Menu

Top Stories

Published on Thursday, April 11, 2019

Moderated discussion: “Advancing the innovation ecosystem: Working together for patients,” in Washington, DC

Moderated discussion: “Advancing the innovation ecosystem: Working together for patients,” in Washington, DC

On April 3, 2019, Francis Collins, MD, PhD, director of the National Institutes of Health (NIH), Mikael Dolsten, MD, PhD, chief scientific officer and president, Worldwide Research, Development and Medical, Pfizer, joined in a discussion led by Susan Dentzer, visiting fellow at the Robert J. Margolis Center for Health Policy, Duke University, in Washington DC.

Photo: Francis Collins, MD, PhD, director of the NIH (left) and author Alejandro Hernandez, editorial manager of the Alpha-1 Foundation (right)

For 60 minutes, Collins, Dolsten, and Dentzer engaged in a conversation with the theme of: “Advancing the innovation ecosystem: working together for patients,” where they emphasized the need for continued collaboration between the private and public sectors, along with the patient community, in order to advance new and emerging technologies and innovative approaches for potentially life-saving treatments and new outcomes in medicine.

“We are currently living in remarkable times with amazing things happening in areas such as cancer immuno-therapy, gene therapy, and gene editing. The things that are happening right now, I had no idea they would even be possible just five or six years ago,” expressed Collins when asked about the current position “the ecosystem,” as they described the collaboration between the private and public sectors with small biotech companies; an ecosystem with symbiotic characteristics where all contributors play an important role in a tremendous team effort, in medical research.

Collins and Dolsten agreed on the importance of advocacy groups and organizations as well as the patient community, in being part of the process for better outcomes and the ability to bring new and potential treatments for various conditions to the clinic, including rare diseases, such as Alpha-1 Antitrypsin Deficiency (Alpha-1). 

“We need you, the patient community, you are the reason we have gotten this far,” said Collins.

“One of the most important resources needed for this ecosystem to strive is you, the patient. We need to line-up our resources and keep the ecosystem going, including the patient community. There is no one better to bring together what others (physicians) can do than patients: you inspire all of us,” expressed Dolsten.

The Alpha-1 Foundation applauds and supports these types of initiatives, in which patients become partners and are of vital importance for therapeutic development. 

The panel also mentioned that it is critical to spread awareness and education in the medical community, and being able to have early diagnosis and detection, while mentioning the Accelerating Medicines Partnership (AMP), a public-private partnership between the NIH, the U.S. Food and Drug Administration (FDA), multiple biopharmaceutical, and life science companies, as well as non-profit organizations to transform the current model for developing new diagnostics and treatments by jointly identifying and validating promising biological targets for therapeutics.

The ultimate goal of AMP is to increase the number of new diagnostics and therapies for patients and reduce the time and cost of developing them.

“Patient participation is critical for AMP, especially to remind us what we are doing and why-and-who we are doing it for,” said Collins, who also mentioned the Foundation for the National Institutes of Health (FNIH) as being instrumental in bringing together funds and resources from both the private and public sectors, to work in mutual collaboration in research projects that will ultimately benefit the patient community.

The Alpha-1 Foundation applauds these types of initiatives that support research and bring innovative approaches to the table for the benefit of the patient community, as we are committed to finding a cure for Alpha-1 and improving the lives of Alphas, and those affected by the condition, worldwide.

For more information, please visit the Collaboration Ecosystem website and the AMP website.


Print

Roger and what’s “just out of reach”

Tuesday, March 20, 2012
What would you like to be able to do, that you can’t quite do now? What’s just out of your reach? If it’s something that requires breathing a little better, or being slightly stronger than you are right now, Roger Bray has some...
Divider

Pilot back in the skies after losing license due to Alpha-1

Tuesday, March 20, 2012
Steve Wolbrink loves to fly in fact, he loves it enough to fight for the right to do it. His passion and determination to remain “in flight” is what got his license back after the FAA took it when he failed his physical exam due to...
Divider

Every Breath

Tuesday, March 20, 2012
A poem for Nancy Danley 2/14/09 I close my eyes, lowering my head to take a bow in prayer A smile appears across my face, because I know you’re there. So many times through any day, I could easily slip into fear,  Instead I pause,...
Divider

Hostess with the Mostest

Tuesday, March 20, 2012
If you know anything about Liz Veronda, you know she throws a great party – like, for instance, there was that retro- ’70s birthday bash she put together for her husband a few years back, complete with a mirror ball, sand art, Farrah...
Divider

“Life: A Breath Away”

Tuesday, March 20, 2012
Helen “Cathy” Gould was diagnosed with Alpha-1 in 1999 after her health declined so rapidly that she was forced to retire.  As she began weekly IV injections, Gould decided to become an Alpha-1 Support Group leader, hoping to...
Divider

Feathers by the Million

Tuesday, March 20, 2012
The poet Emily Dickinson called hope “the thing with feathers that perches on the soul,” and Leopoldo Fernández Pujals and his wife, Marilina, know all about “the thing” with feathers. Their son Andres was diagnosed...
Divider

The Day that Alpha 1

Tuesday, March 20, 2012
A poem written by Lila M Thomason, in memory of her brother, Leon. When they made my brother Leon, they threw away the mold Too short a life he lived Too short our story told About an eight year race That ended at 42 years old.  He...
Divider

Singing lifts Margery’s spirits

Tuesday, March 20, 2012
Margery Eriksson of Berkeley, California won’t let Alpha-1 lung disease stop her from doing what she loves most – singing. The retired elementary school teacher has been singing for the past 21 years with the Oakland Symphony Chorus....
Divider

Live life to the fullest: Advice from Mary, who does it every day!

Tuesday, March 20, 2012
Mary Pierce is the definition of an athlete: she’s a kayaker and a bicyclist, she lifts weights regularly, she rides her motorcycle and she works full time. And yes, in her spare time, she’s learning to fly a powered paraglider. For...
Divider

Former Baywatch star, mother, fashion designer and Alpha

Tuesday, March 20, 2012
Melissa Biggs looks like a model – tall, blonde and athletic – or, at least looking at her, you might think she’s somebody you saw in a movie or on television. In fact, she’s all of those things. She plays in a tennis...
Divider

The life of Vicki Joseph remembered: Memorial booklets are still available celebrating her life "in her own words"

Tuesday, March 20, 2012
  Victoria “Vicki” Joseph’s budding career as a playwright and novelist was cut short when she died of chronic rejection of her transplanted lungs on Aug. 2, 2009. Joseph had been a librarian, a criminal defense attorney...
Divider

Trine: Who says you need 14 pills a day after transplant?

Tuesday, March 20, 2012
Trine Engebretsen was being treated in the twelfth hospital to admit her in her short life – she was dying of Alpha- 1 liver disease, and she was only two years old. Her pediatrician told her parents that she was failing quickly. The...
Divider
First59606162636465666768Last

Article Search

Enter keywords in text box and click Search button for results.

Archive