Patients are the purpose

October 29, 2020
It’s Day 2 of the BIO Patient and Health Advocacy Digital Summit, which has seen record turnout. Below, takeaways from Day 1 on how we can put patients at the center of our work, as well as a new partnership that will advance sustainable aviation fuel in business…
BIO

It’s Day 2 of the BIO Patient and Health Advocacy Digital Summit, which has seen record turnout. Below, takeaways from Day 1 on how we can put patients at the center of our work, as well as a new partnership that will advance sustainable aviation fuel in business travel. (1,000 words, 5 minutes)

 

How to follow the BIO Patient & Health Advocacy Digital Summit

 
 

What we’re watching today: We begin with insights from Sick Cells’ Ashley Valentine on how to build a patient advocacy organization from the ground up (12 PM ET/9 AM PT), followed by a look at the Bayh-Dole Act's impact on innovation (12:45 PM ET/9:45 AM PT). In the afternoon, we’ll cover state advocacy, including the 2021 state legislative outlook (12:45 PM ET/9:45 AM PT) and patients’ access challenges (1:30 PM ET/10:30 AM PT). BIO Chair Dr. Jeremy Levin will lead a fireside chat on building a patient advocacy organization focused on rare disease (2:40 PM ET/11:40 AM ET). The day closes with policy and election predictions from The Cook Political Report’s David Wasserman (4 PM ET/1 PM PT).

 
 
 
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Patients are the purpose
Merck's Dr. Julie Gerberding - BIO Patient and Health Advocacy Digital Summit
 
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That was the resounding message of Day 1 of BIO’s Patient and Health Advocacy Digital Summit. Below, three takeaways.

1. Trust is essential.
From enrolling more people of color in clinical trials, to building a successful coalition, trust is essential.

People tend to trust people from their own communities, "who have their same value and belief systems," said Tracey D. Brown, CEO of the American Diabetes Association (ADA)—one reason why it’s so important for the industry to be representative of the patients we serve.

When it comes to building a coalition, you can build trust by “being transparent about what your goals are and what the process is going to be,” said Pam Traxel, SVP of the American Cancer Society Cancer Action Network, Inc.

2. Lessons from COVID-19 can improve outcomes for all patients.
There’s no silver lining to the pandemic—but there’s a lot we can learn from it about how to improve the patient experience, especially when it comes to clinical trials. 

COVID-19 made us realize “a lot of the assumptions we had about how we had to run clinical trials were foolish,” said BIO President and CEO Dr. Michelle McMurry-Heath. For example, we can use telemedicine, reduce the number of times patients need to come to the clinic, and be more flexible.

“We need to capture these lessons from COVID and make sure we apply them to every disease area going forward,” she added.

 
BIO's Dr. Michelle at the BIO Patient and Health Advocacy Digital Summit
 
3. The industry “should look like our nation.”
The number one reason why people of color don't participate in clinical trials is because nobody asks them,  said Linda Goler Blount, MPH, CEO of the Black Women's Health Imperative .

To address the problem, BIO launched the BIOEquality Agenda, which focuses on health equity and clinical trial diversity, the talent pipeline, and economic development.

So, what does success look like?

“We will no longer be asking the question, how do we make our clinical trials patient user friendly and/or more diverse,” said Dr. Michelle. “We will have trials that are representative of the patients we are trying to serve.”

“I would love for our industry to look like our nation," she concluded.

 

More Health Care News: 

HHS: HHS, DOD collaborate on plans to purchase Lilly investigational therapeutic to treat COVID-19
“This agreement with Eli Lilly is part of Operation Warp Speed’s efforts to position the federal government to distribute potential therapeutics, allowing faster distribution if trials are successful,” said HHS Secretary Alex Azar. 

USA TODAY (Opinion): I'm the FDA point person on COVID-19 vaccines. We'll make sure they're safe and effective.
“We pledge to do our duty to the best of our ability, independently, and without conflicts of interest, and we will be transparent about FDA decisions,” writes Dr. Peter Marks, Director of the FDA’s Center for Biologics Evaluation and Research (CBER).

 
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Wheels up to more sustainable air travel

 
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Remember business travel? Microsoft and Alaska Airlines have partnered to make it more sustainable—all thanks to biotechnology. 

The partnership: Microsoft employees flying between the company’s headquarters in Washington State and California on Alaska Airlines will travel on flights powered by sustainable aviation fuel (SAF).

The fuel: Supplied by SkyNRG, the SAF is made from waste oil produced in the United States by World Energy “and delivers a carbon reduction of approximately 75% compared with fossil jet fuel.” 

Why it matters: With new data showing as many as 18% of COVID-19 deaths are linked to air pollution, it’s critical we reduce carbon emissions—and replacing fossil fuels with SAF can lead us in the right direction.

This partnership will “support the development of the SAF industry by creating a stable demand signal, increasing supply, and reducing the cost,” says the announcement. But that’s just the first step. Next, we need to do this on a grander scale—by supporting the Renewable Fuel Standard (RFS) and national and state low-carbon fuel standards, as well as legislation like the Growing Climate Solutions Act, which will support the growth of the industry and carbon capture programs.

 

More Agriculture and Environment News: 

The New York Times: As election nears, Trump makes a final push against climate science
“The Trump administration has recently removed the chief scientist at the National Oceanic and Atmospheric Administration, the nation’s premier scientific agency, installed new political staff who have questioned accepted facts about climate change, and imposed stricter controls on communications at the agency.”

 
 
 
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I am BIO

Meet Patient Advocates: Working Towards One Shared Goal

I am BIO: Meet Patient Advocates
 
 

“It's not so much what is BIO,” said Merck’s Dr. Julie Gerberding to open the BIO Patient and Health Advocacy Digital Summit. “It’s really important that we think about who is BIO.” 

Across the industry, from biopharmaceutical company board rooms to patient advocacy coalitions, we have one shared goal: improving patients' lives. 

So, who is BIO? It’s a mom who found her life’s purpose in her daughter’s rare disease diagnosis. It’s the student working to end opioid addiction. It’s advocates for access to care, including mental health care.  

Meet these inspiring patient advocates.

Visit www.bio.org/iambio to share your story.

 
 
 
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BIO Beltway Report
BIO Beltway Report
 
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President Trump’s Thursday: Campaign rally in Tampa, FL, then heading to North Carolina for a troop engagement at Fort Bragg followed by a rally in Fayetteville.

What’s Happening on Capitol Hill: Five days until the election.

 
 
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