The Daily Rise: Monday, March 28

Behind the Paywall

Behind the paywall at, Mari Serebrov looks into the countdown to passage of the 21st Century Cures Act.

The 350-page bill would speed up the discovery, development and delivery of life-saving treatments.

Although the 2016 presidential election is already in full swing, lawmakers hope to pass the bill before the 4th of July Congressional recess “to avoid the mire of electioneering and a lame duck session.”

“The clock is ticking. Big time,” Rep. Fred Upton of Michigan said, according to BioWorld. “The good news is that the Senate is really hearing our wake-up call.”

The goals of H.R. 6, according to a fact sheet prepared by the Committee on Energy and Commerce, are to:

  • Remove barriers to increased research collaboration.
  • Incorporate the patient perspective into the drug development and regulatory review process.
  • Measure success and identify diseases earlier through personalized medicine.
  • Modernize clinical trials.

There will be opportunities created from the 21st Century Cures Act. However, it’s important for patients to keep our optimism in check. As Serebrov reports:

“An issue for patients that’s not addressed in Cures or the HELP version is access to new treatments and the resources to care for a child with a debilitating illness.”

“Walter Whitt, an 18-year-old with cystic fibrosis (CF), described his day, beginning at 5:30 a.m. for a half hour of therapy using a vest device that helps break up the mucus that’s formed in his lungs overnight. When the vest was first marketed, Whitt said he was denied access to it because he was “too healthy.” Meanwhile, his lung function deteriorated.”

The Dream Team

Over at, Luke Timmerman, the founder and editor of Timmerman Report, suggests that a “Dream Team” could fix drug pricing.

What exactly would a Dream Team try to achieve? He writes, “The goal: Improve access to medicines, improve patient outcomes, and maintain profit incentives for companies to keep developing innovative new ones.”

Among the list of names that Timmerman would draft for his “Dream Team” are:

  • Tony Coles: CEO of Yumanity Therapeutics, a venture-backed drug discovery startup seeking Alzheimer’s drugs
  • Jeremy Levin: CEO of Ovid Therapeutics and the former CEO of Teva Pharmaceuticals, the leading generics manufacturer

Who would you draft for a Dream Team? Join the conversation by tweeting your suggestions to @patientsrising with the hashtag #DreamTeam. And for more on Timmerman’s recommendations, check out both pieces.

Part I: “This Dream Team Could Fix Drug Pricing
Part II: “The Dream Team That Could Fix Drug Pricing

Surge in Biosimilars

Christine Blank, contributing editor at Drug Topics, takes note of a growing trend: physicians are embracing the prescription of biosimilars.

“We believe the data show that physicians are beginning to understand the value of biosimilars, particularly those who are high prescribers of biologics and therefore familiar with biosimilars,” Diane Hayes, PhD, president and co-founder of InCrowd, told Drug Topics.

That conclusion is based on a recent survey by InCrowd’s MicroSyndicated, which found:

  • 44% of U.S. physicians expect to prescribe more biosimilars over the next three years
  • 17% of respondents felt that biosimilars would become the norm or replace biologics over the next three years as more biosimilars become available

This development is good news for patients. Biosimilars are an instrumental component of our goal to make sure that the right patient is getting the right treatment. Physicians may have caught on to the value of biosimilars, but not every insurance company has. We need to keep the pressure on insurance companies to modernize their policies to include biosimilars.

Join us on April 5 in Sacramento

For all our friends in and around Sacramento, join us on April 5th for an in-depth panel discussion, “Right Patient, Right Treatment, Right Now.”

Patients Rising Policy Director, Jonathan Wilcox brings together patients, patient advocates, as well as policy and medical professionals to reveal the real barriers standing between patients and the effective treatments they need, when they need them. What are the real barriers facing patients in California? What policies and initiatives are on the horizon that could affect the patient-doctor relationship?

We previously announced that California State Assemblyman Bill Brough will serve as one of our distinguished panelists. Now, we’re excited to announce that he’ll be joined by:

  • Jennifer Hinkel, health economist, survivor and patient advocate
  • Stacey L. Worthy, Director of Public Policy at Aimed Alliance
  • Elizabeth Lacasia, survivor, patient advocate, and founder of LungPedia

Date: Tuesday, April 5, 2016

Time: 11:30 AM to 1:00 PM (PDT)

If you live in Sacramento, register to join us for a lively discussion and lunch. We hope to see you there!

You’ll receive updates about new resources, patient stories and insights, advocacy work, and alerts about patient-support events.