On December 12, the U.S. House of Representatives passed H.R. 3, “The Lower Drug Costs Act,” sponsored by Energy & Commerce Chairman, Rep. Frank Pallone, D- NJ. This bill, known as Speaker Pelosi’s drug plan, would put at risk patients with rare diseases who rely on access to plasma protein therapies.
On December 11, Newsweek published an article by K Thor Jensen titled “2% of U.S. export income comes from selling blood.” The headline is grossly inaccurate, and the accompanying article misrepresents and distorts publicly available data.
On February 1, The New York Times published an article that lacked balance in its portrayal of Source plasma donors. Plasma donors, including Jacqueline Watson, Kevin Hayway, and Robert Jenkins, all of whom are discussed in the article, deserve our deepest respect, gratitude, and appreciation, not negative characterizations and insinuation.
In an article published September 14 by Time magazine describing the national conversation surrounding teachers’ salaries across the United States, a teacher in Versailles, Kentucky, is profiled for earning supplemental income by donating blood plasma twice a week. The Plasma Protein Therapeutics Association (PPTA) commends the teacher, Hope Brown, for her commitment to empowering the next generation of Americans with a quality education and for her dedication to supporting individuals who rely on access to lifesaving therapies derived from blood plasma donations. We are grateful for each of the donations provided by Hope Brown and every healthy, committed plasma donor.
To our big surprise representatives from the Romanian Competition Authority arrived at our offices in Brussels on June 26 and were joined by Belgian police and the Belgian Competition Authority. The investigators were interested to know whether there was a coordinated effort to restrict supply of immunoglobulin therapies to the Romanian market for the purposes of pressuring the government to exempt these therapies from the “claw back” tax. PPTA cooperated fully with the investigators.
The pharmaceutical industry represented by AESGP1, EFPIA2, EUCOPE3, EuropaBio4, Medicines for Europe and PPTA5 – henceforth referred to as ‘the pharmaceutical industry’ – generally welcomes the European Commission (EC)’s Proposal for a Regulation on HTA6. We understand the scope of the joint clinical assessments foreseen in the proposal is limited to medicinal products subject to the centralised marketing authorisation, and exempting generic, biosimilar and non-prescription medicines7.
The article, “How Blood-Plasma Companies Target the Poorest Americans,” by H. Luke Shaefer and Analidis Ochoa, published in The Atlantic on March 15, was unfair to plasma donors as well as to individuals living with rare, genetic, and chronic diseases who rely on access to plasma protein therapies. Plasma donors are due our gratitude and respect, not sweeping negative characterizations.
Yesterday, a Congressional committee took an unprecedented step that limits access to innovative life-saving medications relied upon by thousands of patients living with rare diseases. The repeal of the Orphan Drug Tax Credit would have devastating effects for those facing chronic and genetic diseases, as it has proven to be essential to the development of hundreds of medicines, including plasma protein therapies.
Introduction
A recent publication in the Emerging Infectious Diseases journal (published online on June 12, 2017) describes two individuals with bleeding disorders who were diagnosed with sporadic Creutzfeldt-Jakob disease (sCJD) (1). The authors of this scientific report have not established a causal link between the treatment with clotting factors and the development of sporadic CJD and concluded that “the occurrence of these cases may simply reflect a chance event in the context of systematic surveillance for CJD in large populations”.
The Plasma Protein Therapeutics Association (PPTA) is proud to support Rare Disease Day, an annual international event that seeks to raise awareness about rare diseases and the patients and families that are affected by a rare disease.
