World Orphan Drug Congress LIVE: Expensive Drugs and Brazilian Scenarios

In Orphan Drug Congress, Orphan Drugs Live, Reports by Freya Smale

Ed Pezalla, VP of Aetna, Julie Stoss, VP of Government Relations, Kaiser Permanente, and Jeff Myers, CEO, Medicaid Health Plans of America gave a great presentation on understanding the payers’ perspective through The Payer’s Panel: Not against progress but against expensive drugs – The trio take the stage to answer any audience questions and concerns. 

  • Can payers share the burden of high orphan prices – and should they?
  • What is the current state of payer to payer collaboration dealing with these expensive medicines?
  • Payers don’t see “orphan drugs”, so how do they see rare disease treatment products?
  • It would be beneficial to let the money flow back to the public who put the money in.
  • How can patient advocacy groups carry the message of pricing for drugs within health plans.

Brazilian scenario for rare diseases presented by ANVISA’s Renato Porto and Interfarma’s Maria Jose Delgado Fagundes,

These are Interfarma’s and ANVISA’S initiatives to

  • Introduction to the Brazilian Rare Diseases Plan and how it impacts the orphan drug industry
  • What are the clinical protocols and therapeutic guidelines in Brazil and how many exist for rare diseases?
  • New rule from the Brazilian health surveillance agency

Maria touches on a few points:

  • Interfarma is a research based company and a patent holder.
  • Interfarma can provide services by working hard to publicize and see how issues are being handled in other countries.
  • Interfarma’s initiatives for 2015: A possible estudy of the Brazilian pricing model. A possible creation of registries of patients with different rare diseases in Brazil, as a tool for epidemiological data and diagnosis

Renato briefs about:

  • Vision: Be legitimized by society as a member institution of the Unified Health System, agil, modern and transparent, with national and international reference in regulation and sanitary control.
  • Goal: Always protect the health of the Brazilian population
  • Anvisa’s initiatives for rare diseases- principles; efficiency and transparency
  • Other initiatives- improvement of the activities of approval of clinical protocols and registration.

It’s been a great three days filled with loads of sharing and learning information. A massive amount of networking has helped make World Orphan Drug Congress a huge success, and we can only hope everyone will be there next year to see it themselves.

To check in with what has been happening for the past 3 days, check out #WODC on Twitter!

  • Screen shot 2015-04-24 at 3.25.59 PM