The Alliance

The Weekly Dose | 02.28.20

February 28, 2020 2:31 pm

All eyes are (correctly) focused on coronavirus this week. Please check out the news below to see how drugmakers are working to help discover vaccines, treatments, and cures, but also take note of this line from a CNBC story: “Hopes to get a vaccine to market are high … [But] developing, testing, and reviewing any potential vaccine is a long, complex, and expensive endeavor that could take months or even years, global health experts say.”


That statement can be made about any new treatment—one for cancer, Alzheimer’s, and the nearly 7,000 rare diseases that impact Americans. It’s a good reminder of what is at stake in the drug-pricing debate. If you need more info for a story, or have questions, please email us. We look forward to working with you.


We look forward to working with you.



Patrick O’Connor – Executive Director

Rosemarie Calabro Tully – Communications Director




- Physician Debra Pratt recently wrote in @MorningConsult that more and more doctors are finding their expertise stifled by insurance companies using #steptherapy – to the detriment of #patients. Read more: Click here to RT.  


- We love this insightful op-ed written by physician Betsy Nabel in @detroitnews: “Our #innovation ecosystem is being threatened.” Policies being pushed to control #drugprices will stifle research, blocking the exploration of new #treatments. Click here to RT.


- #DYK there are 2100+ industry-sponsored pediatric clinical trials underway? Among these is a therapy for #sicklecell, offering hope to young #patients & their families. This is the kind of #innovation we can’t afford to lose due to short-sighted policy. Click here to RT.




Check out and share on Twitter our latest blog posts:


- ICER’s Newest Target Has Cystic Fibrosis Patients Worried. It's Rare Disease Week, and EveryLife is working hard to ensure every patient gets excellent treatment. The Arnold-funded Institute for Clinical and Economic Review, meanwhile, is working to halt access to crucial treatments like those that fight cystic fibrosis. Click here to read the full blog post. Share on Twitter here.


- What Is Step Therapy And How Does It Affect Patients? Some groups may tout step therapy as a way to reduce drug prices, but a growing body of research shows this idea doesn’t benefit patients at all. For a refresher on what step therapy is and how it can harm patients, read our post. Click here to read the full blog post. Share on Twitter here.


- Arnolds’ $60 Million In Gasoline Fuels Push For Reference Pricing. The Arnolds have been spending big money–$60 million–on reference pricing. This practice uses competitor prices to control the cost of a medication but forces long wait times for patients to receive life-saving drugs. Click here to read the full blog post. Share on Twitter here.




- New Medications Reduce Overall Healthcare Costs. Explaining his opposition to a Trump administration proposal to restructure Medicare Part B, Emory University professor Kenneth Thorpe, who also is chair of the Partnership to Fight Chronic Disease, writes: “By limiting patients’ access to existing drugs and discouraging the development of future ones, the proposal would make it harder for Americans to manage their conditions and avoid costly complications. According to a study by my organization, the Partnership to Fight Chronic Disease, new medicines could avoid $6 trillion in healthcare costs and prevent 16 million deaths by 2030.”


- Insurers “Buying Up” Doctors’ Offices, Then Steering Patients To Own Clinics. According to The Wall Street Journal: “Some of the largest health insurers are capitalizing on recent massive deals by steering patients toward clinics they now own, controlling both delivery and payment for health care. The trend creates worries for rival doctor groups and hospital companies that have invested deeply in buying up physician practices, which now increasingly compete against offerings from insurers.”


- Hope For Patients With Rare Disorder That Causes Premature Aging? STAT News reports there is hope for patients who suffer from progeria, a rare, fatal genetic disorder that causes premature aging. An experimental drug appears to prolong the life of people with the disease, which has been identified in only 169 children and young adults worldwide.


- Testing Starts On Coronavirus Drugs. As The Wall Street Journal reports, the National Institutes of Health said Gilead Sciences’ antiviral drug for the coronavirus is undergoing testing at the University of Nebraska. Remdesivir also been tested as a treatment for MERS and SARS. Additionally, Politico reports startup Moderna Inc. has shipped 500 vials of a coronavirus vaccine to the NIH for testing.


- ICER: We Got It Wrong On Migraine Drugs. STAT News reports the Institute for Clinical and Economic Review (ICER), a group backed by insurers and billionaires John and Laura Arnold, has admitted that it undervalued two migraine drugs, one from Allergan and another from Biohaven Pharmaceuticals. Biohaven CEO Vlad Coric said in a statement that he felt “vindicated by the decision.”




Mike Eging is executive director of the Rare Access Action Project, explains how congressional drug pricing proposals could negatively impact Americans suffering from rare diseases:


“Rare disease drugs are often developed by small enterprises that don’t have large-scale drugs to offset their costs; these innovators have cobbled together a team made up usually of patient families, research-oriented academics, visionary life sciences professionals, and venture capitalists willing to take on great risk. Treatments, once realized, often will never be sold on the scale of drugs designed for the afflictions of the many, those who have won a genetic lottery of sorts in the conditions impacting them and the drugs available to them.”