Patient Advocacy

Increase in Drug Spending Largely Attributed to Rebates Pocketed by Pharmacy Benefit Managers

Robert Goldberg, PhD

September 2016, Vol 7, No 8 - Patient Advocacy

Total drug spending in the United States, based on invoice prices, reached $425 billion in 2015, according to the IMS Institute for Healthcare Informatics report, “Medicines Use and Spending in the U.S.: A Review of 2015 and Outlook to 2020.” When adjusted for net price spending, $310 billion went to drug and biotech companies, but where the other $115 billion went is often omitted from media coverage. [ Read More ]

FDA Advisors Vote Against Duchenne Muscular Dystrophy Drug, Reject Value of Hope for Patients

Robert Goldberg, PhD

July 2016, Vol 7, No 6 - Patient Advocacy

On April 25, 2016, an FDA advisory committee voted not to recommend the approval of eteplirsen, an experimental drug that targets one of many genetic mutations causing Duchenne muscular dystrophy (DMD), a deadly degenerative disease that has no cure. After agreeing to study the real-world effects of eteplir­sen, the FDA advisory committee rejected findings that patients who have been taking eteplirsen since 2011 were still able to walk because the clinical data did not meet the FDA requirements for a well-controlled study. [ Read More ]

Building a National Patient Advocacy Network in Oncology

Rose Gerber

February 2012, Vol 3, No 1 - Patient Advocacy

Formed in 2003, the Community Oncology Alliance (COA), led by Executive Director Ted Okon, has been well established nationally as the only nonprofit organization advocating solely for community oncologists and their patients. As a result, COA has a very strong presence on Capitol Hill, representing its physicians and community center practice administrators from all across the country. [ Read More ]