Connecting Patients, Families, and Advocates
Week in Review: The Many Voices of Biopharmaceutical Collaboration
10.11.13 | By
Every day, our industry strives to connect patients, families and advocates from across the globe who share our common goals of preventing diseases, improving health and saving lives. Those strong voices of innovators and stakeholders working tirelessly to address pressing medical challenges, and many medical breakthroughs wouldn’t be possible today or in the future without them.
On Thursday, our president and CEO John Castellani spotlighted the importance of the Prescription Drug User Fee Act (PDUFA), which has greatly expedited review times for new treatments over the past 20 years, helping patients gain access to more than 1,500 new drugs and biologics. Recapping last week’s “Conversations” question, Castellani highlighted the commitment to continue to work with stakeholders and the FDA to build on the progress of the implementation of the PDUFA V. Ultimately, the law will allow for greater input from patients and a more efficient drug approval process.
Also on the Catalyst, Guest blogger Steve Pasierb cited the importance of public-private partnerships to help improve the lives of Americans. As the CEO of The Partnership at Drugfree.org, Pasierb helped launch The Medicine Abuse Project, which aims to prevent abuse of both prescription and over-the-counter (OTC) medicines by young adults and provide free resources for those in need. With the help of teachers, doctors and community leaders, among many other advocates, The Medicine Abuse Project can raise much needed awareness in local communities across the country. Together a difference can be made.
Collaboration is especially important to individuals and organizations working to drive greater awareness of the need for rare disease treatment and research. With more than 450 medicines in development for rare diseases, this week on our “Conversations” forum we sought to elevate the voices of the rare disease community and learn more about their priorities and hopes for the future. Our CEO posed the following question:
“On 10/17, PhRMA will host a Twitter chat session around the subject of medicines in development for rare diseases. What are the shared priorities and interests of the diverse rare disease community that should be discussed in the Tweetchat?”
Some of our experts noted that the word “rare” should not hold us back. While a rare disease diagnosis can be isolating for patients and their families, there is a broad and interconnected network working together to find treatments and improve the lives of the 30 million Americans living with a rare disease.
To continue this critically important conversation, we encourage you to join our Tweetchat Thursday afternoon at 4 p.m. EST using the hashtags #RarePOV and #RareDisease, and be sure to follow fellow blogger, Tweeter and rare disease patient @SDFatPhRMA. You can also visit The Catalyst regularly to learn about more topics that impact millions of families across the globe. We look forward to your ongoing comments, ideas and feedback.