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THURSDAY, Feb. 28, 2025 -- Hours after billionaire Elon Musk told the president's Cabinet that the U.S. had quickly restored canceled aid to fight Ebola in Uganda, the Trump administration officially ended at least four of five U.S.-funded Ebola contracts in the country. The contracts were just a handful of the 10,000 grants and contracts canceled by the U.S. Agency for International Development (USAID) and the U.S. State Department amid cuts by Musk's so-called Department of Governmental Efficiency, or DOGE. The canceled Ebola contracts provided critical support at a time when Uganda is still recovering from a serious outbreak that began in January, The New York Times reported. The contracts funded airport screening, protective equipment for health workers and programs to help survivors avoid spreading the virus, according to a former USAID official. Musk, CEO of Tesla and the world's richest person, is a senior adviser to President Donald Trump. He and the Trump-created DOGE are working to shrink the federal government. Musk told Cabinet members earlier Wednesday that after DOGE briefly canceled Ebola prevention funding, the administration “restored the Ebola prevention immediately, and there was no interruption." But two former USAID officials familiar with the situation in Uganda say that’s not true. At Entebbe Airport, for example, Ebola screening was paused for more than two weeks. A group providing screening services decided to resume work using its own funds -- but that contract was officially terminated the night of Feb. 26. The White House declined to clarify Musk’s comments and directed questions to him directly. Musk did not respond to The Times' requests for comment. The funding cut leaves a major gap in the U.S. role in controlling Ebola and other diseases. USAID had more than 50 staffers dedicated to outbreak response, but recent cuts left just six people to handle Ebola, Marburg virus, mpox and bird flu preparedness. “I have no idea how six people are going to run four outbreak responses,” one official who was let go told The Times . “It’s complicated at the best of times when you’re fully staffed.” Although the Trump administration allowed some waivers for health programs related to Ebola, Marburg and bird flu, little money had actually reached the field, according to The Times . Few organizations had the reserves to keep working and even fewer trusted they’d ever get reimbursed. Further complicating matters, the U.S. Supreme Court’s chief justice, John Roberts, ruled Feb. 26 that USAID and the State Department don’t have to immediately pay the $1.5 billion owed for work already completed. After the first Ebola patient in this year’s outbreak visited six different health facilities, Uganda asked for protective gear to shield workers who were exposed. USAID has a warehouse in Nairobi stocked with such gear, but since the World Health Organization (WHO) manages it, USAID staff weren’t allowed to directly communicate with WHO or even pay them to release the supplies. With no clear solutoin, officials ended up spending $100,000 to buy the gear elsewhere. “So much for cost-effectiveness,” a former official with knowledge of the events, said. The contract with the alternate provider, too, has now ended. Whatever your topic of interest, subscribe to our newsletters to get the best of Drugs.com in your inbox.

Jill Wood had pinned her hopes on a little-known federal program to fund her son’s gene therapy. The initiative, which awards vouchers to companies targeting rare pediatric diseases, offered her son a lifeline after a lack of interest from large drugmakers. But in December, the program wasn’t extended amid last-minute negotiations on a large federal spending bill — collateral damage in an effort by President Donald Trump and his backer Elon Musk to streamline the legislation. “I don’t think legislators realized what they were doing,” Wood said. “Hope just disappeared.” The program’s demise was just the start of the Trump administration’s impacts on rare disease medicine, and science more broadly. In the two months since, the administration has cut staff at the NIH, and the agency’s funding is under increasing scrutiny. Meanwhile, a backlog in grant evaluations has left some research in limbo. The White House did not respond to a request for comment. Musk, the Tesla CEO who is leading the cost-cutting effort, has said that “we will make mistakes ; we won’t be perfect.” He has cited the shutdown of an Ebola prevention program as an example. But rare disease advocates, and others, say they don’t think he knows the damage done to their communities. “We need to sit down with Elon Musk,” said Lori Sames, a parent to a teenager with an ultra-rare disease , who spoke to Endpoints News about shrinking funding opportunities for these conditions. What’s formally known as the rare pediatric disease priority review program was established in 2012 to spur investment in overlooked conditions. It grants companies a voucher to expedite FDA drug reviews. These vouchers can be sold – they’re worth about $100 million on the open market – and thus provide funding to rare disease drug developers. The program costs taxpayers nothing, though it requires extra attention from FDA staff . Critics say that vouchers shouldn’t be given to pharmaceutical companies that profit handsomely from more common rare diseases. That includes Vertex Pharmaceuticals, which used vouchers to speed reviews of cystic fibrosis drugs that bring in billions in revenue each year. Still, detractors acknowledge the program’s role in funding therapies for the rarest of rare conditions, and are open to alternatives more tailored to these patients. “I’m in favor of providing support in cases where a disease is so rare that there’s no prospect that the product would lead to meaningful revenues in the market,” said Aaron Kesselheim, a Harvard Medical School researcher who has published research on the program failing to live up to its public health aims. Wood’s 16-year-old son, Jonah, was diagnosed with Sanfilippo syndrome type C. The ultra-rare condition, which results in severe brain damage and premature death, is estimated to affect around 1,000 people. With a dearth of commercial interest, Wood started a nonprofit and then co-founded a company called Phoenix Nest that secured $13 million in grants. That money is going toward a gene therapy and enzyme replacement treatment, along with natural history studies to gain a better understanding of how the disease progresses. But more funding is needed, and the loss of the voucher program means it will be tough if not impossible to get the therapies to the approval stage. To ease the capital burden, the gene therapy could be eligible for accelerated approval after the FDA signaled an openness to leaning on biological data for a handful of deadly neurological diseases, Sanfilippo syndrome among them. The agency is moving toward greater regulatory flexibility when reviewing rare disease medicines. Even with the FDA’s shift, Wood said investors are likely to hesitate without the voucher program in place. Time is in short supply. Jonah has already outlived many with the condition. Despite his challenges, he can still communicate in single sentences and is “very sweet,” Wood said. “He tells me he loves me 100 times a day.” The voucher program expired in December for those who hadn’t already received the designation. (It sunsets next year for those who have.) In what may be a sign of the growing scarcity of the vouchers, Zevra Therapeutics on Thursday sold one for $150 million, more than a 50% increase compared to the average sale price before the program expired. In December, as lawmakers worked to finalize a major spending bill, Trump and Musk balked at the legislation’s scope and insisted on cuts. They didn’t object to the voucher program itself, but in the end, it was removed. “It was solely really about the process and the narrative rather than disagreements about the policy,” said Jamie Sullivan, vice president of policy at the advocacy group Everylife Foundation for Rare Diseases. A spokesperson for Sen. Rand Paul (R-KY), who played a major role in the budget process, declined to comment. Efforts are underway to revive the legislation. Earlier this month, it was reintroduced in the House in the form of the Give Kids a Chance Act of 2025. It could move forward as a standalone bill or hitch a ride to a larger funding package. Like Wood, Terry Pirovolakis said the program would make it possible to develop a gene therapy that helped his son, alongside other treatments that he’s trying to push forward. “My concern is that there’s so much going on in the US right now that we’re going to be lost in the noise,” Pirovolakis said. “When you compound all the threats to rare disease research, basically we’ve gone back to the dark ages.” The head of GEMMABio — one of the few companies that have recently attracted a significant amount of funding for rare disease treatments — said the program’s absence limits the company’s ability to expand research. “Access to the PRV program would allow us to accelerate our research and expand its scope into other rare diseases,” GEMMABio CEO Jim Wilson said in an email. Beyond the loss of the voucher program, rare disease advocates say the Trump administration has created additional challenges. That includes delaying or canceling NIH study sections in which expert panels consider which research to support. Collaborations Pharmaceuticals’ study section was canceled that will decide the fate of grants supporting the company’s drug development efforts, including a potential therapy for the ultra-rare condition CLN1 Batten disease. “Without grant funding, we would not be able to employ our staff and fund the research so we would have to look for alternative ways to fund the company,” CEO Sean Ekins said, adding those alternatives could include providing AI services to other companies. For advocates, another blow came this week. Amid federal layoffs, the FDA and NIH abruptly postponed a two-day rare disease event that shapes the agencies’ policies. In response, frustrated families canceled travel plans and scrambled to put together their own meetups. The agencies will “reschedule it to occur in the coming months,” an announcement on the FDA’s website said.

USAID's website was taken offline in recent days. The U.S. Agency for International Development (USAID)’s work, including its efforts to strengthen pharmaceutical supply chains and deliver lifesaving medicines, is seemingly at a standstill as Elon Musk works to “shut it down.”Musk, who heads up the Trump administration’s new Department of Government Efficiency (DOGE), discussed his plans for the humanitarian aid organization in a Monday conversation on X Spaces.“With regards to the USAID stuff, I went over it with (the president) in detail and he agreed that we should shut it down,” he said, as quoted by CNN. The billionaire Tesla CEO said he checked with President Trump “a few times” on the matter, according to the report.Over the weekend, USAID’s top two security officials were placed on administrative leave after refusing to give DOGE representatives access to internal systems, The New York Times reported, citing three U.S. officials with knowledge of the matter.The agency’s website and X account have been taken offline. An associated webpage called “Dollars to Results” displays a notice that it is “currently undergoing maintenance as we expeditiously and thoroughly review all of the content.”During the first day of his term, Trump inked an executive order mandating a 90-day freeze in foreign assistance programs while the administration reviews them for “programmatic efficiency and consistency with United States foreign policy.” Programs not in line with the administration’s priorities stand to be terminated.After contractors and partners who work with USAID received orders to stop work, U.S. Secretary of State Marco Rubio issued a waiver allowing an exception for certain humanitarian assistance, according to a State Department memo reviewed by Reuters. The waiver covered life-saving medicines, medical services, food, shelter and subsistence assistance, plus supplies and “reasonable administrative costs” necessary to deliver such assistance. USAID’s work in the pharma vein centers on providing medicines and vaccines to address tuberculosis, HIV, polio, malaria, Ebola and other health threats. The agency works with governments around the world to ensure sustainable access to “safe, effective, affordable, quality insured medical products,” according to an archived version of the organization’s website, and it operates several programs that run the gambit of drug development and health supply chains.In 2023, USAID provided $42.45 billion in foreign aid, according to the U.S. government’s foreign assistance dashboard. Healthcare commitments totaled more than $7 billion of the agency's spending figure.The organization regularly makes multimillion-dollar drug purchases. In October, the agency spent $2.3 million on 4.8 million doses of malaria tablets from Swiss Pharma in a partnership meant to expand access to essential medicines in Nigeria and West Africa. And last May, USAID kicked off a two-year, $5 million project to produce, regulate and export medicines and active pharmaceutical ingredients in Uzbekistan and Kazakhstan.