Can a Father’s Quest to Save his Son from a Crippling Disease Lead to Affordable Gene Therapy for All?

By Paul Bond, Investigative Reporter, The Kennedy Beacon

Patrick Girondi, a former trader turned health advocate, is urging Health and Human Services Secretary Robert F. Kennedy Jr. and U.S. Attorney General Pam Bondi to investigate what he calls a decades-long conspiracy that blocked affordable gene therapy, costing lives and money.

Girondi, whose son Rocco has thalassemia, an inherited blood disorder, has for decades been on a mission to find an affordable cure. He says his company, San Rocco Therapeutics (SRT), could sell a cure for Thalassemia and Sickle Cell Disease for $800,000 per patient — far below the $3.1 million Lyfgenia, a drug made by Bluebird Bio.

Photo by Megan Euker

SRT alleges in court documents that Memorial Sloan Kettering (MSK), the famous cancer treatment and research institution in New York and Bluebird, the gene therapy company, sabotaged SRT, inflating prices and leaving families desperate. Girondi says New York Attorney General Letitia James could have rectified the situation if she hadn’t been preoccupied with indicting President Trump.

“Letitia James dropped the ball, spending all of her resources going after Donald Trump instead of those who sabotaged our product, which cost the lives of those with sickle cell disease,” Girondi told The Kennedy Beacon. “If 100,000 patients paid $3.1 million to Bluebird instead of $800,000, that’s $230 billion lost — most of it taxpayer money as the great majority of patients rely on medicaid or medicare.”

Now, with Trump as president, Bondi as AG, Kennedy at HHS, and Elon Musk and the Department of Government Efficiency (DOGE) targeting waste, Girondi sees hope. He believes this administration’s Make America Healthy Again (MAHA) vision and DOGE’s fiscal reform could expose the fraud he alleges and save billions, and that Bluebird’s recent sale sharpens his case.

On Feb. 21, Bluebird announced its sale to Carlyle and SK Capital Partners for $29 million plus the assumption of roughly $450 million in debt — a fraction of its peak valuation of $11.8 billion in 2017.

“It’s not too late,” Girondi said. “If Kennedy, Bondi, and Trump act, we can get a safe, cheaper product out there — save lives and billions of dollars. We can also deter dishonest executives from fleecing the public and destroying the lives and hope of patients and their families.”

Thus, Girondi has reached out to officials, seeking their help. “I firmly believe healing patients will cure my foes,” he wrote in his letter to Kennedy.

In correspondence to Kennedy and Bondi, he also included an email he sent to the New York Attorney General’s office two years ago, reading: “NY AG office seems to have unlimited ambition and funding to go after Trump...What about our patients? What about 100’s of billions in government/insurance fraud?”

Photo by Megan Euker

Girondi’s fight began 32 years ago when Rocco, now 34 and living in Altamura, Italy, was diagnosed with thalassemia. Girondi launched Errant Gene Therapeutics, to find a cure for his son. Three years ago he changed the firm’s name to San Rocco Therapeutics.

SRT partnered with MSK, but in 2017 it sued MSK, claiming MSK and Bluebird executives, Nick Leschly and Craig B. Thompson, entered into a “secret agreement” to hand over SRT’s intellectual property to Bluebird for free, as payback to Third Rock Ventures for funding Agios, leading to what one MSK doctor dubbed a “deadly agreement” that would ensure SRT’s vector could never compete with Bluebird’s.

Girondi claims that Juno, a spinoff of MSK, sold to Celgene for $10 billion, is part of the sabotage. Celgene was then sold to Bristol Myers Squibb (BMS) for $74 billion in 2019.

“We have it all detailed and diagrammed like a pig’s head on the platter at the Glutton’s Ball,” Girondi told me. “Everyone there is laughing and getting rich, except for the taxpayers, investors and patients. Bluebird turned $4.2 billion into $29 million. The executives all got rich, the public and investors fleeced and the felonies swept under the rug. Now that’s magic.”

In a December 17, 2021 Southern District of New York filing SRT accuses MSK of withholding critical data that “could have saved lives.”

Girondi stated, “Big pharma and medical institutions often work together to fill executives and board members' pockets. Bluebird’s Lyfgenia was jacked from $750,000 and approved at $3.1M per patient. This was only made possible by criminal activity.”

“Huge medical centers in bed with big pharma pay their executives millions of dollars and tell parents who are watching their kids die to beg for money on GoFundMe,” Girondi asserts.

Forbes.com reported that MSK is a nonprofit with $7.8 billion in gross receipts and $585 million in profit in 2023.

NJToday.net reported on January 17, 2024, in an article titled, “Tax-free executive compensation at leading charities deserves a look,” that “At the top of the heap stands Craig B. Thompson, M.D., CEO of Memorial Sloan Kettering Cancer Center who took home a cool $8.1 million in 2022. This translates to roughly a figure more than 108 times the median American household income.”

Bluebird and MSK did not respond to the Beacon’s request for comment on Girondi’s allegations.

In 2022, SRT filed against Bluebird and Third Rock Ventures alleging they stole SRT’s intellectual property in an attempt to “sabotage” a competitor for financial gain. SRT is requesting a jury trial.

Girondi first brought evidence of his assertions against Bluebird and MSK to attorneys at the New York AG’s office in 2019.

“They were good people who were banging their heads against the wall,” he said. “But the buck stopped at Letitia James. She says Black Lives Matter, but, in the end, she had money to go after Trump but not to save the neediest Black lives — the kids with sickle cell disease.”

The $230 billion he says, hypothetically lost because his cheaper option has strained Medicaid and Medicare, possibly causing the diversion of funds from a host of public goods like schools and roads.

The John Walton family — heir to the $400 million Walmart dynasty — invested $23 million in SRT between 1995-2025.

“It was Christy Walton’s, John’s widow’s idea to name our new product ‘Minirolu,’ for the patients whose struggle is the rock of our foundation; Michael, Nick, Rocco and her own son Lukas Walton,” Girondi wrote in his letters to Kennedy and Bondi.

Girondi said SRT’s newest vector, Minirolu, is 30 percent more efficient than Lyfgenia, which he claims is a rip-off of SRT’s first-generation product but with a few alterations.

Girondi claims, “Third Rock Ventures purchased a gene therapy junk for $35M in 2010. Simultaneously, Third Rock also had millions in shares of Agios Pharma. The ex- CEO of MSK is the founder of Agios. I say no more. I’m not allowed to, the crazy laws the corruptorations have passed won’t allow me to speak the entire truth. It’s all in the book, “Healthcare Criminals, which is written and soon to be published.”

In 2022, the New York AG’s office started a subpoena, though it was then dropped, due to limited resources as James focused on nailing Trump, according to Girondi.

The New York AG’s office did not respond to the Beacon’s request for comment.

Girondi says, “no system in the world, no insurance company could, would, will, pay those prices for that volume of patients. There are diseases with very few patients and high prices can be justified. There are over 100,000 SCD patients in the US alone. The price is not accessible. SRT could thrive as DOGE seeks ways to end government waste, fraud, abuse and lessen even legitimate costs.

“I’m not loved by everyone. [During the legal proceedings MSK has] called me a terrorist and extortionist and said they will destroy me.” Girondi said. “I’ve watched them take years of life from my son. Are they that stupid to think I’d cower for cowardly bureaucratic, bloodsucking lawfare maneuvers? My revenge will come from curing patients.”

Girondi hopes Minirolu receives FDA approval in 2026-27 or sooner as Kennedy prioritizes affordable cures.

In the meantime, in Italy, Girondi’s son Rocco’s survival depends on transfusions every few weeks — each a risk — and daily chelation, a process for removing heavy minerals and metals from the body.

Photo by Megan Euker

“He’s alive, but it’s a fight,” Girondi said.

Now, he’s banking on Trump’s team, hoping Bondi might launch a DOJ probe into the entire Bluebird sabotage while Kennedy makes Minirolu a MAHA flagship, slashing costs for taxpayers.

In fact, he met Kennedy, Trump, and Vice President J.D. Vance at Mar-a-Lago in December, where, he says, Kennedy promised to make accessible gene therapy part of his HHS legacy.

At Secretary Kennedy’s January hearing Senator Tim Scott asked, “Mr. Kennedy, will you support gene therapy for sickle cell disease?”

Secretary Kennedy responded, “Absolutely.”

“I cried,” Girondi said, “I literally cried.”

SRT claims it has Minirolu ready for 60 patients, enough to complete trials in Europe and the U.S., and that Dr. John Tisdale, who drives sickle cell research at the NIH, will lead SRT’s U.S. trial that will target 16 patients, eight with sickle cell disease and eight with thalassemia.

“Memorial Sloan Kettering is a great institution,” Girondi says. However, in court documents, his company states that the breach and sabotage committed by dishonest executives has cost lives.