The Impact
The Daraprim price increase from $13.50 to $750 per pill hit the patients least able to switch drugs: people with HIV/AIDS, organ transplant recipients, cancer patients on chemotherapy, and newborns with congenital toxoplasmosis. Hospitals changed how they prescribed it, ran short of the drug, or moved patients to less-studied alternatives.
The Weston Family
Shannon and Joshua Weston testified before the Senate Special Committee on Aging on March 17, 2016. Their infant daughter had congenital toxoplasmosis. Without treatment, the condition can cause blindness, neurological damage, or death. Infected newborns can need up to a year of continuous treatment with pyrimethamine, sulfadiazine, and leucovorin.
After the price increase, the family's medication bill rose to $28,000 per month. Turing had publicly claimed that "no patient needing Daraprim will ever be denied access."
Hospitals
Massachusetts General Hospital reviewed its pharmacy budget in October 2015 and called Daraprim "prohibitively expensive." The hospital switched patients to alternative antiparasitic regimens. A week later, Mass General sent Turing a formal complaint about "inaccurate/misleading information" on patient access. Internal Turing communications showed that company leadership was concerned about the hospital's decision.
Grady Memorial Hospital in Atlanta, a public safety-net hospital, went without the drug for weeks at a time. Dr. Wendy Armstrong, head of the Infectious Diseases Program, reported that when a patient with HIV developed a brain infection that required Daraprim, the hospital ran out during treatment. Resupply required approval from a hospital review committee because of the cost.
The Cost Data
A study at one large public hospital compared toxoplasmosis drug costs before and after August 2015:
| Measure | Before the price hike | After the price hike |
|---|---|---|
| Total admissions | 66 | 61 |
| Total drug cost | $50,310 | $1,026,006 |
| Median cost per admission | $458 | $5,452 |
| Median daily cost | $54 | $1,363 |
| Pyrimethamine share of total drug cost | 57% | 98% |
Total drug spending increased 20-fold even though patient volumes were similar. Sulfadiazine, sold by other manufacturers, rose only from $4.03 to $4.42 per tablet in the same period.
Prescribing Collapse
Before the price hike, infectious disease specialists at academic medical centres prescribed Daraprim about five times per month for toxoplasmosis cases. After the price increase and the distribution restrictions, the same physicians prescribed it once per month or less.
Some physicians switched to trimethoprim-sulfamethoxazole (TMP-SMX) or atovaquone. Neither drug has comparable clinical evidence for toxoplasmosis. Physicians chose them because they were affordable.
Total pills sold fell from 25,500 in August 2015 to 600 in December 2015. Senator Claire McCaskill disclosed those figures at the Senate hearing.
Compounding Pharmacy Response
Imprimis Pharmaceuticals, a San Diego compounding pharmacy, offered a compounded version of pyrimethamine and leucovorin for $99 per 100 capsules. Compounded drugs do not go through the FDA approval process, and insurers or hospitals do not always accept them.
The Patient Assistance Programme
Turing created the "Daraprim Direct" programme and claimed it would ensure that no patient would be denied access based on inability to pay.
Enrolment: Patients had to register through Walgreens Specialty Pharmacy, the sole authorised distributor. The process required extensive financial disclosure and individually identifiable health information. For HIV/AIDS patients, that meant disclosing their status to another entity. Turing's own internal documents acknowledged that patients faced "delays in claims approval and rejections."
Caps: The maximum out-of-pocket benefit was capped at $5,000 per month and $15,000 per year. One documented case showed a patient facing a $16,830 copay despite being enrolled in the programme.
Navigation time: Dr. Wendy Armstrong reported that patients and healthcare providers spent hours, and sometimes days, getting programme approval. Some hospitals had to extend their lines of credit to cover the $75,000 cost of a single bottle while they waited for decisions.
Eligibility: The programme offered the drug at no cost to uninsured patients below 500% of the federal poverty level. Applicants had to provide proof of income, employment authorisation, and other documentation.
What the Hearings Revealed
Turing's access claims did not match what patients reported, and both 2016 congressional hearings focused on that gap. Nancy Retzlaff, Turing's Chief Commercial Officer, told the House Oversight Committee that most patients did not pay the $750 list price. Former General Counsel Howard Dorfman testified that company leadership knew the access programmes were inadequate.
The FTC's 2020 complaint documented how the restricted distribution system kept the price high by controlling supply. It also blocked generic manufacturers from obtaining the samples needed for FDA bioequivalence testing.