center for Medicine in the Public Interest (CMPI), which describes itself as "a nonprofit, nonpartisan research and educational organization that seeks to advance the discussion and development of patient-centered healthcare."
P4AD notes that "every single member" of the organization's board has ties to the pharmaceutical industry. Peter Pitts, CMPI's president and co-founder, "primarily worked at firms hired by the pharmaceutical industry following an 18-month stint at the Food and Drug Administration," P4AD's report states.
"While working at major firms, such as Porter Novelli, Pitts retained his role at CMPI and insisted it was not a conflict of interest," the report continues. "He also currently teaches at the University of Paris, Descartes School of Medicine, a department that is funded by AstraZeneca."
Merith Basey, P4AD's executive director, said that "when your board is stacked with industry insiders, your primary funding comes from pharma, and your talking points mirror those of drug lobbyists, you're not a patient advocacy organization—you're a PR operation."
"Polling shows that Americans are aware that pharmaceutical corporations are the primary drivers of high drug prices, which is why the industry funds front groups to mislead the public and protect its bottom line," said Basey. "Patients and policymakers deserve to know whose interests these groups truly represent."