About 50 advocates attended in person. They participated in 75+ meetings with members of Congress – some of them virtually due to COVID-19 restrictions.
Online, a total of 343 advocates joined AADCH virtually. All together, virtual advocates sent 290+ letters and emails to members of Congress on May 4.
The goal of the advocacy event: support important, life-saving legislation impacting people with asthma, allergies, COVID-19 and related conditions. Allergy & Asthma Network’s 2022 Policy Priorities are:
- Improve access to safe, affordable medical care and innovate treatments.
- Extend asthma and allergy funding for programs supported by federal agencies.
- Reduce health risks in asthma and severe allergy emergencies.
- Reduce environmental health hazards to support lung health and health equity.
- Support COVID-19 prevention and treatment, including long COVID.
“Advocacy involves our state and federal efforts. It also involves our regulatory policy and payer policy efforts,” says Tonya Winders, President and CEO of Allergy & Asthma Network, during a Congressional Lunch Briefing in the Rayburn House Office Building. “We work in all of these areas to ensure we can get the right treatment to the right patient at the right time, with the fewest barriers.”
Visit Allergy & Asthma Network’s new advocacy site – advocacy.allergyasthmanetwork.org – to find out how you can “Take Action” to support asthma and allergy legislation. In just a few clicks, you can send letters and emails to members of Congress and state representatives.
Here’s a complete recap of the AADCH Congressional Lunch Briefing on May 4.
Congressional Asthma & Allergy Caucus: Rep. Debbie Dingell (D-MI) on the Family Asthma Act, prescription drug costs
Rep. Debbie Dingell serves as co-chair of the Congressional Asthma & Allergy Caucus. She highlighted the Elijah E. Cummings Family Asthma Act. The bill would expand the U.S. Centers for Disease Control (CDC) National Asthma Control Program to all 50 states. It would require states to develop a public health response to asthma, especially for underserved communities.
The legislation is bipartisan. Rep. Fred Upton (R-MI), also co-chair of the Congressional Asthma & Allergy Caucus, has co-sponsored the bill along with Rep. Brian Fitzpatrick (R-PA) and Lisa Blunt Rochester (D-MI).
“The bill will increase asthma education and awareness nationwide and will help those suffering from asthma gain access to the treatment that’s right for them,” Dingell says.
Lawmakers are also focused on ensuring access to high-quality, affordable healthcare. They want to lower out-of-pocket costs of prescription drugs, including asthma inhalers. Dingell aims to work on asthma legislation similar to the Affordable Insulin Now Act. That bill would cap out-of-pocket costs of insulin at $35 per month for people with private health plans and Medicare. The bill passed the House in April 2022.
“I’ve met too many people that are paying ridiculous prices for prescriptions and who have watched the cost of drugs exponentially increase,” Dingell says.
‘State of Asthma and Allergy Care In the United States’: Mark Corbett, MD, President of the American College of Allergy, Asthma & Immunology (ACAAI)
ACAAI continues to be active in advocacy. President Mark Corbett, MD, was joined by several allergists canvassing Capitol Hill to advocate for key issues affecting health professionals.
At the Congressional Lunch Briefing, Dr. Corbett said expanding and covering telehealth visits through medical insurance continues to be a primary focus for ACAAI.
“The one positive that may have come out of this whole COVID-19 pandemic was the use of telemedicine,” Dr. Corbett says. “It allows us access to patients who may not have been able to get in … Telehealth gives them the ability to get good care. Hopefully by addressing their concerns early, we can keep them out of the emergency room and keep them healthier.”
Dr. Corbett says ACAAI’s advocacy initiatives include:
- reducing burdens on the prior authorization process, a hurdle for many allergy practices;
- reducing Medicare cuts for allergies;
- supporting government funding for electric school buses;
- improving access to care for senior citizens.
“We’re going to continue to advocate for our patients and our members to help increase access to specialist care and appropriate treatments,” he says.
Spotlighting the importance of home asthma interventions: Alejandra Nunez, U.S. Environmental Protection Agency (EPA)
Alejandra Nunez, Deputy Assistant Administrator, Office of Air and Radiation, at EPA discussed how the federal agency works to improve public health indoors and outdoors. She says quality asthma care must involve tailored interventions that:
- reduce outdoor pollution;
- reduce indoor triggers in homes and at school.
EPA works with other federal agencies to expand healthcare reimbursement for home asthma interventions. During interventions, specialists work with homeowners and renters to find ways to reduce asthma triggers. It’s particularly important for underserved communities. “We’re really excited about the fact that it’s becoming more affordable. This is our commitment,” Nunez says.
Allergy & Asthma Network joined with EPA in recognizing the Utah Department of Health Asthma Program with the 2022 National Environmental Leadership Award in Asthma Management.
The award is part of EPA’s effort to increase public awareness of asthma and partner with organizations that reduce the risk from asthma in communities nationwide.
The Utah Department of Health Asthma Program provides comprehensive asthma control services in Utah. It focuses on underserved, at-risk communities in urban, suburban and rural areas. The Asthma Home Visiting Program, an in-home self-management program, has reported significant reductions in asthma-related emergency department visits and hospitalizations.
Asthma Management Guidelines, Promising Research: Remarks from James Kiley, PhD, of National Heart, Lung and Blood Institute (NHLBI)
James Kiley, PhD, the Director of the Division of Lung Disease at NHLBI, discussed the national Asthma Management Guidelines focused update released in 2020. The agency is focused on disseminating the Guidelines update in the professional community. NHLBI also developed decision tools to engage doctors and patients alike.
“We use that as a centerpiece to help anchor our efforts about what we need to really push forward to get better control of the disease,” Kiley says.
The revised Guidelines are aimed at improving asthma testing, management and treatment. They support informed Shared Decision-Making between patients and their doctors.
Kiley also shared some research studies about key asthma topics. Data supports a “dramatic increase in the use of telemedicine” by asthma patients during the COVID-19 pandemic, he says. “In Durham, North Carolina, you can see double-digit increases in telemedicine visits in 2020 to nearly 1,400 during the pandemic.”
Kiley also cited research showing an increase in outpatient asthma visits during the pandemic. Meantime, there was a dramatic decline in asthma attacks that required hospitalization. Several studies have highlighted this decrease.
“What we’re seeing is how people are accessing the healthcare system differently now to get help managing their disease,” Kiley says.
‘All of us together, we can do better’: Testimonial from Laonis Quinn, RN
Laonis Quinn, a registered nurse from Detroit, told advocates the story of her son Anthony J. Chapman, who passed away after a severe asthma attack in 2007.
Anthony’s care slipped through the cracks after his pulmonologist no longer accepted his health insurance provider. He turned to a free clinic that provided substandard care. “He was in the emergency department more times than I could ever remember,” Laonis says. “That became our clinic – the emergency room.”
A year later, he died. “And to this day, I’m still heartbroken.”
Laonis founded the Breathe Anthony J. Chapman Foundation to raise awareness and educate people on the impact of asthma. She serves on the Board of Directors at Allergy & Asthma Network.
“There is absolutely no reason why anyone should pass away from asthma,” Laonis says. “Of course it happens. But why is this happening? We need to fix the why … I have met so many moms who have had to bury their young children. And I’m heartbroken every time I have to witness a mother tell me a story about how their child has suffered.”
“No mother should have to face that fear. No mother should have to face that reality,” says Tonya Winders. “And no young adult should be faced with the choice of not having access to quality healthcare in this country.”
Transcript of the Allergy & Asthma Day on Capitol Hill (AADCH) Briefing
Below is an edited transcript of the May 4 Congressional Lunch Briefing held at the Rayburn House Office Building in Washington, DC. If you notice any inaccuracies in the transcript, please let us know at [email protected].
Tonya Winders: I’m Tonya Winders, the President and CEO of Allergy & Asthma Network. And it is my distinct honor and pleasure to welcome everyone today to Allergy & Asthma Day Capitol Hill 2022. After a two-year hiatus of being all virtual, it truly is a pleasure to be back here in the Rayburn House Office Building. And we are grateful for the staff, especially the help of Hannah Salazar and the staff of Representative Debbie Dingell for getting us to this point today. Without the support of these members, we would not be gathered here in this room after a very long two years.
We also want to welcome our online community. We have over 300 people registered to participate in our lunchtime briefing today as we help to raise the awareness of the policies that are affecting the 100 million Americans living with atopic and respiratory conditions.
I couldn’t start our program without first just thanking our corporate sponsors and supporters for being here today, as well as our professional society supporters – the American College of Allergy, Asthma & Immunology. This is a longstanding partnership that has allowed us to work together on hosting this annual day on Capitol Hill.
The program today is one that is going to focus on the highlights of our 2022 policy priorities, as well as provide updates from several agencies that our community benefits from the service of their regulatory efforts in our U.S. healthcare system.
We’ll hear from the American College of Allergy, Asthma & Immunology President Dr. Mark Corbett. And then we’ll also hear from EPA and NIH before also sharing a few of our own policy priorities and the things that we are here talking with members of Congress about today.
As we always do, we like to start with the why, the mission of why we are here. And it really comes down to the work that we have been doing at Allergy & Asthma Network and the work of our community since 1985, which is working together to end needless death and suffering due to asthma, allergies and related conditions at the network.
We work in four key mission areas:
- Outreach, which is driving awareness of these conditions;
- Education, which is developing evidence-based, guidelines-based education materials for patients, caregivers and healthcare providers alike, as well as policymakers;
- Advocacy, which includes our state and federal advocacy efforts, as well as our regulatory policy efforts and our payer policy efforts. So we work in all of those realms to ensure we can get the right treatment to the right patient at the right time with the fewest barriers.
- Research, where we are devoted to bringing the basic and clinical science into the real world through translational, research in focus groups, surveys, recruitment and retention in clinical trials, and specifically diversity in clinical trials.
And so you’ll hear a great deal about some of our efforts and how this ties into our policy priorities today. So what are those policy priorities? What are the things that matter most to those close to 100 million Americans? Every day we have helpline calls to the Network, we have emails to the Network. We’re engaging in local communities. And these are the things that we hear are the greatest barriers to care.
First of all, we highlight access to medical care and treatment. We know that even once you get that appropriate diagnosis, how do you get access to the right treatment – especially when the treatment may be new or innovative, and when you have been living with this condition for a long time.
That is a policy priority that drives a lot of our activity and engagement, and some of the specific asks that we’re looking at here today.
Secondly, we highlight asthma and allergy program funding. We know that there’s a continued need for fiscal year 2023 to have funds dedicated to allergy and asthma research, as well as to ongoing programs at CDC for the National Asthma Control Program, EPA, HUD and HRSA. We have a number of apps that we are including in our continued support for asthma and allergy program funding, reducing health risk for allergy and asthma emergencies.
Over the years, Allergy & Asthma Network has really been at the forefront of ensuring that students have access to their emergency medications, whether they’re in the school setting, in the daycare setting, in a public setting. And we have advocates here who have actually moved that effort forward in their own states and are beginning to implement that stock albuterol and stock epinephrine throughout the rest of the country. We are so grateful for the collective efforts at both the federal and state level to advance that policy priority.
Next is the mitigation of environmental health hazards. This includes both indoor and outdoor air and clean water. We know the importance, especially for those of us living with compromised immune systems and/or lung health, of clean air and clean water, whether that be indoor or outdoor. We’ll hear more about that from our partnership with EPA in just a bit.
And then, finally, we highlight COVID-19 prevention and treatment. We would certainly be remiss to not have a policy priority in relation to the pandemic that has dominated headlines and most of our personal lives for the last two years. At the Network, we sprang into action in March of 2020 and began working diligently to ensure that we had equal access to COVID-19 testing, and to address COVID-19 vaccine hesitancy. And now we are moving into COVID-19 treatment access. So we are very excited about the work and some of the legislation and policies that are being put forth and moving throughout Congress to support the COVID-19 community and especially those long COVID patients.
It is always our pleasure to welcome members of Congress into our lunch briefing each year. And this year, unfortunately, the House of Representatives is on recess. So we were honored that Representative Debbie Dingell from the great state of Michigan would record and spend some time with us from her home today.
U.S. Rep. Debbie Dingell (D-MI): Good afternoon. I want to thank everyone for being here today and tell you how great it is to be with you for Allergy & Asthma Network’s advocacy day on Capitol Hill. More importantly, thank you for your unwavering commitment to this cause.
As you all know, nearly 25 million Americans suffer from asthma, and more than 50 million Americans suffer from allergies. My home state of Michigan has one of the highest prevalence rates of asthma in the country. Together with my Congressional Asthma & Allergy Caucus co-chair and dear friend Fred Upon (R-MI), we’ve recognized this month as Asthma and Allergy Awareness Month to bring awareness of health and economic concerns tied to asthma and severe allergies. These chronic conditions plague Americans of all ages, genders and backgrounds, but they pose the greatest threat to the underserved, the elderly and our children.
Our work doesn’t stop there. We have at the Caucus requested increased federal funding for the U.S. Centers for Disease Control and Prevention National Asthma Control Program to help states monitor and treat asthma. We have requested updates to food labeling requirements to protect those with severe allergies from accidental exposure to hidden allergens.
Together with Representatives Upton, Fitzpatrick and Blunt Rochester, we introduced the Elijah E. Cummings Family Asthma Act, named after my dear friend who was a tireless advocate for those living with asthma. Our legislation expands the CDC’s National Asthma Control Program to all 50 states. The program will increase asthma education and awareness nationwide and will help those suffering from asthma gain access to the treatment that’s right for them.
We also understand the need to bring greater relief to individuals and families, and we’re fighting tirelessly to expand access to high-quality, affordable healthcare and to lower the out-of-pocket costs of prescription drugs. I’ve met too many people that are paying ridiculous prices for prescriptions and who have watched the cost of drugs exponentially increase.
For me, one of the reasons I feel so strongly about this is, I met a mother who was working two jobs, living below the poverty line, and had a child with asthma. She told me at a town hall meeting that her child’s inhaler cost her $800 a month and she had no insurance. Mothers shouldn’t have to think about that. Inhalers save lives and should be affordable. No family should ever have to choose between meeting their family at the table or giving their child a lifesaving drug.
And this is even more critical for those living with chronic conditions. Asthma and allergies are so important to treat, and with treatment, you can live a very normal life. It’s clear that more work is needed to make sure children and adults who are suffering from asthma and allergies have access to the medicine that helps them breathe and gives them quality of life. And that’s why I am so heartened by your efforts today. By sharing patient stories and boosting awareness of asthma and allergies, you play a key role in educating lawmakers and educating the American public.
I’m not going to stop, I promise you. I’m going to continue my efforts here in Congress to bring the help that you need, whether it’s through funding for research or legislation to lower the cost of healthcare.
I plan, by the way, to introduce legislation similar to the one that would lower the cost of insulin, except it would lower the cost for inhalers – because most people don’t know how expensive those inhalers are.
And I know that our combined efforts are going to help Americans across the nation lead healthier lives. Thanks for inviting me to be here with you today and for your dedication to ensuring no more lives are lost to these treatable and manageable conditions.
Tonya Winders: Thank you, Representative Dingell. These are such poignant words for such a time as this. And definitely, Representative Upton, as the co0chair of the Congressional Asthma & Allergy Caucus, sends his regards. He has been with us in years past.
It’s now my pleasure to bring to the podium Dr. Mark Corbett, who is the current President of the American College of Allergy, Asthma & Immunology, to provide us with the current state of allergy and asthma in the United States.
Mark Corbett, MD: Thank you, Tonya. And we thank you for the efforts you put forth. We’ve had two or three decades working with Allergy & Asthma Network and we certainly look forward to continuing that relationship as we move forward.
With the advances we’ve had in diagnosis and treatment, we’ve had guidelines from the NIH 20 years now for asthma. We still have issues in treatment of allergies and asthma in the United States. They do have a profound effect on the daily life of our patients. We know there are racial and ethnic disparities that create barriers to care.
Environmental challenges are likely to increase. In fact, global warming increases pollen counts. It’s good for my business, not good for the patients. COVID-19, obviously, threw a wrench into everything and created uncertainty. A patient’s ability to get into the office and get treatments that they need in the economic realities of healthcare, as the congress member just mentioned, limits the ability for them to get care they need.
This slide, Tonya had it up this morning – it’s good to go over here. There are about 25 million patients with asthma. And one in 10 children have asthma. Costs associated with asthma care with medications, hospitalizations and missed work and school days borders on $80 billion. And this is from 2019. I believe it’s probably higher now due to just a variety of things.
And the point I like to make on this is, yes, there are fatalities and issues with allergic diseases, but it’s not like we’re talking about cancer or heart disease. It’s a quality of life issue. These are mostly patients in their formative years: children in school, young adults. And they’re miserable and they can’t function. So it’s really more about quality of life. And if you do surveys on quality of life with allergies, just allergic rhinitis, these patients score as poorly as patients with heart disease. So again, it’s a huge issue for these people who are in more productive years of their life.
As far as the environmental allergies, we know one in five patients have them in Kentucky, it’s probably more than that. We seem to win the award every other year or so. Again, it’s about $8 billion in cost. And we know that a high majority, especially children with asthma, do have environmental allergies also.
And again, there are life-threatening allergies. Obviously, these are the ones we worry about the most – patients with food allergies. And we know one in 12 children have food allergies. And I’m reading on Twitter all the time about parents still having issues and barriers when they’re on airplane flights and people downplaying it. ‘Oh, you’ve got an EpiPen. What does it matter? They just use that.’ Again, there’s still a lot of information we need to get out and Allergy & Asthma Network is doing a great job with that. Food allergies are about $25 billion in cost. There are fatalities for about 150 to 200 for foods, about 40 with stinging insects, 400 with medication. We want to get those numbers down to zero if at all possible.
What’s been going on recently in the field? Well, we understand now that with asthma, we thought it was one disease, but we realize now that’s not really the case. It’s really a spectrum of diseases. And patients, depending on their biomarkers and their other confounding factors, fit into a different category. So it’s not just one size fits all. So with that, we’ve got new routes of administration for allergen immunotherapy. We have had allergy shots for years, but now we’ve got oral immunotherapy that is FDA-approved.
We have increased awareness of food allergy prevention. Unfortunately, when I was coming through my pediatric training and early allergy training, it was don’t eat peanuts, eggs, fish until you’re 2 years old. We realize now that was a total mistake and probably a cause of the increased prevalence of food allergy that we see now. And we’ve addressed that. We’re trying to get that information out to the pediatricians and the public.
We have made progress in identifying allergy and asthma phenotypes. So now we can actually, by doing lab work and looking at biomarkers and other factors on patients, identify a particular therapy that may work best for that individual patient. We continue to do that with biologics. I think we’ve got seven biologics now in treatment for allergic diseases. And there’s more being looked at as we speak.
Smart inhalers have come out. So if you have a problem with the patient not being able to take their inhaler, you can now gauge that with the smart inhalers and determine if they’re really getting the inhaler medicine.
Again, we reiterate that racial, ethnic, genetic, and environmental differences occur among our patients, and we have to be aware of that.
What are the College focuses? Well, I think the major focus in my presidential initiative is, there are a lot of people out there who claim to be allergy specialists, but there’s one group that are board-certified allergists. We have 2-3 years of extra training, and we really focus on asthma and allergies as diseases. And I don’t think a lot of the primary care physicians realize there’s a difference, and we’re going to try to get that message out to the primary care physicians.
We’ve already got an issue that we have started getting that message out to nurse practitioners and physician assistants on what the difference is between board-certified allergists in their training and other people that may be practicing allergy. And we just hope that again, our specialized training can be more helpful.
We continue to support the allergy community with the latest on COVID-19, along with Allergy & Asthma Network’s work. We work to decrease racial disparities. My predecessor, Dr. Luz Fonacier, racial disparities was her initiative last year – she was trying to overcome racial disparities in our specialty. And she had a lot of good initiatives that we’re still working with.
We’re promoting and publishing world class research, and we continue to develop resources for healthcare professionals and the public. We just updated our website. I think Dr. Kathleen May did a lot of work on that. We’ve got a brand new public website for our members with a lot of new information. We’re getting about 400,000 to 500,000 individual hits a month on our public website.
We have a great annual scientific meeting every fall, and our meeting, if you get to come to it, is more than just practical things that a physician can take back and use in their practice. We don’t have as much on research as some of the other organizations do, but more practical things to help patient care. The meeting this year, I don’t know if it’s the first time ever, but it’s going to be in Louisville, which is my hometown. So I welcome everybody. You’ll have a great time. I don’t know if there’s ever been a meeting in the president’s hometown, either.
We are providing more physician education and patient public information in Spanish, and we’re looking at other languages for raising awareness of our website. Again, we have 400,000 individual hits per month. We continue to work with lay organizations. We will continue to move forward with Allergy & Asthma Network and others, amplifying that the College is the advocate for the allergist in practice.
What we’ve done recently with Allergy & Asthma Network, we created the Eczema In Skin of Color campaign last summer. We’re still working on getting the information out because eczema isn’t the same in white skin versus Hispanic versus African American. And we’re trying to get information out to our physicians to know that.
We have yardsticks. We just finished a chronic rhinosinusitis yardstick, and these are just sort of like guidelines, but they’re more flexible. So our yardstick, we can update those much more frequently to get all new information and any new drugs that come out so that allergists and our membership have the capability to get that information quickly.
We have Shared Decision-Making tools for nasal polyps and peanut oral immunotherapy, which they can use. And our telehealth toolkit and coding kit has been revamped. And we are really doing a lot to help the allergists in their practice and overcome the hurdles administratively, with the regulations.
We have new webinars, podcasts, CME offerings – a lot of them on health equity topics, including food allergy and primary immunodeficiency. We’re going to have a white paper we’re putting out on equities with food allergy and eczema, which should be published hopefully in the next six months or so. We’ll have updated toolkits on allergy and asthma awareness.
We’re working with the American Academy of Pediatrics on food allergy and school setting information. We’re reviewing and providing comments to the American College of Physicians document on physician payment reform, and also working on increasing the availability of FeNO to use as a screener for asthma.
What are our 2022 priorities in advocacy? We’re going to advocate for continuing coverage of telemedicine benefits. We think that’s very important. And we think the one positive that may have come out of this whole COVID-19 pandemic was the use of telemedicine because it allows us to access patients who may not have been able to get in. Several of us were talking about stories of patients that have had to drive for hours to get to see a doctor. Telehealth gives them the ability to get good care. Hopefully by addressing their concerns early, we keep them out of the emergency room and keep them healthier.
We’re reducing burdens for the prior authorization process, which is becoming more and more of a hurdle for practices. We’re having fixed problems with patient allergen extracts, for instance, venom issues. Venom, at the current time – it costs more to give the venom than we’re getting reimbursed from the insurance company, so that’s going to be an issue. And venom, of course, is lifesaving for our patients. So we’ve got to continue to provide that and work to make that work for our doctors.
We successfully lobbied to reduce Medicare payment cuts to allergies, continue to invest in tracking state legislative activities that affect our patients and providers, and we’re hosting regional town halls to encourage grassroots participation. You can help in all these efforts, working with Tonya and other groups.
Other advocacy things we worked with American Lung Association on clean air for kids, supporting government funding for electric school buses. I worked with Senator Roger Marshall improving seniors’ access to care.
We worked with the American Medical Association and the “No Surprises Act.” We also work to extend the payment adjustment. The AMA every year plans to cut 4% of physicians and allergists. If all the cuts could get implemented at the end of this year, we could take a 9-10% cut in our reimbursement from Medicare. And of course, everybody knows what inflation is doing. So you have those two together. That’s a pretty big hill to climb when you’re trying to run a practice.
I was mentioning earlier to some of the Congress members we were meeting – we actually in the last three weeks in our practice in Louisville had to cut visit spots down because we didn’t have enough staffing to help, nursing staff to help. So I couldn’t get patients in because I couldn’t get help. So that’s going to be an issue that needs to be solved.
So again, at the College, we’re always going to continue to advocate for our patients and our members to help increase access to specialist care and appropriate treatments. We continue to look forward to working with Asthma & Allergy Network in the future. Thank you for everything.
Tonya Winders: Thank you, Dr. Corbett. That is a wonderful update of all things that are going on in the allergy and asthma space and also at the American College of Allergy, Asthma & Immunology. So thank you for being here.
Next, we are going to hear from the Deputy Assistant Administrator for Mobile Sources in the Office of Air and Radiation at the EPA. We welcome Alejandra Nunez from EPA.
Alejandra Nunez: Well, hello everybody. I’m really pleased to be here representing EPA on this very special day. And as Tonya said, EPA really cares about this issue and plays an important role on the mitigation front. Let me talk a little bit about that work.
You all know that EPA’s mission is to improve the lives of people with asthma. This is a high priority for the agency and for us at the Office of Air and Radiation. Why? Asthma exemplifies the impacts of environmental quality and health burdens that really can affect everybody. But we know that especially people of color, low-income individuals, and also children suffer a disproportionate burden from asthma in different ways.
It’s seen in the prevalence of asthma, severity of the disease, health outcomes, the use of healthcare, and the cost of health care. We think about those issues very seriously, particularly with a focus on the worst impact on the communities with the highest exposure. We all know that environmental hazards indoors, like moisture, mold, secondhand smoke, pests, pesticides, and combustion byproducts, as well as outdoor pollution also in particulate matter, make asthma worse.
So our work is really important to improve public health in two ways. We really think that good asthma care must include tailored interventions, both in terms of mitigating outdoor pollution and also in reducing the indoor triggers in homes, in schools. As has already been mentioned, COVID-19 brought the issue of indoor air quality to the forefront. It’s very present in our minds how the air we are in most of our lives is very important. But for EPA, this issue has really been a priority for many years.
Let me talk a little bit about three very important things today – how EPA’s work helps increase access, affordability and also innovation.
So first, in terms of access, we work to ensure that all people with asthma have access to programs for comprehensive asthma care. And also, obviously, our mission is to improve air quality. So we provide tools for individuals, for communities, for homes, schools. And one of those is the website AsthmaCommunityNetwork.org, which has about 5,000 members representing about 1,100 programs. We provide a lot of information, and we also do a lot of technical assistance through webinars. So I invite you to look at this website – we have a lot of webinars that are saved online that provide a lot of very useful information to educate stakeholders around the importance of this issue.
Second, on innovation, EPA helps spotlight the champions who are really working to help improve access and raise the profile of this issue. As we all know, one of the things that EPA does is recognize those programs through the National Environmental Leadership Award. So I know my boss, Joseph Goffman, who is the principal deputy in the Office of Air and Radiation, announced the winning program for this year, the Utah Department of Health asthma program. Congratulations! So the program has achieved, together working with partners through a lot of innovation, really impressive results that are so important. The 80% reductions that the program has secured in reductions in asthma hospitalizations really also translate into really significant returns on investment and cost savings. So in this case, $4.00 per dollar invested, which is very significant. And we really celebrate and really appreciate all the very amazing work that you are doing. Why? Because you are really helping by teaming with the state Medicaid. You are helping deliver services for low-income families, expand access to rural areas, and really figure out a way to get better reimbursement.
So all the pieces together, we really want to celebrate you and want to invite everybody to go to AsthmaCommunityNetwork.org, because you’re going to find more information about the Utah Department of Health asthma program. You’ll read more about this wonderful story that I just previewed very briefly. We also have a webinar on May 24 where we’re going to share more information. So thank you very much for being here and thank you for your leadership.
And then the third thing is affordability. And this is also a really good example of how this administration really is championing the whole government approach. EPA is working with the Department of Health and Human Services and the Department of Housing and Urban Development, and also with state, national and community partners, to expand healthcare reimbursement for home asthma interventions, particularly for disproportionately affected populations.
We know that Medicare spends more than 10 billion annually to treat asthma in children and adults. So thanks to these programs, more children with asthma have coverage through Medicaid or the Children’s Health Insurance Program. So we really are working together with all of these other agencies in the federal family, through the federal Asthma Disparities Workgroup, to think through how we can all come together and share our expertise, and with more resources, increase access.
We’re really excited about the fact that it’s becoming more affordable. This is our commitment. EPA’s mission is to protect public health and to help mitigate and prevent environmental burdens. We are helping to increase capacity. And we believe that with more tailored funding, we really can deliver high quality asthma interventions and also address the equity implications.
I really want to thank you for your time, and I really want to thank the Allergy & Asthma Network for inviting us and for hosting this very important event. Thank you.
Tonya Winders: Thank you, Ms. Nunez. And now we have another one of our federal program partners from the National Institutes of Health, Dr. James Kiley, the director of the Division of Lung Disease at the National Heart, Lung and Blood institute. We have had a longstanding relationship with Dr. Kiley in his division at NIH, and we have been advocating here on Capitol Hill for continued federal funding for so many of the programs that he leads. Thank you.
James Kiley, PhD: Thank you so much, Tonya. It’s really terrific to be here and so wonderful to see everybody in the room after a long hiatus of looking at each other across the computer screens. And for those of you who are still watching us across the computer screens, it’s great that you were able to join us today. This is just a super event.
As you know, it’s Asthma Awareness Month. Yesterday was World Asthma Day. Today is a day to recognize on Capitol Hill, with the leadership of the Allergy & Asthma Network, the importance of this disease and why we need to advocate for increased efforts to get our hands around this in terms of new treatments and cures.
I think that Dr. Corbett did a very nice job of already highlighting for you why we’re here. Tonya did the same thing. This is a very important condition, a disease. As we’re learning more from the research, we know that it’s a very heterogeneous disease. It’s not a single entity, maybe more like a syndrome, but we do know it is the most chronic respiratory disease worldwide. So it is a huge problem.
And it’s one that we’ve already heard affects 25 million people. One in 13 have asthma, five and a half million children. And we heard why it is really critically important that we focus a bit on that population as well to improve their overall quality of life and their ability to learn to play and to lead very effective, productive lives. I won’t dwell on this, because I think most of you in this room are very aware of the importance of asthma.
So what I want to do today, briefly, since it has been a couple of years, I will leave you with is our asthma program at NHLBI. I probably can speak for the National Institutes of Health. They have been active and robust. We continue to fund research in this area. And our investigators, patients and all those who are part of this large family have been doing an amazing job during a very, very difficult time. And I think all of us recognize it has been trying for many individuals trying to conduct research.
So I will try to tell you a little bit about what’s happened over this period of time. We usually do this on a yearly basis. So I can give you a snapshot, but I’m not going to be able to cover all of it because there has been a lot going on. I want to tell you a little bit about the resources that we have available at NHLBI about our ongoing asthma research. And then I’ll touch just a little bit about ongoing activities in the future.
So I think that many of you know that in 2020, we published the update of the National Asthma Treatment Management Guidelines. And here we highlighted six major topic areas where there are recommendations. So since that publication came out in 2020, we have kind of stepped back. And we now have taken out what we call a 360-degree approach to dissemination of a variety of different tools and materials that have all come from that Guideline update. And we’ve now enhanced our digital and social media. We’ve done a lot of web events and CME activities for the professional community. We created a lot of decision tools so that you can engage, not only as a practitioner or a family member with an individual with asthma, but also then communicate with our federal partners – the EPA and others – that are very active in this space around the Guidelines.
We use that as a centerpiece to help anchor our efforts about what we need to really push forward to get better control of the disease. This is an effort for us to really kind of pull it all together. And again, you can see across the spectrum all the different materials that have spun off of that guideline effort. And I won’t be able to tell you all about this. You can go to the website and you can really see this much more in detail. And I hope you do and you use it, because it’s all there for you. That’s why we have developed this material. And by you, I mean the patient, the family member, the provider. It doesn’t really matter how you touch this disease in whatever way in which you touch it. This material, I think, would be very useful to you. You can find a lot of updates, and we want to make sure that you know where to go. The digital toolkit is very neat. It has tools for healthcare professionals. It has a lot of material that you can use. And again, many of you are very familiar with this.
I know Tonya’s group also produces a lot of this material. So together we all kind of cover the spectrum of material that I think would be very helpful as you manage individuals with asthma.
One of the things that we’ve done this past year is that we’ve expanded our breadth of efforts in the national health education on respiratory diseases. And by that, I mean that we have taken, again, a holistic view of respiratory health and disease. We want to portray to the public how we’re translating the research that we’re supporting to make materials available to the broader public about why it’s important that you understand how your lung works, why just understanding the normal respiratory efforts, and then how it all gets somewhat perturbed when you add disease to it.
So our Learn More Breathe Better program is our effort to take a much broader look across the spectrum. And what we’ve done is we’ve incorporated it into our Learn More, Breathe Better program, our National Asthma Education and Prevention Program, so they’re forged together. Asthma is very prominent in this space, as well as our other respiratory diseases. This program started for chronic obstructive pulmonary disease, or COPD. But because there are a lot of similarities between these two chronic airway diseases, we thought it was very natural to bring them together now. And we’ll continue to expand this into other areas of respiratory, pulmonary disease and health so that the public can get a better flavor for what’s going on in this program.
As I mentioned, we have a very robust program, but our research program at NHLBI spans a very broad scope of work, from very basic science, looking at what’s going on in the nucleus of a cell that may be involved in the pathway that leads to asthma pathogenesis all the way up to dissemination of information like what we’re doing with the guidelines. So this is an effort, again, to bring it all together.
Now, who is the target audience? Well, I think that’s important that we try to make sure that we’re tailoring our materials to those people who would best benefit from it. So anyone with symptoms of lung diseases or conditions, people at the highest risks for lung diseases, are clearly important. We’re targeting COPD. We’re targeting asthma. We’re targeting families, caregivers, and both adults and children. So it’s very wide.
And all of the players, all the stakeholders that are involved, whether it’s the health professionals, the voluntary organizations, the foundations, the professional societies, we believe we can kind of rally everyone around under an umbrella program that provides those important, well developed, evidence-based messages.
I want to pivot a little bit now and just finish the next few minutes with just a couple of tidbits of research that have gone on over the past year-plus that I think are worthy of just kind of giving you just a general sense of, and I’m actually going to provide you with a little bit of the data for some of the statements that were made just a few minutes ago. I think this is kind of important to see how the research is really playing out on the materials that people are using to manage the disease and talk about the disease.
So on the left side of this slide, this is, again touching on what COVID-19 has done for us over the past two years in terms of asthma care. And I think this is important because we often get questions about, ‘Do patients with asthma do worse? Are they more vulnerable? Are they more at risk?’ Our research community has jumped on this and has done some pretty good work to try to uncover that.
So the study that’s on the way far corner of the slide here, the table that you see, I think you can mostly see it is a study that compares the electronic health records from data coming out of Durham, North Carolina, more than 5,000 children ages 5 and under 18 years of age with a diagnosis of asthma. And what they wanted to do is look at pre-pandemic and then compare that during a period where we were at the peak of the pandemic, March through February of 2021. And I think you can see that there’s been a dramatic increase in the use of telemedicine in this population. And in this time window, you can see double-digit increases in telemedicine visits in 2020 to nearly 1,400 during the pandemic. So I think it was Dr. Corbett mentioned that his practice is seeing major increases – here’s the data, not just in Kentucky, but in other parts of the country that telemedicine seems to be commonly used and how patients are interacting with the healthcare community.
The second area that I wanted to highlight for you is the increased number of overall outpatient visits during the pandemic in this population. And you can see that’s also been shockingly increased during this period of time. If you scoot over to the right side of this slide, I think the most shocking thing you see here is how the number of asthma exacerbations have really plummeted during this COVID period. What we’re seeing is we haven’t cured the disease, we’re seeing how people are accessing the healthcare system differently now to get help managing their disease.
Another highlight from our research that I thought might be useful for all of you to just get a sense of is, how are people accessing their information to be able to then process the material they need. We’ve supported some research on how people are using the Internet for health related information as it relates to technology. And what’s shown here again on the right side of this slide is using a large data set of kids, teens, 12 to 16 years of age – this comes from Rochester, New York – they examine how students use the Internet to get information about asthma. And I only pulled out a few significant items from the table that was in this paper.
First of all, it’s a minority of students who use the Internet to get their health information – only 45%. But it’s important to look at, who is that 45%? Who are those people? Well, it’s those who are roughly around 13 years of age. More females do it. And they’re also associated with a much higher odds of poor asthma control, which is kind of the important message from the slide that you want to take away. We want to make sure that if they access the information they’re accessing, it’s because their asthma is not controlled.
If you look over on the right side of the slide, you can also see that, using a very large claims database, this is more than 9,500 patients with asthma in the U.S. who were treated with biologic therapy between 2003 and 2019. You can see that the number of people who got six months of therapy divided by those who had a 50% reduction in exacerbation rate to those who had a greater reduction in exacerbation rate. I think what you can see, this may be a little counterintuitive, but those who had the higher exacerbation rate actually benefited most from the biologics.
So again, the novel treatments – we need to figure out how to get those into the hands of those who will benefit from it the most and when to use it. I think this is playing out in terms of how we’ve been doing research over the past couple of years. As you can see, we’re accessing large electronic health databases and looking at the Internet and how people are accessing it, looking at ways in which we can use the big practices and claims databases to really extract information about asthma.
One more on this slide. It’s a busy slide, but it’s actually quite simple. This is some work that was done by Dr. Bryant-Stephens in Philadelphia. And the takeaway here is that if you go in and mitigate in lower income homes in the greater Philadelphia area and you make repairs, whether it’s in the basement or in the attic, wherever it may be, you see huge decreases in healthcare utilization. And this is going to really improve the environment for children who have asthma and are living in those homes. So we’re really very excited about this data. It’s a small study, but I think the proof of concept is here that these are interventions that we need to take into account. We always think about behavior. We think about medicines, drugs, and so forth. But there are other ways to intervene that can have a very important impact.
I think our colleagues at EPA were absolutely spot on with this. I wanted to point out to you just one area that I think is deserving of maybe a bit more attention. This is a study that is the first to demonstrate that prenatal exposure of ambient ultrafine particles is associated with an increase in the development of asthma in both males and females. And it’s independent of air temperature exposure to nitrous oxide during pregnancy. And this figure shows that on the left side, the average concentrations of those in the study – this just happens to come from the Boston area – you can see some clustering of where there’s these ultra-high particles and where the individuals, these pregnant moms are basically exposed to those ultra-high particles. And then you can sort of see over on the right side, the figure shows an increased odds ratio of almost four and a half for the development of asthma in those children. So we need to get our hands around this because this is an understudied area. It’s an emerging area. We need more data here.
What we’re really concerned about here is we have a developing lung, we have a developing immune system, and we really need to make sure that we are not doing harm during those very critical windows of development. And that’s where this study gives us a reason to be thinking about, ‘How do we intervene, how do we clean the air, how do we deal with many things that I think are also important as we take into account the different factors that influence asthma?’
I want to just wrap it up a bit here and just kind of tell you a little bit about ongoing and future activities. One of the things that has been going on for a number of years – this is a very big, almost a half-million person database where we’ve done whole genome sequencing on all of those individuals. And there’s about 26,000 individuals in that database with asthma. And it’s the best database out there, not only to get a handle on the genetic basis of asthma, but also in terms of minority populations, there’s a high prevalence of asthma of African Americans as well as Hispanics in this cohort.
We’re looking at various relationships of how the gene interacts with the environment, with other aspects of the disease itself, the clinical characteristics. And the hope is that we can identify new diagnostic tools and really focus on precision medicine and precise treatments for asthma.
Also, there’s an upcoming inaugural event. It’s a workshop on the International Collaborative Asthma Network. This is a collaborative that we’ve been working on for several years now to improve collaboration across all areas of asthma, so that we can really focus on the best practices, look for preventative approaches and best ways to treat the disease. In fact, this meeting kicks off at the end of this week. I’m very pleased to say I’m involved in that one as well. So look forward to seeing you all again there.
One of the other programs that many of you may know about is our Asthma Empowerment Program, and I’m very happy to say that in 2023 we’ll have some results from that program. These are community-based programs. I don’t have time to tell you all about that, but they have multi-sector interventions built into them. And one of the focus topic areas of these projects is around asthma disparities. So we should learn a lot more about some of the issues that are still unknown in terms of why various populations differ so much in their exposures and prevalence and incidence of asthma.
And then at the same time, I want to just give a shout out to a very big initiative that’s been beginning to be pulled together at NIH related to climate change and the social determinants of health. Asthma has a huge footprint in that program. I’m very pleased to say all of our staff in the lung division at NHLBI are very much involved in this effort, and it’s an institute wide program, very highly supported by our director, and it’s being coordinated across NIH, led by our colleagues at the NIEHS. We hope that this will be an early entry into, how do we get our hands around some of the issues related to climate change, planet change if we want to go beyond just the climate and think about how it influences health outcomes, particularly in areas where we know they are critical – asthma being one of them, as well as various heart disease areas that are very prone to exposure.
We really need to think about this again across domains by looking at it in a multidisciplinary way. And I think that the NIH is off on a wonderful direction to try to put some real significant programs in place that not just highlight the problem but go after the solution. We’re really into solutions now because I think we’ve got a lot of data to tell us a lot about what the problems are.
As always, you can reach us at our websites. There are ways to catch us in many different venues. But please do reach out to us at any time, we’re here to serve you. We work for you. And we really want to make sure the materials we’re creating are the ones that you want and that are going to best help you with your management of your patients. And at the same time, we want to make sure that our research is touching all of you as you interface with the populations we’re trying to address. With that, I’ll stop. And I thank you very much.
Tonya Winders: Thank you so much, Dr. Kiley. I am so excited about so many of those programs and so looking forward to moderating and facilitating the ICAN meeting beginning later this week. It is an exciting time at NIH and what is on the horizon in research and development.
As we conclude our time here this afternoon together, I have asked one of our board members and patient advocates to come and share a bit about why we must continue to have these conversations. It is no longer enough to just sit on the sidelines and to watch those numbers continue to rise, watch that needless burden, the unnecessary death that we unfortunately get the calls about at the Network day-in and day-out.
And there is probably no one more heartfelt in sharing passion for this particular area, especially in the underserved community. And so, Ms. Laonis Quinn, if you will come and please share your testimony with us.
Laonis Quinn: Thank you so much, Tonya. Thank you for inviting me here. We talked this morning about a why. My story, my why, is Anthony Jamar Chapman. He’s my why. He’s my son. He’s 23 years old. He passed away from an asthma attack. And also my mother – I don’t mention my mother too much because my mother and my son together is just a little bit too much. So I talk about my son the most.
He was 18 months old when he was diagnosed with asthma, and he had severe asthma most of his entire life. We had a pulmonologist, she was great. I loved her, and Tony loved her. When he was 7 years old, she retired. We ended up having to go to another pulmonologist. They treated Tony well, he got treatments there. He had all kinds of tests, sleep studies. We went back and forth, changing medications, allergy shots, his hospitalizations, a lot of missed school days.
When he turned 21, the pulmonologist opted out of our healthcare insurance. And after that, I practically begged the doctor, please don’t do this. Why are you doing this? Number one, he’s been coming here his entire life. And where do we go?
So they told me I would have to go to a free clinic after all these years, like 20 years probably, to continue his services. So I found a free clinic. They did the initial assessment for Tony, and then they never, ever saw him again. Not ever. They told me I could come to the clinic to cover these medications monthly. I did that. But in the meantime, Tony was in the emergency department more times than I could ever remember. That became our clinic – the emergency room.
And probably about a year into that, Tony – I think he just kind of gave up. He was just tired of the back and forth. I think he felt the burden was on me having to pay because I tried several times to get public assistance. I was denied several times. I was denied disability for him. They said he was not disabled, but he was disabled. He could hardly work. So I think he just kind of gave up. He passed away. And to this day, I’m still heartbroken. I blamed myself for years and years. I’m a nurse. You see this kid every day. You don’t see the signs of symptoms. You let this slide under you. So the burden of guilt was so much, I was suicidal, I thought about killing myself. I can’t do this anymore.
And so now I energy those efforts into a foundation that I founded in Tony’s name. And we do great work. We do education. I’m certified as an asthma educator. We supply air purifiers, mattress and pillow covers and nebulizers and spacers. We do all kinds of things so that what I witnessed and what I went through and still go through, would not happen to another family.
There is absolutely no reason, there is zero reason, why anyone should pass away from asthma. There’s no reason. I don’t see it. I don’t see a reason. Of course it happens. But why is this happening? We need to fix the why.
Our mothers are still burying their children. I have met so many moms who have buried their 3-year-olds, 15-year-olds, 2-year-olds. Why is this happening? I’m heartbroken every time I have to witness a mother tell me a story about how their child has suffered.
So I thank you all for listening. I thank Tonya. All of us together, we can do better. Thank you.
Tonya Winders: Thank you, Laonis. And again, no mother should have to face that fear. No mother should have to face that reality. And no young adult should be faced with the choice of not having access to quality healthcare in this country. That is a shame. That is an absolute shame.
And so that is why we are committed to these five policy priorities. It’s why we and hundreds others out in the community, as well as here on Capitol Hill today, are advocating for these five policy priorities and some of the specific legislations associated with them.
So you can see here quickly, I’m not going to go through all of these because again, we have support documents. We’re having these conversations within different legislators’ offices and their health aides. Just improving access to medical care and treatment, ensuring that we have appropriate asthma allergy program funding, making sure that we reduce the health risk for those asthma allergy emergencies, mitigating the environmental health hazards – those cluster maps just turn my stomach because we know again that is a result of systemic injustice in this country. And then there’s COVID-19 prevention and treatment.
We will not rest at the federal level, at the state level, until these things are addressed. And so from state capitals to Capitol Hill, it’s the voices of you, our advocates, that will be heard, that will continue to be heard.
We thank you again for your time, for your participation and for your heart for advocacy today. On behalf of the Network, on behalf of the staff that has helped us to be here today and to make sure that this was a successful event, and a sincere thank you from the bottom of our heart as well as to these sponsors, thank you and have a wonderful day.