Harnessing the Power Of The Asthma Experience

The Next Breath Editorial Team

June 2020

UNDERSTANDING SEVERE ASTHMA

Learn how the research community taps into the asthma experience of those who know it best – people with asthma – and how these insights help advance care.

We sat down with global medical leaders Dr. Paul Rowe and Dr. Yamo Deniz, of Sanofi Genzyme and Regeneron respectively, to discuss the ways in which they engage with asthma patients to help guide their work and why it is vital to do so.

Why is it important to understand the experience of those living with severe asthma?

Dr. Deniz: People with severe asthma are their own experts in knowing the ins and outs of what it means to live with their disease. One important goal for us as medical leaders, is to try to be “the bridge”; to listen carefully to their experiences so that we can search for more meaningful solutions to address unmet needs and have a real-life impact. That’s why it’s important to regularly engage with patient advocacy organizations and involve patients in different aspects of research and development.

How are people living with asthma getting involved in research today?

Dr. Rowe: As Yamo shared, relationships with the patient community are critical, and we do a lot of work together. The way we capture this knowledge varies across our company. For example, we might host a workshop with patient advocacy groups and people with severe asthma to have in-depth conversations on topics like ‘what does asthma control really mean to you.’ We incorporate this perspective into our research, such as the design of studies to ensure they are set up to answer the right questions.

Dr. Deniz: We recognize that the number of patients who are involved in this kind of research is relatively limited. And unfortunately, it’s often the groups of patients who are most in need of new ways to manage their disease who are least represented in research across the healthcare industry. One way in which we are trying to move the needle in this area is by looking more closely at specific settings – for example, patients in inner-city populations – so we can better understand their unique needs and challenges.

How do you make sure that education is a two-way street? What are you doing to help patients better understand their disease?

Dr. Rowe: Disease education is really important since the more people understand their disease, the more they can feel empowered to take an active role in advocating for their own needs and care.

An example that comes to mind is the association between asthma and another disease called chronic rhinosinusitis with nasal polyposis (CRSwNP), which can both result from underlying type 2 inflammation. Up to 43% of people with severe asthma also live with the symptoms of nasal polyps,1 which are teardrop-shared growths in the sinuses and nose.2,3 Because of the underlying inflammation and some overlap in symptoms, careful diagnosis and management of both conditions is important.3,4,5,6

In our conversations with the asthma community, we’ve learned so much about the daily challenges faced by people living with severe asthma – and by those living with asthma and another coexisting disease. Along with applying those learnings to our research efforts, we work to share them back with the community by educating about asthma science and connections with other diseases. By developing a deeper understanding of the science behind their disease, we can help people see their asthma in a different light and feel more empowered and understood.

What advice would you give somebody who lives with asthma and is reading this?

Dr. Rowe: Learn as much as you can about your asthma. This could mean going online to research, setting up an appointment with a respiratory doctor to ask new questions, or reaching out to asthma patient groups who may be able to connect you with educational resources and opportunities to get involved in research like those discussed above.

Dr. Deniz: I agree, and I would also add that you should feel comfortable advocating for yourself. I have spoken with a lot of patients who have signs of severe asthma but don’t have a respiratory specialist as their primary asthma care provider. Patients should feel comfortable talking with their doctor about the management of their disease, including whether seeing a specialist makes sense.

As a starting point, you can find resources to help you learn more about severe asthma and start new conversations in our I Have Asthma hub.

References:

  1. 1. Heffler, Enrico, et al. “The Severe Asthma Network in Italy: Findings and Perspectives.” The Journal of Allergy and Clinical Immunology: In Practice. 7.5 (2019): 1462-1468.
  2. 2. Kato A. Immunopathology of chronic rhinosinusitis. Allergol Int. 2015; Apr;64(2):121-30.
  3. 3. Newton JR, Ah-See KW. A review of nasal polyposis. Ther Clin Risk Manag. 2008;4(2):507-12.
  4. 4. Langdon C, Mullol J. Nasal polyps in patients with asthma: prevalence, impact, and management challenges. Journal of asthma and allergy. 2016;9:45.
  5. 5. Fokkens WJ, Lund V, Bachert C, Mullol J, Bjermer L, Bousquet J, Canonica GW, Deneyer L, Desrosiers M, Diamant Z, Han J. EUFOREA consensus on biologics for CRSwNP with or without asthma. Allergy. 2019 Dec;74(12):2312-9.
  6. 6. Massoth L, Anderson C, McKinney KA. Asthma and chronic rhinosinusitis: Diagnosis and medical management. Medical Sciences. 2019 Apr;7(4):53.

Date of Approval: May 2020 | MAT-GL-2000595

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The Next Breath Editorial Team

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12/7/2020 12:00:00 AM

Allergist and immunologist Dr. Autumn Burnette shares her advice for teens with asthma and their caregivers.

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Learn more about oral corticosteroids, including their use as an asthma medicine and when to talk with a doctor about ways to achieve better asthma control.

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The Next Breath Editorial Team

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8/4/2020 12:00:00 AM

Severe asthma has had a big impact on Amit’s life. Now that she has found a better level of control, its inspired a new career path.

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The Next Breath Editorial Team

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7/7/2020 12:00:00 AM

Unpacking EFA’s Active Patients ACCESS Care Report to discover how diagnosis and care can be improved for people living with asthma.

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The Next Breath Editorial Team

6/3/2020 12:00:00 AM

6/3/2020 12:00:00 AM

Learn how the research community taps into the asthma experience of those who know it best – people with asthma – and how these insights help advance care.

What’s Your Asthma Personality? Take This Quiz to Find Out!

The Next Breath Editorial Team

4/28/2020 12:00:00 AM

4/28/2020 12:00:00 AM

Everyone’s asthma is unique, but people can have similar experiences. Take this 5-question quiz to find out your “asthma personality” and resources to explore today.

LET’S TALK ABOUT ASTHMA: TIPS FOR STARTING A MEANINGFUL CONVERSATION WITH FAMILY AND FRIENDS

The Next Breath Editorial Team

3/31/2020 12:00:00 AM

3/31/2020 12:00:00 AM

Life with uncontrolled persistent asthma can be tough, but so can talking about it! That’s why we’ve gathered these tips to help you start a meaningful conversation with family and friends.

A Checklist to Help You Better Understand Your Asthma

The Next Breath Editorial Team

2/17/2020 12:00:00 AM

2/17/2020 12:00:00 AM

Meet Dr. Maureen George, the behavioral scientist who helped develop a simple, but powerful description of severe asthma and checklist that are helping people understand and talk about their disease.

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The Next Breath Editorial Team

1/1/2020 12:00:00 AM

1/1/2020 12:00:00 AM

Better asthma control is possible. Use these tips to jump-start a conversation with your doctor about addressing your symptoms.

Type 2 Inflammation: An Often Overlooked Contributor to Asthma

The Next Breath Editorial Team

12/5/2019 12:00:00 AM

12/5/2019 12:00:00 AM

Dr. Lawrence Sher, Medical Director at Palos Verdes Medical Group and a physician at Peninsula Research Associates, discusses type 2 inflammation, an underlying cause of a certain type of asthma,1 and what true asthma “control” could look like.

How One Woman Refused to Let Asthma Control Her Life

The Next Breath Editorial Team

12/1/2019 12:00:00 AM

12/1/2019 12:00:00 AM

Tammy was diagnosed with asthma as an infant. Throughout her childhood, her asthma was severe but under control with help from her doctor, who prescribed an inhaler and other medicines.

THE A-HA ASTHMA MOMENT THAT HELPED LYNN TAKE BACK CONTROL

The Next Breath Editorial Team

11/5/2019 12:00:00 AM

11/5/2019 12:00:00 AM

Lynn talks about the moment when she realized her asthma was uncontrolled and she needed to make a change.

ARE THESE 5 MYTHS PREVENTING YOU FROM ASTHMA CONTROL?

The Next Breath Editorial Team

10/2/2019 12:00:00 AM

10/2/2019 12:00:00 AM

People living with asthma often overestimate their level of control. That’s why we’ve looked at five common myths about asthma and unpacked the facts.

Moving the future of asthma forward, together

Working together, we can bring more awareness to severe asthma,
illuminate the latest science and empower people to take action
to strive for better asthma control.

Start using your next breath today to inspire others to get informed and
check back soon to find more ways to get involved.

#TheNextBreath