Support Call for Turing Pharmaceuticals to Uphold Commitment to Lower the Price of Pyrimethamine
On September 22nd, Turing Pharmaceuticals committed to lowering the price of Daraprim (pyrimethamine) after increasing the price 5000% in August 2015. One month later no action has been taken and the medication’s exorbitant price and controlled distribution continue to jeopardize access to the preferred treatment for a serious, potentially fatal condition. In response to the limited availability of pyrimethamine, the Department of Health and Human Services updated the guidelines on the Prevention and Treatment of Opportunistic Infections in HIV-infected Adults and Adolescents on Oct. 19th, 2015.
Support a call by the undersigned organizations for Turing Pharmaceuticals to take immediate action to ensure access to this essential medication for patients who need it by signing the open letter below. The deadline for endorsement is Wednesday, Oct 21st at 5 pm ET.
An Open Appeal to Turing Pharmaceuticals:
We, the under-signed organizations, are concerned that despite a commitment by Turing Pharmaceuticals to lower the price of Daraprim (pyrimethamine) more than a month ago, the price has not been reduced nor have distribution issues been sufficiently addressed.
The controlled distribution system requiring purchase of Daraprim (pyrimethamine) through Walgreen’s Specialty Pharmacy and its classification as a “specialty drug” also continues to create high and unreasonable hurdles for a medication that previously was widely available through local pharmacies to providers and their patients.
As a result, many individuals with toxoplasmosis in the United States are left without access to the preferred treatment for a condition that if not effectively treated can cause blindness, brain and organ damage or death. Patients already affected by the failure of Turing Pharmaceuticals to act on its commitment include pregnant women, children, infants, people with HIV and others with compromised immune systems across the country.
Within the last month I was seeing a child recently diagnosed with toxoplasmosis and was unable to obtain pyrimethamine as all contacted pharmacies had it listed as discontinued by their distributors. I had to change to trimethoprim/sulfamethoxazole despite the fact that data on that therapy in pediatrics is thin. – Reported by a physician
A patient with toxoplasmosis retinitis was quoted a price of $26,000 so we had to change his medication to Bactrim. A second patient had cerebral toxoplasmosis and was unable to get medications refilled by Medicaid. The patient was switched to a second line therapy. Neither therapy is ideal. – Reported by a physician
Currently, we have two inpatients on pyrimethamine for cerebral toxoplasmosis. We have two days left of pyrimethamine. A single bottle of 100 pills is the smallest the hospital can buy and will thus cost $75,000. Both patients will have to be switched to trimethoprim/sulfamethoxazole. – Reported by a physician
Yes, we have had a major issue getting pyrimethamine initially for a pregnant woman, and then for her baby following delivery. – Reported by a physician
We call on Turing Pharmaceuticals to take the following immediate actions regarding Daraprim (pyrimethamine):
- Lower the price to a level comparable to the price prior to the August 5000% increase.
- Provide parity on pricing for inpatient and outpatient settings.
- Offer support under the patient assistance program to patients with incomes at the level of at least 500 percent of the federal poverty level.
- Provide complete transparency regarding eligibility and documentation requirements for the patient assistance and co-pay assistance programs.
- Cover the maximum out-of-pocket costs ($6,600 for an individual plan and $13,200 for a family plan in 2015) on co-insurance and copayments allowable under the Affordable Care Act. The co-pay assistance program should be front-loaded to ensure that coinsurance amounts, which can be between 25 and 50 percent of the retail drug cost, are fully covered until the out-of-pocket limit is reached.
- Ensure same day and direct access to the drug in the communities where patients live.
The unjustifiable actions taken to leverage the value of an effective 70-year old medication are jeopardizing the health of individuals with a serious, life-threatening condition. These individuals do not have the luxury of time to wait for promised new treatments – which also will likely be priced out of reach.
[List in Formation]
HIV Medicine Association
Human Rights Campaign
Infectious Diseases Society of America
National Alliance of State and Territorial AIDS Directors
Pediatric Infectious Diseases Society
Ryan White Medical Providers Coalition
Treatment Action Group
 The Department of Health and Human Services (DHHS) guidelines on the Prevention and Treatment of Opportunistic Infections in HIV-infected Adults and Adolescents were recently modified to offer guidance on the use of alternative therapies due to limited access to pyrimethamine. See Toxoplasma gondii Encephalitis. – updated October 19, 2015. Online at: https://aidsinfo.nih.gov/guidelines/html/4/adult-and-adolescent-oi-prevention-and-treatment-guidelines/322/toxo.
 The DHHS guidelines on the Prevention and Treatment of Opportunistic Infections in HIV-infected Adults and Adolescents recommend a course of acute therapy for a minimum of six weeks followed by maintenance therapy for at least six months. Following their treatment recommendations, a minimum of 486 pyrimethamine tablets are required to effectively treat immunocompromised patients. Available online at: https://aidsinfo.nih.gov/contentfiles/lvguidelines/Adult_OI.pdf.
 This is in line with the policies of manufacturers of other HIV-related medications. See National Alliance of State and Territorial AIDS Directors. Pharmaceutical Company Patient Assistance Programs and Cost-sharing Assistance Programs. Online at: https://www.nastad.org/sites/default/files/HIV-PAPs-CAPs-Resource-Document.pdf.